it will ne the longest cut and paste I've ever done. It's my entire old blog (sorry, I didn't get the comments but you can go read them over at the Forbidden Zone where I can no longer blog. This, my friends, is what you all have missed so far..........
FRIDAY, FEBRUARY 27, 2009
Summer worries
It’s already starting – the panic of “What do I do with my kid for the summer?”
I could leave him at the home daycare he’s in now. The only problem is that he’s fine there for the hour he usually spends there after school, but the full days (when school is closed) can sometimes be a bit taxing on him. The twelve-year-old son of the daycare mom – the one who also has Asperger’s - hits all the kids. Monster hates it. He hates the uncertainty of what sort of day he is going to have there. Sometimes Matt might hit him, and he never knows when.
And if I leave him there, I won’t lose my space and will still have after-school care for next fall.
There is a place here that deals with special-needs kids where Monster spent half days last year. I want him to go there, but he may be too old (7 is the cutoff, and depending upon how much they want him, they can say 7 is too old, or 7 is the oldest he can be). The care would be covered by Monster’s PCA hours. Plus, this place also has OT, PT, friendship club, group music therapy, social skills classes, speech/language therapy, therapeutic listening, and Stressbusters. What I really, really want is for Monster to go here all day and be pulled out of respite for these classes, which I’m guessing are once a week for an hour each and probably don’t overlap each other in any way. He’d still have plenty of time to play with the lids, but we’d be killing about 10 birds with one stone by getting all this therapy done, a bit each day, all summer long, so he isn’t losing important skills over the summer, and hopefully learning new ones.
But for some reason they look upon Monster as a burdensome child, one who needs one-on-one attention (not true anymore, and I’ve told them that), one who can sometimes hit or push other kids (but this school is FOR these kinds of kids – don’t tell me he’s the only one). We would need to make his lunch each day (the prepaid hot lunches where I just refill his account each time the money in it gets low has spoiled us), and drive him both there and back – a trip that takes us many miles north and west of where we work. We can do it.
There is one more option that at once seems perfect and then in the next instant seems dishonest and mean. And maybe not fair to Monster.
There is a charter school I believe is on the brink of having a place for Monster. It is a year-round school with its own before- and after- and off- school days. This place is an affiliate of a center that specializes in the needs of ASD children. It’s one I’ve been trying to get him into for two years, since Monster’s kindergarten year started out hellishly and never really got better.
I have a huge resentment in me that our school district, considered one of the best in the area, refuses to set up a high-functioning ASD program for children like Monster. Every single city surrounding us (and I mean this literally – I’ve called them all) has a high-functioning ASD program. We don’t. So parents at my support group tell me, ask for open enrollment. Well, it turns out that each one of these programs is never less than 75% full, which is ther limit for allowing a child from another district in. And yet, my school district’s special ed supervisor tells me there just isn’t enough NEED in our city for this type of program. And I call bullshit. They set up a classroom for 6 children with EBD problems. You can’t tell me there aren’t at least 6 kids with high-functioning autism or ASD in the entire school district, because then I’d know you’re lying.But no. So my resentment sends me back again and again to the charter school who knows all about these kids AND has NT children too to model for the others nomal behavior. I want to tell them if they ask me, why, yes, I’ll start Monster in second grade the beginning of July, and let him be there a couple of months and see how it works for him. If it doesn’t work, I pull him out and plop him back in his current school the beginning of THEIR school year in September.
Oh, and did I mention that their after-school care takes PCA hours too???
Part of me, the part of me that deep down knows what is right, sees my son in his current school setting and thinks, it may have taken them a year, but they’ve gotten it right. He has so many teachers who care about him and want to see him succeed. He loves his school and says his teachers all “rock”. So, why mess with perfection?
Because part of me still feels that perfection for my son would be a place with children he understands who understand him right back. How funny (or sad) is it that the one child that my son is drawn to in his regular first-grade room, where he spends some time most days, is the other misfit of the whole class? My son’s birthday party was a couple of weeks ago, and one of the children he insisted on inviting was Max, the kid he has developed a special bond with in his 1st grade class. Max came, and when his mom came to pick him up she looked at me, sort of puzzled, and asked, “Soccer, right?”Oh my gosh!! Max from soccer!! Here was a group of 4- and 5- year olds who were at least making an attempt to understand the game but Max and Monster would not go after the ball, run away if it came toward them, and run in the opposite direction when the ball was going the other way. His mom and I just sat and laughed as the serious soccer parents would command their tiny supertars to keep their eye on the ball, yell out, “Oh!! You should have been able to get that one!” and other things. The other parents avoided us like the plague because we obviously didn’t take our 4-year-old’s soccer skills seriously enough and the team kept LOSING because of it (mind you, there were no scorekeepers and nobody was supposed to worry about scores, but some parents just couldn’t help).
He needs to find other children like him, and they all need to find each other and discover they aren’t alone and see themselves through these other kids’ eyes and see how they aren’t wrong or weird, just different. Then they can all go play video games together.
So I try to fight my resentment that my son is forced to be in an EBD class when the school has no excuse to not make a special room just for kids like Monster.
I will have a really hard time if it does come down to getting that envelope in the mail saying, we want your kid at our school. It’s all so complicated, because I have to make everything complicated.
Posted by Pangaia at 1:38 PM 0 comments
Summer worries
It’s already starting – the panic of “What do I do with my kid for the summer?”
I could leave him at the home daycare he’s in now. The only problem is that he’s fine there for the hour he usually spends there after school, but the full days (when school is closed) can sometimes be a bit taxing on him. The twelve-year-old son of the daycare mom – the one who also has Asperger’s - hits all the kids. Monster hates it. He hates the uncertainty of what sort of day he is going to have there. Sometimes Matt might hit him, and he never knows when.
And if I leave him there, I won’t lose my space and will still have after-school care for next fall.
There is a place here that deals with special-needs kids where Monster spent half days last year. I want him to go there, but he may be too old (7 is the cutoff, and depending upon how much they want him, they can say 7 is too old, or 7 is the oldest he can be). The care would be covered by Monster’s PCA hours. Plus, this place also has OT, PT, friendship club, group music therapy, social skills classes, speech/language therapy, therapeutic listening, and Stressbusters. What I really, really want is for Monster to go here all day and be pulled out of respite for these classes, which I’m guessing are once a week for an hour each and probably don’t overlap each other in any way. He’d still have plenty of time to play with the lids, but we’d be killing about 10 birds with one stone by getting all this therapy done, a bit each day, all summer long, so he isn’t losing important skills over the summer, and hopefully learning new ones.
But for some reason they look upon Monster as a burdensome child, one who needs one-on-one attention (not true anymore, and I’ve told them that), one who can sometimes hit or push other kids (but this school is FOR these kinds of kids – don’t tell me he’s the only one). We would need to make his lunch each day (the prepaid hot lunches where I just refill his account each time the money in it gets low has spoiled us), and drive him both there and back – a trip that takes us many miles north and west of where we work. We can do it.
There is one more option that at once seems perfect and then in the next instant seems dishonest and mean. And maybe not fair to Monster.
There is a charter school I believe is on the brink of having a place for Monster. It is a year-round school with its own before- and after- and off- school days. This place is an affiliate of a center that specializes in the needs of ASD children. It’s one I’ve been trying to get him into for two years, since Monster’s kindergarten year started out hellishly and never really got better.
I have a huge resentment in me that our school district, considered one of the best in the area, refuses to set up a high-functioning ASD program for children like Monster. Every single city surrounding us (and I mean this literally – I’ve called them all) has a high-functioning ASD program. We don’t. So parents at my support group tell me, ask for open enrollment. Well, it turns out that each one of these programs is never less than 75% full, which is ther limit for allowing a child from another district in. And yet, my school district’s special ed supervisor tells me there just isn’t enough NEED in our city for this type of program. And I call bullshit. They set up a classroom for 6 children with EBD problems. You can’t tell me there aren’t at least 6 kids with high-functioning autism or ASD in the entire school district, because then I’d know you’re lying.But no. So my resentment sends me back again and again to the charter school who knows all about these kids AND has NT children too to model for the others nomal behavior. I want to tell them if they ask me, why, yes, I’ll start Monster in second grade the beginning of July, and let him be there a couple of months and see how it works for him. If it doesn’t work, I pull him out and plop him back in his current school the beginning of THEIR school year in September.
Oh, and did I mention that their after-school care takes PCA hours too???
Part of me, the part of me that deep down knows what is right, sees my son in his current school setting and thinks, it may have taken them a year, but they’ve gotten it right. He has so many teachers who care about him and want to see him succeed. He loves his school and says his teachers all “rock”. So, why mess with perfection?
Because part of me still feels that perfection for my son would be a place with children he understands who understand him right back. How funny (or sad) is it that the one child that my son is drawn to in his regular first-grade room, where he spends some time most days, is the other misfit of the whole class? My son’s birthday party was a couple of weeks ago, and one of the children he insisted on inviting was Max, the kid he has developed a special bond with in his 1st grade class. Max came, and when his mom came to pick him up she looked at me, sort of puzzled, and asked, “Soccer, right?”Oh my gosh!! Max from soccer!! Here was a group of 4- and 5- year olds who were at least making an attempt to understand the game but Max and Monster would not go after the ball, run away if it came toward them, and run in the opposite direction when the ball was going the other way. His mom and I just sat and laughed as the serious soccer parents would command their tiny supertars to keep their eye on the ball, yell out, “Oh!! You should have been able to get that one!” and other things. The other parents avoided us like the plague because we obviously didn’t take our 4-year-old’s soccer skills seriously enough and the team kept LOSING because of it (mind you, there were no scorekeepers and nobody was supposed to worry about scores, but some parents just couldn’t help).
He needs to find other children like him, and they all need to find each other and discover they aren’t alone and see themselves through these other kids’ eyes and see how they aren’t wrong or weird, just different. Then they can all go play video games together.
So I try to fight my resentment that my son is forced to be in an EBD class when the school has no excuse to not make a special room just for kids like Monster.
I will have a really hard time if it does come down to getting that envelope in the mail saying, we want your kid at our school. It’s all so complicated, because I have to make everything complicated.
Posted by Pangaia at 1:36 PM 0 comments
Summer wories
It’s already starting – the panic of “What do I do with my kid for the summer?”
I could leave him at the home daycare he’s in now. The only problem is that he’s fine there for the hour he usually spends there after school, but the full days (when school is closed) can sometimes be a bit taxing on him. The twelve-year-old son of the daycare mom – the one who also has Asperger’s - hits all the kids. Monster hates it. He hates the uncertainty of what sort of day he is going to have there. Sometimes Matt might hit him, and he never knows when.
And if I leave him there, I won’t lose my space and will still have after-school care for next fall.
There is a place here that deals with special-needs kids where Monster spent half days last year. I want him to go there, but he may be too old (7 is the cutoff, and depending upon how much they want him, they can say 7 is too old, or 7 is the oldest he can be). The care would be covered by Monster’s PCA hours. Plus, this place also has OT, PT, friendship club, group music therapy, social skills classes, speech/language therapy, therapeutic listening, and Stressbusters. What I really, really want is for Monster to go here all day and be pulled out of respite for these classes, which I’m guessing are once a week for an hour each and probably don’t overlap each other in any way. He’d still have plenty of time to play with the lids, but we’d be killing about 10 birds with one stone by getting all this therapy done, a bit each day, all summer long, so he isn’t losing important skills over the summer, and hopefully learning new ones.
But for some reason they look upon Monster as a burdensome child, one who needs one-on-one attention (not true anymore, and I’ve told them that), one who can sometimes hit or push other kids (but this school is FOR these kinds of kids – don’t tell me he’s the only one). We would need to make his lunch each day (the prepaid hot lunches where I just refill his account each time the money in it gets low has spoiled us), and drive him both there and back – a trip that takes us many miles north and west of where we work. We can do it.
There is one more option that at once seems perfect and then in the next instant seems dishonest and mean. And maybe not fair to Monster.
There is a charter school I believe is on the brink of having a place for Monster. It is a year-round school with its own before- and after- and off- school days. This place is an affiliate of a center that specializes in the needs of ASD children. It’s one I’ve been trying to get him into for two years, since Monster’s kindergarten year started out hellishly and never really got better.
I have a huge resentment in me that our school district, considered one of the best in the area, refuses to set up a high-functioning ASD program for children like Monster. Every single city surrounding us (and I mean this literally – I’ve called them all) has a high-functioning ASD program. We don’t. So parents at my support group tell me, ask for open enrollment. Well, it turns out that each one of these programs is never less than 75% full, which is ther limit for allowing a child from another district in. And yet, my school district’s special ed supervisor tells me there just isn’t enough NEED in our city for this type of program. And I call bullshit. They set up a classroom for 6 children with EBD problems. You can’t tell me there aren’t at least 6 kids with high-functioning autism or ASD in the entire school district, because then I’d know you’re lying.But no. So my resentment sends me back again and again to the charter school who knows all about these kids AND has NT children too to model for the others nomal behavior. I want to tell them if they ask me, why, yes, I’ll start Monster in second grade the beginning of July, and let him be there a couple of months and see how it works for him. If it doesn’t work, I pull him out and plop him back in his current school the beginning of THEIR school year in September.
Oh, and did I mention that their after-school care takes PCA hours too???
Part of me, the part of me that deep down knows what is right, sees my son in his current school setting and thinks, it may have taken them a year, but they’ve gotten it right. He has so many teachers who care about him and want to see him succeed. He loves his school and says his teachers all “rock”. So, why mess with perfection?
Because part of me still feels that perfection for my son would be a place with children he understands who understand him right back. How funny (or sad) is it that the one child that my son is drawn to in his regular first-grade room, where he spends some time most days, is the other misfit of the whole class? My son’s birthday party was a couple of weeks ago, and one of the children he insisted on inviting was Max, the kid he has developed a special bond with in his 1st grade class. Max came, and when his mom came to pick him up she looked at me, sort of puzzled, and asked, “Soccer, right?”Oh my gosh!! Max from soccer!! Here was a group of 4- and 5- year olds who were at least making an attempt to understand the game but Max and Monster would not go after the ball, run away if it came toward them, and run in the opposite direction when the ball was going the other way. His mom and I just sat and laughed as the serious soccer parents would command their tiny supertars to keep their eye on the ball, yell out, “Oh!! You should have been able to get that one!” and other things. The other parents avoided us like the plague because we obviously didn’t take our 4-year-old’s soccer skills seriously enough and the team kept LOSING because of it (mind you, there were no scorekeepers and nobody was supposed to worry about scores, but some parents just couldn’t help).
He needs to find other children like him, and they all need to find each other and discover they aren’t alone and see themselves through these other kids’ eyes and see how they aren’t wrong or weird, just different. Then they can all go play video games together.
So I try to fight my resentment that my son is forced to be in an EBD class when the school has no excuse to not make a special room just for kids like Monster.
I will have a really hard time if it does come down to getting that envelope in the mail saying, we want your kid at our school. It’s all so complicated, because I have to make everything complicated.
Posted by Pangaia at 1:35 PM 0 comments
TUESDAY, FEBRUARY 3, 2009
Happy Birthday, Small Dude!!!!!
My baby boy will be seven on the 5th!!!!! Unbelievable! These years have flown by. Most of this time I've spent in panic or worry or plain old self-pity. Luckily I've also spent lots of time watching my baby grow into a wonderful boy who is so unbelievably amazing and unpredictable that he never ceases to surprise me. he is creative, intelligent, devious but delightful, Argumnetative and stubborn, but also sweet and caring and loving and snuggly. He still asks for "Uppy", one of the words he learned befire he turned one. But "uppy" now unfortunately is only lap cuddles because of my sore back and my 65-pound load of a boy.
He's giant. He's wearing 8/10 or medium clothes. He's wearing - get this - size 3-1/2 or 4 men's shoes. He's almost 4-1/2 feet tall.
He was always a big boy. An 8-pound newborn who grew into the fattest little baby you've ever seen off of only breast milk. And now he's my giant 7-year-old monster.
Happy birthday, sweet boy!!! You'll always be my baby and I will always welcome your uppies, no matter how big you get. Thank you for coming into my life, and thank you for being the special child you are. I know how stressed I get over your present and future so often, but I wouldn't trade you for any "simple" child in the world. No other child would be beautiful enough, smart enough, lovable enough, and ask for uppies enough. I'm glad you're in my life. Thank you.
Posted by Pangaia at 9:57 PM 1 comments
FRIDAY, JANUARY 30, 2009
Long self-pity rant.
It’s been one of those weeks. I think my body is adjusting to my new happy pills and so making me less happy. Monster’s birthday is Thursday. This also happens to be the one night I am able to tour the inclusive school I’ve been trying to get him into for two years. The woman is being SO friendly and SO helpful and SO accommodating that she is letting me come to the kindergarten introduction and she is then going to show me around the school. She understands I have been taking (IMO) too much time off for Monster and since her tours are Wednesdays at 11:30, this is a big favor to me.
The day before is M’s swimming. We don’t get home until 7:00 and then it’s time for treat, relaxing, and combing out the mess of hair he is insisting on growing.
Monster seems to have developed separation anxiety which his psychologist says is not really as strange as I think – many Aspie kids go through it much later than NT children.
I worry over his new home daycare and hate that I have to put him anywhere. I think he’s happy there and I think he is well-taken-care-of, but the woman is not exactly warm and kind. I don’t know if I am doing him permanent damage leaving him there. This woman has an Aspie kid herself. He’s 12. He and Monster seem to have a love/hate relationship. He will tell me he is unhappy there and Matthew (the 12-year-old) is mean to him. He knows these things worry me, so I never know what is true and what isn’t.
Tuesday Monster’s social worker is coming over for her monthly meeting. Monday is my singing group. I want to do Monster’s birthday this weekend. Hubby is taking him to the indoor pool Sunday and I thought I could wrap and when they got home we could have our little family party. Hubby says he should just wait until next weekend. EXCUSE ME??? This is the kid who has been asking since before Christmas how many days until his birthday. I will save him a present to open on his birthday, but the rest need to be done Sunday.
Besides, the 8th is Monster’s party and much to my excitement three people have RSVP’d. I Was setting M up for the chance that maybe no one would be able to come and he said to me, “Then I’d get ALL the treat bags!” so it seemed like it might not be a disaster if nobody showed up. Except that I had rented someplace for 10 kids and ended up with our family of 3.
Now, my horrors and fears and terrors and such. I have been involuntarily falling asleep at work. Seriously. I’m sitting there working and then I sort of drift off. I almost got fired yesterday, and so I have to go see my doctor. I don’t know what is going on, but part of me thinks it’s anxiety. It all started when my mean boss told me I wasn’t working out in her department. I thought it would stop when I got my old job back, but it hasn’t. I’m overwhelmed right now and afraid. I have a doctor’s appointment on Monday afternoon, and it’s a fasting one, so I’m pretty excited about that. My HR dept told me I HAD to take the earliest appointment they could give me, even though they had an early morning appt on the 13th. No, too late. And I’m terrified he’ll take my driver’s license away, even though this only ever happens at work, which makes me think I just don’t want to be here. Weekends, I can sit on the computer or read for hours and never feel that weird droopiness that suddenly comes over me and makes me doze off. Maybe there’s something horribly wrong with me. Maybe it’ll happen again and I’ll get fired.
And how will I get to work? And if I take one of those busses for people who can’t work, who will pick up my child?
I think it’s a combination of frustration, feeling overwhelmed, and then work boredom. If I stay busy at work them it doesn’t happen. Or I can fight it off because I can keep my brain occupied. But I look at our February calendar, and I hate looking at it. I don’t want to do it. And to be honest, I don’t want to work anymore, which makes me wonder if subliminally I’m trying to get fired, which is stupid because where I work I just need to wait around until we’re all layed off. I actually hoped I would be one of the people on the list that went out a few months ago when 4,000 people were let go. Then I would be home with Monkey. I wouldn’t have to put him in daycare. I wouldn’t have to worry about summer care. I could put him back into OT. I could find him a social skills class.
The feeling of helplessness I have about M’s life and future seems so much more real to me since the day school program let him go. I feel very isolated. I feel very alone, and that nobody cares about my fight. My support group seems to be falling apart. The last three months it was just me and the moderator. Maybe they’ll cancel it soon.
I do have my first appointment with a counselor who works with parents of special needs children in a couple of weeks. I want to start crying now, and start telling her how helpless and isolated I feel, and how I’m losing my job and losing my mind and I need to keep both because my son needs me. We need our house. We need our security, our quiet, our retreat. Anyhow, I warned this would be a long ramble. I don’t want to go to the doctor on Monday but I guess this is the push I need. I may be diabetic. I may have heart , liver, kidney, thyroid troubles. I guess it’s time to bite the bullet and find out. Monster DOES need me and if I don’t take care of myself I can’t take care of him.
Posted by Pangaia at 11:35 AM 0 comments
Long self-pity rant.
It’s been one of those weeks. I think my body is adjusting to my new happy pills and so making me less happy. Monster’s birthday is Thursday. This also happens to be the one night I am able to tour the inclusive school I’ve been trying to get him into for two years. The woman is being SO friendly and SO helpful and SO accommodating that she is letting me come to the kindergarten introduction and she is then going to show me around the school. She understands I have been taking (IMO) too much time off for Monster and since her tours are Wednesdays at 11:30, this is a big favor to me.
The day before is M’s swimming. We don’t get home until 7:00 and then it’s time for treat, relaxing, and combing out the mess of hair he is insisting on growing.
Monster seems to have developed separation anxiety which his psychologist says is not really as strange as I think – many Aspie kids go through it much later than NT children.
I worry over his new home daycare and hate that I have to put him anywhere. I think he’s happy there and I think he is well-taken-care-of, but the woman is not exactly warm and kind. I don’t know if I am doing him permanent damage leaving him there. This woman has an Aspie kid herself. He’s 12. He and Monster seem to have a love/hate relationship. He will tell me he is unhappy there and Matthew (the 12-year-old) is mean to him. He knows these things worry me, so I never know what is true and what isn’t.
Tuesday Monster’s social worker is coming over for her monthly meeting. Monday is my singing group. I want to do Monster’s birthday this weekend. Hubby is taking him to the indoor pool Sunday and I thought I could wrap and when they got home we could have our little family party. Hubby says he should just wait until next weekend. EXCUSE ME??? This is the kid who has been asking since before Christmas how many days until his birthday. I will save him a present to open on his birthday, but the rest need to be done Sunday.
Besides, the 8th is Monster’s party and much to my excitement three people have RSVP’d. I Was setting M up for the chance that maybe no one would be able to come and he said to me, “Then I’d get ALL the treat bags!” so it seemed like it might not be a disaster if nobody showed up. Except that I had rented someplace for 10 kids and ended up with our family of 3.
Now, my horrors and fears and terrors and such. I have been involuntarily falling asleep at work. Seriously. I’m sitting there working and then I sort of drift off. I almost got fired yesterday, and so I have to go see my doctor. I don’t know what is going on, but part of me thinks it’s anxiety. It all started when my mean boss told me I wasn’t working out in her department. I thought it would stop when I got my old job back, but it hasn’t. I’m overwhelmed right now and afraid. I have a doctor’s appointment on Monday afternoon, and it’s a fasting one, so I’m pretty excited about that. My HR dept told me I HAD to take the earliest appointment they could give me, even though they had an early morning appt on the 13th. No, too late. And I’m terrified he’ll take my driver’s license away, even though this only ever happens at work, which makes me think I just don’t want to be here. Weekends, I can sit on the computer or read for hours and never feel that weird droopiness that suddenly comes over me and makes me doze off. Maybe there’s something horribly wrong with me. Maybe it’ll happen again and I’ll get fired.
And how will I get to work? And if I take one of those busses for people who can’t work, who will pick up my child?
I think it’s a combination of frustration, feeling overwhelmed, and then work boredom. If I stay busy at work them it doesn’t happen. Or I can fight it off because I can keep my brain occupied. But I look at our February calendar, and I hate looking at it. I don’t want to do it. And to be honest, I don’t want to work anymore, which makes me wonder if subliminally I’m trying to get fired, which is stupid because where I work I just need to wait around until we’re all layed off. I actually hoped I would be one of the people on the list that went out a few months ago when 4,000 people were let go. Then I would be home with Monkey. I wouldn’t have to put him in daycare. I wouldn’t have to worry about summer care. I could put him back into OT. I could find him a social skills class.
The feeling of helplessness I have about M’s life and future seems so much more real to me since the day school program let him go. I feel very isolated. I feel very alone, and that nobody cares about my fight. My support group seems to be falling apart. The last three months it was just me and the moderator. Maybe they’ll cancel it soon.
I do have my first appointment with a counselor who works with parents of special needs children in a couple of weeks. I want to start crying now, and start telling her how helpless and isolated I feel, and how I’m losing my job and losing my mind and I need to keep both because my son needs me. We need our house. We need our security, our quiet, our retreat. Anyhow, I warned this would be a long ramble. I don’t want to go to the doctor on Monday but I guess this is the push I need. I may be diabetic. I may have heart , liver, kidney, thyroid troubles. I guess it’s time to bite the bullet and find out. Monster DOES need me and if I don’t take care of myself I can’t take care of him.
Posted by Pangaia at 11:35 AM 0 comments
Long self-pity rant.
It’s been one of those weeks. I think my body is adjusting to my new happy pills and so making me less happy. Monster’s birthday is Thursday. This also happens to be the one night I am able to tour the inclusive school I’ve been trying to get him into for two years. The woman is being SO friendly and SO helpful and SO accommodating that she is letting me come to the kindergarten introduction and she is then going to show me around the school. She understands I have been taking (IMO) too much time off for Monster and since her tours are Wednesdays at 11:30, this is a big favor to me.
The day before is M’s swimming. We don’t get home until 7:00 and then it’s time for treat, relaxing, and combing out the mess of hair he is insisting on growing.
Monster seems to have developed separation anxiety which his psychologist says is not really as strange as I think – many Aspie kids go through it much later than NT children.
I worry over his new home daycare and hate that I have to put him anywhere. I think he’s happy there and I think he is well-taken-care-of, but the woman is not exactly warm and kind. I don’t know if I am doing him permanent damage leaving him there. This woman has an Aspie kid herself. He’s 12. He and Monster seem to have a love/hate relationship. He will tell me he is unhappy there and Matthew (the 12-year-old) is mean to him. He knows these things worry me, so I never know what is true and what isn’t.
Tuesday Monster’s social worker is coming over for her monthly meeting. Monday is my singing group. I want to do Monster’s birthday this weekend. Hubby is taking him to the indoor pool Sunday and I thought I could wrap and when they got home we could have our little family party. Hubby says he should just wait until next weekend. EXCUSE ME??? This is the kid who has been asking since before Christmas how many days until his birthday. I will save him a present to open on his birthday, but the rest need to be done Sunday.
Besides, the 8th is Monster’s party and much to my excitement three people have RSVP’d. I Was setting M up for the chance that maybe no one would be able to come and he said to me, “Then I’d get ALL the treat bags!” so it seemed like it might not be a disaster if nobody showed up. Except that I had rented someplace for 10 kids and ended up with our family of 3.
Now, my horrors and fears and terrors and such. I have been involuntarily falling asleep at work. Seriously. I’m sitting there working and then I sort of drift off. I almost got fired yesterday, and so I have to go see my doctor. I don’t know what is going on, but part of me thinks it’s anxiety. It all started when my mean boss told me I wasn’t working out in her department. I thought it would stop when I got my old job back, but it hasn’t. I’m overwhelmed right now and afraid. I have a doctor’s appointment on Monday afternoon, and it’s a fasting one, so I’m pretty excited about that. My HR dept told me I HAD to take the earliest appointment they could give me, even though they had an early morning appt on the 13th. No, too late. And I’m terrified he’ll take my driver’s license away, even though this only ever happens at work, which makes me think I just don’t want to be here. Weekends, I can sit on the computer or read for hours and never feel that weird droopiness that suddenly comes over me and makes me doze off. Maybe there’s something horribly wrong with me. Maybe it’ll happen again and I’ll get fired.
And how will I get to work? And if I take one of those busses for people who can’t work, who will pick up my child?
I think it’s a combination of frustration, feeling overwhelmed, and then work boredom. If I stay busy at work them it doesn’t happen. Or I can fight it off because I can keep my brain occupied. But I look at our February calendar, and I hate looking at it. I don’t want to do it. And to be honest, I don’t want to work anymore, which makes me wonder if subliminally I’m trying to get fired, which is stupid because where I work I just need to wait around until we’re all layed off. I actually hoped I would be one of the people on the list that went out a few months ago when 4,000 people were let go. Then I would be home with Monkey. I wouldn’t have to put him in daycare. I wouldn’t have to worry about summer care. I could put him back into OT. I could find him a social skills class.
The feeling of helplessness I have about M’s life and future seems so much more real to me since the day school program let him go. I feel very isolated. I feel very alone, and that nobody cares about my fight. My support group seems to be falling apart. The last three months it was just me and the moderator. Maybe they’ll cancel it soon.
I do have my first appointment with a counselor who works with parents of special needs children in a couple of weeks. I want to start crying now, and start telling her how helpless and isolated I feel, and how I’m losing my job and losing my mind and I need to keep both because my son needs me. We need our house. We need our security, our quiet, our retreat. Anyhow, I warned this would be a long ramble. I don’t want to go to the doctor on Monday but I guess this is the push I need. I may be diabetic. I may have heart , liver, kidney, thyroid troubles. I guess it’s time to bite the bullet and find out. Monster DOES need me and if I don’t take care of myself I can’t take care of him.
Posted by Pangaia at 11:35 AM 0 comments
Long self-pity rant.
It’s been one of those weeks. I think my body is adjusting to my new happy pills and so making me less happy. Monster’s birthday is Thursday. This also happens to be the one night I am able to tour the inclusive school I’ve been trying to get him into for two years. The woman is being SO friendly and SO helpful and SO accommodating that she is letting me come to the kindergarten introduction and she is then going to show me around the school. She understands I have been taking (IMO) too much time off for Monster and since her tours are Wednesdays at 11:30, this is a big favor to me.
The day before is M’s swimming. We don’t get home until 7:00 and then it’s time for treat, relaxing, and combing out the mess of hair he is insisting on growing.
Monster seems to have developed separation anxiety which his psychologist says is not really as strange as I think – many Aspie kids go through it much later than NT children.
I worry over his new home daycare and hate that I have to put him anywhere. I think he’s happy there and I think he is well-taken-care-of, but the woman is not exactly warm and kind. I don’t know if I am doing him permanent damage leaving him there. This woman has an Aspie kid herself. He’s 12. He and Monster seem to have a love/hate relationship. He will tell me he is unhappy there and Matthew (the 12-year-old) is mean to him. He knows these things worry me, so I never know what is true and what isn’t.
Tuesday Monster’s social worker is coming over for her monthly meeting. Monday is my singing group. I want to do Monster’s birthday this weekend. Hubby is taking him to the indoor pool Sunday and I thought I could wrap and when they got home we could have our little family party. Hubby says he should just wait until next weekend. EXCUSE ME??? This is the kid who has been asking since before Christmas how many days until his birthday. I will save him a present to open on his birthday, but the rest need to be done Sunday.
Besides, the 8th is Monster’s party and much to my excitement three people have RSVP’d. I Was setting M up for the chance that maybe no one would be able to come and he said to me, “Then I’d get ALL the treat bags!” so it seemed like it might not be a disaster if nobody showed up. Except that I had rented someplace for 10 kids and ended up with our family of 3.
Now, my horrors and fears and terrors and such. I have been involuntarily falling asleep at work. Seriously. I’m sitting there working and then I sort of drift off. I almost got fired yesterday, and so I have to go see my doctor. I don’t know what is going on, but part of me thinks it’s anxiety. It all started when my mean boss told me I wasn’t working out in her department. I thought it would stop when I got my old job back, but it hasn’t. I’m overwhelmed right now and afraid. I have a doctor’s appointment on Monday afternoon, and it’s a fasting one, so I’m pretty excited about that. My HR dept told me I HAD to take the earliest appointment they could give me, even though they had an early morning appt on the 13th. No, too late. And I’m terrified he’ll take my driver’s license away, even though this only ever happens at work, which makes me think I just don’t want to be here. Weekends, I can sit on the computer or read for hours and never feel that weird droopiness that suddenly comes over me and makes me doze off. Maybe there’s something horribly wrong with me. Maybe it’ll happen again and I’ll get fired.
And how will I get to work? And if I take one of those busses for people who can’t work, who will pick up my child?
I think it’s a combination of frustration, feeling overwhelmed, and then work boredom. If I stay busy at work them it doesn’t happen. Or I can fight it off because I can keep my brain occupied. But I look at our February calendar, and I hate looking at it. I don’t want to do it. And to be honest, I don’t want to work anymore, which makes me wonder if subliminally I’m trying to get fired, which is stupid because where I work I just need to wait around until we’re all layed off. I actually hoped I would be one of the people on the list that went out a few months ago when 4,000 people were let go. Then I would be home with Monkey. I wouldn’t have to put him in daycare. I wouldn’t have to worry about summer care. I could put him back into OT. I could find him a social skills class.
The feeling of helplessness I have about M’s life and future seems so much more real to me since the day school program let him go. I feel very isolated. I feel very alone, and that nobody cares about my fight. My support group seems to be falling apart. The last three months it was just me and the moderator. Maybe they’ll cancel it soon.
I do have my first appointment with a counselor who works with parents of special needs children in a couple of weeks. I want to start crying now, and start telling her how helpless and isolated I feel, and how I’m losing my job and losing my mind and I need to keep both because my son needs me. We need our house. We need our security, our quiet, our retreat. Anyhow, I warned this would be a long ramble. I don’t want to go to the doctor on Monday but I guess this is the push I need. I may be diabetic. I may have heart , liver, kidney, thyroid troubles. I guess it’s time to bite the bullet and find out. Monster DOES need me and if I don’t take care of myself I can’t take care of him.
Posted by Pangaia at 11:35 AM 0 comments
SUNDAY, JANUARY 25, 2009
Now THOSE are good parents!!!!
During the inauguration they showed Obama's sweet little girls sitting nicely with their mom occasionally. A friend of mine on a board that is like family to me said, "Now, THOSE are good parents!" because the girls weren't running wild and screaming and yelling. And at first I didn't think much of it, but it's been sort of gnawing at me. From what I read earlier, the littler one (Sasha? I really need to get their names straight) WAS antsy, and bouncy, and talkative, and fulll of energy, just as you'd expect an excited sweet little girl like her to be. But of course when the camera is on her and she's doing something wild of course the director is not going to say "cut to the family!". No, they'll wait until both girls look their best-behaved and then show them, because that's what good directors do.
Now, going off on a tangent here - I was a photographer for the HS yearbook. I didn't know a helluva lot about photography, because all the other photographers were guys and they didn't seem to like me on their turf. So what I learned, I taught myself. And I took awesome pictures. I went to a catholic HS and the theme of the yearbook was missions, and quite a few of my pictures ended up in the final copy. In showing my mission picture to my sister in law she told me, "Wow! You must have a really nice camera!" No. I have a really good EYE for what would make a good picture. I mean, I've seen people with a super-fancy camera show me piles of crappy vacation pictures they took with it (and I won't mention names as I won't speak ill of the dead). I've also seem some amazing pictures taken with cool, old-fashioned cameras that popped open (one was mine, and it ended up in the yearbook). Nothing fancy. It exposed whatever you were pointing the lens at and clicked - there. You have a picture. Nothing spectacular, but if you had the eye, you could do amazing things with any camera.
It's like telling someone who painted a really nice painting that they must use good-quality oil paints. Or someone who plays the guitar like Eddie Van Halen that he must have a really good guitar.
Raising children is not really an art. You don't carve your child into the perfect child, or mold them out of clay into something wonderful. You start with what you have, and you work from there. And sometimes you find yourself with a wonderfully content, pliable, easily-entertained child who molds well into whatever shape you choose to mold it into. Other times you get the exact opposite: a child who could have decent parents, and no matter how hard you try you cannot mold this child into something resembling a sweet little angel. I don't have an easy, compliant child. Does that mean I have no parenting talent? Does that mean my child is perhaps just in the wrong hands, and in the right hands a "good parent" would mold him to look like all the other sweet little lambs you see cooing happily in the grocery store?
I'm not a bad parent. I'm not a great parent. I'm a parent who gets through her days by the skin of her teeth with a child who works his butt off trying to be good. He really does work hard. We all do - the three of us, our little family. And what for? To be judged by people when we go out with my son and he throws a tantrum or does something else "inappropriate". What a horrible mom (because who really blames the dad?). She can't keep her kid in line. She isn't molding him well. Look what she just let him get away with!! No wonder he acts like that ("choose your battles" the autism specialist tells me, and this means in public too - yes sometimes he does things I choose to ignore in public, because confronting him would mean a HUGE comflict in public)!
So. Stop saying parents with wonderful kids are great parents. Quit saying out of control kids have horrible parents. Yes, there are crappy parents out there. But there are also lots of really easy kids out there and it gets too easy for those parents to pat themselves on the back and point at those of us with less-than-stellar children and throw us all into one category; crappy parents.
And while we're at it - sometimes when you see kids like mine, look very closely and you'd be surprised what you see if you don't make a snap judgement and walk on. You may see a child go up to his mom and give her a big hug and wet kiss. You may see the mom patiently take the same thing out of the cart five times that the kid keeps putting back in. You may see that mom is doing what every other mom out there is doing, but that her child isn't exactly going along with her plans. But you may also see our child see a baby, go up to its stroller, make a face at it, and make it laugh. You may see amazing tenderness if our kid sees someone fall, as they worry if that person is hurt.
This, my friend, is not the product bad parenting. This is Asperger's. The good, the bad, the ugly. Instead of judging, thank your lucky stars you have such perfect kids. As I thank my lucky stars every night for my not-perfect kid. Because what you see is bad behavior and a bad mom. What I see is a child who has amazing potential and who works hard at things other children have come easily to them. And he always amazes me and fills me with wonder and awe.
I challenge you to take my child for however long you think you need to mold him into the perfect child. I challenge anyone. My son refuses to be molded. And that's fine with me. Someday he will be an inventor, a chemist, someone with a brilliant mind that doesn't work like everyone else's. And it will be because I, his crappy mom, did everything in my power to get him what he needs to become that person.
Posted by Pangaia at 7:16 PM 1 comments
FRIDAY, JANUARY 23, 2009
IEP DAY
I just got back from a very good IEP meeting. Everyone on Monster’s team is so interested in his success, and they all like to compare how different M is from this time last year. And they’re right. He has been incredibly successful and has grown and learned new skills, some that even surprise the teachers on his team because he is advanced in quite a few ways.
So why do I sit here now feeling sad? Because after I walked out of that conference room and headed toward the car I started thinking of all of the things Monster STILL needs to learn. He’s come so far but has so far yet to go. And I know part of it is self-pity. Because I am the one who had to deal with the parts of living he hasn’t learned yet.
My child at night puts on his pullup and blanket sleeper (usually with my help, because we both like the contact), and then he crawls into my lap and snuggles in. And in those moments it doesn’t matter to me how long the journey will be, or how difficult. I love this child so dearly and nothing makes me happier than to have him snuggle up on me so I can feel his warmth and weight on me. He is incredibly sweet and beautiful.But he is vulnerable. He is at risk of being teased and rejected by other children. Which of course is a senseless thing to worry about; plenty of NT children are bullied and teased. I consider it a blessing that Monster usually seems oblivious to times when he is being mocked or rejected. Then I wonder how badly I want him to learn the goals in his IEP – the ability to read others, look them in the eye, understand their meaning, etc. Then he will understand that all children are not being friendly. I realize as I change and grow along with my son that these are the same worries every parent has, regardless of whether or not their child is special needs. It doesn’t help knowing everyone else goes through it though. I don’t want MY child to, even though I know he will. I worry for him, and I worry for myself.
Posted by Pangaia at 10:30 AM 0 comments
THURSDAY, JANUARY 22, 2009
Update
It’s been one of those time periods where I haven’t wanted to write about my life with Monster so much. I was transferred surprisingly and quickly to my old job which in a way suits me fine since my boss apparently didn’t like me any better than I liked her. She told me I wasn’t learning quickly enough, which is the stupidest thing I have ever heard because I am and always have been a fast learner, and others who had been there a couple of years told me I had picked up the process much faster than they did. But whatever. I got to keep my salary so whatever I’m doing is fine. Nowadays it’s just nice to have a job.
Monster went through some horrible tantrums at school, trying to bite kids, throwing chairs, turning over desks, hitting teachers, etc. I don’t know what is going on in that little brain of his, except that this unexpected rejection of the day program has thrown him for a loop and he can’t seem to get beyond it. They don’t send him home anymore (thank goodness – or neither my husband nor I would have jobs). They just deal with him. I trust them. They seem to care quite a bit about him at school. I hope my impressions are correct. You see videos of teachers “dealing with” out of control children and you want to grab the teacher by the hair and yank her backwards til her head snaps. Or maybe I’m overly violent? Nobody had better hurt my kid ever again, is all I can say. I still have a lot of anger about what happened before.
We’re redoing Monster’s room, not because we have the money, but because he grew too tall for his seemingly mini bunk bed, and kept bumping his head on the boards when he slept on the bottom bunk. So we moved him up. The ladder hurt his feet. Sigh. He threw tantrums because he wanted us to hold him and lift him up and down. The child is a good 65 pounds now and no way will either one of us lift him. Plus, there was no way I could think to change the sheets , what with the every –other-night diaper leak (is there an overnight diaper that DOESN’T leak? It HAS to be a pullup). The mattress weighs a ton: I can’t climb up on that wobbly thing because I’m sure I would collapse it. So I had to life and haul the mattress over the rail, then hold it and try to keep it from falling while I undid and redid the far corners against the wall. Then I had to push the mattress back up over the railing and onto the bed. NOT much better than lifting a load of a child up there. So it had to go. We’re getting a captain’s bed – found a cheap one and got a box marked on it, “ BOX 2 of 2” Where is BOX 1, you ask? We have no idea. Amazon sells these, but the real dealer is some other place and we had to email them with our question and haven’t heard back. We have no drawers – just large cubbies. Odd.
I still spend every day worrying that I will go to pick my son up from daycare and be told we need to start looking for another daycare. Sigh. I wish I could just let this go. What good does worrying do me? OR Monster? He seems to do fine there. The mom gets upset with him sometimes but he can be an annoying kid. I don’t expect her to be a saint. Just don’t hurt him, or I will have to do something drastic.
Anyhow, that’s about it for now. Last week we purged toys from Monster’s room and moved furniture and for now the guy is sleeping on the floor, on top of the two mattresses from his bunk bed, stacked. He loves it and doesn’t see why he needs a bed. I’m starting to wonder, myself. But the drawers underneath, if they ever happen to show up, would be SO convenient as his sheets and extra blankets live in a huge plastic box in the closet for the time being.
The best part about getting rid of the toys we called his “Not Seven-Year-Old Toys” (since part of the purge is to make way for his birthday stuff) was his discovery of toys he had forgotten. They’re being brought down off the shelves and played with, and it’s wonderful.
And even though this may offend some, let me just say,
OBAMA IS OUR PRESIDENT!!!!!!! THERE IS NOW HOPE FOR THIS COUNTRY!!!!!!
Posted by Pangaia at 4:27 PM 2 comments
THURSDAY, JANUARY 1, 2009
Christmas / New Year's
Santa was good to Monster this Christmas. A man I met recently who plays a mall Santa thought it was awful that we threatened to call Santa whenever M was being rotten and tell him not to come by the house. But it works. I do what works. And since Santa came anyhow, what's the big deal?
Besides, I think this is the last year my baby boy will be believing in Santa. He's been asking way too many questions that make me think he's sort of figuring everything out. He'll be 7 next year. I'm sure someone will tell him Santa isn't real, and when he asks, I don't plan on lying.
New year's eve he spent at his daycare. They had a huge, day-long celebration and when he got home he fell apart several times and then finally ended up in a one-hour tantrum that made us decide that, instead of his being able to stay up late (like Hubby had told him), he really really needed to get to bed. Telling him this caused another huge tantrum, but he went to bed at 8:30 and was asleep within 5 minutes. I hope he was just an overwound kid who couldn't pull himself together, and not getting sick.
Anyhow - happy holidays to everyone. Let's hope the economy starts to take a turn for the better and all those people who are losing their homes get jobs and help, and that the food shelves are fillled again and less people need them. This past year has been so sad for so many. My one hope for this new year is that the downward dive stops, and we start to climb back up.
Posted by Pangaia at 9:20 AM
FRIDAY, DECEMBER 19, 2008
Lego
Are there Aspie kids out there who are not obsessed with Lego? Monster loves his Lego more than anything else in the whole house. And he has a lot of crap to choose between.
He builds odd, totem-pole-like creatures out of heads stacked together and placed on some of a platform. He also like to make the pirates fight the police men.
Monster has a giant box of Lego. And I have bought him him a couple of sets in the past that I built for him and begged him to keep them nice, but they are quickly disassembled and disappear into the giant lego box, never to be seen again. So that's it. No more Lego kits for him. Ever.
Except. There are two I want to get him. The Death Star, which, along with it's unbelievable price tag ($400.00) has so many people and pieces that would disappear within hours of its completion. But I know that these will be discontinued in a couple of years and part of me wants to get it for him and hide it away for years until he actually can take care of it properly. But then i wonder if he will ever reach that point.
The other is an American Indian village that I have been bidding on on Ebay. I decided no, I am not buying this for him, because he won't like it nearly as much as the death star. But the price!!! Holy cow. I think about what $400.00 can buy. I think I should take that money and buy gifts for needy kids. The problem is, I want it too.
I think it's going to have to pass us by. As much as my son loves Lego he doesn't like the idea that you must keep buildings in the same order they were built in. IN his mind, a bilding is a starting-off point, with cool windows and doors and such to be removed and adeed to hiideous totem pole statues he designs for his own pleasure.
I think I will just keep watching for the bargains on ebay for Lego people. He'd be happy if he only had those.
But holy cow that death star is cool!!!!!
Posted by Pangaia at 12:48 PM 2 comments
Five words
Five words that strike terror in my heart when Monster says them; "look what I did!".
Now most parents would be all excited, "Ohh, Honey!! What did you do?"
I was naive enough at one point to be one of those parents.
But now I know better. "Mama, look what I did!" can mean, 'look at how I flooded the kitchen floor!' or 'Look at how I took a whole bottle of your new shampoo and mixed it in with my goop to have goop shampoo!' 'Look at how I dumped sugar all over the counter to make a "beach" for my lego people to play on!"
He always says it so excitedly, like he can't WAIT to show us his latest destruction. I sometimes wonder if he is intentionally trying to drive us insane. But no, it's just Monster being Monster, thinking we'll be as impressed with his new project as he is.
Last night he said to me, "Mama, look what I did to my toothpaste!" and I inwardly groaned. This was a brand-new container of toothpaste we had bought him. It's berry flavored (because mint still sends him into fits of rage, like his taste buds are being burned off by acid). So with lots of trepidation I looked on the counter at his bottle of toothpaste. What did he do? Did he add Draino to it? Pump hand soap into it? Pour his never-ending supply of goop into it?
No. He had pulled the label off. I realized I had been holding my breath, waiting for the punchline, and I audibly let out my breath and laughed. "Oh, cool!". Monster was surprised a bit - Mama is excited about something I showed her?
It was probably a mistake. A nod of approval to keep up these wasteful experiments that we try to explain cost us extra MONEY - this stuff isn't free. We've asked you not to use the stuff in the bathroom for experiments before (the liquid soap container used to get filled in the morning, and be empty by that evening). Not only is it wasteful but something you mix might be dangerous.
He has a chemistry kit. He has no interest in it. He wants to use our normal household products to try whatever little test he gets in his head.
It sure makes life interesting. And not always in a good way.
Posted by Pangaia at 7:03 AM 0 comments
WEDNESDAY, DECEMBER 17, 2008
When Mama loses her mind
Picture this - a snowstorm, not a huge one, just one with enough snow to bring the freeways to a dead stop. It took me 45 minutes to drive 8 miles to pick up Monster at his daycare. Pick him up, and our new deal is, you do your homework in the car, and you have more time to play, watch TV, whatever, when you get home. He isn't doing anything anyhow, so why not do his homework?
I tell him last night, we're in for a long ride home. You may as well do homework because you won't have a heckuva lot of time to do anything after we eat dinner whenever we get home.
For awhile, the homework in the car thing has worked. He does it, no complaints. At stop lights I help him with instructions he doesn't understand. There hasn't been the whining, the "I CAN'T DO THIS!", the general griping and complaining. Last night though, he starts in right away. "I can't do this. It's too hard." Whine. Whine some more. Whimper and complain. And I'm fighting snow and stupid drivers and I finally yell at him, "SHUT UP! GET YOUR HOMEWORK DONE NOW OR NO TREAT AFTER DINNER!!!" And he tries to make a deal with me - "How about no video games after dinner?" "NO - You haven't played video games in ages. How is that punishment?" then he starts in with the whining again and I start yelling, "I'm SICK AND TIRED OF YOUR BITCHING AND WHINING EVERY.SINGLE.DAY!!!! You're going to have homework for the next 11 YEARS AT LEAST SO DEAL WITH IT!" Then he starts crying. And for the first time in ages I don't feel guilty for making him cry. I let him cry. I calm myself down and say, listen. just do your homework. Now. And if I hear one more whine out of you NO treat tonight. Then he apologizes for whining and I apologize for yelling. And he does his homework and I wonder why it has to be this way every day when his homework when the problems are 4+1 and 5-0? He knows way more than this stuff. But he whines. Oh, how he whines.
So I lost my mind with him last night. Poor kid. I try to be patience but my supply sometimes runs out. Especially when I've been in the car for an hour and a half, and half of that time I've been listening to my son whine. Sigh.
Posted by Pangaia at 7:08 AM 1 comments
TUESDAY, DECEMBER 16, 2008
"You Stink!"
Only moms to other ASD children will be able to understand the joy I felt when Monster, angry with me for making him go to his room because he was refusing to do his homework, came out with an envelope that he said had a message for me. I opened it and it said, “Mom you stink”. And instead of getting angry, lecturing my son about his need to respect me, grounding him, etc, I simply hid my smile and told him, I’m sorry you feel that way. Now let’s get that homework finished.
Parents of NT children wouldn’t get why this is a cause for celebration. My son – the one who less than a year ago would have been screaming, kicking, slamming his head on the floor (and admittedly, he does still occasionally do these things) – is learning to express himself verbally instead of physically. And I couldn’t be more proud. Not that I’m going to tell him it’s okay to tell me I stink or call me names, but I did thank him for using his words before sitting him back in front of his homework.
It’s a happy day. It’s one of those days where you see rays of sunshine through the clouds. And these moments when my son does something I consider pretty amazing always catch me by surprise and add a little joy to my day.
Posted by Pangaia at 9:24 AM 1 comments
FRIDAY, DECEMBER 5, 2008
School and daycare and PTSD
Not that I take PTSD lightly, but I really think I have it. I get notes from Monster's teacher and some days the notes are all about how horribly he acted - he was making noises and couldn't be quieted - needed to take 4 time outs, tried to hit the teacher, yelled at a classmate, etc. I read these reports and want to cry. As if each time I hear about these things my son does it re-opens the wound. I KNOW my kid occasionally (okay, maybe not so "occasionally") acts badly. Why does it scare and horrify me to read about a problem at school?
Because of kindergarten. Because of the hell we went through with suspensions, "quiet rooms", calls from the principal, etc. Intelectually I know that the school and classroom M is in now is such a change from kindergarten, and the principal at this school and his teacher actually LIKE him. I know that my son is not going to be sent home for being rotten. They deal with it. He is in a classroom FOR rotten kids - if they were sent home for being rotten the classroom would be empty most of the time and the teacher out of a job.
So I try not to get upset when I read about these bad days. But always my stomach knots up and I feel as if I am having trouble breathing. Panic attacks. Small ones, but there it is nonetheless.
Daycare. Let me count here......
#1 - National chain - pulled from center because my parents decided to stop helping us pay for his daycare. Out of desperation I placed him in
#2 - a home daycare - a single mom who seemed nice enough, sort of hippy-ish, pretty cool. She tried to kill my son. Maybe not flat out, but she didn't change his diaper in 5 hours. Didn't even open his baby food or wipes. Claims she tried to give him a bottle. Put him to sleep on his stomach. Called me at work to complain that he couldn't be comforted. Arrived to find that her daughter had some awful Jim Carrey movie playing at a deafening volume. Got my son calmed down but then called my boss and said I couldn't come back to work. Asked for my deposit back and was told no. Took my unopened diapers and baby food and left. Sued her in small claims court and won, but never got any money.
#3 - back to # 1. Fought constantly with them to not allow my son to fall asleep at 12:30 since I picked him up at 12:45 and he never fell back asleep. They never did it. Once walked in to find the woman in his room asleep on the floor next to one of the kids' cots. Another time she was screaming at a tiny boy for crying. When M was 18 months old he had a fat, bloody lip when I picked him up. No incident report. I was tld nobody saw it happen, but "you know how boys fight".
#4 - Brand new gorgeous national chain daycare opened and thank goodness because #1/3 was awful. Within a couple of weeks the trouble started. The write-ups started. Biting. Hitting. We had meetings with the director and classroom teachers where they told us what awful parents we were (in slightly more veiled words) and how we needed to punish him more for his misbehaviors. We tried - we really did. I still have guilt over the constant trouble that kid was in and the lectures, because I know now that these things don't work and only add to the ASD child's stress. When M was two he got written up for throwing a chair across a rom and hitting a teacher. He was placed on warning. More meetings. More "strategy development". Was refused to be put into the older kids' room because he wasn't potty trained, even though a girl in the older classroom once came up to me to show me her "Dora panties" and lifted her dress to show off Dora pullups! At some point we knew it was only a matter of time before M was gone and I started searching for another place. We were told that after two more written warnings he was out. I found him a new place and on his last day he was written up three times. I threw them in the trash instead of signing them.
#5 - The Most Wonderful Daycare Ever. A small, local chain that treated M like the special, wonderful boy he was. The place was small and there were only maybe 12 children and they were usually split between two rooms with two teachers in each. Wonderful women and the kids were happy and well-adjusted. A 5-year-old there obviously had Asperger's. Once a teacher said to me, about this boy AND M, "I just love kids like this!" I was oblivious. I also once told the director how I was glad M wouldn't need special ed, and she said, "Well, don't be so sure..." once again, I simply let it go. I didn't know what to make of it.
The owners of the daycare decided that location wasn't profitable and closed it 6 months after M started.
#6 - SO close to my work, a daycare run in a Lutheran church that seemed very accepting and kind. They knew M had aggression issues and said they would work with him and us. They did well for awhile. M was in the younger room, once again because he wasn't potty trained and they didn't have diaper changing facilities in the older kids' room.
When he finally did potty train they moved him up. This is when the trouble started. The kids knew he was different and egged him on to get him angry. M wanted so badly to be accepted and when he wasn't he hit and pushed and kicked. Suspensions. Calling in a specialist who observed M and gave advise on how to help him behave better. Then he hit a kid in the head wiith a wooden block and the kid needed to be rushed to the hospital for stitches. So much for the church daycare. Back to looking.
#7 - a different location of the wonderful local chain. I was naive enough to think that the teachers would be the same. Day One I got a phone call from the teacher saying that my son would never work out in this daycare and why did I ever think this would work. She hated him. He actually drove her to tears several times. I would go to pick him up and she would be crying, telling me my son had done this to her. It was time to get answers. I broke down and called our city's special ed division. I told the woman in charge that it was an emergency. She went to the daycare the next day. She called me after observing and used that awful word - that "A" word, the one I had heard occasionally before but just knew didn't apply to my son. But here she was telling me my son displayed several traits of Asperger's. They set up a meeting, and knowing that this teacher hated my son and did nothing to hide it, and refused all of their attempts to help her deal with him until we could find him a new placement, they pushed through his testing schedule at lightning speed, and within two weeks we knew my son had Asperger's, at least according to our school district.
# 8 - M started a special preschool. We were told (honest to god) that we would put him in this class and by the time kindergarten came around he would be "fine". At this time we also placed him in a home daycare with a single woman who treated my son like a piece of dirt. She spoke with the autism specialist from the school and decided that my son could not be trusted to play with other children - she kept him isolated in a stinky cluttered room on his own most of the time. Two older boys played tricks on him to get him in trouble with her, and she always blamed my son, even when the evidence pointed to the fact that these boys had purposely done something to get him in trouble (like throwing his favorite toy into a playpen they weren't allowed to climb into, and then telling the DCP when my son went to retrieve his toy).
# 9 - I got him out of there as soon as I found him another place, a place that oddly enough I had checked out when we were looking for home daycare when my son was a baby. I called it "the garbage house" and that's basically what it was (Still is). He loved it there though and I thought was doing well, until one da they dropped the bomb that he wasn't welcome back. I don't know why. I thnk another parent complained because their kid was pushed.
Found out months later that the man who watched the kids mostly used to flick M in the head and spank him. He also had friends come over to visit and once my son asked for a drink of water. A "friend" gave him water and my son took a swallow, and it was hot water. M freaked out. Friend thought it was hilarious.
And people wonder why I have issues with home daycares....
#10 - Another wonderful independent local chain who understood my child, and while they did have to call a couple of times to ask us to come get him because he was out of control, he did really well there. He graduated from there when he was ready for kindergarten. I miss that place.
#11 - The after-school program at school. They can't kick him out, right? They're funded by the school. They are in the school building. They can't discriminate against my kid, right?
My son went insane at that place. He once hurt a teacher so badly she was out on leave for awhile. They kicked him out. I fought them. I went to the OCR. I filed a police report when my son came home with dark red marks in his armpits where his "aide" had grabbed him and thrown him into the "calming room". We lost our case after about a year.
#12 - Hubby and I worked out an insane schedule so we could be home when Monster was home. We did this for a few months, until summer came
#13 - PCA and respite and day treatment program for summer - PCA mornings M-TH until 12:30 when the bus picked hm up for day treatment. I was home before he got home. Fridays, no day treatment, so he went to respite at a very nice facility that he will be too old for next year. This all happened because I finally got PCA hours, or I would have done this all earlier.
# 14 - the home daycare he's in now. The HDC mom has a 12-year-old child with Asperger's. She's complained about M a few times, but so far no threats. But every day I wait. I have no faith M will make it here. I wish I did.
So. This is why I am traumatized about daycares. Wow- that was sort of cathartic, in a way...
Posted by Pangaia at 3:41 PM 0 comments
WEDNESDAY, DECEMBER 3, 2008
Because I need more to worry about
About two months ago my dad had major foot surgery. He had broken his foot a long time ago and never gotten it fixed, and he had gotten to the point where he couldn't walk without a came. He saw an orthopedist who apparently told him how awful the rest of his life would be if he didn't get his foot fixed, so he finally broke down and had the surgery he's put off for over 20 years. After the surgery the doctor put this huge monstrosity of a brace on it with pins going into his bones from all directions - 16 in all. My mom said, picture those things they screw into people's heads when they fracture something in their neck, on his foot. It was a monstrosity. My mom had to clean it daily - each pin, unwrapping and wiping and cleaning and wiping and rewrapping. They also discovered my dad had an enlarged prostate and so he ended up with a catheter, that my mom had to learn how to change and clean for him.So he's been at home stuck in bed forever. He's bored and sore and depressed. The stock market crash is destroying him - he's losing all his money. My mom noticed last Wednesday that one of the pins looked like there was an infection around it. She called the doctor and he called in a prescription of antibiotics for him. So he's been taking those and they've been screwing up his stomach. Then Thursday they took him out for Thanksgiving - his first trip outside the house that wasn't to the doctor's office. They had a nice dinner and took a walk (with my brother pushing the wheelchair) on the pier. This Sunday my mom noticed a couple of the pins seemed weirdly loose. They had an appointment Monday so she figured she'd talk to the doctor then. Meanwhile, my dad developed horrible pains in his lower gut and lost control of his bladder. So my mom had to get him Depends. Doctor's visit Monday - my dad has a severe bladder infection. More antibiotics. He hasn't wanted to eat for over a week. i guess he barely ate on Thanksgiving. AND the two pins that were loose - they broke. And the one that looked infected, well, there's a chance my dad has a bone infection. So they had to take the whole contraption off two weeks early which will slow the healing process and keep him in bed even longer than expected.Thursday my mom will find out if he has a bone infection, and if he does he will need intravenous antibiotics for two months. My mom finally broke down and asked for a home health care nurse (thank god). They're going to try to get a male so that he can lift my dad and get him into his wheelchair and take him outside. My mom is exhausted and depressed and my dad told her today he'd be better off dead. This is not my dad. He doesn't talk like this. I'm afraid he's just giving up, and I don't know how to give him any reason to want to go on. I know he's miserable and depressed. I know he can't see the light at the end of the tunnel, and if he chooses he will just give up.I'm scared and sad for him. I don't know what to do for either of them. I'm 2 thousand miles away from them. I thought about going out there but I don't know how Hubby can handle getting Monster to and from school and still get his 8 hours at work in. Besides, M is falling apart since he was kicked out of day treatment and is having more trouble in school than they've seen in ages. I feel like I can't leave him now, because he has his own traumas right now, and sorry to say it, but Hubby is not prepared to deal with Monster on his own for any extended period of time, not now when he blows up at M for doing 6-year-old stuff.
Posted by Pangaia at 7:08 AM 1 comments
TUESDAY, DECEMBER 2, 2008
The fun never stops!
The job I hated will be no more soon. My boss had a little chat with me yesterday and told me I wasn't a "good fit", but she's not firing me; she's going to help me find a different job within the corporation where I'd fit better. Not sure what that means because I am (I thought) pretty good at my job, but the two things that have been angering and frustrating me have nothing to do with my performance per se...
1) My boss has been really ticked off at me since I applied for intermittent FMLA, even though I've only had to use it ONCE in the past 6 months to care for Monster.
2) My boss has no children and oddly enough nobody else has small children in her division, and she has no understanding of how sometimes, as much as we care about our jobs and want to do our best and put in our time, our children must come first. We responsible parents do everything we can to make sure that our children are cared for and have places to go so that we can go to work and get our work doen without worrying about them. But that all changes when your child consistently gets kicked out of daycares, sent home from school, etc. I can't put in the OT my boss expects everyone under her to put in, because I need to put in my 8 hours and then be home for my child. I have no problem putting in OT when a project calls for it, but she seems to think a truly dedicated employee would practically sleep at work.
Blessing in disguise? We'll see. It depends upon whether or not I get a decent job out of this whole deal, with a boss who hopefully has young children, or grown children, but at least remembers. I am semi-friends with a man who supervises my old department (he was promoted after I left) and he has a disabled daughter. He;s the one who told me about intermittent FMLA. So I emailed him yesterday and asked him to keep an eye out for me. I have quite a few connections and these people, even if they don't have positions for me, can put in a good word for me to whomever asks.
So now, my blessings from Monster list, for no reason whatsoever except of course his being who he is makes everything more difficult when dealing with all the ignorant, intolerant people out there. like my boss....
1) His great sense of humor. We make each other laugh all the time. His humor is twisted and sarcastic, like mine. Plus sneaky and goofy and immature, also like me. Just now as I was writing this he said, "Does this tickle?" and then blew on my belly. The nut.
2) His amazing intelligence. His insight and deductive reasoning is mind -boggling. He always impresses me, and since I consider myself somewhat bright, that's VERY impressive, IMO.
3) His cuddliness. He still asks for "Uppy comepuppy", code word for, "I want to be held". He crawls his long, lanky body onto my lap and settles against my chest and it's like a homecoming. My body relaxes and I breathe deeply. I was meant to hold this child. I was meant to give him all the hugs and "uppy comepuppies" he needs.
4) His caring and compassion. When I slid down the wet, muddy stairs at the Renaissance Festival this summer my boy was right there, hugging me, kissing me, holding me, asking me what I needed. He is kind and recently started bawling when they showed a particularly heart-wrenching Humane Society commercial. He wouldn't calm down until I went online and made a contribution to them.
5) His love and appreciation of all that is fun. Rides, trips to parks, paddleboats, camping (with Hubby, NOT me), fishing (again with Hubby) - he is just ready to try anything. He has an enthusiasm and excitement about life that I can't help but get caught up in.
6) He is amazingly beautiful. He is physically perfect - tall and lean. He has huge brown eyes and hair like mine when I was little - golden blonde in the winter and light blonde in the summer. I still love to just look at him. I can't stop looking at him.
7) The way his team at his school tells me that he "lights up the room" when he enters. The teachers adore him and my son seems to know how to charm them even though he still has his issues. Even the principal thinks he's wonderful. A far cry from the principal at his old school, who considered him merely a troublemaker.
I don't dread going to work anymore. Today I'll get ahold of all the rest of my friends and get the word out. Then I'll start applying for the jobs my boss claims she'll help me land. And maybe I'll find a boss who understands that sometimes children need to come first. I'm not scared of hard work and I do my damnedest to keep my private life separate from my work life, but kids like mine tend to bleed into every other part of your life. People need to start undertstanding that.
Posted by Pangaia at 6:49 AM 1 comments
SUNDAY, NOVEMBER 30, 2008
Where Have I Been?
Okay. Thank you James for checking on me. I can tell you what's been going on and it may take awhile.
First off, I used to think I had all the answers or at least was someone who had "been there" and might be able to use my experience to help others. At some point over the summer I decided this was pretty conceited of me. Everything I thought I had gotten to work for me fell apart and I realized I was still as ignorant about "the system" as I ever was. I felt as if I had been cocky and thought that I was through the worst of it. But the worst of it was waiting around the corner, ready to pounce on me.
I wanted this blog to be a place where I could be upbeat, and tell others that life sometimes seems horrible for us parents to Aspie children but that in the long run, these children are so amazing and such blessings and once you learn to navigate the system. And I do still think that my son is wonderful and I feel so lucky every day to have him and I love him now more than ever.
But life doesn't get better. It doesn't get easier. You think you know the rules but you never learn them; there are hidden traps everywhere.
So what was so horrible that I changed my whole thinking on this? Nothing, really. A bone-crushing depression that I suffocated through all summer long. The abandonment of my parent advocate who decided I didn't need her anymore. The decision of my son's day treatment program that they really didn't know how to deal with Asperger's children (they're mainly for children with behavioral issues due to trauma) and the early graduation that left Hubby and I struggling and freaking out over how to make our hours work so someone could be home at 3:30. A new job that I hate with a boss who has no children and is inflexible and seems almost resentful about my child who makes me come home after working 8 hours, while the other childless people work OT all the time without blinking. The raising of our Tefra payments to double what we were paying before. The panic of looking for a daycare in a city where we have exhausted all but one (we found the last one) daycare willing to take my son. It has to be in the city limits or the school won't bus him there.
The time spent begging the only school for ASD children between the ages of 6 and 10 to consider moving my child up on their list because they take NT children too and I gave them my son story. They didn't care.
The realization that there are no services for my son now that he's turned 6, until he reaches the age of 10. What do all of us parents do when our children reach the Magic Age Where All Services Disappear?
What else?
My son is at a home daycare and has been there for two weeks. This past Wednesday was the first day he spent there all day because school was closed. The daycare mom was annoyed with him for "making all the little kids wild." WHo knows what will happen? I don't know if he'll stay.
We interviewed PCAs before we found the daycare. I didn't want to do it because we might be able to use our PCA hours next summer. We interviewed one man that reminded Monster of the DCP who used to smack him in the head. He had nightmares for a week.
He graduated from his day treatment program two weeks ago. He has been wild and out of control at school since then, to the point where his teacher suggested we consider medication. First of all, that's illegal. But it annoyed me mostly because she needs to see that
a) Monster just left a program that he liked and kids that he considered friends
b) Monster is now spending all day at school and this is an adjustment
c) M is starting a new daycare
d) M got his orthotics adjusted and we were told the arches had been raised, and he would be in pain
e) the time change usually takes M at least a month to fully adjust to
I know there's more, but the point is, this is a stupid time to start suggesting that we medicate my son for being difficult when he is going through so much, and any one change is hard for him.
So to summarize, I stopped blogging because I don't have the answers and I don't feel so upbeat and I don't know how easy it is to raise an ASD child, even a high-functioning one, because it's not easy. It sucks, to be honest. Not because of my child, although Hubby still has trouble accepting that Monster is the way he is and being pissed off at him doesn't change him or his behavior. No, it's because society still doesn't know and seems to have no desire to learn how to help these children. They are popping up everywhere; I meet more and more people whose children have been diagnosed with Asperger's and high-functioning autism. But our school district has the gall to claim they don't have enough children to start a high-functioning ASD program.
I realize that I want to be someone who can help parents like me. I hate my job anyhow and if the economy wasn't in the toilet I would dump my job and try to find something more fulfilling. We have a huge Somali community here and their children are reaching epidemic proportions for the low-functioning autism, and I wish I could help them. Here they are, in a country that doesn't speak their language, doesn't understand their customs, and now their children are being diagnosed with autism in unbelievable numbers, and I wish I could help them.
I can't help anyone. I can barely handle my own life with my own one child. How can I help others?
Anyhow - enough of my pity party. I will try to blog again. I jsut sort of lost the fire, the anger that drove me to want to fix things and change a little slice of the world. I wish I could get it back, but mostly I'm just tired now.
Posted by Pangaia at 3:51 PM 2 comments
THURSDAY, SEPTEMBER 4, 2008
In the beginning
All was calm. Monster has had a great first week at both school and day treatment. Yesterday two boys had a huge fight on the bus going from school to day treatment, and my boy sat in his seat with his ears covered, crying. Poor guy. He couldn't really explain to us what had happened but he left his backpack on the bus, and in my phone calls and attempts to retrieve the backpack I learned most of the story about the fight and was oddly pleased that my son was not a participant. But he was very traumatized last night. He screamed and cried most of the evening. Thank goodness he wore himself out and fell asleep (in Mommy and Daddy's bed).
I guess it must be the day treatment he's been in all summer. It must be working. His teacher wrote to me on his first day about how she noticed a new level of maturity in him and responsibility.
So. Things have quieted down for the time being. The OCR case was dismissed due to lack of evidence. The home day care where Monster stayed for a couple of months before getting kicked out, and then told me months later that he had been spanked and flicked in the head, is being investigated for reports of child abuse. I got a call the other day from the county dept of child protective services. They just wanted to know if anything had happened to Monster when he was there. So I told her.
If it's true, I hope they get those people but good.
No schools to fight. Nothing more to do right now but love my boy. He is just so sweet and wonderful, and life seems to have calmed down for all of us. Sure we still have our wild days, but they're fewer, and Monster is much more pleasant most of the time.
I know that what happened these past couple of months with me was the mourning I didn't allow myself to do over 2 years ago. I didn't think I had a right to mourn, what with this healthy, wonderful child I had. But I had to mourn SOMETHING, I guess. Instead, I just got really angry and fought anyone who tried to get in the way of my getting what my son needed for him. When there was nobody to be angry with anymore, I suddenly sank into the sadness that had been there all along. I don't know - maybe it's guilt, or regret, or whatever. Still blaming myself for how Monster turned out, even though I really think he would be the same no matter how vigilant I had been when I was pregnant.
Was it the fact that he stopped breathing and his heart stopped a few times during delivery? Was it my high BP? Was it the daily can of Diet Coke I couldn't give up? Was it the immunizations that I didn't bother to question, because I know they're good, but maybe should have requested the individual doses, spread out farther apart?
I don't know. I don't even know that I care much anymore. Monster is wonderful just as he is. I still worry that he won't have friends, or at least not good friends who treat him well. But all in all, I think he'll be okay. But that's just today speaking. It is nice to feel hope occasionally, no matter how brief it is.
Posted by Pangaia at 9:35 PM 2 comments
MONDAY, SEPTEMBER 1, 2008
My first grade boy
Where has the time gone, my sweetest boy? Tomorrow you start first grade. It came so quickly. And you - even in the past few months I have watched you change and become so much more independent, so much more ready to take on the world without me.
I've been trying to give you more freedom without letting you go completely. Sometimes I know I pull on you too hard and other times I probably should be more watchful. It's so difficult to find the right balance.
My focus on you has become less of "my son who has Aspergers" to simply "my son". You will always have Asperger's, but I am able to see lately that this won't homd you back in many ways at all. I know you're having friend troubles, and this worries me, but I also know this is something you need to learn to work through, on your own, in your own way. I can project my own feelings of loneliness that I have had in the past onto you, but they aren't your feelings. I think I've spent a very long time feeling your feelings for you, or interpreting your feelings in my own way.
I have high hopes that this year will be so much better for you. I think you are finally in a stable place where you are understood, and so I don't have any big worries over the school year.
I just pray that you will make friends. And be happy. And learn well. And develop the love of learning that will carry you through life.
Good luck, my grown-up boy!!! I can't wait to hear all about your first day.
Love, Mom.
Posted by Pangaia at 8:23 PM 0 comments
SATURDAY, AUGUST 30, 2008
A day for celebration
Yesterday I was sitting at my desk at work and it dawned on me that we had survived the entire summer without one single disaster - we never had to come pick Monster up from anyplace or stay home because he has been suspended or kicked out.
So I was feeling pretty god about this and practically danced all the way to my car. That night would be special - we should go out to dinner or at least Dairy Queen or something. I got into my car and put in a CD and was checking which song was on as I backed out of my space - right into a minivan stopped behind me.
And you know what? I'm STILL happy. I can't believe we made it! Monster's school teacher called the other day and wanted to know how his summer was and I had told her, it went really well, everything worked out perfectly. And she said how I had worked so hard to get M all this help and I should be so proud of myself. But, hey, what about all of the people who cared for Monster during the summer and understood him and didn't give up on him or kick him out - they all deserve so much credit, for caring for my son and treating him with respect.
I have a good feeling about first grade. We don't need to worry about daycare for the time being (Oh and BTW the OCR sent us a packet - there's not enough evidence that my son was discriminated against), and he's getting lots of support from the day treatment program and his teacher.
Posted by Pangaia at 8:57 AM 0 comments
MONDAY, AUGUST 25, 2008
What is drowning me
The grieving I seem to have never done, or never done adequately when I learned my beautiful boy would have lifelong issues.
The time when Monster was about 5, when I commented on my support board that the thought of staying home alone with Monster all day every day through the summer made me feel that I couldn’t breathe – I knew I couldn’t do it – and how one of the women on the board commented, “this makes me sad for Monster.” And I wonder exactly what sort of mother I really am that I would not be thrilled at this thought of all this time with my child.
The idea that I have Monster in two – not just one, but two – different classroom settings that I still am not convinced are the best places for him, but see no other options, and don’t know how I will ever know if these places are good for him until after the fact, when it’s too late to change.
The idea that Monster is 6 and still so attached to me, as if I have turned him into a needy Mama’s boy who will not learn how to stand on his own.
The thought that Hubby and I are more like co-parents and less like a couple. It’s been this way forever but it’s something that really came to light this weekend.
What my son did yesterday. His feral friends had company so he asked me to invite R over. Feral friends show up and suddenly it’s a circus in our yard. Hubby tries to send them away and R throws a tantrum and threatens to get “really angry” if the ferals aren’t allowed to stay. So they stay because R needs to be either placated or sent home, and I could have sent them all home and left Monster friendless, but it seemed too much like punishing M for something he found himself in the middle of. But then M came in asking for water. I made him two water bottles with ice water and told him to give one to R, since the ferals can go home to get something to drink if they want. He gives the second bottle to A, the feral sister, “because he loves her”. I am furious with him for
A) not doing what I asked
B) not being respectful toward his guest
C) choosing his feral everyday friend over his special guest that he requested to come over
He only asked for R because his friends were supposedly unavailable. I had to put my foot down last night and tell him no treat tonight, and then he screamed at me and told me to shut up. Then I sent him to his room. I told him no more ferals when you invite guests over. They WILL be sent away as soon as they show up. Monster replies, “well, if R wants them over…” and I don’t know what to do about that. The ferals don’t understand R. He gets along fine with Monster and the two play wonderfully together. But the ferals do to him what they do to my M – stir him up, make him nervous and restless, say hurtful things. And my M makes me more angry because he starts playing with the ferals as if R doesn’t even exist. I was forced to go out regularly and ask R, are they playing with you? Are they being nice? After finding him alone in the playhouse while M and the ferals rode their bikes around.
Today the grief seems not such a huge tidal wave coming at me. It seems instead to have already hit, and it settles around me and laps at my legs and I can’t wade through it don’t know which way shore is don’t even know if there is a shore anymore.I can’t be disappointed in my son for being who he is. And I sometimes don’t know when I cross that line. He needs to be taught to be respectful of others for sure. But aside from my total confusion about how better to handle yesterday is my sudden anger that arises from nowhere and sweeps over both of us. The other evening M got home from school and we were talking and I made him laugh and he wet himself a little. And I sent him to his room and told him to get changed. Hubby called and I was talking to him and Monster was calling for help and I ignored him, because Monster claims to need my help 95% of the time and maybe 5% of that time he really DOES need it. I finally got off the phone and went to check on him and he had peed onto his bed and all over the floor. I was furious. I was so angry I couldn’t think straight. I yelled. I asked him what the hell was he thinking, doesn’t he have any sense, etc. But then when I retold the story a friend pointed out that I should have sent him into the bathroom, since knowing some had come out, the rest was close behind. And M had his hi-tops and orthotics on, and even I have trouble getting those off. Asking M to do it, quickly, so he could get his clothes changed, was just stupid of me. So here was just one example of the ways I fail my son. I lead him the wrong way and then blow my stack when he does what I say but it’s the wrong thing.
I apologized. I always apologize. But how many times do I get to say “I’m sorry” before he stops believing me? Why does he have to love me so much? I fail him so often. I wonder why I was given this child who was obviously meant for someone with more patience, more common sense, more understanding. All I can do is love him more than life itself. And it doesn’t feel like nearly enough.
Posted by Pangaia at 12:41 PM 2 comments
SUNDAY, AUGUST 24, 2008
Weeks pass by
School is one week away.
Our PCA actually DID get her ID badge so she actually can be Monster's PCA but it doesn't really matter now because she's done in a week.
We found out that the place that does M's respite will be available to him next summer - all day, every day Mon-Fri if we choose to do that. It's out of our way and he needs a lunch packed every day,but we might end up doing that. I know - leave it to me to start asking about next summer, but Monster has loved his Fridays there so much that he wanted me to make sure he could come back.
Monster is still in swimming but suffering a setback from the time he was at the rec center pool with Hubby and he jumped into the deep end and the lifeguard went in after him. He was scared and humiliated. So now he doesn't want to swim anymore. I try to explain to him that the lifeguard was doing his job and that when M learns to swim the lifeguard won't DO that anymore, but he is still freaked.
I have spent a good portion of this past month in a black depression that I didn't think I would get through. I spent a lot of time wondering how much better off Monster would be if I weren't around and would Hubby be able to handle him and maybe it would be for the best?
I wondered a lot if anything I have done for my child has helped in any way or am I simply making his life more difficult and really has he gotten any farther than he would have if I had simply let life take its course? I felt as if I had been deluding myself thinking I was making some sort of difference, thinking that I was going to make things better not only for my child but for others who will come after him. I felt stupid blogging about my son as if nobody else has struggled and fought for their child to simply be accepted and cared for.
I never heard from the OCR, but now I don't really care. After school care is a moot point right now - it isn't ideal but Hubby will go into work early on Friday, I will go in late, and Hubby will be home for Monster's afternoon bus.
The day treatment will keep Monster at school until 4 every Mon-Thurs, and I can be home for that bus.
I was hoping by this time that I might be able to work from home but my boss dislikes and/or distrusts me and won't let me work from home. But still it will work out, and since nobody wants to care for my son on school closing days hubby and I are divying up the days and staying home with him.
First grade starts right where Kindergarten dumped Monster off three months ago - same classroom, same teacher. Same uncontrollable children being carefully placed out into school settings so they can hopefully someday be properly mainstreamed.
I don't have as much hope for Monster's being mainstreamed as I used to. Since the day treatment program started M is in many ways just that much more difficult to deal with. He yells more, tantrums more, even hits more.
Hubby is losing control of himself and blowing up and I find myself blowing up at Monster more often and it feels as if we will all implode soon. I'm so grateful that we only have this one child because our family already feels out of control and chaotic. I can't imagine adding another child to the mix.
This is painful for me to write. I thought I was past this stage but I'm sitting here crying as I write this. Monster has friends down the street that he loves to pieces and they continue to come around and pester and treat M badly and we have kicked them out of the house but they strike when Monster is playing outside and Monster is so thrilled to play with them and I'm supposed to keep them away but Monster has to have friends. They're not the worst kids in the world - they just have shitty parents. And they offer a sort of perpetual energy and emotional unbalance that Monster seems to thrive on - like a nonstop roller coaster ride.
Which is how he likes his whole life to be, which is why he throws drama and trauma into an otherwise idyllic peaceful day. Today the whole DAY was about Monster - I played Indiana Jones Lego with him for a couple of hours and then he wanted to invite his Asperger's friend R over. I called and set up the play date. The only thing we needed to do was go out and buy a dishwasher. And of course this was Monster's cue to fall apart and make sure we all ended up upset because HE had to go someplace he didn't want to go.
I guess I won't start jumping to any conclusions. School starts in one week and then we will only need to worry about the neighborhood feral children on the weekends because their parents have a rule that they can't play on school nights. Thank goodness. And we ran into a little girl at the nearby park who M went to school with before he was placed in special ed and her grandma gave me her number. Maybe he can make friends with her and want to play with her all of the time? Maybe he will make friends at school.
I'm so tired of deluding myself into thinking everything will turn out okay for Monster. I am going into this school year far less hopeful and far less expectant. I don't have any desire to fight and don't anticipate any need. I can't take my frustration any further than I've taken it. The fight in me is gone and my son seems to be losing ground. All the help that fluttered in and out of my life has wandered off - they lose interest in the older kids, the lost causes, and go after the young, fresh ones with a new vigor - THIS one I will fix! - and the rest of us with the no-longer-cute, no-longer-promising, no-longer-fresh-and-malleable children are sent out into the world with our damaged goods, and we sink or we swim. We have no choice.
Posted by Pangaia at 8:48 PM 0 comments
FRIDAY, AUGUST 8, 2008
Watch as your carefully-constructed safety net disintigrates around your child
When I tok my new position I was under the impression that I would in the near future be able to work from home. I NEED to work from home, at least Fridays, because my son gets home from school an hour earlier than the rest of the week. Suddenly my boss is not budging. She isn't going to let me work from home and she is having difficulty trying to decide if I can work an hour later on Thursday and leave early on Friday.
I wrote her a very nice email and told her, I have no place to put my son Friday afternoons. I have nobody to watch him. No place within bussing range will take him, because of his behavior issues. This is why I requested intermittent FMLA, so I would be able to be there for my son when he needs me (she talked me out of it when the request got to her. She claimed she'd work with me and that I didn't need it).
Two days ago I get a phone call from my parent advocate. She wants to let me know she is leaving in two weeks and she's going into teaching. I ask her, is someone going to be given Monster's case? And she says, well, nothing is really going on right now, right? Right. I haven't called her in weeks. Months, even. So she isn't giving my case to anyone, but I can call any time and they will put someone new with me if I need it.
Yesterday I get a phone call from the people who manage Monster's PCA hours and pay B. Well, whoops, they tell me. We weren't supposed to be allowing people under 18 be PCA's. It's this new federal law and we put in B's request right before it went into effect and guess what? They denied her - NOW - at the end of summer, and we aren't going to charge you - don't worry about that - it was our mistake - but B can't be Matt's PCA after today. Sorry.
I say fine, I'll pay her out of pocket. It's four more half days and three more whole days. Not the hugest deal.
But the plan has been that the week before the last week of August Monster would spend the whole week at this place, in respite care, because the day school is closed those two weeks, and B doesn't want to watch Monster all day for two weeks. So one week at respite, and then two days there the next week, and then respite closes so B watches Monster the last three days of August. Then school starts.
Except that the woman who told me it would be fine for M to spend the full week there (he goes there every Friday, as it is) wants me to get together with M's aide to "discuss strategies" for when M "loses control". I know what this means. I know. They won't keep him the whole week. They'll tell me they can't manage him. I'll get stuck staying home with him because a whole week is just too much for M to handle and he's getting to stressed and respite can't handle him.
Nobody realizes how transparent that request is. I've been asked to discuss strategies so often that I know exactly what comes after that. This is the "we did everything we could to work with the parent" step that they need to feel okay about kicking your kid out.
I feel as if I am slowly unraveling, just like Monster's net.
Posted by Pangaia at 6:20 AM 1 comments
TUESDAY, AUGUST 5, 2008
"Husband is unsupportive and rude..."
Yesterday was the second home visit from the caseworker for Monster’s day program. She’s supposed to be discussing with us what sorts of things she can help up with for M, what sort of services she has available, books for up to read in our spare time (haha!), but it’s obvious what she’s doing. She’s observing us. She’s checking on the housing situation (and the house was/is trashed right now, BTW), she’s seeing how we interact with Monster. She listens for the tones of our voice and the things we do wrong when it comes to caring for our son.
It’s annoying enough, except that Hubby hates these people (they have promised too much, let us down too much, hurt our child too much [and I mean “these people” in general – teachers, principals, caseworkers, aides, etc] and he is barely civil to this woman. I can picture her writing in her notes, “Sullen, unsupportive husband”. And while I don’t care what these people think of us, I think it may be nicer if Hubby just TRIED to be friendly for once.
Oh well – at least I get to come out looking as the victim in all of this; “Monster is supported by his mother, while husband is present but emotionally distant.” It’s funny, because he isn’t like that at all. It’s like he’s playing a game with these people. I don’t get it, but maybe he needs to understand that one of these people may in fact want to help us with M and maybe we should give them a chance.
We’ve been giving them chances for the past two + years. Nobody has really pulled through for us, without having me behind them, forcing then in the direction I want Monster taken.
Posted by Pangaia at 8:29 AM 0 comments
WEDNESDAY, JULY 30, 2008
Fighting fire with fire
I've been feeling crappy today. The festering wound on my leg that split open today can't be re-stitched. I need to stuff it with saline-soaked gauze every day instead. And it feels awful and I feel awful and Monster has replaced me with his PCA, B.
So Monster got off the van today and came running up and gave me a hug. Came into the house bubbling over with stories and seeming happy enough. Then he asked, "Can I call my friends (the rotten kids down the street who I wish I could keep Monster away from, but I really am just glad he has friends at this point in time)?"
I said no, it's swimming tonight.
And he burst into tears.
Not the fake whiney ones that he has perfected. These were real, heartbroken tears of a kid who has had a rough day and couldn't take one little "no". His little heart was breaking.
And then, without even knowing I was going to do it, I burst into tears right there along with him. The two of us sobbed together, he for himself, me for myself (and maybe a little bit for him...), just sitting there together on the love seat, holding each other, bawling our eyes out.
Monster stopped crying first, and seemed puzzled that Mommy was sitting there crying and not being annoyed with him for HIS crying.
He ended up comforting ME, which is so back-assward in so many ways. It's not his job to comfort me. But he did. He was so sweet.
Then he whined all the way to swimming lessons.
And I got annoyed.
And everything was right in the universe again.
Posted by Pangaia at 7:42 PM 1 comments
PCA love
Monster loves his PCA. LOVES her. Did I mention that his PCA, B, is 16 and lives right down the street from us? We've known her since she was a baby. I was thrilled when she agreed to watch Monster this summer.
Anyhow, she watches him until he gets picked up by the van for the day treatment program, right after lunch.
I had to come home today in the morning. the cut from my surgery popped open when I got out of my car at work and I went to urgent care and they wouldn't fix it. They told me I had to go to the surgery dept. They made an appointment for later that morning. My boss told me to stay home and take care of my leg, so I went home until it was time to see the surgeon.
My son basically refused to acknowledge me in front of B. He wanted nothing to do with me. I had become Invisible Mom. It was one of those moments when, as a mom, you think to yourself, well, I guess I'm totally replaceable after all.
Hubby said, well, look at it this way. B never tells Monster no. All she does is play with him. She's young - she has energy and plays with him nonstop. She doesn't tell him, not now, I need to do laundry or wash dishes.
I went into the bedroom and hid out until my appointment. I went downstairs to say goodbye and Monster would barely let me give him a hug and he refused to let me kiss him.
How funny is it that I was worried that, if I came home early, Monster would pester me nonstop and ignore B? All he wanted was for me to be gone so he and B could keep on playing Nintendo.
Sigh.
Posted by Pangaia at 7:25 PM 0 comments
TUESDAY, JULY 29, 2008
Feeling guilty
Monster has been in OT since he was about 3. It has helped him so much and I wrote once how OT gave my son a good attitude about himself - that he could do anything if he tried hard enough.
So why did I pull him out of OT tonight?
We couldn't go on like this.
The dayschool means M doesn't get home until 4:30. OT is at 5. So we rush rush rush and M cries and whines and complains that he doesn't get any rest time. And he doesn't. And I feel awful rushing him after he's been at day treatment.
Today I had my weekly phone meeting with Monster's counselor from the day treatment program. She said, "of course he's crabby and tired in the evenings. We wear him out here. We don't let anything slide; we hold him accountable for everything. It's very intensive.
So I'm sitting there in the waiting room tonight while M is doing his OT and I'm thinking about all of this, and about how the counselor told me it will just get worse when school starts in a month because he will be expected to behave well for 8 hours instead of 4, and I thought, that's it. We're done.
Not done for good, done. Done until the day treatment program is over.
I have decided Monster is going to be on "downtime" mode from the time he gets home until bed, every night except Wednesdays. He has swimming, and he actually likes it, and last week (of course the week I wasn't there because of my surgery) he swam, for the first time, completely unassisted and with his face in the water. So I want to make sure we don't just cut the swimming out right now.
Now I feel guilty. I think about people whose kids are taking music lessons or dance lessons or playing team sports and here's my kid, in OT and in special swim classes.
And I've tried soccer. Monster got so upset when the other team scored a goal that he wouldn't be able to play the rest of the game.
We did acting class. Monster tried to kill a kid on "graduation day" and though the owner didn't say it outright, he basically asked us not to bring M back for another semester.
And now I took away OT. M used to love it and look forward to it. Ever since the day treatment started he cries every time he has to go. It stresses him out too much.
He won't do karate. He won't take piano lessons. I've asked.
I think I'm worrying too much about not giving my son a chance to experience life the way most kids do. But then, he won't anyhow, right?
I feel like it's the right decision, but I'm so upset right now.
I worry that my son won't be "good at" anything when he grows up, because he never got any lessons.
I guess I just keep offering. Or maybe he'll see something sometime and tell me he wants to do it.
He'll be okay, right? I mean, I played soccer, took piano lessons, and played basketball. And all I got from all of it was, I will never, NEVER be good at anything athletic, and I sure as heck can play "chopsticks" as well as anyone else out there. And when I was on teams, I was usually the kid that would make the other kids groan when the coach put me in.
So why am I so sad that my son isn't going through that torture?
Posted by Pangaia at 8:43 PM 1 comments
MONDAY, JULY 28, 2008
Angry Monster
Angry Monster is becoming more and more common lately. Angry Monster tells me I am mean. Angry Monster refuses to give me a bedtime kiss or hug. Angry Monster Yells at me, swings at me like he wants to hit, stomps and slams doors. Angry Monster is mostly about me, not so much about Hubby.
My Monster has always been my sweet Mama's Boy. The kid I found sweetness in even when he was rotten.
But Angry Monster leaves me a little hurt (although I don't let it show) and a little sad.
And he's really not very sweet.
We still have those moments when he snuggles up with me and all feels right and good.
But those moments are less and less.
Most of the time he is hating me for something.
Posted by Pangaia at 5:36 PM 1 comments
FRIDAY, JULY 25, 2008
So I'm going to live....
The surgery was Wednesday and today I got the news - benign. I wish I could remember what it was called, this growth on my leg. I should have written it down when the nurse told me. Oh, well.
Monster talked about nothing else for the past two days, so that every adult he came in contact with was asking me, "how's your leg?" Poor little guy. He gets so stressed by things like this. And now I'm crabby because I am in pain and I'm feeling a tad sorry for myself.
I kept telling myself, if this turns out to be okay, if I don't have some horrible cancer or other disease, I would change my life. Now that it's over, well....
Maybe tomorrow?
Posted by Pangaia at 7:39 PM
MONDAY, JULY 21, 2008
I HATE YOU GUYS!!
Monster told Hubby and me this tonight for making him clean up after himself.
I calmly said to him, Well, I'm sorry you feel that way. I love you.
Then I walked away.
I knew it was coming at some point. It's only a matter of time before most parents hear this, right?
But this kid's been going downhill now ever since he started the day treatment.
I don't know. Is this progress? Apparently he didn't hit anyone today.
Posted by Pangaia at 8:41 PM 1 comments
Hiding emotions
Monster sometimes knows I'm upset before I do.
There's no way I can hide how scared I am about the surgery to remove this "thing" on my leg. It's this coming Wednesday.
I've been fine until now, pretending to myself that I'm not afraid, but now I am terrified.
And when I'm scared, it scares Monster. So I try to hide it.
He knows, though. He can tell when I am hiding something.
So maybe I should just tell him.
And I think this would be easier if I knew he would maybe be a little shaken by this whole thing, but not then turn around and beat up on his classmates or teachers because of it.
I try to keep things from him because I don't want him hurting other people.
Maybe I need to stop tiptoe-ing around him. He knows anyhow. It upsets him anyhow. It's a no-win situation. When Mommy is upset, Monster gets upset, and a whole chain reaction goes off. Whether or not I tell him the truth.
It's just that what I don't need when I am stressed like this are reports from school that Monster was hitting, Monster was making bad choices, etc. I know there needs to be communication but sometimes I want to say to them, "Did you deal with it? Great! Then LEAVE ME OUT!"
And I know that's not really what I want either, and it isn't what I really mean.
Posted by Pangaia at 4:06 PM 1 comments
THURSDAY, JULY 17, 2008
Mommy is mean!
This is what Monster told Hubby tonight when he asked if he could play with his friends after dinner and I said no.
This is what he is learning at his day school. How to label his feelings, how to verbalize his anger.
I was pretty impressed.
The other day when I made him put away his water toys after running through the sprinker he asked me, "Mommy, why is it I feel like I am always your servant?"
This is great. The kid truly believes we make him do everything in the house. We make him dress himself, clear his dishes after a meal, clean his own messes and put away his toys. And brush his own teeth. And we are, according to him, making him do EVERYTHING, and we just SIT THERE AND DO NOTHING.
So, what do we do? We laugh at him, which pisses him off more. We shouldn't. I hated being laughed at when I was a kid. So I try not to. I try to take him seriously and say, I know you feel like we expect you to do a lot, but you're getting older now and you are going to have more responsibilities as you get older. But he keeps it up. Keeps whining and complaining until I just laugh.
He hasn't told me he hates me yet. It'll be soon, I'm sure. He actually HAS told me, "I don't love you." and when I say, well, I love you so there, he turns around and says he was just kidding.
I know, he's trying to get reactions. He's trying to figure out ways to hurt us. What happens from here? He peed on our couch. Now he's just saying rotten things to us. When does he start making the threats? When do we start to worry?
The other day he told me, "You can't MAKE me do this!" about something I really wanted him to do, and I thought, you know, he's almost right. He's heavy, now. I can't lift him. He's strong, too. His build is thick and muscular.
The threats become more outlandish. "Well, then, if you don't, you're grounded for a week AND no treats for a week AND no TV AND no Star Wars on Playstation...." literally - sometimes that's what it takes.
So it's like taking a dog on a walk when he doesn't want to walk. We tug. And tug. And make some leeway, but then lose some ground when he pulls back. It's a battle of wills and he hates that it's two against one and he fights even harder now that he knows he cannot divide and conquer.
Maybe this is normal 6-year-old behavior. It's very frustrating, regardless.
Posted by Pangaia at 9:33 PM 1 comments
WEDNESDAY, JULY 16, 2008
Inclusion
I am stealing this quote from a diversity training webcast at work...
"Inclusion occurs when we value others for their uniqueness and see their differences as positives."
I love that quote. I love the idea of everyone seeing my son's differences as positives.
I was thinking about this on the way home, and about inclusion in school. When Monster went into kindergarten we were SO naive. Here we had been told after his diagnosis - BY THE PRESCHOOL AUTISM SPECIALIST - that all we had to do was put my son into this special preschool they had and he'd be "all set" for kindergarten.
All Set?
I think she was lying to me at the time because I probably looked as if I were ready to self-destruct. She must have thought it would be too much to tell me that kindergarten would only be a whole new set of horrors for my son and me.
Anyhow, the law is that they practice inclusion as much as possible - that means placing children with disabilities into a classroom with 25+ other students, a teacher, and if you're lucky, a one-on-one aide for the disabled child. This is the law. The kid has to start out in this setting if at all possible, and then from what I've seen they work toward proving that your child doesn't belong there and needs to be in a less-inclusive environment. This, by the way, can take years for the school to prove.
In those years, a child like mine in a regular classroom would regularly;
Be removed from the classroom
Be separated from the other children
Be blamed for all the troubles in that classroom
Be suspended for behavior issues
Be told by other students that they are bad or should just shut up.
I have no problem with inclusion. I think the parents who fought for the inclusion of their disabled children are amazing, incredible people who changed the nation and probably had to fight every step of the way.
But now I think it may not be the right thing for every child. I don't think autistic children should automatically be placed in a regular classroom. But it's the law.
I think about the things that set off my son - large groups, lots of noise, kids brushing against or bumping into him, bright lights, transitions - and I think, your regular public school classroom is set up to make my son and others like him a failure. And not only will they fail at school, they will fail at making friends and they will decide they are stupid and they will internalize everything. They will decide they are horrible, rotten people who can't do anything right. Because if you can't sit still and learn in school, well, what CAN you do right? Kids spend a huge part of each day there.
Many parents of Aspie kids want their kids in the regular classroom. I know I did. I know I was led to believe it was my son's "right" by many, many people. But one person was brave enough to tell me directly, "your son is in the wrong place. The school cannot tell you this because you could sue them. There are laws that tie their hands. But your son isn't learning, and he isn't happy there, and he doesn't feel good about himself because of it."
Thank god for my parent advocate. Nobody else would have told me, and I would be sitting in more and more IEP meetings trying to figure out what we hadn't tried yet and what we knew didn't work, when really the whole system was wrong for my child, and nobody in the school was allowed to say so.
It's wrong that a school counselor can't say to a parent, 'of course, your child has rights, but have you considered maybe that this may not be the right place for him?'
I know that the school felt absolute relief when I called my son's social worker and told her, I want to talk about putting my son into special ed, because an IEP meeting - which almost always took over a month to coordinate with everyone involved - was called for 3 days later.
Someday maybe my son will be in a regular classroom. My wish is that our school district will set up a special program for high-functioning ASD children so they can learn parallel to the NT children but not in that same space.
Where my son is now was not my ideal. EBD children are not the same as ASD children, and their needs are not the same. How you treat and discipline them isn't the same. There are two totally different places these kids' problems are coming from in their minds.
But my son flourishes in there. He learns. He was suddenly doing math and reading at higher levels than the second graders in his room. His teacher is accepting of each individual child and really does see the goodness in each of them. She values them.
I wish every classroom could be an inclusive classroom. I wish every school was set up to work with NT children learning alongside ASD children. I just don't see it happening any time soon.
If I knew where to start, I would fight my city to give my son and the others like him their own program. But our school's funding, like every public school's in this country, has been slashed to bits and I don't want to fight for this until every regular kid is getting a decent education, because that is more important.
And yes, there is always homeschooling. I will freely admit here that if I stayed home with my child and tried to teach him every day, one of us would end up murdered. Not necessarily him.
Private schools? We can't afford one.
Charter schools? There is an amazing inclusive school too far away for bussing that we are on a waiting list for. I don't know if we'll ever come to the top of the list.
Besides, I do feel like, I pay taxes, my son deserves an education.
But an inclusive one?
Maybe someday in the future it will be possible, when all teachers have learned to see the promise and uniqueness of kids like Monster.
For now, I want my child to feel happy and smart and supported. I want him to know he can be special AND successful. I think it's more important at this point in his life than "inclusion" the way the law defines it.
Posted by Pangaia at 3:56 PM 1 comments
MONDAY, JULY 14, 2008
Mom to the rescue
I swear I have got to figure out how to cut the cord a bit.
Monster's PCA is on vacation for the next two weeks. So he's going to the Friday place every morning and getting picked up there for the afternoon place. It's something we've been preparing him for for a few days now.
Today I got a call in the morning and M's teacher told me he had been BAWLING, saying he wanted to go home - he even started walking out the door to walk home (it's about 10 miles from our house!). They got him back in there and called me, and I talked to Monster, and he started crying again, and I was telling him, I know you miss B - she'll be back in two weeks. You like this place, you've been here before. I know this is different for you, but you'll be okay.
As soon as I hung up the phone I started to cry. I wanted to leave work right there and then and rescue M from his sadness. I felt awful for him.
Of course 1/2 hour later the teacher called to tell me Monster was fine. He was happy and laughing and having a great time.
Lucky for me, I DO have enough common sense to realize when I want to over-mother, and didn't drive up there and rescue my son.
But still. Should I let myself get so upset just because my son is sad? This seems wrong to me. I can't feel his feelings for him. I need to let him feel them. He needs to learn to deal with painful things. It's just so hard for me to see him hurt. I want to rush in and stop the hurting right away.
Oh, and the afternoon program was really rough for M too today. I told his teacher about this morning, and she's going to talk to him tomorrow about missing people.
We'll see.
It's not like I don't torture myself enough with my own troubles; I add my son's on to my own. Poor guy.
Posted by Pangaia at 5:38 PM 0 comments
SUNDAY, JULY 13, 2008
Finding fault
I know this is futile but I do still catch myself wondering sometimes why Monster is the way he is. Who "gave" him Asperger's?
I drank a can of Diet Coke every day that I was pregnant.
I smoked and took Ambien daily until I found out I was pregnant.
I was on antidepressants through most of my pregnancy - low-grade and suposedly didn't get absorbed through the umbilical cord but who knows?
Plus, if you list all of the things I ingested or inhaled during high school....
I had Monster immunized - right on schedule. Including the MMR, all in one.
The birth was horrible for my boy - his heart rate kept dropping and he had an Apgar of 2 when he finally came out with the cord wrapped around his neck.
He had ear infections almost monthly for the first year. Lots of antibiotics.
Really- it could have been anything.
But then I look at things from a different angle. After reading everything I could get my hands on about Asperger's, I am pretty sure my dad and my uncle, his only sibling, both have it.
I also think that my mom's father had it.
My three brothers and I, we each have lots of ASD traits.
And I've been told that Asperger's is inherited, not caused by environmental factors.
So there's that too. And really it doesn't matter. When I get to the real truth behind it all, I was playing with fire by getting pregnant anyhow. Here I was, a woman who has suffered from depression and insomnia for most of her life (since I was 4 or so), who has been hospitalized for the depression when it became unmanageable, and who married a man whose mother was so classically OCD and whose father was an alcoholic.
What sort of child did I expect from this "colorful" gene pool we offered?
But I forget that we have given Monster many gifts, too, because there are people in both of our families who are ridiculously smart and talented and creative.
And what Monster seems to be is many of the best traits from both sides of the family.
I know it doesn't matter now. Monster is here and he is who he is, and he came from us with our many flaws and we raise him and we make mistakes but we also do many things right.
But sometimes I still wonder, you know? I think I will always wonder. What was it that caused my son to become who he is? And maybe sometime I will be able to just accept that all of it is simply destiny, and my son is exactly who he is supposed to be and he came from our lives and our ancestors' lives just as he was meant to.
I still kick myself regularly for the Diet Coke, though.
Posted by Pangaia at 5:22 PM 0 comments
SATURDAY, JULY 12, 2008
Pee
Monster potty trained over two years ago. He pee trained earlier than that, but he finally pooped on the potty after he turned four. It was a time of great celebration around here.
now, he only wears pullups at night. But those fail us all of the time. So many mornings he wakes up in a puddle of pee. And I don't know if it's because he drinks too much water at night or if it's because he sometimes gets his hands in his pullup in his sleep. A few times when he wakes up his pullups are pulled down.
Regardless, the potty training for the most part is done. I can deal with washing sheets, and the pullups are being paid for by Tefra, so he can wear them as long as he pleases. Someday he'll be washing his own sheets.
But now this child has started to pee himself almost every evening, sitting on our couch.
The first couple of times, we tried to be understanding, oh, it was an accident, it's okay..... but now it's been over a week of peeing on the couch every night, right before bed, and claiming he forgot that he didn't have a pullup on. It doesn't matter that the rule is, even if you have your pullup on (which we do our damnedest to not put on until right at bedtime but sometimes the jammies just go on earlier for whatever reason), you get off your butt and go into the bathroom.
My theory is he's doing this as some sort of revenge toward us. He's learning to deal with his anger diferently in his new dayschool, and I think he's working out other ways to "get back" at people for doing him injustices. We say something to him during the day that he doesn't like? He can be damned sure we'll be really upset when he pees on our still-pretty-new couches tonight and pretends it's an accident.
Of course my worrying mom mind then immediately jumps to, he's got a bladder infection. He's being sexually molested. He's being physically abused. This is his signal to us and we need to help him.
But the logical part of me puts the pieces together and sees a kid who is testing the waters to see just what exactly he can do to us to get back at us for, as he puts it, "Bossing him around."
We've been pushing him to be more independent lately. I have helped him get dressed all of this time and his OT has been telling us, he needs to do this for himself. And I've been ignoring her. But my son is turning into this little prince who thinks that he can clap his hands and have his clothes taken off him, put on him, food and drink placed in front of him and removed, etc, and I finally realized I was being had. Because the attitude is no longer, I love you Mommy and thank you for helping me, it's "I need water!" I can't put my shirt on!" "I'm too tired to brush my teeth!" And I finally thought, you're a spoiled little shit. And it's my fault. I've been waiting on this kid thinking he needed me and I've been deluding myself because he doesn't need me - not in the way I thought. He needs me to sometimes tell him, tough shit, do it yourself. He needs me to say, you pee on our couch again and you will be sitting on a wooden dining room chair to watch TV with us. He needs me to stop coddling him and start forcing him to do for himself or suffer the consequences.
Yeah, I know. I've been a sucker for so long. And then I put my foot down and hubby (who's been wanting me to do this for years) backs me up and suddenly we have a very pissed off kid on our hands who decides that peeing on our furniture is a neat way to get us for making him grow up.
If there's any consolation in this, someday when my son has decided to rebel against us in another, more clever and more evil way, we will get new couches out of the deal. If buying new furniture to replace slightly-pee-scented furniture is a consolation.
This kid has such an attitude that I swear I get scared sometimes of what he will be in the future. He told us tonight after he complained at us for bossing him (right after the pee thing, BTW), that we couldn't make him do anything he wanted to do and we couldn't stop him from seeing his friends down the street (this is a whole different story, but those kids are rotten in many ways which seems to make them VERY attractive to my son), that it WASN'T FAIR that we got to tell him what to do. And he's six.
Those creepy military schools where you send your kid away for two years and they come back completely changed don't seem quite so creepy at times like this.
Do they have those for first graders?
Posted by Pangaia at 8:46 PM 1 comments
TUESDAY, JULY 8, 2008
Thinking about the past
I've been thinking a lot lately about when my son was little.
I remember all of the pain we all were in, how angry we were, how scared I was, how out of control everything was.
I remember when I couldn't stop crying after I got the diagnosis for Monster, even as I told myself, other people have children who are dying or dead. I have no right to be so sad. But I was. And I told myself, it's still my Monster, he hasn't changed at all. But I still felt as if he had been changed somehow, tainted, ruined.
I remember the anger and hurt I felt toward all of the daycare people who accused my son of being bad, being poorly disciplined, having a bad mother, etc.
It was four years of hell.
And after I stopped crying I realized what a gift we had now. A diagnosis. I look at it as if we were handed a map without the "You Are Here" arrow and told to find our way to the center. The diagnosis gave us that red arrow. The place to start.
Plus it gave us a chance to stop blaming ourselves and being angry with Monster for not behaving.
When I think about how far we have come (and yes we have SOOOO far to go but I can't think about that now), I am so relieved that we got the diagnosis. Yes, it was painful to confront and it damned near destroyed my heart, but in the long run it's such a good thing. We are so much happier now, all of us.
Thank goodness for labels. I never thought I'd want my son labelled. But thank goodness.
Posted by Pangaia at 9:22 PM 2 comments
A support board!!!
I am starting a support board for parents with kids who have behavior problems.
I'm pretty excited about this!!!
If anyone's interested, here's the link.
http://www.activeboard.com/forum.spark?forumID=121309&p=1
Posted by Pangaia at 9:20 PM 0 comments
MONDAY, JULY 7, 2008
Cute
Monster is very interested in the radar views I can pull up on the Internet. Last night we saw that there was a heat advisory neaar where my parents live. Monster said we had better call them and see if they were okay. SO I dialed the phone and he talked to his grandma for about 10 minutes. He was very concerned and told her to turn on their AC (they don't have any) but she assured them they were fine.
I love when my little guy is able to consider other people's needs and feelings.
Posted by Pangaia at 8:47 AM 0 comments
MONDAY, JUNE 30, 2008
They're trying to fix my kid!
I haven’t decided yet if this afternoon program that Monster just started uses cruel and unusual techniques to get their kids to behave, or if Monster knows how to play off of my greatest fears; that he will be hurt, abused, made to feel bad about himself, laughed at, set apart from the other children, and, perhaps worst of all, given the tools to grow up and be independent.
Because, and I have to be honest here, there is already a part of me that is mourning, that is kicking a screaming, “IT’S NOT FAIR!” that “they” are turning my child into a child who is self-sufficient enough that he doesn’t need Mommy every time his life goes off track.
Of course the logical part of me sees all of the benefits to this. My job, after all, is to allow this child to become as independent as he possibly can be, while still allowing him to feel attached to me when needed (which will, sadly, be less and less, and is happening faster than I expected or wanted).
Along with his odd display of empathy over this weekend, I also watched him hold his own at his cousin’s high school graduation open house, where he never once hesitated to wonder if it was okay for him to get right in there with the teenagers and adults and play volleyball with them. He never once came looking for me. At one point I went outside just to see what my son was doing, but if I feared he was lonely, feeling left out, bored, needing me, I was sorely mistaken.
The least this afternoon class can do is somehow hurt my child, mentally or physically, in a way that I cannot allow to happen and I will have to investigate and maybe complain. But how twisted is it that in my mind the worst thing this program will do to my child is make him more self-sufficient.
And while I would never sabotage something so important, there will be the part of me that will need to process this, this loss of my needy small boy. So while I hope the school is as good as is promised, and while I hope they change his way of thinking into one of introspection and empathy, it will be putting a large piece of me out of work. And it makes me sad just thinking about it.
Posted by Pangaia at 8:21 AM 0 comments
SUNDAY, JUNE 29, 2008
Empathy
For the first time ever last night, my son demonstrated emapthy for another person, other than us, his parents.
We watched the Chipmunk Movie last night, and at the end they show the evil guy who wanted to take advantage of the Chipmunks crying. And Monster turned to us and said, "I hate sad endings!" and started bawling. The three of us sat down there in the family room, Monster snuggled up on hubby's lap, and talked about how it is sad to see other people lose something they want, but that this movie was supposed to be a happy ending because the Chipmunks ended up with the person who really loved them and took good care of them.
We couldn't convince Monster that the bad guy really deserved to lose the Chipmunks because he didn't care about them really. But he cared, M insists, because he was crying.
It's proof that empathy is taking root and growing in his mind. This is a good thing. I hate to see him in tears over pretend movies about talking chipmunks. But at least he's learning.
Posted by Pangaia at 12:44 PM 0 comments
WEDNESDAY, JUNE 25, 2008
Kicking, hitting: Other annoying things
Monster is very aggressive. Not so much at home, but daycare and school. Sure, we've had our share (mostly me), but he saves most of that for when he's overwhelmed around other kids and noise and lights, etc.
I don't blame him for it. It's part of whom he is. It's just that this is the part of him that the the rest of society really frowns upon.
So what do I do? He'll grow out of it, I've been told, and as he grows older the attacks do seem to decrease in number but increase in intensity.
And today was his first day at the afternoon program. When he got home I knew he would be extra-stressed; a new activity, a long ride home (the driver got stuck in road construction), and hot and sweaty from playing outside. What I didn't expect was the return of the hitting and kicking. Because he hit me today, and then he kicked me. And then when I was trying to help him get his swimsuit on for his lesson he was blowing in my face. Poking me. After the lessons, getting him out of the shower, he was doing it again. Blowing razzberries in my face. Yelling in my ear.
Sometimes I want to smack the shit out of him.
But he knows as soon as he does it that it was wrong, because he instantly looks concerned and says, I'm sorry, Mommy!! I'm so sorry!"
Of course I know I'm being played. But he only acts this way when he is really stressed.
I feel like a battered wife, only it's my child who batters me.
This afternoon program, added to the classroom he started in Kindergarten and will stay in next year, are supposed to teach him how to deal with his stress better. I don't know how. I can't even deal with my stress. More power to them, I guess.
I'm just a bit discouraged, is all. Here is this place that is going to change my son's bad behaviors, or claims they will, and the first day he's back to doing things he hasn't done to me in over a year or more.
I have to give it time. I know this. He will get worse before he gets better. I am expecting this. He will never get 100% "better". I know this too. But sometimes I wish I had a crystal ball so I could see if all of this is worth it, if it really will make his life better for us to put him through all of this. Because sometimes I wonder if what we are doing is more damaging than helpful; the labelling, the placement with emotionally/behaviorally disturbed children, the need we all have to improve on this child by removing part of him, weeding out the parts society doesn't like and making room for the acceptable stuff to grow.
Hell, who am I kidding? I hate getting hit and kicked. I hate having to find him new after school programs, and picking him up from school.
Plus, I think he feels proud of himself when he conquers those demons inside of him. Those times that he chooses to yell instead of hit, or chooses to kick a ball instead of the kid next to him (who may or may not even be involved in the issue). He understands that whatever he needs is inside of him if he can just find the right paths.
I hope that this place gives him a really good map.
I'm tired of getting hit.
Posted by Pangaia at 7:05 PM 0 comments
MONDAY, JUNE 23, 2008
my baby boy
Monster is 6, but I still see him as my baby. This big, grown-up kid who has graduated kindergarten is still, in my mind, my tiny boy. I think we moms do this when we feel our kids need extra protection. Or when we need to see the good, sweet child that exists under this rotten brat we see too often. I know that I remind myself often that this is my tiny baby, and it takes away some of my impatience, and gives me back my perspective. What do I want to see when I look at my son? Basically, the choice is mine. I can see a monstrous child who doesn’t do what is asked of him and who hits and bites and has trouble with other kids and teachers, or I could see the small, vulnerable child who is confused and lost in this strange foreign world and needs my guidance. He’s the same kid, either way that I look at him. But if I see the bad kid, what will Monster do? He’ll see that I look for the bad behavior and think to himself, “I’m a bad kid.” And he won’t believe in himself. He’ll decide, I’m bad, so I might as well not even try. If I see the good kid who needs some guidance, Monster will say to himself, “I’m a good kid; Mom and Dad see it, it must be true.” Is this spoiling him? I think it’s the only way he will be able to grow into a contributing member of society. I think it’s imperative to build his self-esteem to make sure it is rock-solid now. I have probably said this before, but there will be enough people out there trying to tear my son down. There are people who have already done this to my son. So, at home, I OD him on self-esteem. I tell him he’s smart, and wonderful, and sweet, and caring, and kind, and very, very lovable. And I tell him he can be my little baby for as long as he wants, because he likes being babied. At this point I see him pulling away, going out into the world bravely on his own, but when he comes back to me he wants to curl up in my arms and be helpless and sweet. And I believe doing this for him will give him the confidence to go farther and farther out there in the world, knowing that he can always go back to being my baby whenever he needs it.
Plus, I just love it. I still get to hold my baby in my arms, even though this baby’s legs and arms are long and gangly and have sharp knees and elbows which bump and jab and seem to get in the way. But then he settles, and we both sigh, as if we have both found our natural state – my arms around my son, and he with his head on my chest, and he sighs and I feel his breathing slow and his heart rate calm. And I feel myself calming too, because this is the “fix” I wait for al day long.
My baby is back, for whatever short amount of time he wants to be held. I love it. My Monster is a sweet, lovable, wonderful Monster. He is so grown up in so many ways and I am so proud of him and tell him often how proud I am when he is independent and brave. I don’t want to keep him my baby forever. But if he wants to be my baby for a half hour at night forever, I will never ask him to stop.
Posted by Pangaia at 3:20 PM 0 comments
Trying to listen to instinct and trying to teach it
I woke up an hour before my alarm went off today and my first thought was about the person who offered to get my son a cup of water when he complained he was thirsty, and then brought him hot water instead of cold or even room temp. And when he spat it out and started screaming and crying, she laughed and laughed. The DCP provider in charge yelled at her for doing that, but she thought it was the funniest thing ever.
Obviously his mouth wasn’t burned, or he would have said something that day. As it was, I didn’t hear this story until about a half of a year after my son left this home daycare. Apparently sometimes “friends” would come over and help the DCP with the kids.
This was an adult. Who took some sort of pleasure in torturing a young disabled boy. What is wrong with people?
And what is wrong with me that I wasn’t able to prevent this? I screened the DCP, I called the references. I spoke to parents as they picked their children up. I checked for a current license. All in place. I would ask my son about his day, and get the same answers each day; “How was your day?” “Fine” “What did you do?” “I don’t know”.
If I had known about this at the time I would have gone over there and kicked someone’s ass. So maybe it was better I wasn’t told.
I idolize Gavin DeBecker and use his book, “Protecting the Gift” as a sort of bible on how to teach my son to be safe from creepy, evil, rotten people. But part of what a child needs to learn early is to say they will tell, and then to tell. That day. And since that event with the water, my son HAS told me of people treating him badly. Usually the same day. I accept the news calmly and thank him for telling me. I worry though that this part may always be difficult for him. When he told me about the water thing, the next words immediately out of his mouth were, “Don’t tell DCP! They’ll be mad at me!” Which led to a long, gentle discussion about how he doesn’t need to worry about people getting angry with him for telling us things if they’re true. That hubby and I will protect him no matter what.
Still, for some reason, this water thing haunts me. What kind of sicko takes pleasure in tormenting a 4-year-old boy who doesn’t understand why he’d be mistreated? And why would a sicko like that be in the same building as my child while he is being cared for? This was a friend of the DCP, which makes me wonder about the DCP too.
Thank goodness that place is far behind us. But obviously I am still upset about the things that my son alleges happened there. And if these things did happen, they are still floating around in my son’s mind, in some sort of ether world from which they eventually emerge and get spoken by my son. Where was this memory 5 months ago? Was he so traumatized that the memory went away until he felt safe enough to express his pain?I want a book that teaches me how to keep my special needs child safe from bad people. I haven’t found one yet.
Monster’s Aspie friend wants him to spend the night in the next couple of weeks. And I worry about the father, that maybe he’s a secret child molester and how will I know? What can I do? Just say no sleepover? At some point I need to let my child out into the world, and be able to trust that he knows how to protect himself. I need to be able to know that he will tell us immediately if something happens.
And maybe this is why this memory surfaced for me now- as a reminder that my son may not be quite ready to be alone with other adults in a home situation. And I don’t know how to know, because I can tell my son he needs to tell us and he will tell us, yes, I will. He told us that before we placed him in that home daycare.
He was better when his aide at school started mistreating him. He would tell us. I would call the director and tell her my son says this happened, and I know it may not be true, but could you please speak with this person and find out what happened?And he told us about the marks in his armpits the day it happened. He understands this stuff is serious and that hubby and I are going to always do what we can to protect him.
But maybe I need to wait on this sleepover. Maybe this is all my half-conscious brain was telling me.
Posted by Pangaia at 8:22 AM 2 comments
FRIDAY, JUNE 20, 2008
First day of respite
Monster LOVES his new PCA and the two of them have apparently had a great time together Mon-Thurs, but today is the first day of his Friday respite.
I am in a state of panic over this. M was super-excited to be going today but we all know how well Aspie kids are with new situations. If we lose our every-Friday care we're going to have to do some major scrambling.
It doesn't help that I am still in a panic over this mole, although I am a little less determined that this is a death sentence. July 3rd the surgeon will look at it, and hopefully be able to remove it then and there.
It just makes me realize how small these things are in the long run, the things like letting my son fal asleep with me and cuddle with me and need me so much. I would hate to reach the end, however it may come about, and think to myself, what if I HAD spent more time just holding and loving my son? What would have been so wrong about letting him sleep next to me every other night or so? Someday Monster will decide he's too big for any of this stuff, and I would miss it.
He loves "camping out" with hubby or me (which just means, sleeping with us). He is like a cat, in that he pushes himself completely against you so the heat from the whole side of his body absorbs into you. I've moved him away a couple of times when I was really hot, and the little body just comes sliding back over against me.
I feel like all of this contact is so good for him. It reinforces over and over what "good touch" is, as opposed to whacking a child to get their attention.
Anyhow, I am now stressed over two things, and starting next Wednesday there will then be the afternoon treatment program for me to worry over.
I guess thank goodness I'm here to worry over this stuff.
Posted by Pangaia at 10:09 AM 0 comments
THURSDAY, JUNE 19, 2008
Maybe not so brave
I thought that having Monster in my life had made me brave. And in many little ways, it has.
But then I get this mole,
and I am falling apart.
I need to have it surgically removed. It's huge. I tried to ignore it for 6 months, hoping it would simply disappear.
But then the other day I caught a glimpse of it (it's at the top on the back of my thigh) and thought, wow, I really think that maybe this is something that needs checking.
I hate going to the doctor. Doctors have been mean to me in the past and they scare me. And this has NOT changed since Monster entered my life. Sure, I can talk to any doctor about my son, request anything, no matter how rude or bitchy or stupid the doctor thinks I am.
But for myself? Not at all.
So driving home from the doctor's office I start thinking, I can't die. And of course if I had been a truly devoted mother it would have been because I need to keep helping Monster, need to keep fighting for him.
But the truth of it is, I am scared of dying because I want more time with my son. I want to hug him more and hold him more and let him fall asleep next to me and I want to look up from whatever I am doing and be awestruck by the beauty of this child who came out of me and I want to hear the sweet chirrup of his voice and I want to laugh at his incredible sense of humor.
I don't want to leave yet. For all the most selfish reasons.
Of course, I'm worrying before I even know anything. But that is nothing new.
Posted by Pangaia at 7:49 PM 1 comments
WEDNESDAY, JUNE 11, 2008
Grandparents
My parents are out visiting and Monster is putting on a pretty good show for them so far. My mother has noticed (BLESS her) how much more difficult M is getting as he gets older. But they both find him amazingly sweet and lovable (which of course he is). They also both think he is brilliant.
My dad used to piss me of by making comments like, "Oh, you don't REALLY still need to wear diapers at night, now, do you?" and I would give him the evil eye and say, "Monster is allowed to wear pull ups as long as he chooses." This time, though, nothing yet. They seem to have done their homework and aren't saying rude or stupid things at all. They're both just mesmerized by him. Monster does have quite the little personality. He's just such a unique guy.
So. So far, so good. Mom came to swimming lessons tonight and went on and on about how well Monster did and I told her how long it had taken M to get this far (putting his face in the water - jumping into the pool holding the instructor's hands, blowing bubbles and kicking). She thinks he's doing wonderfully.
Not used to the parents being so positive and supportive. But they seem to understand Monster. We'll see how the rest of the week goes.
Posted by Pangaia at 9:30 PM 0 comments
SUNDAY, JUNE 8, 2008
School
We had Monster's school-end meeting on Thursday. I was so freaked out about it that I called his social worker/teacher and asked her, "this isn't going to be a meeting where you tell me that you've tried everything with my kid but you can't help him, is it?" and she said no, no. This is supposed to be a good meeting. I'm sure she thinks I'm a nut, but I could not have dealt with another doom and gloom report on my son at the time. I would have ditched out on the meeting if I suspected they were going to say bad things.
Monster has taken of academically and there seems to be no stopping him. He has in the past few months since he switched schools passed up the 1st grade-level reading and math groups he was in and is now working with a private tutor on second-grade-level work. It's as if this new placement helped my son to see what school was actually for, and he figured out he loves learning, and just took right to it.
The team had nothing but nice things to say about Monster. He works hard, even when things get tough. He is so eager to learn and improve. He is obviously happy and well-loved. He is incredibly sweet.
The afternoon social program he starts will keep M for at least a year. When school starts next fall they will squeeze all of his academics plus PE into his mornings and then feed him lunch and send him off on the bus to the afternoon program. He will do this at least through all of first grade.
I wish I had a sense of hope that this afternoon program will really help Monster. I think it will be a good place for him - a place that understands him and wants to help teach him how to get along with other kids without hitting or kicking or biting - but it is too much for me to hope that the changes will be dramatic. Will they make my son act more "normal" so the evil kids don't see him as a great target and start ripping into him? Will they give him the ability to walk away from these kids without giving a piece of himself away as he leaves? These are the things I am trying to teach him, but I don't ever know what gets through to him and what doesn't.
I am sad this school year is ending just as my son seems ready to really take off. I am worried about the summer and the afternoon program and the PCA and the respite care. It seems as if it is all in place and ready to go, but I can no longer trust that things will go as planned.
Posted by Pangaia at 2:50 PM 1 comments
MONDAY, JUNE 2, 2008
Sinking. Failing.
I cannot protect my child from rotten kids who set out to hurt him for no good reason. I can’t keep him from getting hurt by people who claim to be his friends but then treat him horribly. I can’t keep the labels away from him – special needs, and now – EBD.
Maybe he was neglected by us, in that we didn’t know what to do with him until he was 4. Maybe dealing with him by the skin of our teeth for so long set up a sort of neglect-like scenario for him. It didn’t help that we left him with so many adults who treated him as a NT -albeit rotten- child. Our neglect may be that we put him in these places who had no understanding of his needs. And neither did we.
Did we neglect him because we two spent so much time frustrated and angry, blaming each other and ourselves and Monster for the disaster that seemed to have struck our house and we both were so stunned and felt unable to figure out what we needed to do, what were we doing wrong, what was wrong with our kid?
Our son learned aggression at daycare. That much I know for a fact. So how is seeing it at daycare and learning and practicing and taking it on as habit from something you do at daycare different from something you see and learn at home? It isn’t.
Backgrounds of neglect, abuse, loss. This is the type of child my son is put with to learn how to behave in this world. And I used to think the label didn’t fit – Not MY son. Because he is very much loved and coddled at home and if anything should be suffering from being spoiled rotten, not neglect. And yet. We didn’t know, so we neglected. We are like the parents who don’t know what children need and so give them nothing. But we thought we knew, which is probably even worse, because it meant we took too long before we asked for help.
My son cannot control himself. And yesterday it was hard for me to blame him, these kids were so rotten to him. I thought to myself, here we go. Now it starts. The friends turning on him. The children who don’t even know him singling him out because my son and all of these children are older now, more perceptive, my son’s differences more pronounced. I can’t do anything for him. Today I ache so badly for him I can barely think straight. He doesn’t deserve this. Even hubby and I lose our temper at him and he’s just being himself. He’s just doing what he knows – what he is capable of. Yes, sometimes he is a horrible little shit intentionally, but sometimes he really cannot help himself, and yet. I lose my temper. I cannot take it one more moment, whatever little odd stim he is doing to deal with strain. He repeats himself a hundred times. He cries. He tantrums, he screams. And I can’t take it.
I’m putting my son out into this world and he is getting hurt already, and it’s just going to get worse. I can’t protect him. I can’t fix him. I can’t change him or save him. I stand on the sidelines and watch him stumble, hear the other children laughing at him. I reach out toward him but he’s out of reach. He’s moving farther from me. He needs to, it’s part of his life's work. And I stand here as he recedes into his days and hope that his heart can be patched together when he returns to me in the afternoon.
I feel like I’ve failed him. I feel like I will fail him a million times more. And I thought I was so strong and ready for this. I was so wrong.
Posted by Pangaia at 12:52 PM
SUNDAY, JUNE 1, 2008
Birthday parties
Maybe it's better if Monster is not invited to parties, because mean children show up at those parties, and tease my son, and "get him going".
The birthday boy this time is a boy one year older than Monster, whose parents I met at our support group. BB(Birthday Boy) is a year older than Monster, and the two play well together and seem to "get" each other.
but of course BB had other children at his party, two of which were cruel and evil toward Monster. First, the only girl at the party handed out plates and as she hande M his she said, "You get the THREE THOUSANDTH PLATE" and set it in front of him with a flourish. M beamed. The kid across from him grabbed his plate and M freaked. Of course the boy innocently said, It's just a plate, so what? The BB mom told him to trade plates back. But then the two little shits start in about this weird kid who gets all worked up over a PLATE, a piece of paper. This of course made M frantic and he shouted shut up and blew raspberries at the kids. I finally forced him to change seats to get him away from them, but M burst into tears and one of them called him a crybaby. Monster started screaming, "I am NOT a crybaby!" and a sweet boy across the table said, No, I told them you weren't, that that wasn't a nice thing to say.
He calmed down. The cake was eaten. The presents were opened. I knew exactly what to get BB since he had coveted Monster's last time he was here, so the present was a hit. but the two boys would NOT leave Monster alone, finding ways to bump him, push him, and once try to trip him, where I angrily yelled, "DO NOT trip him!" and held back from adding 'You little ShiT!"
It was time to go but before I managed to get M out the door he had kicked, punched, pushed, and smacked not only the two evil children but one who seems to have gotten in the way. I dragged him out, kicking and screaming and thought to myself, yet another gracious exit from an event. Shit.
I cried in the car. And I told Monster yes, those children were rotten to you - REALLY rotten. And, you know what? I understand why you did what you did, but you will be dealing with crappy people like those your whole life and you have to figure out a way to do it without hitting. He asked, but what? Well, you ignore them. Don't give them the satisfaction of knowing they're upsetting you, because that's what they want to do. Walk away from them. Change seats. Just do what you need to get away from them and act like they don't hurt your feelings. "But they DO hurt my feelings!" I know, I say, with tears running down my cheeks, I know they hurt you. But if you let them know, then you let them win.
I feel like it's starting - the need to turn my son into a cynic. He can't be this innocent around such crappy kids who prey on his differences. And these kids have a second sense. They may not have noticed he was troubled right off the bat, but the instant the plate thing started, oh, they knew they had him, hook, line, and sinker. And part of me thinks yes, kick these kids' asses. They deserve it. But I can't teach him that. I feel like I'm putting him at a disadvantage. Be a good kid and put up with other kids' crap without getting violent, And it won't change - they'll keep coming after you. But there's nothing you can do.
Posted by Pangaia at 9:11 PM 3 comments
TUESDAY, MAY 27, 2008
Mean people suck
Monster told me yesterday that there’s a new woman on his return bus. There used to be two men but the man is gone and now this woman is the aide. When Matt doesn’t listen to her or disobeys her, she calls him stupid.
As always, I kept my reaction calm. I told him, that’s not nice of her to do that. I guess I’ll call the bus company tomorrow and tell them to ask her to stop.
So today I found out that this woman has been on the bus approx a month. Monster has been having extra issues at school the past moth. Hmmmm. I was assured this woman would no longer be on M’s bus. I called his teacher and told her of my discovery, and asked her please to watch when the busses pick up to make sure there’s a new aide on the bus. I also said, this may have been part of his problem. He was dreading the afternoon bus all day long.
People suck. Not all of them, but times like this it feels like it. Why would you call a small 6-year-old special needs boy “stupid”? What kind of ignorant bully piece of crap person are you? I want to find this person and beat her face in. And no, I’m not at all a violent person.
We work so hard to keep my son’s actions separated from who he is, and then one person comes along and works at pulling down all that we’ve worked to build on. WTF?
I’m just so angry right now. It’s a good thing I don’t know who this person is. She’s just better not ever set foot near my child again.
Posted by Pangaia at 9:44 AM 0 comments
MONDAY, MAY 26, 2008
Not liking the boy much
Once, at a parents' support meeting, a woman was talking about her 8-year old son and how he talks back, doesn't listen, has become more aggressive and mean, etc. And I naively said, well, at least you still have your sweet boy sometimes, right? And she looked at me, and she wasn't even sad, really, just resigned. She said, "We see less and less of the sweetness, it seems."
And I felt so bad for her, and thought, well, at least Monster will stay sweet.
Ha - joke's on me, I guess. This kid rapidly becomes less and less sweet as time goes on. And now his cuddles are more like body slams and he won't just rub my hair - he pulls on it!
I called the school psychologist who told me Monster is just stressed with learning so much, but he's a wonderful, amazing, sweet, super-smart kid and I should be so proud of him - as if I called to complain about him! I called because I'm worried about him. He is changing so rapidly and he is losing hs sweetness and becoming someone who seems mean and sarcastic (who says Asperger kids don't get sarcasm? They don't know mine, obviously!) and just outright ugly a lot of the time. I want to know why. I AM proud of him.
Friday was another rough day for M at school and he had a one-hour "issue" where he could not pull himself together. I get these "CPI log sheets" that give me all of the sordid details of what he did, why he was held, how he was held, how long he was held, but on this one they added on to the back things he had said, from "You're going to jail!" to "Let us out (in, it is noted, a different voice, which when they asked 'who?', Monster answered, "Nate", to "I have a phone in my pocket and I'm calling the police - who's laughing now?" and I think, what am I supposed to think of this?
My first thought is, holy crap, my kid is cracking up and developing other personalities. My second thought was, he NEVER talks like that at home, no matter how awful he's being, and the third thought is, the "who's laughing now?" comment cracks me up. I feel like it shouldn't, but it does.
I spent two days worrying over that stupid sheet. But then it dawned on me, this is only their reality of the situation. Maybe Monster was yanking their chain. Why not? He does it to us all of the time. And why do they report this anyhow? Am I supposed to be concerned? Am I supposed to be upset that my child does these things? My child has done these things since he started talking, and he's been aggressive ever since he began walking upright, thus freeing two limbs to use as weapons.
I don't want to lose my sweet boy. But I know he's growing up. He is also going through some tough stuff right now - the new classroom is still just that - NEW. It's been, what, two months?
I try not to see everyone this way but in my opinion many of these special ed teachers paint very bleak pictures of my kid, even when they are praising his intelligence. they go around pretending they don't have negative attitudes by reporting that M spent an hour in the time out room but after he came out, he got back into his day and did great! And sometimes these reports feel to me like a detective reporting of a burglar, "he took all of the cash, but he mopped the floors and cleaned the windows!" and we're all supposed to notice how the detective pointed out a good thing for each bad one. As if he's finding the good in all the badness.
So anyhow, I've stopped worrying over this incident. I just want to see the good in my son. Not that I wear these rose-colored glasses, but if everyone else wants to look for the bad, well, then, I am allowed to see all of the good and point it out to the teachers if necessary.
Posted by Pangaia at 5:27 PM 0 comments
FRIDAY, MAY 23, 2008
Occupational therapy
Monster has been in OT since he was three. At three, he was diagnosed with sensory integration dysfunction and the OT worked with him on his sensitivity to noise, lights, textures, touch, etc. We didn't know about the Asperger's at the time, although there were hints and whisperings and denials about "that word". We only knew that he seemed to be benefitting from the OT, so we kept him in.
At the time, our insurance didn't cover it. It "wasn't necessary" for our son, since he had nothing wrong with him. We paid a fortune for it then. But M loved hia OT and she was helping him so much. She was the one who discovered Monster's freakishly double-jointed thumbs (you can fold them flat back onto his hand) and figured out how to help him hold a pencil using whatever hand strength he could get out of his floppy hands.
After the diagnosis, Monster switched to another OT, one that was now covered under the new diagnosis.
These OT's are amazingly accepting, helpful, wonderful, caring people. They put so much care and kindness into their work and have such positive attitudes.
Yesterday I called Monster's school psychologist to ask her about him. He's seemed stressed these past couple of weeks and I wanted her opinion on him. She told me that Monster works SO hard at school and is so proud of his accomplishments. She said he will keep at something even if it's hard for him at first, and he'll work at it until he can do it. She was very impressed with his persistence.
I had to think about that for awhile. Where did this come from? I'm not like that - I give up on everything. Hubby - well, he's the same way. We're just not the type to force ourselves to keep trying at something we don't really want to do. Or do want to do, until we see that it's hard.
Then it dawned on me. It was the OT. My son had learned to be persistent, to believe in his abilities, as he toiled away at OT working doubly hard to do things lost kids could do without even thinking about it. There, in the kind, accepting care of these wonderful young women, my son developed the attitude about himself that he could do anything he chose if he only tried harder.
When M was first diagnosed by the school I asked the people on his team that, if we had to choose, what should we do for M as an outside school activity? Should we continue his OT, or put him in a social skills class? They all agreed that Monster need social skills classes so much more than OT. Well, it turns out SS classes are REALLY expensive. At the time M wasn't on MA so we would have had to pay it all out of pocket. Our choice to keep him in OT was due to the fact that our insurance now paid at least a percentage of the OT.
Now if anyone with a young child just diagnosed and is suddenly not knowing where to turn and thinking, Oh no! I need to get my son OT and PT and ST and SS classes and.....! I would tell them, get him into OT first. Give him that base, that sense of "I can". It's a strength that will take my son so far in life. He may have to work twice as hard to do stuff, but he's got the will and the strength to do it.
And I think we owe it all to the OT. They gave him this belief in himself. And I am so grateful that my son received this gift.
Posted by Pangaia at 3:30 PM 2 comments
WEDNESDAY, MAY 21, 2008
Mean people
There are people out there who go out of their way to make my son feel bad about himself. I don't know why. These people are just plain crappy people who obviously hate themselves and look for vulnerable people to take their self-hatred out on.
So I build my son's defenses every chance I get. It seems like the best talks happen on the ride to swimming lessons every Wednesday night. The traffic is awful, we're sitting in the car for at least a half hour, and we're not really going anywhere very quickly, so we talk.
And tonight he brought up the evil bitch at his last daycare. The woman who called him "Special Ed" when there were no other adults around, and then told the manager when questioned that she was calling him "Special Friend" and he must have misunderstood.
I said to him, "you are in special ed, you know that, right?" and he said yes. Then he asked, so why was this woman mean for saying it to him?
Because, I told him, some people will say things to you because they want you to feel bad. She said it in a way that she was hoping you'd be sad about it.
It's complicated, but I explained it as best I could; people could say something to you like, "Oh, you're in special ed!" in a tone of voice like it was just an interesting fact about you. Then some people will say it like it's a bad thing, or they'll say you have Asperger's like it's a bad thing, and the only way they can make you feel bad about it is if you feel bad about yourself.
So I'm trying to explain to him, YOU know it's okay to be in special ed, right? YOU know there's nothing wrong with you - you have Asperger's, and all that means is your brain works differently than most other kids', but it doesn't make you bad or wrong. You know that, right?
And he tells me, of course I know that. And I believe him. For now.
But I wonder how long it will be before other kids' (and adults', which I shouldn't even have to worry about, but people sometimes suck),opinions of him matter more than what his mom and dad tell him. Right now he's in this happy little bubble we've constructed for him, and for the most part he feels safe and supported. When people do try to make him feel bad about himself, he seems to let it roll right off, but then he also is a kid who doesn't let on about what is going on in his head. So who knows?
Someday though, he will notice the differences more. I see them more, as his friends and classmates grow up with him. His differences are becoming more pronounced. Other kids are becoming more aware. Monster knows he's different but what about when he one day decides that being different really sucks?
These kids get anxious a lot. And they are prone to depression. Because they are so sensitive even while they are seemingly oblivious.
Monster has been having lots of nightmares these past few nights, bad days at school, and he is showing stress by doing things like asking hubby and I repeatedly what our names are. I am stressing myself over this because I don't know what's wrong. He had leg pains - maybe it's growing pains? I worry that someone is treating him badly and he isn't telling us. He had that one DCP who flicked him in the head and spanked him, and we didn't find out about it until months after M had been kicked out.
But then my stress helps feed his. I need to relax. But I worry so much about this kid. He's so vulnerable. I can't protect him forever (and obviously haven't even done the greatest job up to this point). I guess that's why I'm particularly stressed. Because I've already let my son down so many times. I can't stand the idea of this happening again and again. I do my best and it isn't good enough. People hurt my kid. And I hate it.
Posted by Pangaia at 9:07 PM 0 comments
THURSDAY, MAY 15, 2008
More about the after school fiasco
I've been trying to figure out what's going to happen next fall, since hubby's company is moving way south and he will not be able to get home in time to meet the bus come next fall. So I'm trying to pin these people down on something - ANYTHING. Here's my emails and the responses so far....
Hi Mrs.____, I am not sure if you are aware but Monster is now at ______ in a special ed class. I understand all but one of the special ed classes are based at ____ (as opposed to the one M used to go to). Does your After School Care program offer daycare for these special needs children at _______? Is there a chance that Monster could be included in the fall? We are set for the rest of this school year and the summer but we will need to have a place to put him come fall. I was just thinking, with all of those special needs kids over there, that there may be a special program I haven't been told of?
Thank you,
Monster’s Mom
ONE DAY LATER....
Hi Mrs. ____, I'm sorry to be rushing you, but my husband's boss is trying to pin him down on what his hours are going to be in the fall. The setup he has now where he can meet M's bus is temporary, and he will be able to switch his hours in the summer. What we need to know is, is he going to have to switch back next fall? It's very important that we know ASAP if there is a place for Monster or not, because my husband's job is at stake here. Please let me know today. And please - I don't need to meet with you on this. It should be a simple answer and something my husband can tell his boss right away.
Thank you,
Monster’s Mom
Hi, Monster’s Mom--Although there is an special education room at ______, The After School Care program doesn't have a program set up specifically for the children who receive services in the special ed room during the school day. You can sign Monster up for After School Care for next fall. At the end of the summer, we would need to meet to discuss what Monster's needs are going forward into the 2008-09 school year. That will give us all an opportunity to reconsider his needs and what reasonable accommodations can be made so Monster can be successful in After School Care at ______. Hope this helps.
Mrs. ______
Manager, Youth and Family Services Programs
City of _____________Community Education
Hi Mrs. _____,
I am curious what sort of accommodations you will be willing to make for Monster that you don't claim you've already tried for him? Because we were told this same thing last fall and then as you know he started getting written up almost as soon as he entered your program. Monster will not be different. After School Care couldn't handle him this year. I'd like to hear what sort of ideas they have to help Monster be successful next year?We can sit down and have a meeting and ASC will give us all of their good intentions but it's all hot air when they aren't willing to back them up. So - before I tell my husband everything is set for fall, please let me know how Monster will be handled more successfully this time around.
Thank you.
Monster’s Mom
Posted by Pangaia at 1:46 PM 2 comments
WEDNESDAY, MAY 14, 2008
Birthday party invitations
It's one of those universal things that moms to ASD kids worry about. Party invitations. They seem to go out ot everyone but our kids. I've heard enough moms' stories to know that kids don't like to invite the "weird kid who hits/throws tantrums/talks about dinosaurs nonstop" to their parties.
So maybe this is why my heart skipped once when I saw the small white envelope in my son's backpack.
And then I thought, how stupid of me. This happens all the time.
Thank you notes and party invitations look exactly alike, size-wise.
Too many times I have pulled an envelope out of my son's backpack/cubby/folder and gotten that same little jump, only to open it and find a nice thank you note from a teacher or aide. Sweet, but disappointing.
Today though. Today was a real-life birthday card.
I asked Monster, "Who is A___?" and he said, "Oh, he's my friend!! He's in my homeroom class!"
And I raced to that phone and called and RSVP'ed before other parents had probably even found and opened their kids' envelope. I wonder if I sounded as foolishly overexcited as I felt?
Oh, my son has been invited to quite a few parties. But not from kids at daycare or school. This is the first. And I hope not the last. Because just because he got this one does not mean he's made it to the other side yet. But it's a start.
It's sad that I get so excited about something like this.
My son. Someone who knows him from school wants to have him at his party. This is wonderful.
Posted by Pangaia at 8:33 PM 2 comments
FRIDAY, MAY 9, 2008
A rough week
We have a back-and-forth notebook going on between Monster's teacher and me.
Monster has had a rough week. Today she wrote in his notebook that he hit another child. Then she noted on the edge of the paper, "This is the THIRD incident he has had with a peer this week!"
Maybe it's becaue I am sick today and feeling rotten, but this is really bothering me.
Why emphasize to me how badly my child is behaving? Why tell me he has hit THREE kids this week? What am I supposed to do?
He's in that class because he has aggression issues. I am aware of these issues. I've been dealing with them since my son was less than two years old. He gets aggressive, yes. I am well aware.
She thinks something is going on at home. What she doesn't understand about me - because she hasn't known me very long - is that I will tell her everything I know about why Monster may act up that day. I have a couple of times written to his old case worker; "Hubby and I had an argument last night, and M was pretty upet about it." I'm not afraid to tell them if our home life is going badly. Only, the trouble is, it isn't.
Part of me feels annoyed about this. I want to write back, "So what? That's what he's there for, right?" I mean, what else can they do to him? If they kick him out of there then they can pay to put him in some private school that can deal with him better.
I just get really disgusted with this constant need teachers seem to have to remind how awful my son can be. Do they think I am blind to this?
I don't need people to remind that this is the THIRD TIME my son hurt someone. This teacher writes to me every day. I know he's hit kids three times. Why reemphasize it? What's her point?
And where is the autism specialist, who was going to be RIGHT THERE, completely involved with this teacher because this teacher's specialty is not ASD, it's EBD. I was assured that Monster would still do wonderfully, though, because the autism specialist assured me she would work so closely.
Okay, I'm just venting. I don't know why this irritated me so much.
I will write a note to her for Monday. I will write, "I know he's being difficult, and I know it's frustrating. Please remember that my son cannot always control himself. He doesn't want to be bad."
Or maybe I won't. I just wish she knew.
Posted by Pangaia at 5:12 PM 6 comments
WEDNESDAY, MAY 7, 2008
Is something going on at home?
I wish someone had given me a hundred dollar bill every time a teacher or daycare worker has asked me this question. The implication is explicit - what are you doing to this kid to make him behave this way?
It feels like blame to me. Maybe because I've been asked it so often, and before Monster's diagnosis I took it to heart. What WERE we doing wrong at home to cause Monster to go berserk when he was in daycare/school?
And to be asked this now, by the teacher of the EBD class (Emotional/Behaviorally Disturbed, I think?) they stuck him in, well, GEEZ!! Even YOU think I'm screwing up my kid somehow?
Oh, it's also my fault that my son is an only child because apparently THIS explains some of his bad behaviors. Which makes no sense to me because I know lots of moms to onlies with wonderful, well-behaved children.
So. What is going on at home?
Weekends, Hubby or I take Monster someplace fun, or he plays outside with his friends down the street, or we invite his Aspie friend over to play Lego with him. We putz around the house. Monster plays on the computer and watches TV (A-HA!!!). His bedtime is 8:30 on Friday and Saturday nights. Monday through Thursday it's 8. One night every weekend Monster gets to fall asleep in bed with me.
Hubby and I rarely fight. We don't spank Monster. We barely even have to punish him, because at home, with our little family, he's usually fine. He gets worked up when hubby and I have the rare argument. Then when we're done arguing we both talk to M to tell him, even when we fight we love each other and we NEVER stop loving you.
We don't drink, or smoke. We actually live very boring lives. I pop pills to help me sleep, but Monster is asleep when I am Under the Influence. And I take antidepressants to keep myself from jumping off something high.
So yes, dear teacher, there IS stuff "going on" at home. It's us living our lives. Are we screwing up our kid by simply existing? Maybe. Maybe Cartoon Network for an hour every night is not good for him. Maybe letting him explode Lego bodies on Star Wars Lego II on his Nintendo makes him evil. Maybe it's the chocolate treats he gets every night during his TV wind-down time.
Okay. So I yell at Monster. More than I care to admit. But he frustrates the SHIT out of me (excuse my French). So if anything is screwing up my son it's that sometimes he pushes me to my limit and I yell. I dare anyone to live with this kid for a month nonstop and NOT yell at him. And I feel horribly guilty about it. Because I love this kid to pieces and I yell at him and hurt his feelings.
So maybe I'll tell his teacher, yeah, I yell at him. Mia culpa. It's always the parents' fault, and more often than not the mother is more to blame than the father.
Just stop asking me if anything is going on at home. My guess is that my mother-in-law's death in February is just now getting through to him, because suddenly he is obsessing over death and wondering when we will die and where we go. And he asks why his grandma died. So maybe it took him over two months for this to sink in, since he barely knew his grandma (she lives 2,000 miles away and I think we visited with Monster three times). Or maybe he just has his good days and his bad days like we all do. He's a kid. He's allowed to be crabby. Quit asking me what I am doing to cause it.
Posted by Pangaia at 9:24 PM 0 comments
TUESDAY, MAY 6, 2008
Guilt
Motherhood just naturally comes with guilt. Every mom second-guesses herself, beats herself up when her kid gets hurt, spends her nights awake mulling over the should-have-dones and should-not-have-dones. I guess it's part of momhood.
So I don't claim to understand all mom guilt. But I understand my own.
I didn't appreciate the good points about my son until he got diagnosed at 4. I just didn't. I spent years blaming myelf, blaming Monster, blaming Monster's daycares and schools, for all of the troubles. But mostly I blamed myself. No good mother would have a child who acted the way mine did. What was I doing wrong?
From the time my son was two we were told by daycare workers (whom we mistakenly assumed were licensed in child care) that we needed to punish my child to teach him. Bad day at daycare? No treats, no TV, no computer. Of course Monster spent many evenings crying because once again his treats and TV were being taken from him.
We were punishing my child for stuff he had no control over. We didn't know it at the time, but it doesn't stop the guilt. After all, I contributed to my son's sense of self - his idea that he was a bad kid who could not be good no matter how hard he tried.
And placing him into one daycare after another just added to his feelings about himself as a bad kid who couldn't do anything right.
And during all of this I wasn't appreciating his sweetness, his goodness, his kindness, his loving heart. I only saw the bad kid I couldn't control.
The diagnosis was a blessing. Once I got a reason for M's behavior I was able to stop blaming everyone and simply focus on the wonderful parts of my son. I wish had had him diagnosed a year earlier, when I was first hearing hints about 'that word' - Asperger's. I let people talk me out of it - if he had it, he wouldn't want to have friends. If he had it, he wouldn't let you hold him. And I listened for another year, not wanting to label my son, wanting to pretend that everything was fine and I just needed the secret cure.
Now I feel that I lost time when I was mostly angry with Monster and myself, and I could have been loving him and telling him what a good, smart, wonderful boy he was.
I can't change the past. But if anyone out there has a toddler who gets kicked out of daycares, who seems to act badly no matter what you try, think about getting him/her tested.
In the end, the diagnosis doesn't change your child. It changes the way you see your child. And that makes all the difference in the world.
Posted by Pangaia at 7:20 AM 2 comments
SUNDAY, MAY 4, 2008
Books that I love
These books have all changed me and my way of looking at autism and Asperger's with new eyes. There are so many books out there and I have read maybe 50, and these are the ones that stood out for me.
This one is for my son.
I Am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High-Functioning Autism
http://www.amazon.com/Utterly-Unique-Celebrating-Strengths-High-Functioning/dp/1931282897/ref=sr_1_24?ie=UTF8&s=books&qid=1209926406&sr=1-24
Thinking in Pictures, Expanded Edition: My Life with Autism
http://www.amazon.com/Thinking-Pictures-Expanded-Life-Autism/dp/0307275655/ref=sr_1_44?ie=UTF8&s=books&qid=1209926600&sr=1-44
This is one my son's school uses with him successfully
When My Worries Get Too Big! A Relaxation Book for Children Who Live with Anxiety
http://www.amazon.com/When-Worries-Relaxation-Children-Anxiety/dp/1931282927/ref=sr_1_61_s9_rk?ie=UTF8&s=books&s9r=8a1080b6124c47ff0112b405bc170f8a&itemPosition=61&qid=1209926716&sr=1-61
Chicken Soup for the Soul: Children with Special Needs: Stories of Love and Understanding for Those Who Care for Children with Disabilities
http://www.amazon.com/Chicken-Soup-Soul-Understanding-Disabilities/dp/0757306209/ref=sr_1_81?ie=UTF8&s=books&qid=1209926806&sr=1-81
Look Me in the Eye: My Life with Asperger's
http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307395987/ref=sr_1_84?ie=UTF8&s=books&qid=1209926806&sr=1-84
Another one for my son - this was sent to me by a very lovely friend.
All Cats Have Asperger Syndrome
http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814/ref=sr_1_91?ie=UTF8&s=books&qid=1209926961&sr=1-91
Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, And Professionals Share Their Wisdom
http://www.amazon.com/Voices-Spectrum-Grandparents-Siblings-Professionals/dp/1843107864/ref=sr_1_95_s9_rk?ie=UTF8&s=books&s9r=8a02b54114f36e0501155121ee7a0c4b&itemPosition=95&qid=1209926961&sr=1-95
Another wonderful book Monster's school is using with him
Incredible 5-Point Scale ¿ Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses
http://www.amazon.com/Incredible-Assisting-Understanding-Interactions-Controlling/dp/1931282528/ref=sr_1_134?ie=UTF8&s=books&qid=1209927194&sr=1-134
I highly recommend this one - it gave me a whole new mindset about autism
Unstrange Minds: Remapping the World of Autism
http://www.amazon.com/Unstrange-Minds-Remapping-World-Autism/dp/0465027644/ref=sr_1_140?ie=UTF8&s=books&qid=1209927194&sr=1-140
The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs
http://www.amazon.com/Elephant-Playroom-Intimately-Extraordinary-Heartbreaking/dp/B00149NX8C/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1209927525&sr=1-1
Another life-changing book for me
Not Even Wrong: A Father's Journey into the Lost History of Autism
http://www.amazon.com/Not-Even-Wrong-Fathers-Journey/dp/1582344787/ref=pd_bbs_sr_2?ie=UTF8&s=books&qid=1209927617&sr=1-2
The only fiction book on this list
Daniel Isn't Talking
http://www.amazon.com/Daniel-Isnt-Talking-Marti-Leimbach/dp/0307275728/ref=sr_1_1?ie=UTF8&s=books&qid=1209927688&sr=1-1
Martian in the Playground: Understanding the Schoolchild with Asperger's Syndrome
http://www.amazon.com/Martian-Playground-Understanding-Schoolchild-Aspergers/dp/1873942087/ref=sr_1_1?ie=UTF8&s=books&qid=1209927764&sr=1-1
To note: None of these books are how-to books for parents. Not that they are all bad, only that I have run into the same problem with these books as I have with regular parenting books - these books for the most part do not apply to my son. ASD is so diverse, and even Asperger's children are such completely unique individuals regardless of this shared label, that these books feel like they don't "get" my kid.
All of the above books are real stories from real parents "in the trenches", except "Daniel Isn't Talking" which feels as if the writer has actually experienced autism enough in her life that her accounts are accurate.
The two I mention as "life-changing" for me were ones that remapped the way I saw autism. They gave me understanding of the history of autism and the types of people over time who were autistic and how it affected their lives. I was amazed by both of these books. Both authors did so much research, simply out of a love for their own autistic children and their own needs to research its history, and share it in such a way that is almost mermerizing.
The Elephant in the Playroom is an amazing books for parents with a new diagnosis. The need to feel understood and not alone is a huge one for us parents of special needs kids. This book will give the reader the knowledge that not only is she not alone, but she will survive this all and will not only survive but triumph. Very uplifting.
Anyhow, that's my list. I'll add to it as I read more. If you are interested in reading about Asperger's and ASD I would highly recommend any of the above books. Don't worry so much about the ones that promise to cure your child or help you fix their behavior. If your child is like mine, his behavior needs to be fixed in school (where the misbehaving happens) and not so much at home, where usually he is simply being a snotty 6-year-old with an attitude.
Happy reading!!
Posted by Pangaia at 1:40 PM 0 comments
Courage Part II
I have been a cowardly person for most of my life. Whatever anger I felt I kept deep inside of me where it morphed itself into feelings of depression and helplessness. I didn't know, really, what courage would feel like inside of me, and had no idea how to find out.
I've told the story about the anger that arrived the day my son was born. Raw, animalistic, powerful. And for once it aimed itself outward toward the world, instead of settling itself inside of me. It was at once frightening and thrilling. To know I held a power within me that could be used to protect and later advocate for my son felt like a true gift. And it was.
What happened, though, when the anger subsided (as it has over the years. Just like any other strong emotion, it's not one a healthy mind and/or body can keep up for extended periods of time)? That is when something even stronger, even more powerful, began to show itself, as something new that had been growing slowly within me, hidden by my anger but growing nonetheless, emerged.
Courage.
I have not even in my life been courageous before. This is yet another of the countless gifts that being a parent has brought me. And it wasn't like I was handed this gift; I worked for it. I fought and feared and cried and screamed and somehow, I fired within me this hard, shining, priceless jewel of courage.
What does this mean for me? That although I still expect the worst from the future sometimes and still lack hope that everything will be well, I do not fear it. I have found a strength inside of me that tells me I can handle whatever comes my way.
I walk into these large meetings where my son's future in school is discussed, and I take the lead. I ask questions and expect to be treated equally and not talked down to, as I was in the beginning because I was a beginner with no knowledge, and didn't know that I was as much an expert on my child as any of these other people, and that my input mattered and counted.
I am no longer afraid to ask for anything that I think may help my son. I used to hate picking up the phone and talking to people. But I don't hate to do it now when it's regarding my son's agenda. I call these people up and tell them what I want.
Having courage also means sometimes accepting that you may need to try something for your child that scares you (and not him because you will never let on that you are afraid!). If you know the benefits for him are in something that seems a little "out there", you give it a shot, knowing you will protect your child through it all and that you have the power to put your foot down and say, enough, if it starts to get scary/painful for your child and you don't see the fear/pain as necessary for his growth.
Allowing my child to sometimes feel that fear and pain is a big one for me. I don't want to see my child hurting ever. But I know that pain sometimes helps growth. I know because I am new to this too. I may have forgotten how pain helped me grow in my childhood, but I recently had to go through the pain that brought me to this point. And I know my son must sometimes experience some pain. I need to give him credit that he can handle a bit now, a bit more as he gets older. I need to allow him to find his own shining jewel inside of himself. The constant monitoring of "is this too much/not enough?" will get old, I'm sure. But I will always do it.
What else does courage feel like? Strength. A willingness to be myself without worrying what others think of me. A willingness to stand up for my child without caring how others see me. A willingness to allow my child to be himself without caring that I am being watched and judged and found inadequate by other parents.
And courage forced me to look for a job that will someday hopefully turn into a telecommute job so we never have to go through the nightmare of having Monster kicked out of a daycare ever again.
It's going to be a long hard road with Monster. I feel ready. I don't know what lies ahead, but te gifts he has given me so far will bring me through. And maybe there are more gifts coming. You just never know what's out there.
Posted by Pangaia at 10:56 AM 0 comments
SATURDAY, MAY 3, 2008
Summer - dare I hope it's coming together?
This may work. It has to work.
Okay - our parental fees for Medical Assistance are about to double for some odd reason. But still. This is what we have worked out for the summer, and it is all coming out of MA. So it's paying for itself.
We have a PCA. She is our teenage neighbor and she has been approved.
The place that manages our PCA hours also has a day care program that can be paid for using our PCA hours, and Monster has been accepted into that. We can put him in all five week days, one, drop in, whatever. This has been approved.
Monster has been accepted into a treatment program for kids with behavioral issues. Once again, I find myself arguing that Monster may not fit into a program like this, because the other children are, for the most part, children who have behavior issues due to neglect, bad home life, trauma, etc. Again, NOT my son, but his classroom at school seems to be working for him, and they recommended this other place, and Monster was accepted.
Small side note. I had to sign a form saying it was okay to place my child in a locked room if he got out of control.
I hate the idea of this, although they already do this at school too.
I hate that this is something that will happen to my son.
But I don't know how to get around it, except to quit my job and homeschool the kid. And well, we can't do that.
Hubby says Monster will be fine. It's a calming room. It's not a prison cell. And I picture my child in 10 years and wonder, if I allow this now, will they give him enough control over himself that he doesn't end up in a REAL cell, in jail or juvenile hall?
I just hate that this is stuff I even need to consider.
So this is the deal. If it works.
And I just have to say, this all fell into place after almost a year of frantically running around like crazy, and oftentimes wanting to give up because nothing was fitting. Nothing seemed to be happening. But then suddenly, everything seemed to line up and come together, and I love to see my hard work actually achieve something for Monster that is actually a good setup, not just OMG we have to find something we'll take anything! sort of thing.
Anyhow. Setup.
PCA (We'll call her Katie) will watch Monster 20-25 hours a week, and it will be broken down like this.
At the moment there is not an opening for Monster yet at the behavior program. Until there is, once school is out, Katie will watch Monster 2-3 days a week, and he will go to the PCA management program the other days.
When the behavior program gets a space, Monster will be watched by Katie 5 hours each morning M-Th and be picked up by the van which will deliver him to his afternoon program and bring him home.
Fridays he will go to the PCA management place.
This can work. And Monster will get lots of positive attention from Katie and lots of valuable skills from the two programs.
And even though the economy is tanking, I am allowing myself to look into the future, next September, when I will have put in enough time at my new job (did I mention I have a new job? Same co, just a promotion and a job with opportunity to telecommute) to ask for a telecommute position, I can put in 7 hours a day in between pickups at school and dropoffs from the afternoon program (which continues into the school year) and work 4 hours each Saturday.
This can work.
I can't help but be hopeful. Which sort of worries me, because I know things can't come together this perfectly without a glitch.
But for now, I am just happy that I have managed to pull this off.
Posted by Pangaia at 7:28 PM 0 comments
Shields
A whole day and night to myself.
Hubby took Monster cabin camping today and they're coming home tomorrow. I watched three tear-jerker movies today and got some paperwork done for all of Monster's new summer schools.
There is a certain sort of energy that Monster carries with him. It's electrical, and you can sense it whenever he's in the house. I find myself mentally engaging my "energy shield" on my way home after work or when he's been gone and is on his way home.
I'm not shutting him out. It's more like I am holding in some of my own energy because if I don't he drains me completely.
It's not intentional. I don't blame him for it. It is what it is. I don't know if it will change as he gets older.
But letting down my shield for a full 24 hours is feeling pretty good.
Posted by Pangaia at 7:18 PM 0 comments
WEDNESDAY, APRIL 30, 2008
Do I have courage?
This is what Monster asked me today.
It went like this.
"Mommy, what is courage?"
"It's being brave and strong."
"Do I have courage?"
"You sure as heck do!"
"Tell me why I am strong and brave. Tell me brave first."
"You're brave because you walk into dark rooms. You sleep in your own bed. You stand up to your friends when they try to get you to do bad things. You get onto the schoolbus by yourself every day and go to school. You try new things. "
"And how am I strong?"
"Well, when you use it this way, "strength" isn't about muscles, it's more about being strong inside."
"Like, when my friends call me a bad name and I don't let it hurt my feelings because it's their problem and not mine?"
"Exactly! And you are VERY strong-willed. That's a good thing lots of the time."
"So I have lots of courage?"
"Oh yeah!! TONS!!"
And I swear I saw his little chest puff up just a bit. I felt so good about the conversation.
I just love my little Monster so much!
Posted by Pangaia at 10:07 PM 0 comments
TUESDAY, APRIL 29, 2008
Cells
"Calming rooms", they're called. And apparently my son spends at least a few minutes most every school day in one.
This bothers me.
I don't know why.
I have signed him up for half-day classes at a special school for children with behavioral difficulties (this would be for summer and in conjunction with school when it starts back up). I had to sign a release that it was okay to place my child in a locked room alone if he was out of control.
Sigh.
I sit here thinking, I shouldn't have to sign these releases. My son shouldn't need to be locked up. But he does need it. Even I would admit it. The kid is STRONG. He's 6 years old, over 4 feet tall, and is 54 pounds of solid muscle. When we wrestle on the bed he sometimes really CAN pin me - it's not always me pretending.
So of course the teachers don't want to be hurt. And they don't want the kids hurt.
I just hate that this is part of my son's life. I just don't know what the alternative is anymore.
I watch cop shows on TV and think to myself, I can do this now or he can end up in jail when he gets older.
But what if he goes through all of this and still ends up in trouble when he's older?
I hate that there are no guarantees. Just hate it.
Posted by Pangaia at 9:55 PM 0 comments
TUESDAY, APRIL 22, 2008
This is my son, in an EBD class
Monster is in his third week in his new classroom. The EBD room, the one I was so afraid to put him into. Because, you know, he's six, and the other boys in the room are 8 or 9, and they have different issues than my son. Everyone was against this move besides Monster's team. Even me.
But now.
My son is learning. He is sitting still and he is reading and doing math with 1st graders, and sitting in on circle time with kindergartners, and he is actually doing schoolwork and he is LOVING it. Who would have known that, in the right environment, my son would suddenly decide that sitting still and doing schoolwork would actually be something he enjoyed?
I guess the moral of this story is, you need to go with your gut. Research as much as you can. Ask for as much advice as you can. Make the teachers and the whole school team tell you their whole plan for your child, and why they think this is the best place. Make phone calls and see if you can find a better place.
Then, take a deep breath, and follow your gut. And don't look back. Because you did your research and you made your best choice. Yes I have changed the trajectory of my son's life. I got lucky this time and made (I think) a good choice. But if this turns out to be a wrong choice, I will try to remember not to beat myself up over what I chose. We can only make the best decision with the information we have. It's a gamble. And it's your kid's life. But you have to move forward and choose paths.
I think it's important to always look forward.
Posted by Pangaia at 9:04 PM 0 comments
SUNDAY, APRIL 20, 2008
Growing up normal
This six-year-old boy of mine has suddenly developed an attitude. He's a smartass. He talks back and mouths off. And I wonder, is the EBD classroom to blame? Is he picking up attitude from those boys? I'm going to ask his teacher what she thinks. I really have no idea how much exposure he's had to these boys. But they're all second graders, and my son is still in kindergarten.
But then there's part of me that thinks, this is normal 6-year-old behavior. And it is. So I wonder, is this a sign of improvement, in a way? A sign that he has taken another step into the "normal" world?
It's like the time I was arguing with his after-school-care director. She was telling me how Monster had called him aide the "f" word and a poopy head, and I had asked her, but isn't that an improvement in your eyes? Because it was in mine. At a point not too long ago in my son's life he would have simply whacked the woman. Not that what he did was right at all, but, you know, baby steps.
So. Recently I have been sending my son to his room for being a little smartass to me or his dad quite often. But even as I do it I wonder, is this progress, in some sort of odd, Asperger's world way? Because before he developed this attitude he simply threw tantrums. It's like he's found his own voice now, and he's using it, dammit.
This brings me to another, sadder sort of progress in my son. Sad for me, at least. Monster is not even my baby boy anymore. I knew it would happen eventually but when this attitude moved in his wanting to snuggle with me all of the time, play with me all of the time, want my undivided attention to the point that I sometimes thought I would suffocate, moved out. Sure last night he wanted to fall asleep in my bed. I have cut him down to once a weekend and any nights hubby isn't home. But he doesn't even seem to really mind anymore. He used to cry when we told him no. Now he just shrugs and asks when the weekend is.
I think a lot lately about that book, "Loverboy", and how terrible that mom felt when she realized her son was moving into the outside world and loving others besides just her and I see the tragedy she felt, the loss. Would I kill us both because I was losing my loverboy? Of course not. But I understand her despondence.
So. My Monster grows up and away from me. And even as I feel sad I also feel a sort of relief. As if I can breathe a bit. Today I yelled at him for wanting to come in through the front door when the back was already opened. Yes, I yelled. It was a buildup of the entire day, so it maybe wasn't as awful as it sounds alone. But for the first time ever this child held a grudge against me. Something we had planned on doing before I yelled, he suddenly changed his mind and said no, I want to help Daddy. And I realized that I knew this day would come, when I was not the beginning and end of his love and desires. When he could tell me no to something I had invited him to do. The umbilical, which maybe has been intact too long, has definitely been severed.
And I tell myself I should be sad. Maybe I should be. Maybe I will be.
Posted by Pangaia at 3:47 PM 0 comments
THURSDAY, APRIL 10, 2008
Important, exciting news (to me, at least)!
Parents of disabled children who need to sometimes take a day off here or there to care for your child – go to your HR right now and tell them you want to apply for Intermittent FMLA. I just found out about this and I am super-excited! I just got my first disciplinary action for missing work because my son got kicked out of the drop-in daycare and I had to leave to get him. FMLA will protect me from that in the future. So – if you get calls from your child’s school or daycare and need to go pick them up a lot, do this!
Posted by Pangaia at 11:16 AM 0 comments
WEDNESDAY, APRIL 9, 2008
A dog???
I’m reading this book, “Not Even Wrong” by Paul Collins. His son is autistic and he does all this historic research on autism and it is SO interesting and SO good.
I get to this part where he is visiting a prison in Wisconsin where service dogs are trained. And autistic people get mentioned. The author asks the man in charge of the operation, what would you teach a service dog to do for an autistic person? And he answers, keep them safe. Keep them from darting in front of cars, or being grabbed or scammed by people who take advantage of oblivious people. Teach them how to interact by learning love and kindness from the dog and toward the dog.
And I thought, wow, that is amazing. What an incredible idea. So I look up guide dogs for autistic people where we live and there is a local nes story about an autistic child with a service dog, that he is the first to get one and the family goes on and on about how much easier their lives are now with the service dog. And there’s a link to the website for the service dogs.I want one for Monster. I emailed them asking for an application. I think about my son who runs out in front of cars in parking lots, who will run across a street without thinking, who loves animals but isn’t quite sure how to approach them, and who wants so badly to have a close friend but doesn’t know how. And I think, a dog. Of course. But a service dog, even better. A dog who is trained to help my son. If they tell me no, your son does not qualify, the next step will be to work on hubby to buy Monster a dog. We’ve tried cats. Not only am I suddenly horribly allergic to them, but Monster develops horrible obsessive love/fear relationships with them. They wander the house. He doesn’t know where they are. They jump out at him and this leaves him always asking, “where’s the cat?” in a nervous voice. He asks us to lock the cat in a room overnight and we tell him no. He asks us to close his bedroom door at night and we do, but then bedtime becomes panic, “Close the door, quick! Quick!! THE CAT’S COMING!”
Stupidly, we tried cats twice. The first was a kitten and we decided quickly that a kitten was too vulnerable for our toddler boy – more than once I found him lifting the cat with his hands arounds its throat. We gave her away. We got an almost-adult male. But Monster started picking on him and this cat seemed like he had come from someplace abusive, and he started fighting back. He would jump out of nowhere and shred his claws down Monster’s legs. Monster would look at us aghast and scream, “He did that for NO REASON!” but of course there was a reason; the cat, like Monster, did not always exact his revenge at the moment he was injured. The two of them played this game of waiting until the other was vulnerable, not paying attention, and then one would kick, the other would claw, and both would again dash off and wait for their next chance.It was nightmarish. Kitty #2 had to go. But a dog. The RIGHT dog. A sweet, loving dog that doesn’t jump on you (Monster hates that) doesn’t lick your face off (he hates that too), isn’t too high-strung or jumpy (this would add to Monster’s already high anxiety – he needs a calming influence). A dog would be wonderful for my son. I just emailed them. I will tell hubby tonight but we won’t say a word to Monster about this type of dog or any dog. But this is actually exciting for me.
Posted by Pangaia at 3:10 PM
MONDAY, APRIL 7, 2008
Tooth #2 is out!!!
With much less fighting, screaming, and terror than the first one.
I think it helped that the sweet 10-year-old girl down the street was visiting. Monster is in love with her and would never want her to think badly of him. So he only screamed and cried a little bit.
From now on I am inviting the girl down the street to our house every time Monser has a tooth to pull.
Posted by Pangaia at 3:07 PM 0 comments
Thankful
I do a lot of complaining about the people I have to deal with on a daily basis when it comes to my son. I hardly even mention those who have been there for me through all of this and have given me support and good advise and kindness and reassurance.
1 - My son’s psychologist.
She specializes in ASD children. She’s about 15. Okay- she’s older, but she is way young, she loves her job and she is always willing to talk to me and reassure me when I am wondering if I am wrong like hubby or some teacher or another is telling me. She likes to tell me how “tough” I have become in this past year and just today congratulated me on keeping my sense of humor. If only she knew- I was really depressed before she called. SHE helps me keep my sense of humor. She is reassuring even if she thinks I need to change something. Her reaction at these times is, “Well, did it work? No? Maybe next time you could try this…”
Love her. Monster loves her although since she is sweet, young, and pretty she makes him shy.
2 – The school autism specialist
She came rushing in when Monster was having so much trouble and the school was trying to punish monster and reinforce how bad he was being. She straightened them out, educated them on how Monster SHOULD be disciplined, set up a chart for M to show him how he could “Hit a bump” but still go on to have a good day. She is the one and only person who took the time with Monster and helped turn his attitude about himself around from that of a bad boy who is bad every day to a boy who is good every day but hits some bumps. I love her and Monster loves her. She has changed Monster’s whole outlook on himself, which actually was quite simple since she knew what he needed and all Monster has ever wanted is to be a good boy.
3 – My support group
I put off going to these meetings for almost a year. I am not a social person and I couldn’t talk about Monster without crying anyhow. Month after month would go by and I would have a new excuse as to why I didn’t want to go.
Thank goodness I finally went. What wonderful, kind, understanding people!! What knowledge they have! They are so willing to share and help and give any info they can so that all of us are out there fighting our best fights. We even found a new playmate through the support group – a boy a year older than M who has the exact same issues at his school. The two of them get along SO well. I love that Monster has a playmate just like him, and that they really like each other.
I would not have survived without the supoprt group. They rock.
4 – My son’s pediatrician
He admits he knows very little about Asperger’s. But he signs off whatever we need him to sign off to get Monster the help he needs – prescriptions and requests for OT, PT, etc. He has always been such a concerned, kind caregiver toward my son. Aside from the fact that I had to argue with him a few times about CIO (he said do it; I said I couldn’t), he also was super supportive of my extended breast feeding and supported me when hubby and mother-in-law waged a war against my “fat” baby. “He’s a baby,” the doctor said, “babies are SUPPOSED to be chubby! If you come back and he’s two, and he still looks like this, and you tell me he’ll only eat Mc Donald’s, THEN we’ll deal with it."
By the time he was two, Monster was tall and healthfully thin and strong.
5 – My online moms to onlies board
I have given them hell sometimes because I spent a long time feeling isolated and misunderstood. But When I got over that feeling I realized that these other moms, some of whom I have known for over 4 years now – have lots of good ideas and experience, that has nothing to do with ASD and lots to do with simply being a mom. Since I don’t have a helluva lot of IRL friends these women are the ones I turn to for any sort of advice or support. Like my support group, I don’t know what I’d do without them.
6 – Angels
Okay, now don’t freak on me and think I’m getting all new-agey and weird. The truth of the matter is, there have been many more times than I can count when all seemed to be lost, and some obscure person would drop into my life, mysteriously and out of nowhere, and give me the advise, information, or support I needed. They have never stuck around long, but they seem to drop by when I need them most, deliver me some sort of hope, and then go on their ways. They can be (and have been) waitresses, coworkers I don’t know well, strangers at the park, nurses, county workers (like the one who helped me even though I wasn’t assigned to her, because I called her and begged her for help when my son was getting kicked out of one of his daycares), assorted but rare daycare workers, case workers, neighbors, etc.
7 – Other Children
Every child who plays with my son, who makes him feel that he belongs, even if only for the two hours they are together. Every parent who has picked up the phone and called to invite Monster over for a playdate, and every parent who has returned my call to get the kids together. My son hungers for friendship. Every time a child gives him just a few moments of their time, my son is able to go another day seeing himself as a good friend, a worthy playmate.
8 – Fate
Which seems to place my son and I onto roads that may look like they lead nowhere but after several stops and switchbacks it is clear to me that this path is leading us somewhere good and important. Fate may be something I am making, but it doesn’t feel like it. It’s like the angels; I don’t ask for its help, but it helps me anyhow.
I’m sure there are more. As lonely and sad as I get I know that there will still be people I can turn to, even if it’s some stranger who sits next to me at McDonald’s while my son is playing and I am ready to cry, and asks me what’s up.
I don’t even look for angels anymore. I just accept that they will show up. And they do.
Posted by Pangaia at 12:07 PM 2 comments
FRIDAY, APRIL 4, 2008
Pity Party
I seem to have cornered the market on pity parties. I throw them for myself quite often. It seems to give me something to focus on when life either throws me a whopper or gets too simple and I’m looking for ways to make myself feel awful.
Did I do this before Monster was born? Of course. But I had a much larger array of subjects to choose from back then. Now my whole focus is on Monster. So, when any tiny thing goes wrong, I fall apart.
Most of the time these falling-apart sessions don’t last long. My normal MO nowadays is
1. Freak out
2. Fall apart
3. Cry a lot
4. Whine to anyone who will listen
5. Get pissed
6. Stop whining and start fighting
7. With a new surge of fury, push self out of pity mode into action mode.
I’m getting quite good at going through these steps pretty quickly.
But what about when there is nothing to get angry about? What if there is nothing to force me to stand up and fight? Up until now I have had lots of fights. Whether or not they were truly necessary is a moot point. I fought them because a part of me felt that I needed to fight, or fall into despair.
But times like this, when I am down about something I have no control over, and there is really nobody to get angry with or fight with, what do I do?
I can’t seem to figure out how to bounce back without that surge of anger, of protective indignation over my child. There have only been two times since Monster’s diagnosis that I have had nobody to get pissed at, and both times I have found myself wallowing in self-pity for days.
There’s a good chance that the anger seethes inside of me if I can’t lash out somehow at someone or some group or some law. Depression is anger turned inward, after all. And I know there are times that I am angry with Monster, just because he makes my life difficult (is that the most selfish thing you have ever heard?) and of course I know this anger is wrong, so I keep it in.
And I repeat to myself, as often as necessary, “this child is a gift, this child is a gift….” Until I feel it again. The small catching of my breath when I see him after a long day at work. The way I feel warm and happy just hearing him talk. The way I love to hold him and cuddle and make him laugh. And then I can slowly pull myself back from the edge once again.
My child has made it possible for me to feel deeply again. If I can simply let those feelings be instead of labelling them and filing them away inside of me, holding them close in the tightness of my chest, I might not have to fight others or myself so much.
Posted by Pangaia at 3:54 PM 0 comments
THURSDAY, APRIL 3, 2008
Sucker Punched
A boxer in the ring must always be prepared for the next blow. He needs to be tensed, alert, watching always for the next fist flying at him. He needs to block, feign, duck, dance, and punch back. And if he does get hit, all of his muscles are tensed in anticipation, so the injury won't be so severe. He does this until his round is over. He gets short breaks. Then he or the other gets knocked out, and the match is done. He gets to shower up, go home, get a massage, and rest. His muscles relax. His mind slackens. He is able to drift idly through his life until the next match.
Today my son got sent home from his drop-in daycare. I saw it coming. It should not have been a surprise. But when the call came, I was devastated. I cried. I called my boss to tell him I had to leave, and cried the whole time (yeah, that just gives your boss such a good, confident feeling about your mental stability). I cried when I called my husband. I cried all the way to the building and the whole time I was picking him up. I wish I had been pissed. I wish I had been anything than this person I had become, someone who was wallowing in self-pity and despair.
I forget that I am not allowed to let my guard down. This is what happens when my guard is down; I fall quickly and heavily into the darkest spot in my soul - the spot where I wonder why people think suicide is so bad. The spot where I wonder what the whole point of living this life could possibly be.
And it's all because I set myself up for the sucker punch. I allow myself to relax, to trust that things will work out, that my son will be understood and cared for.
This is the second time I have been completely devastated by my son's being removed from a daycare. The first time was the same story - I was told, "We would never kick Monster out, we love him and the kids love him", two weeks before the daycare mom stood before me and said, "I'm so sorry. Monster has to go.
It's easy to forget that not everyone out there who cares for my son thinks he is wonderful and is willing to see past his occasional bad points to the sweet, loving boy we know. They have jobs to do. They have other children to protect. They are understaffed, under trained, and for the most part, underpaid. The last thing they need is a difficult, sometimes-aggressive kid to deal with. They want him out.
Is it completely jaded of me to think that if I had given these people no warning about Monster (since I am always 100% up-front about these things in the hopes that they understand what they are in for and so they can tell me right then and there that they can't be bothered), they may have simply treated him as a "Oh, boys will be boys" kid, told him to stop fighting with the other boy (because this was NOT an attack out of the blue when M used to run across the playground to seemingly randomly select a child to pummel to the ground, no, this was a boy who hit Monster and Monster his back), and given him a 10-minute time-out?
I'm starting to wonder if giving these places this information beforehand gives them the upper hand. Maybe for once, if they didn't know M's diagnosis, they may wonder what THEY are doing wrong and how can they make things work better, instead of simply telling themselves, "well, I don't know how to work with these Asperger's kids! How am I supposed to know!?" And then it's my son's fault and they can assure themselves that they ARE good caregivers, but not when they get those evil children like mine to care for.
So. My new rule is this. Stay on my toes. never let them catch me with my dukes down. Take short, short breaks to cool off and drink water, then get back out there ready to fight. I hate those sucker punches and their long recovery periods. I need to keep my gloves on. And the bell ending the game won't ring. And even as I tire more fighters replace the old. It's me, just me, against all of them.
They will not push me to that point of despair again, if I can help it. Trust no one. Don't get your hopes up, Don't trust those who think they can care for your child. They may be the ones winding up for the blow you never recover from. They seem innocent enough. But I refuse to trust anymore.
Posted by Pangaia at 8:57 PM 0 comments
WEDNESDAY, APRIL 2, 2008
Acceptance - will it happen for hubby?
I sometimes wonder if hubby will ever adjust to the fact that our son has a disability which makes some of the behaviors hubby expects from him difficult if not impossible for Monster to master. I don’t think Monster is really limited in any way, but when hubby says things like, “He’s six now, he should be able to do these things,” I have to remind him that yes, he is six, and many six-year-olds CAN do these things. Monster maybe can do these things. But the Asperger’s means the ability may be blocked in some way, or delayed. What everyone in M’s life is working at is to help Monster map out his differently-wired mind and come to the places school and society expect him to be. This can be frustrating for Monster. He doesn’t have a map with a red “You Are Here” arrow. He knows where he needs to get to, but he needs to get his bearings first.
The other night, and not for the first time, Monster asked me why Daddy is always crabby. Now, if I ask hubby why he’s always crabby he claims he isn’t. But you hear it in his voice – the frustration, the anger bubbling just beneath the surface. He is frustrated that he cannot bark orders at this child and expect complete obedience. Not because Monster doesn’t want to do it. Usually, he will comply if he knows how. My approval and Dad’s approval are very important to Monster and he does what he can to get it. But hubby is often gruff with the little guy, short-tempered and frazzled.And it’s sad, because I know he loves him. And he tries. It’s just the acceptance that eludes him, and acceptance that would break down the wall he builds between himself and his son. It’s sad to watch. Especially when he is often very jealous of the closeness between Monster and me. It’s what he wants. But he would need to give up an entire belief system he grew up with and he seems unable to do so. Or maybe he doesn’t even see that his way to his son is blocked, by him. He seems to think it’s my fault that there is this division between the two of them. But I am the one who tries to get them to connect. And Monster is always eager to work toward Daddy. But Daddy often slams the door in his little face. And it’s frustrating as hell to be the one watching it, and feeling helpless to get these two together.
So what do I do? I try to chip away slowly at hubby’s defense system, to get him to see Monster as the special human being that he is. Is he defiant, annoying, disobedient, and sometimes frustrating as hell? Of course. But right under that behavior, there is a small child who wants and needs his parents to love and accept him and guide him gently toward his own discoveries, his own path into society and his own place where he can feel as if he fits and belongs. I do believe he will find his way. I also believe he will do it with or without his father’s help. But if Daddy were right there beside him, I know it would make his trip easier. And I think hubby would enjoy the trip too, if he allowed himself to.
Posted by Pangaia at 3:17 PM 0 comments
TUESDAY, APRIL 1, 2008
Blossoming
I noticed something I do last night that needs to Stop. Right. Now. I still want to help him with everything. Dressing. Washing. He lets me, of course. But more and more if I don’t offer, he goes ahead and does it himself. Last night I caught myself as he struggled into his jammies – I almost asked him, “Do you want help with those?” and then I caught myself. I need to start giving him more credit for what he can do. I wonder now how many other times I’ve asked him if he needed help and took away a bit of his independence?
The other night we were watching videos of Monster as a baby, and there was my beautiful boy at 15 months old pulling himself up and scooting a chair across the floor on wobbly little legs. He may have learned to walk late, but he LEARNED, on his own terms, and the huge smile of pride on his face showed that it didn’t matter to him how old he was, how “behind” he might be. He was DOING it!
I can see in him the blossoming of a new confidence – a sense of himself as a person who can do whatever he wants to do. I know this is thanks almost completely to the school district’s autism specialist. She got pulled in when we were throwing fits about Monster’s getting suspended all of the time. She was the one who said to the school, look, you have a kid with Asperger’s. You don’t punish him like other kids. You praise him. You let him know what an amazing person he is.
This is a child who spent the first 5 years of his life being bounced from daycare to daycare, believing himself to be a “bad boy” because, honest to god, some of the teachers would tell him that. So you have this very smart, very frustrated, very misunderstood child who of course acts out because everyone already says he’s bad. Now, literally within months, the autism specialist has turned around the attitude of those who work with him and his whole outlook toward himself has changed. He believes in himself. He wants to do well, because others believe in him.
I’ve been trying to tell people for the past two years that my son was a good kid. Most people didn’t believe me. They pointed to his bad behavior as proof of just how wrong I was. I’m not wrong. My son is an amazing child. Does he sometimes hit and kick and tantrum? Yes. But he is so insightful, so wonderful and smart and sweet, that if people would just give him a chance they would see below the surface behaviors to the child I know. A sweet, snuggly boy who still asks for cuddles and kisses and wants to have sleepovers with me (those special nights when I let him fall asleep in our bed) even when he becomes a grownup. I hint to him that maybe there will be someone else special in his life that he may want to have sleepovers with, and he tells me, “Well, you can come too, Mama. I’ll invite you over. I’m sure you’d want to be at my sleepover too!”
Tell me again my kid is bad. I dare you.
Posted by Pangaia at 4:35 PM 0 comments
MONDAY, MARCH 31, 2008
3-1/2 hours to go (and then 4 more days)
Monster is spending the day at my company’s drop-in daycare. And so far he’s doing well.
The PCA flaked out on us. She said she could watch Monster starting last Friday, but then emailed from her vacation to say she had gotten mixed up and wasn’t coming home until Friday. I had to take that day off to watch Monster. Then Sunday I called to make sure everything was set for this week and supposedly she has appendicitis or gallstones or whatever. I am so glad I had a backup plan. I just hope Monster is good there. He just needs to get through this week.
I don’t know why but I have let this whole situation get me down. I feel like I’m sliding back down into darkness. My son is 6 and is so bad that no place wants him. But he isn’t bad. He’s wonderful. And I look into the future and wonder how often I will be left scrambling for someone or someplace to watch my son. We hopefully have a PCA for all summer, but then next year we have to figure out after-school care, or if we’re going to keep our hours the way they are now (hubby goes in super early to be home for the bus). And then the school closes all of the time. If this drop-in place can deal with him I can put him back there.
I’m just so tired of not being able to rely on people. I have trust issues to begin with and when people let me down I am doubly disappointed, because I really want people to come through for us, even if I don’t expect them to.
Posted by Pangaia at 12:19 PM 0 comments
WEDNESDAY, MARCH 26, 2008
It's done!
The mediation process….
The mediation guy contacted me for the first time yesterday, by phone. He asked me some questions regarding what I want from the mediation, etc. I told him I wanted Monster allowed back in. He said he’d tell them and call me back. He just called.
The lawyers for the school say that the after school program cannot accommodate my son, period. They are not there for education; therefor they don’t need to follow the same rules. It’s a bunch of BS, because I know the laws under Section 504. There have been other cases that have been won by parents of disabled children against after school programs.
Anyhow, the mediation process is over before it began. They aren’t budging. I said fine, pursue the case. At least I didn’t waste time on a long stupid meeting to be told they didn’t want to work with us at all.
Posted by Pangaia at 3:22 PM 0 comments
Musings on happiness
An online friend of mine asked theses questions; “Are you happy? What is happiness to you? Do you consider yourself to be happy most of the time?”
Am I happy? It depends upon how you define happiness. And as I thought about this question, I realized my definition of happiness has changed quite a bit since I was younger, and is almost unrecognizable when compared to my definition from when I was a child.
Since Monster came into my life my definition of happiness has once again changed drastically. The things that make me happy now are far from what I used to think would make me happy in the past, or what I considered happiness to be.
I was a very unhappy child. Looking back with the knowledge I have now, it’s easy to see that I was clinically depressed. I developed an obsession with death and suicide at a very early age, and my memories of childhood are all awful ones. Even the better memories of playing with friends outside of school seem colored by some sort of dark shadow that hovered about me, always reminding me that having fun did not last, happiness and play were only distractions for the moment. Most of my life was fear, anger and sadness.
In school I was a misfit. Not so much the friendless kind, because all through school I had friends I played with after school and on weekends. But in school the popular girls were torturous and my friends knew better than to draw attention to themselves by defending me. I didn’t blame them one bit. The relief came in middle school when a large group of wonderful girls took me in as one of their own and I had a large, safe place where I belonged. None of us were catty or mean to each other. It was a safe haven for three years. Those years were in many ways happy for me. We went roller skating every weekend and all summer long and those are some of the best memories I have of my childhood. We had freedom and we had unlimited time and energy.
High school though ended up being one long struggle to find happiness in drinks, drugs, sex, etc. And I had FUN, tons of fun in HS, but at the same time I was not particularly happy. So there’s my first clue about happiness – When I was having the most fun of my whole life, I was not happy. So fun does not = happiness.
Out of HS I got married and felt trapped and restless. Not happy. I did some really stupid things in my pursuit for happiness. A few times I came close to destroying everything in my life. Part of me believed that happiness could be found in freedom. To this day I long to have grown up a biker, a gypsy, a loner – someone free to come and go as she pleases, with no ties and no one to need me. But I also longed for the feeling of belonging – I have spent a good part of my life wishing I were American Indian because a) Indian women are beautiful, and I wouldn’t mind being beautiful, and b) they have a history that goes back forever and joins them cosmically. They have a sense of belonging I will never have.
If I belonged, or if I were free, would I be happy?When my life spiraled out of control and I ended up suicidal in a locked psychiatric ward, it was time for me to admit that my attempts at happiness were failing completely.
I think that was my first bit of understanding that happiness was something that needed to be found inside myself.
Antidepressants lifted me above the chasm and got me back onto solid ground. And for the next ten years I simply existed. I worked. I loved my husband. I tried to make friends but discovered I didn’t really like having friends and didn’t have much in common with anyone. My friend was my husband, and we did everything together. We did make friends at some points. We hung out with a couple who were hilarious and we always laughed so hard when we were together. But our times together revolved around drinking, and at some point the two of them would get too drunk and start fighting. Every time we got together. I finally had it and kicked them out one night and we never heard from them again. And my best friend before I moved across the country was another one who always wanted to drink. We had so much fun together and laughed all the time, but once again, we weren’t exactly happy, although at the time I think we thought we were. When I moved she got angry with me for abandoning her, and that friendship ended.If I had friends besides my husband, would I be happy?
Then Monster comes along. I was convinced I HAD to have a baby. I don’t know why. I just knew I was getting old and I needed to try.
Monster changed my life completely, but not in a good way at first. For a good two years after his birth I would find myself thinking constantly, “WHAT have I done with my life!?!” The child would not sleep. He was constantly fussy and unconsolable. The only thing I could do to comfort him was nurse him, which I ended up doing constantly for almost two years. Hubby and I fought all of the time because I was spoiling Monster, while I was grabbing at straws and doing anything I could to help this baby to not be so miserable. We fought over having him cry it out. We fought over how often I breastfed. We fought over whose turn it was to get up with this baby who didn’t sleep through the night until he was almost 4. I knew I wasn’t happy then. I felt like I had done something horrible to my life and my marriage. But I loved Monster so deeply that I never regretted having him. No matter how bad things were my Monster was beautiful and special and my love for him was fierce and strong.
As life crumbled and I sank deeper into despair over everything – my son, my lack of parenting skills, my husband – I spent many nights considering cashing it all in. There was so much unhappiness in my house that I didn’t know how to survive it.Through all of this, Monster grew and as he became more reconizable as a person I fell even more deeply in love with him. He started to bring me joy and I started to think we were through the worst. This was happiness. I survived the worst and got through. This was cause to celebrate.
But then Monster started getting kicked out of daycares. Something was wrong. And of course, according to everyone, something was wrong with ME, not Monster. So I hated myself for being this parent who couldn’t keep her child nuder control. I was the mom other moms gave dirty looks to when I entered the daycare for pickup. My son was a bully with rotten parents.
The Asperger’s diagnosis we got when Monster was 4-1/2 offered quite a bit of relief. I was able to stop hating myself and being angry with M for not being a “normal” kid. Even hubby started to come around and realize that these things were not my fault.
Through all of this I have decided that “happiness” to me is simply a state of contentment.When Monster doesn’t get kicked out of school, when my job is going well, when we are all at home together in the evening and Monster is happy and not crying and/or angry, this is contentment. Sitting in a quiet home knowing my loved ones are all safe and sound and we’re all together, that is happiness. Knowing on cold nights that we are fortunate enough to be someplace warm; that we are able to give my child food and clothing, and the extras that he needs – classes, therapy, etc. This is my happiness.
Getting the school to agree to something I ask for. Getting OCR to agree that my son has been discriminated against. Being able to help others who are struggling with everything I have struggled with the past couple of years – these things make me happy.
Happiness is fleeting and so when it settles around me I relish it now. It does have a lot to do with my state of mind but when I am stressed over five different things going on with Monster and school and daycare I am not able to find that place where I can be calm. This is probably something I need to work on. It’s only when the resolutions have been reached that I can rest. Rest is happiness.
Have I lowered my standards as far as what brings me happiness? It appears that way. But maybe what I have been forced to realize thanks to Monster is that happiness is not something I can buy or acquire. It’s something that I give to and receive from those that I love. Monster has brought me more happiness than I ever could have imagined, and instead of worrying over whether or not I deserve this happiness (which is how I’ve always viewed my own happiness in the past), I know that I have struggled, fought, screamed, cried, bitten, ached, ripped myself apart, in order to reach this place of quiet and contentment and rest, my new happiness.
And since I also know now that the fight for my son will never end – the places will change but there will always be problems that need my attention and sometimes I will need to struggle again – I know to appreciate the brief moments as the sweep by. They are well-deserved and I do my best to allow them to settle me without looking ahead. This has been something I needed to learn too, because I always used to spend my peaceful times waiting for “the other shoe to drop”. Now I know the shoe is going to drop. So I relish the moments at the plateaus, where I stop struggling and rest. Rest is happiness. Quiet is happiness. Warmth and shelter is happiness. Holding my hubby and child is happiness. Sleep is happiness. Books are happiness, and having the time to read them is bliss.
These are my lessons, learned hard and well. Thanks to my beautiful and amazing Monster. He is my main happiness.
Posted by Pangaia at 10:16 AM 0 comments
TUESDAY, MARCH 25, 2008
First day at new school - and "tooths" excitement
A small, happy boy called me at work yesterday to describe his day to me. He was so talkative, and not at all stressed and worked up. He talked to me for 20 minutes about everything that had happened at school. He was very happy. If I had to base everything on this first day (which I know is impossible), I’d say we’ve made the right choice and Monster is in the right place.
Not only does he seem relaxed and content, I FEEL relaxed and content. As if I have finally found my son someplace where he can flourish.
It didn’t help that my SIL told me on Sunday that EBD classes are ALL WRONG for ASD kids and she couldn’t believe they were doing this to him (and implying, I guess, that she couldn’t believe I had allowed it). I know that she only has her understanding of EBD classrooms, but I spent a long time researching and questioning about this place until I felt right about it. And I also found out yesterday that it in not an EBD class, exactly. Yes, most kids in there are EBD but they have had many children go through there who just need the help this teacher can offer. Like Monster. In other news, he was eating lunch yesterday and felt a crack and freaked out and finally his aide was able to look into his mouth and see that Monster had a VERY loose tooth. Monster cried for an hour at school, and then came home and cried for two + hours at home, telling us he wanted it out but he didn’t because it would hurt, back and forth, over and over, in a panic over this loose tooth that was driving him nuts. I finally got him to agree that he wanted it out that night, so I grabbed him, and while he screamed bloody murder I reached in an pushed the tooth forward just a bit and the thing popped right out. Then he screamed and cried for another 45 minutes because it bled. He refused to touch the tooth. Hubby and I were telling him how proud we were, how grown up he was, how excited we were, etc. But he just cried.
He finally got calmed down and asked me to take a picture. Then he seemed fine.And that night at bedtime I went to put his blankets over his ears like he asks for every night (to keep the monsters away), and he told me no. I said, but you always want your blankets that way. He said, “Momma, I know that when I was 5 I wanted my blankets like that, and for when I was six a little bit, but now that I have tooths losed, I am a big boy and don’t need that anymore.”
Too cute. Way too damned cute. And growing up SO damned fast.
Posted by Pangaia at 11:24 AM 0 comments
MONDAY, MARCH 24, 2008
The beginning - the end.
The little bus pulls up right on time and I walk my son up to its doors. The bus driver introduces himself and I introduce myself. He then introduces the aide who rides with him. She is buckling Monster into his seat. They seem nice, but his old bus driver was such an obvioulsy kind and caring person. These people I don’t know yet. What if they say or do mean things to my son?
This morning while he ate breakfast Monster told me he was going to be mising pajama day at his after school program. I told him, sorry, but we had to take you out of there because they weren’t treating you very nice. Sorry you have to miss jammie day. And I’m partly angry that I am forced to lie to my son because I refuse to tell him that he was not wanted there, that he was too difficult for them, that they didn’t like him at all. His aide liked him, which was why I knew he was safe there. She would not let him know the truth.
But now that’s over and my son is excited (his word) to go to his new school. Please god or whoever you are up there please make this a good place for my son. Please let this be the right place for him right now because I made my decision based on the best information I had but I still don’t know why this school doesn’t have an ASD program.Please let all of the teachers, aides, special ed team, etc, do what they promised and make this a positive experience for my child.It doesn’t help that my sister in law yesterday started in again about how these EBD rooms really are NOT right for ASD children. It made me feel bad again about this decision I made for my child.
Please let everything be okay.
Posted by Pangaia at 9:27 AM 0 comments
WEDNESDAY, MARCH 19, 2008
Interesting timing
The school district is now telling the OCR that they want to do the early complaint resolution, or mediation. Interesting time to tell us, since Monster’s official last day at the daycare is tomorrow. He isn’t going, though. Hubby is taking the day off to spend with him (Thursday and Friday are no-school days, and Monster would have to spend the whole day at this place that doesn’t even want him). I didn’t mind when he spent 1-1/2 hours there each day. A whole day would, if anything, just give them more ammo against my son.
I’m curious now how quickly this will go through. I have been wanting to get ahold of someone at Community Ed to ask them, without being a smartass, but seriously ask them if my son could be enrolled in summer community ed programs, even though the after school place didn’t want to deal with him. But I’m sure I’m not supposed to talk to anyone over there.
This ought to be interesting. A friend of mine told me her sister got so sick of dealing with all of the bullshit her daughter’s school was trying to pull on her ASD daughter that she went to school and became a lawyer. Maybe that’s my calling. To become a lawyer to fight for these kids. Lord knows they and their parents get jerked around enough. The horror stories I’ve heard just in my little support group make me so angry. We don’t deserve to be treated like crap when we’re just trying to make sure our kids are getting the education and care they deserve.
Now I’m a little excited. I want this to happen soon – I’m so impatient!
Posted by Pangaia at 11:07 AM 0 comments
tears free dropoff
Today I dropped Monster off at his new school. He will spend half the day there and then head back to his old school with cupcakes to have a little "goodbye" party with his classmates.
I didn't cry. Monster was excited beyond belief. Then his new teacher walked in to meet us. M suddenly sobered up and closed himself off. The teacher sat down next to him and asked, "How are you today?" and the kid who was 10 seconds ago spinning and dancing and jumping around answered, in a small voice, "kind of okay".
What a thrilling moment for me, because never before has this child expressed, in words, that he is nervous, worried, etc. He usually just throws a fit. But this teacher - she's so gentle and calm and kind, that instantly M is telling her about his feelings, something he almost never does with me or hubby.
I reminded her to not forget the cupcakes when Monster gets sent over to his other school. I showed her the bag with a change of clothes that she can put into his cubby. She will write me reports on his days.
I drove away and waited for the tears to come. They didn't. I felt happy and excited for my boy and I think this fresh start may be just what he needs.
Posted by Pangaia at 9:32 AM 0 comments
TUESDAY, MARCH 18, 2008
You know how you want special moments to go the right way?
Monster’s last day riding the “big bus” today.
And of course it was traumatic. It couldn’t be a simple, happy day. Monster was first in line but when the bus pulled up the brothers behind him climbed on first because M had been playing and didn’t even have his backpack on. So when they climbed on in front of him he threw himself down on the ground and started crying. I was hissing, “get up, GET UP!” and trying to shove his arms into his backpack straps. I finally got him onto that bus and he waved at me as it drove off, once again with tears just streaming down his little face. Sigh.
We had a talk about the benefit of the little bus this morning on the walk to the bus stop. The little bus will stop right in front of our house. Monster will always be “first” because he will be the only one getting picked up from our house. He wanted to know if he would be first on the bus and I told him no, probably not. But first in LINE, always. He seemed okay with that.
I can’t help it. I still think that my son will be ostracized by the other kids who know he comes to school on the “short bus”. Remember the joke, “Yeah, you were one of those kids who went to school on the ‘short bus’!”? Are kids beyond that now? Everyone assures me they are but I have my doubts. My son will be arriving at school in a bus obviously for special kids. He will go to a classroom for special kids.
What have I done? Is this really what he needs? I wonder if this was a budget cut move? Put the kid who needs his own aide in a classroom where they can get rid of his aide. No. I can’t do this to myself. I made this choice based on the best information I had. Monster’s IEP doesn’t change much – just the Level 2 changing to Level 3 (100% time spent in special ed setting). The rest – the positive behavior plan, the permission to chew gum or leave the room when stressed – all goes with him. He will get everything he had at his old school, plus a calmer, quieter “home room” setting. Plus a chance to learn how to pay attention and get his classwork done.
I wish I had the guts to tell them to fuck off, that my son is NOT going to be turned into a worker drone robot. But I see the need for all kids, and especially kids like mine, to learn what school teaches. He NEEDS to learn to respect teachers and pay attention and do what he is asked and get along with his peers. I could raise him to be another Unabomber instead, but I want him to have a regular life. Is that bad?
I am a “Question Authority” person. I allow my son to have his say if he thinks I am being unfair (his dad is this way too). I want him to think for himself and I want him to be an individual. He used to paint his nails and the kids at his daycare would tease him and he would tell them, “it’s not for girls only; it’s for whoever likes it.” I don’t want that lost. I don't want him to develop that fear of being different, of being set apart from his peers. Because isn’t that the ultimate authority for most kids – their peers? So teaching my son to sit still and get his work done seems to go against what I truly believe. But he needs to learn, because what good is an ignorant rebel? I want him to swim against the tide but how does he learn to do that if he doesn’t understand how the tide flows to begin with?
I guess I just need reassurance that I am not damaging his psyche beyond repair by putting him in this classroom. I want a guarantee. Why the hell doesn’t any life choice I make for my child come with a guarantee? It makes life pretty scary sometimes.
Posted by Pangaia at 2:40 PM 0 comments
FRIDAY, MARCH 14, 2008
The things I don't talk about enough
Last night Monster and I put together the Spongebob Lego van I bought him for absolutely no reason except that we both love Lego.
He cracks me up. He makes really funny jokes, both verbal and visual. He has a dry, snarky sense of humor (my gift to him). We sat together last night building that bus and laughing about whatever weird thing M was doing. It was so nice. I do my damnedest to hold moments like that in my heart so when the horrible things rear their ugly heads I always have in my mind the sweet small boy who loves to laugh and joke, and not the horrible one who hits and kicks at school and daycare.
These wonderful little moments happen often, and sometimes it's hard to see them as they weave their way through the rest of our lives, the difficulties and struggles. But then I look again and there they all are - the shimmering gold threads that make the whole tapestry of his life look dazzling and beautiful, and hopeful and inspiring.
Someday the gold threads will outnumber the drab ones.
Posted by Pangaia at 12:53 PM 0 comments
WEDNESDAY, MARCH 12, 2008
More backstory
Long story short about the aide - Monster had been coming home and telling us about things this aide had done but when I questioned the director she always denied everything. Then M got written up for hitting and kicking, and when the director talked to me she thanked me for being so understanding and how they were still working to get everyone trained on CPI and it was one of her top priorities. I wasn't sure what she meant by that because Monster hadn't said anything. So that evening I asked him what had happened at daycare and he said he had come in from recess and refused to put his shoes on and the aide and two others had held him down to get his shoes on him. I emailed the director and told her what M had told me and asked her to have the teachers write down their version of what had happened. She never got back to me and I called her back a couple days later - she told me nothing had happened - she asked them and they said that Monster had tried to run out of the building and they had blocked his way and "somehow" got him to the calming room but nobody had touched him. Then she said "I know what I said before about getting everyone trained in CPI, and I do think it's important, but nobody touched Monster."
A couple of weeks later the daycare took the kids bowling and Monster told his aide, jokingly, "I'm going to shoot you." The aide told hubby about it when he picked him up and we talked to M and told him that it wasn't okay to talk like that. Then a week after that the director met hubby when he came to pick up Monster, which means she made a special trip over there because her office is in a different building. And she starts telling hubby how we need to keep M out of school for the next two days because he is too much for them to handle and he called his aide a poopy head and used the F word and he's been hitting and kicking and the other day he threatened to bring a gun to school and kill his aide. But she was lying - she was talking about the time he said he was going to shoot her.When I got home I called Monster into the room and was talking to him about using bad words and he said, "Do you want to see what D___ did to me?" and I said yes, and he lifted his shirt and had big read thumb prints in both armpits. He said she had grabbed him hard and pinched him and picked him up to throw him into the calming room. I thought, that's it, I've had enough, and we took him to the police and filed a report. Also M had complained to the aide that his armpits hurt after what she had done and she looked at the marks and told him it was a heat rash and she gave him wet paper towels to hold under his arms. That was the day the director met hubby at the school.
After we made the police report the officer told us to take him to the doctor to see if it was a heat rash, since that was what the school would claim. So we took him to urgent care and waited there two hours to have the doctor look at him. He took pictures and filed a report too.
So I raised a HUGE stink and got the director fired for lying to us and the aide suspended and everything. It was a nightmare.
Now we're waiting to hear the school's response to the OCR complaint.
Posted by Pangaia at 3:15 PM 0 comments
The decision
After a two-hour meeting this morning with two schools’ worth of special ed teams and the parent advocate and me, we have decided to move Monster to the special ed program. I cried when I told them that I wanted to move him, because I still hate having to do this. But they had good answers for all of my worries, concerns, questions, etc. It does seem like this will give Monster a chance to shine and really be his true self, while also learning things like paying attention, getting his work done (work first, play second), etc. And hopefully it will help him learn to deal with his emotions in a more positive manner.
So here I sit, sure about my decision but just a bit heartbroken. This isn’t what I envisioned for my son. I hope I have done the right thing for him.
Posted by Pangaia at 12:30 PM 0 comments
Catching up with old friends....
Hi!!
I’m sorry I haven’t been around much. Things have been hectic here – I’m sure you’ve both been there.
I wanted to see when we could all get together. I probably won’t be bringing Monster because it’s easier to talk when he isn’t around, but we can still do Joe’s or Olive Garden – either one is fine with me. Right now Wednesday nights M has swimming and Thursdays he has OT. Tonight is his first swimming lesson – we’re really excited. It’s through C___Center and it’s one-on-one with a recreational therapist. It’s really cheap too which is nice.
I figured next time we get together I would spend the whole evening just catching you up on everything so I figured I’d write this little book just to bring you up to date.
Monster is being kicked out of his after school program effective March 20th, because they claim they can’t handle him. Interesting thing is; this is happening less than two months after we went to the police because M had been intentionally hurt by his aide (who was not trained in CPI or how to work with ASD kids). So we think they’re doing this out of retaliation. We got the Office of Civil Rights involved and they are now investigating the school on the basis of discrimination and retaliation. We should be hearing from them soon.
Monster is going to be starting a new special ed class March 24th. He can’t hold it together in larger classrooms and still has the behavior issues and this new classroom will hopefully help him with both issues. It’s in the same school district but on the opposite end of town and M will be bussed there every day.
We got PCA hours for Monster but they haven’t been approved by the county yet. We’re hoping to find someone to watch M this summer because no matter what happens with the OCR case don’t want him at the old place all summer.
I have an interview with W___ Center early April to see if Monster would benefit from there, and if he does, he will go there half days all summer long and it would be paid for by medical assistance. That would help with the PCA since we’d only need one half days. But that’s still up in the air too.
I just found out yesterday that I got a new job – still at (same co) but it’s a grade level up with a 6% wage increase and 3 weeks vacation per year instead of 2. I am hoping I might be able to work from home quite a bit with this new job, which may also help in the summer, since I would feel more comfortable if I was home when the PCA was there with Monster.
I have been stressed to the point of being ready to snap – it all started when Monster got hurt by his aide – it just started a whole domino effect of everything falling apart. After we filed the police report the after school place told us the aide was on administrative leave so we couldn’t take M back. I had to fight them for a week and get ahold of the State Board of Education section 504 specialist before I got them to agree to find another aide and take him back.
So. That’s it in a nutshell. Sorry to write a novel. Like I said, it would take forever to catch you all up at dinner.
Let me know when we can meet up again – even a weekend day would work.
-Pan
Posted by Pangaia at 12:30 PM 0 comments
TUESDAY, MARCH 11, 2008
A day in the life
This has been one of those roller coaster days.
I was SO depressed this morning. I'm worrying about the meeting tomorrow about Monster's placement. I am trying not to worry about it because they can't MAKE me do it, but I'm still worrying.
Then I found out I got a job I've been trying to get. I get a pay raise, a bump in the pay scale, an extra week's vacation, etc. So cool. Now I'm happy.
Come home to find out my son has gone berserk on the playground at the after school program and hurt a bunch of kids, and then tore up the room when they took him back in. Hubby had to help pick up all the stuff when he went to pick him up.
I tell myself, he can't help it. But he can. But he can't. And when hubby leaves for his meeting I try to get the whole story out of Monster but he is so upset with himself and feels awful and he cries, so I finally drop it.
Call my parents to tell them about my big promotion and dad bursts my bubble by remarking that it's amazing they would promote, "with all the problems you've had there." WTF? Well, according to him all of those times that I work late or come in early to make up for all of the times I need to take Monster to appointments or watch him because he's suspended or go to yet another school meeting, well, that's a bad thing to do and most companies would frown on it. And I shouldn't let it get to me because my parents are just the way they are. But it hurt. And it took away from any happiness I had left about the new job.
Then we're wrestling on the bed. And he smacks me in the face - hard. Not exactly accidentally but sort of in an out-of-control way. We were playing wildly so I didn't punish him. But I did start crying, only because I had reached my limit for the day, and my beautiful little boy brought me his little bear ice pack and his little pink stuffed duckie to cheer me up. And I wonder again why I get so miserable, when this child is so wonderful.
Remember the movie "Parenthood", when the mom tells her husband, "I happen to LIKE the roller coaster!"? I keep trying to tell myself that life is a roller coaster and that I should sit back and enjoy the ride. But I'm not as adventurous as I used to be. Sometimes I long for the merry-go-round. Because the roller coaster never stops, and sometimes it's going up and down way too fast, and making me nauseous.
Tonight hubby is gone, so Monster and I are going to finish up Johnny Test on Cartoon Network and then we're going to snuggle up together and go to sleep. I guess my merry-go-round rides are all at night.
Every morning I wake up, and try to mentally prepare myself for another day of roller coaster. And sometimes I just don't want to face it.
Posted by Pangaia at 7:54 PM 0 comments
MONDAY, MARCH 10, 2008
I changed my mind. So sue me.
I have made an unpopular move this morning by letting Monster’s IEP team know that I am not ready to move him to the behavioral room. I can’t. It’s a feeling in my gut – it makes me feel awful when I think about it. The ONLY person who is congratulating me on following my gut is Monster’s psychologist, who says that what I told her makes it seem like it isn’t a good fit for him.So now even hubby is disgusted with me for changing my mind and slowing everything down. Because of my gut feeling that it’s wrong. I can’t give any better description than that, so I have no way of explaining why I don’t want him there. I don’t. It’s not the place for him. I wish I knew why. And I wish that sometimes my friends and family would back me up by saying, “You know what’s right for your kid. If this doesn’t feel right, then keep looking” instead of acting like I’m some sort of nut who is holding my son back from success.
Posted by Pangaia at 11:10 AM
FRIDAY, MARCH 7, 2008
Small victories
The letter came in the mail today. The Office of Civil Rights is taking Monster's case, based on discrimination and retaliation. The retaliation allegation is because we went to the police when their aide injured Monster.
I feel justified. I feel as if I am being listened to, that somebody thinks that I maybe am right about this - Monster is being discriminated against.
I don't know what will come of this and at this point I don't know how much I even really care. The point is, the school has been notified of the OCR investigation. They know that they had better be able to prove that they did the right thing. I don't think they did.
It's a small victory. But it feels solid, and it feels good.
Posted by Pangaia at 4:12 PM 0 comments
THURSDAY, MARCH 6, 2008
Do I need a shrink?
There is this sadness that won’t leave me, and I have had good friends tell me I need to find a good therapist to help me work through this sadness. I have my antidepressants and anti-anxiety pills and sleeping pills. But yes, all my psychiatrist does is hand me prescritions. And he too has asked me to talk to someone about my issues.
Here are my issues though. I fight and fight and fight for my child. Every new incident with him is something I need to be notified of, and something that needs to be discussed and dissected by people at his school and up until recently his daycare.
Now I am in the process of looking for a PCA for him in the hopes that there will be someone I trust to watch him in the summer. This in itself is terribly stressful to me because I don’t know how I will trust anyone alone with my son now that he has been hurt at least twice that we know of by caregivers. So there’s that. Plus this outside behavioral school that is getting involved and may take Monster half days during the summer, to teach him social skills and behavior skills. This too is up in the air. There are intake interviews and a waiting list.
Now we are considering placing Monster into a new school and a special needs classroom for children with behavioral difficulties. And while I agree 100% that Monster needs to learn no coping techniques in school, I can’t get myself excited about this place. I worry I’m putting him in the wrong place and my stomach hurts every time I think about it.
I have sent an email to the autism specialist, the special ed coordinator, and Monster’s caseworker, asking them if this is it, if this is the only option, or if there is anything else out there? I have visions of a small, quiet classroom with high-functioning ASD children all in one place, learning how to behave and get along. Not this classroom that is strictly for bad kids who, aside from Matt, have abuse/mental health/neglect issues. How much does that really matter? I don’t know. They all need to learn the same thing but for different reasons. Hubby is all for it – thinks it sounds great. I don’t know why I can’t be happy with it, and why it feels wrong to me.
I have messages to my parent advocate and to my son’s psychologist to get their opinions, and maybe to clarify what is bothering me about this situation. I can’t get past the idea that my son is going to be placed in a classroom for “bad kids”. Because he is incredibly sweet, and I have heard and read more often than I can count that placing these kids in these classroom environments is like throwing the lamb to the wolves. I worry contantly about the kid. Is this why I need help? What can someone tell me, except that I do what I can and then let the rest go? I do everything I can, but I can’t let it go. There is too much at stake. My child’s whole life and future is at stake, and I can’t afford to slip.
There’s too much that is just “out there” that I cannot fix or control in any way, even though decisions need to be made. My child is at the mercy of so many people and so much of that is out of my control. It hurts and scares me. And I don’t know who can help me fix this. It’s simply a reality in my life and yes I’m sure there are coping skills I could learn. I could learn to let go. It won’t happen. I need to keep constant vigil for this child because he is vulnerable and sweet and trusting.
I’m not complaining. I love Monster so much that I am proud to do these things for him. I am not resentful that I am giving up my peace of mind to assure that my child gets what he needs. But giving him his best means that I cannot rest. I can never be satisifed and leave everything to someone else. That’s not how it works. This child is my responsibility and he needs me to be 100% involved. Maybe someday there will be a place when I can say, I have to let this one go and release my anxieties for the time being, but it’s not something in the foreseeable future, and it isn’t something I am counting on.
What else would a counselor do? Tell me to ask for help. And this is what I spend my days doing. I hunt down anyone I think I can get on my side and I ask for help. And everyone who can help is more than generous with their knowledge, their information, their assistance. But that assistance is only to help me find my way. They can’t carry me through this. They do seem to pop up at the worst times and hold my hand through the storms, but then they need to get back to their own lives, and I thank them for being my temporary guardian angel, and forge ahead alone again.
And yes I have a husband and yes he helps. He takes Monster to appointments and goes to meetings and loves Monster dearly and wants the very best for him just like me. But he is not 100% focused on Monster like I am, and I don’t expect him to be. Because I am the one who has been carrying Monster through this from the beginning, from the first time I thought something was wrong. I have been the one to seek out others to help. I have been the one to fight the fights that I thought needed to be fought, because my husband, dear soul that he is, will not fight for many of the things I fight for, because he doesn’t see the point. He sees it as me slamming my head against brick walls. And perhaps this is what I do a lot of the time. But I think of mothers in nature, of the frantic way mother animals act when their young are threatened, and that is how I feel. Aminalistic. Instinctually doing almost irrational things in the hopes that I am doing right by my child – that I am helping him survive and thrive.
I would lay down my life for my son without a second thought. And it is this that gets me in trouble, because each day I feel as if I giving aways pieces of my life to my son. And I give them gladly. And the depression is for the most part simply stress and the feeling of loss that seems to dog me always, as I give away myself to this child who truly deserves everything I have. I don’t resent him for it. But it’s a pain I simply bear.
I try not to slip into self-pity but I do end up there often. I only need to wrap my arms around my son, to hold him against me, to release that self-pity and give myself over to this child. I am not trying to be heroic. I am not any different than most other mothers. I am trying to make sure that my child, who was born with this disorder that will make his life more difficult, has the best chances at happiness and a good life. I am not afraid to give myself up for that cause. It is only because I fatigue and overwhelm myself that I make my life feel difficult and sad. Really, it isn’t. It is amazing and wonderful when I allow myself the chance to take a deep breath and look around. So. Do I need a therapist? Probably. But if she tells me to stop giving so much to my son I don’t think I’ll be able to listen. I can’t stop giving to him without hating myself for not being a good enough mother. It’s not a difficult choice. Any mother would make this choice if they had my child.
Posted by Pangaia at 11:23 AM 2 comments
TUESDAY, MARCH 4, 2008
Daycare Saga and sadness
Tomorrow we go tour the special ed classroom we’re considering placing Monster in.
If we like it he only has two more days at regular school. I want to take him to tour his new school if he’s going there so I will probably take some time off work either Thursday or Friday.
I want to buy treats for a “going away” party at his school. I don’t know why but this breaks my heart. This kid is always leaving places and has never found a place where he belongs. I hope to god if we move him that this is the right place and he can stay there awhile.I feel rotten for the little guy. I fell like we should have done this right off the bat and not even attempted inclusion. But we didn’t know. We though this is what you do. Now we have a child who, from the time he was two, has been at 11 or so different schools and daycares. And kicked out of most of them. Lemme count here….
Children’s World – Expensive. They would NOT keep him awake the 15 minutes it took me to drive over there after nap time started, so he would not fall back asleep at home and it drove me nuts.
Home daycare mom – one day. Tried to kill my child in many ways. Worst person to watch children ever. Did not feed or change Monster’s diaper in 5 hours. Sigh. Kept my deposit. Back to…
Children’s World – One of the “teachers” in one of his rooms yelled at a little boy for crying – IN FRONT OF ME, and he got hurt once on the playground and nobody knew how – told me “Kids will be kids…” he was 18 months old….
Kindercare – Would not potty train to get moved to the older kids’ room. Threw tantrums. Hit a teacher and threw a chair across the room. Beat on other children. We got called into several meetings where we were told we were rotten parents who didn’t discipline our child and it was partly because Monster was an only child (also our fault). After three or four discplinary actions they tossed his ass out.
Wonderful Small Daycare Chain – a local chain with two teachers, an assistant, and a manager. They were wonderful with Monster. They loved him. They had a couple other “different” kids (one who, to me, was OBVIOUSLY Asperger’s – haha – joke was on me. I had no clue about my own kid). Six months later the owners announced that this one branch was not making money and they were closing it. Heartbreaking. Monster loved that place and we wouldhave kept him there until kindergarten if they had stayed around. So sad. I do say it was my blessing in disguise though, because it was only when we put him in the next place that teachers started telling us there was something wrong. The teachers at WSDC worked with him and never once did he get written up for anything.
Funky Overly Religious Lutheran Daycare – These people seemed very nice. They allowed Monster to stay in the toddler room even though he was too old for it, because the older kids’ room did not have diaper changing facilities. Monster was almost 4 now. He did really well in the younger kids’ room. At this time he finally decided he COULD pee on the toilet and got promoted to the preschool where all hell broke loose. They brought in behavior specialists. They wrote Monster up and sent him home. I do think they tried their best. One day Monster smacked a kid in the head with a building block and the kid needed to get stitches. This was the beginning of the end. This place recommended we contact our city’s special ed services. I put it off. I wanted to pretend it was the school that could not handle my child.
Wonderful Small Daycare Chain – Location # 2 – Nothing like the old place. Main teacher in Monster’s class HATED him – called me at work the first day and told me ABSOLUTELY they could not keep this child here – as if I had placed the devil himself into her peaceful little daycare and destroyed it all. I panicked and called our special ed dept and got an emergency meeting with the daycare. Sat at this meeting with this huge special ed team plus the teachers and directors of the school and wept as main teacher explained how none of the kids like Monster and none of them wanted to play with him because he was “bad”. The special ed team pushed through the test because they agreed he HAD to get out of there, and found us a nice-seeming home daycare woman.
Home Daycare Woman – she seemed okay. But she treated Monster like shit. She had two 5-year-olds and my 4-year-old, a 2-year-old and a couple of babies. She allowed the 5-year-olds to tease my son and would tell me it’s because he annoyed them. She let them play with the babies but Monster was not allowed to touch them. She let him bring a toy from home but the only time he played with it was if he snuck it past her while she sat and watched TV (all day every day) and hid in the little playroom. She made him nap alone. I had feelings of panic that I had to get Monster out of there quick, so I found him
Home Daycare Dad – this guy lived SO close to us, he was funny and nothing seemed to faze him – he took the kids to parks and took them out to play (Monster was not allowed outside ever at Home Daycare Woman’s house). He was there for quite awhile but then a couple of the other kids’ parents’ told him that Monster had to go or they were going, so Monster was tossed aside.
Happy Fun Junky Daycare – in a crappy-looking stripmall, these people took in my son and cared for him like the ones at First Wonderful Small Daycare Chain did. Monster had SOME issues there, but he always acted better for people who treated him with respect and allowed him a little leeway in the rules (what a concept). He stayed there until kindergarten. They were wonderful. I am so grateful for them and WSDC. That was a total of 12 months of my now-5-1/2-year-old child’s life where things went well for him. People understood him and cared for him and allowed him to be different without criminalizing him.
Kindergarten – We all know the story about that. He lasted at this first one for 6 months.
After school program – 6 months. They’ve hated him from Day One and threatened to have him thrown out before he ever actually enrolled.
So that’s 12 places. And he’s 6. He’s been kicked out of 5 of them. And now we’re moving him again, and this time it’s something we’re asking for.
He seems pretty resilient. He seems to look forward to new places as if they are fresh starts – maybe the kids at this place will like him, maybe things won’t be so rough for him, etc.
And this may be the right place for him, and we won’t know unless we like it tomorrow and try it. We KNOW where Monster is now is wrong for him.
I just feel so sad for him. He is such a courageous guy, that he does go to these places without much fuss and usually quite a bit of enthusiasm. Maybe it’s because I have given him the idea that he is an amazing and loveable child and he is still young enough to believe it and so thinks everyone really likes him. He appears pretty clueless about the people who don’t like him and I hope to god that this is true and not just that he is internalizing everything.
His caseworker told me at the meeting where we decided to place Monster in special ed that he goes to the nurse’s EVERY DAY with complaints – sore throat, stomach ache, etc. Is this his stress, or is he looking for some attention, or a break from the routines of his day? I wish I knew. I wish I knew what was going on in this little guy’s mind most of the time, because I worry so much that there is pain in there we don’t know about. The psychologist assures me I would know if he was in mental pain – it would manifest itself in pretty obvious ways. I haven’t seen the warning signs she talks of. He has fears, but don’t all kids his age have fears?
Anyhow. Tomorrow we’ll know. Tomorrow we’ll tell him, if he’s going there. Everything right now hinges on what we think of this new place. On top of all of that we still have summer looming ahead, and we have a few maybes but nothing is looking like a great option right now. I would have had him spend the summer in the after school program if they hadn’t kicked him out. Now we’re trying to find a PCA and not having lots of luck.
Posted by Pangaia at 5:02 PM 0 comments
SATURDAY, MARCH 1, 2008
EH
I leave the morning meeting at my son’s school feeling oddly relieved and even happy. My son’s team and I have just agreed that in spite of their Herculean efforts at integrating my son into kindergarten, it is now time to consider a smaller setting. A quieter, calmer place, with other kids like him. We have all just agreed to move my son into a special ed classroom.
As I sit in my tiny cubicle at work that day, a strange fuzziness fills my head. An idea, a memory, is trying to force its way to my consciousness, but I cannot allow it, because my department is busy and I need to work. My day though is almost completely wasted. I cannot think about applications and audits. I cannot focus on anything. My mind keeps pushing aside this thought demanding to be acknowledged. My happiness is leeching from me slowly and by the time I put on my coat to leave work I no longer feel any happiness or relief. I am simply exhausted.
It isn’t until I climb into my car and put my key in the ignition that I allow this thought to slide into the opening where it becomes tangible to me. There, sitting in the parking lot as the sun slides below the nearby freeway, I burst into tears. I realize now what I have done. I have failed my son in the worst way. I allowed something to happen that I had vowed I would never allow. I have made my son an EH kid.
Over thirty years ago I went to an elementary school built on prime real estate half a block from the beach. Our school was special, but not only because of its close proximity to the ocean. It was also special because it took in special needs children from all over the school district. Most of us kids walked to school, but some kids arrived on short yellow busses which drove in from other parts of the city. These were the EH kids. Most of the local kids were under the impression that EH stood for “Extra Help”, but my mother had explained to my brothers and me that it actually stood for “educationally handicapped”. The busses would pull up, and we children would stand and stare openly. We gawked at the kids who climbed off those busses. We wanted to see what made them different. We scrutinized them without mercy.
We called them the “EH’ers.” They were endlessly fascinating to us. Most of them looked just like us, but we knew that they were different. They sometimes talked funny or walked funny, or made strange noises in the back of their throat. They were kept apart from us in their own classroom. Even at lunch and recess they were kept together in a small group and watched over by their own teacher, while we other kids had the run of the playground. We were repulsed and thrilled at the same time by their presence whenever they were brought out.
It was an unspoken rule that none of us could be friends with an EH’er. We knew that their taint would rub off on us if we were seen talking to them. They were social pariahs, and even though none of them actually looked scary, we avoided them whenever we came across them anywhere in the school.
For a short while a neighborhood child was one of the EH’ers - a mentally slow boy named Doug who was sweet but had a terrible temper and would get instantly violent for no apparent reason. Outside of school we neighborhood kids all played together , but even though I played with Doug for hours at a time all summer long, I would not speak to him at school. I knew the consequences of associating with those kids, even if one was a friend.
In middle school the group of EH’ers was broken up and the children were, I am guessing, sent back to their respective school zones. The small group who followed us to middle school were placed in ordinary classrooms. The adults who made the decision to simply toss these kids in with the general population apparently assumed that they would blend into this larger setting amongst mostly kids who did not know them, and that they would then be accepted. But those of us who had been in their elementary school simply could not leave them be. We quickly spread the word about their old EH status and once again they ended up marginalized and rejected by the rest of the kids. They could not escape their stigma.
It must have been miserable for them. I look back at how cruel we were to those kids and marvel at how easy it is for children to destroy each other without a second thought. I think of their parents, feeling sad and helpless because they had probably been told by the school that their kids would be just fine, that nobody would know they had been in a special classroom. When their children came home and told them of our cruelty, the parents must have been devastated.
Many of the EH‘ers eventually left our middle school. My hope is that their parents forced the school district to place these children in schools that did not have us kids - the ones who knew. I hope these kids found someplace where their pasts could be left behind, and they could simply be regular kids.
Now I am the mother of a special needs child. When we got the diagnosis for our 4-year-old son, I was forced to confront the child I had been. Cruel. Prejudiced. Judgmental. If someone was different, we all turned our back on him. I didn’t even feel bad about it. It never occurred to me that these children might be lonely, or hurting, or sad. I never wondered if they cried at home because they had no friends. This was how small my life was. This was how pinched and small my heart was.
Children have changed. Everyone has assured me of that. Children are so much more accepting now of children who are “different”. So many more children are integrated and the other kids are used to having these special needs children around. Teachers are teaching their students that each child is unique and that “disabled” is just another descriptor, like “left handed” or “tall”.
I hope and pray that this is true. I worry that my sins will come back to haunt my child and break his heart. If someday my son ends up back in a “normal’ classroom, I hope the cruel, pinched-hearted children aren’t there to tell those who don’t know about him. I hope that other kids can talk to him without being shunned by their classmates. I really hope everything is different now, for my son’s sake. This is too much for someone like me to ask for, I know.
Posted by Pangaia at 4:17 PM 0 comments
FRIDAY, FEBRUARY 29, 2008
A quieted mind
Something is happening. Our world is rearranging itself aruond us and settling and there is a calm. For the first time I can remember I accept and welcome it. Usually I am too ready to jump forward toward the next crisis to really just enjoy the calm moments, the moments when things seem to be right for once.
I met today with Monster’s special ed team and we discussed alternate placement for him. Right now he is 40% in a regular classroom, 60% in special ed classes. The change would puthim 100% in special ed classes.The other school in our district has a program for children with aggression issues. Half are ASD like Monster, the other half have their own issues – neglect, abuse, etc. But each child individually is treated the way he needs to be treated to flourish. The kids who understand consequences get them. The others, like Monster, get the positive behavior reinforcement.
The team descirbed the classroom to me as one with lamps instead of humming fluorescent overhead lights, soothing music playing low in the background, and a sense of peace and quiet and of being sheltered. We are going to tour next Wednesday and if we like it Monster will start there the following Monday. The bussing will be taken care of by the school.
This is a program that attempts to integrate each child as they become ready. They may start with an hour a day in a regular classrom, and with an aide right by their side. They work their way up to as far as the child can go. Sometimes this means complete integration. Other times the child will always be in this classroom at least part of the time.
I actually feel hopeful about this. It sounds like exactly what Monster needs. His caseworker said, everything that Monster is having the big problems with in his current school would be removed simply by moving him to this classroom.I am not even going to let myself worry over whether or not this means I am admitting defeat. Because this isn’t about me. It’s about doing what is best for my son. Do I want him in a 100% disabled classroom, thus ensuring he is labelled forever as one of “those kids”? Oddly, I don’t care anymore. I want him to be someplace where he is happy. Where he is less stressed. Where he can learn in his own way and be his own person and hopefully make friends with other kids like him.
I am letting everything go for once. I need to sit this one out. It feels like this is a gift to my child, and I am not going to spend time worrying over it. I will tour on Wednesday and if I like the place, he is going. No second guessing. He is not in the right place now – this can only be a step in the right direction.
Posted by Pangaia at 1:28 PM 0 comments
TUESDAY, FEBRUARY 26, 2008
The bus stop
Every day my son can't wait to get down to the bus stop. He runs out ahead of me and charges down the street, eager to meet up with his friends and play until the bus comes. There are squabbles over places in line. You need to hold your place with your backpack or stand in line in person. Since Monster runs ahead and I carry his backpack (bad, spoiling Mommy!) he has no way to save a space in line. Luckily he has finally stopped caring about his place in line and just runs around chasing the other kids until we al hear the rumble of the bus around the corner. Then it's quick - get your backpack on and get into line! And suddenly line placement is important to him and if he stops to hug and kiss me he loses his place. The other day he climbed onto the bus and sat there looking out the window with tears streaming down his face. What happened?!!?! it turned out he had just realized he had not gotten a hug and kiss before climbing onto the bus. The bus drove off as I blew my son kisses, trying to cheer him up.
Now before Monster bolts out the front door I give him a hug and kiss there, so that he doesn't need to worry about it when the bus is rumbling down the street, kids are jockeying for line position, and he needs to get his backpack on. And it works so well. Today as the bus rumbled toward us Monster was waving wildly, excited about getting onto the bus with none of the usual anxieties about hugs and when he gets to climb on.
Times like this I let myself think Monster is happy. Aside from claiming every day that he is too tired to get up, by the time the bus comes around he is excited and happy. He tells me he has no friends at school but he doesn't seem miserable about it. I need to find out what the truth is about that from his case worker. He has a happy home life where there is peace and quiet and Mommy and Daddy who love him unconditionally, and he has toys galore.
I sometimes get too wrapped up in the negatives and don't realize that hubby and I are doing a pretty good job taking care of the Monster. Sometimes I can even tell myself that he is as lucky to have us as we are to have him.
Maye I need to give this school a chance. Maybe I need to stop pushing so hard for something when Monster might be fine where he is. I will go to the meeting but I am not going to insist on anything now. It will be interesting to hear the team's input on how they think Monster is doing on his new IEP.
I wish there was a handbook that told me, step-by-step, exactly what I needed to do to raise a happy, healthy, well-adjusted child. I wish I could sit there and say, "well, I've done everything I was supposed to do before Age 6. Now we just sit back and wait, and if Monster isn't happy, it's his problem." I wish.
Seeing him waving excitedly at the bus this morning warmed my heart. He's a sweet child. I want to keep him sweet. I want to do everything right.
Posted by Pangaia at 11:15 AM 0 comments
MONDAY, FEBRUARY 25, 2008
snuggling with my boy
He's like a cat. He wants full-body contact, so he presses himself all along my side, and then throws one leg over my back. I love the feel of his solid little body against me and his warmth. I let him fall asleep and then slip out of bed and come out here to go online or read. When it's grown-up bedtime we move Monster to his own bed.
It bothers hubby (I am convinced) because it's a place where I get to be the favorite parent. I get to be the favorite parent most of the time, because I pretend to understand my child and I go easy on him where hubby will try to be the tough guy which usually blows up in his face because trying to force M into doing anything is the wrong way to go about it. Monster needs to be persuaded. Then Maybe he'll do what you want him to do. Maybe.
So I get to snuggle up next to my guy and watch his face as he falls asleep. And there is peace and beauty in that little sleeping face. And I get to enjoy the stillness in him - the quiet. It's not there when he's awake ever, so it's a special chance to see that part of him.
And how is this wrong, I ask? Hubby has no answer, other than Monster is too old and needs to know how to fall asleep alone. He does know how to fall asleep alone. And occasionally, he gets to fall asleep with his leg thrown across Mommy's back, and his soft warm breath on my face. I'm guessing someday soon he will not think if this as a special treat. I'm going to take advantage while I can.
Posted by Pangaia at 9:25 PM 0 comments
They dropped the abuse case
Because I called the police officer about a week after everything happened and told them I didn't want Monster's aide to be put through anymore - I blamed (and still do blame) the daycare as much as her personally.
The thing is, I didn't think this meant that they would just drop the whole case. I thought they would still look into how the daycare was being run, how they went about doing background checks on their employees, etc. I guess I didn't really realize that when I said I didn't want them going after the aide, that everything else got dumped.
Which means she was their scapegoat. They dumped all of the blame on her. And it pisses me off, because they will get away with it.
I still don't regret that I asked them not to go after the aide. I didn't want to make her life a living hell. I just wanted my son safe. I guess I didn't realize at the time how bad this made me look as a parent. I go through all of this and then call them and say, "Never mind"? But the point was, I wanted my son out of that situation, and when they got him the new aide, I was satisfied. But now I feel stupid. I guess I should have let it go. Don't ask me why I stopped it all. I should have let the aide go down. But I couldn't.
I'm not quite sure why I did anything that I did. I went to the police because I was lied to and because my son was injured. but it was ALWAYS the daycare I blamed. Always. Not the aide. I still feel bad for her. And she hurt my son. Makes a lot of sense, right?
Posted by Pangaia at 5:44 PM 0 comments
Just a long rambling
I haven’t been this sad and out of sorts since we got Monster’s diagnosis. I have to shake myself up and get myself out of this funk.The truth is, what the after school program did is really doing us a favor. We can save so much money by working different shifts so we can see Monster off in the morning and meet his bus in the afternoon. It’s summer that has me worried. If I can’t find a good PCA then I will have to work ridiculously early and hubby will have to work ridiculously late so we can watch Monster ourselves.
The ones I’ve interviewed so far just don’t fit. There is one who seems nice enough, and I don’t know why I have reservations about her, but I do. Maybe I need to talk to her some more to get a better impression of her.
Another one who was supposed to come by on Saturday stood us up. So much for her being reliable, huh?
OCR is going to ask the after school program for a mediation meeting. If they say no then it goes to investigation. I think if that happens we will drop the case. It’s not worth it. They don’t like my son anyhow.
So – what more do I want? I always manage to recover from these big shake-ups in our life; why do I always fall into such deep despair before I get past it and get on? I scare my little guy when I get like this. And I scare myself too. When it gets to the point that I think about not making that curve on the bridge, not turning the wheel when I need to, I worry about myself.
Honestly, I know I will get through this. I have lived with my depression long enough that I know the real danger signs and know when to ask for emergency help. For now, I just let myself entertain the suicidal thoughts because for some reason they feel necessary – getting past them by wading through them.
Monster needs me to pull myself together though. His whole little life keeps getting so shaken up – thrown out of one daycare after another, and now maybe a new school, and maybe a PCA and a whole new routine. I hate that he’s going through all of this, when really what he needs in his life is some continuity. At least we have been able to keep the details to ourselves. I don’t think he understands that all of these changes are due to his behaviors. But then, he knows a lot more than he ever lets on, and he is so intuitive. He could know everything. Plus I sit here sad because it’s 3:30 and I don’t get to leave until 6 and I want to just hold my boy and smell his hair and feel his weight in my arms. I want to ask him about his day and tell him how wonderful and sweet and amazing he is, and tell him how much I love him. And maybe I’ll let him fall asleep in our bed tonight. Just because we’ve both been so sad. Hubby doesn’t like my enabling Monster like I do – thinks he should be forced to fall asleep alone every night. And, who knows? He may be right. But in the big scheme of things, what does it hurt? Tomorrow a plane could crash on our house or we could be in a car crash. Then what does it matter if Monster got to fall asleep in our bed?
I think I’m too fatalistic. I try to raise Monster to be a good member of society, but there’s a part of me who wonders whether this world will even exist for any of us in ten years. Part of me wants to just leave Monster be and not stress him, and let him be himself and be happy and not have to try to conform to a society in which I have already lost trust. And even if we all reach old age, why is it my job to force my son to become a mindless follower of rules and laws that sometimes don’t even make sense to me?
I used to laugh at homeschoolers, but now I hear myself telling Monster why he has to do something a teacher or aide at school has told him to do, and I wonder to myself, WHY? It isn’t something I agree with. And yet I am telling my son he needs to do what the teacher says. And I know it is about respect of those in authority, and I know that’s important, but the anarchist in me wants nothing to do with it. I try to figure out where the balance is – how to raise my son to be free-thinking, but respectful. How to allow him to think for himself but not have him end up being a child who goes into his school with a gun and shoots everyone who has made him feel bad. And I don’t know what that balance should be.
Posted by Pangaia at 3:45 PM 0 comments
SUNDAY, FEBRUARY 24, 2008
A white flag
My son asked me for a dream last night. This is his newest thing - he needs a dream from us at night so he can keep the nightmares at bay. Last night as I lay next to him during our nightly cuddle, I described a dream he could have; holding onto a huge bunch of balloons and flying over parks, houses, zoos, etc. Wouldn’t that be fun? And Monster answered, “But I’d have to be alone. I want to cuddle with you. I want it to be something where we’re together forever.” I almost started in about all being angels together, but then I decided I couldn’t tell him that story, because I don’t know if it’s true. Besides, no matter how cheerful a story I could concoct, it's still in the end a story about dying and not something I felt ready to bring up right then. So I gave him this lame response - “Well, we’ll always be together in this little house!” and since he was almost asleep he didn’t argue and accepted my lie and fell asleep.
This kid is so dependent upon me to keep him happy, safe, secure. And I don’t mind the job but I appear to be failing the poor guy lately. I am in a constant state of stress, low-grade depression, and tearful hopelessness. I had all of this fight in me, all this anger that helped me fight for my son, but it seems depleted and my attitude is now one of frustrated resignation. It’s odd, because I honestly thought that I might win these battles with the school, the daycare, and everyone else. But I am losing. I am failing my son and myself. Monster is kicked out of the after school program effective March 20th. We are getting together with the school next Friday morning to see if my son might do better in a special autism program, since no matter how hard the school tries, Monster is falling behind and he is sad and a misfit.
And so this sadness settles on me and I cannot shake it. And Monster senses it even though I try my hardest to hide it from him. And because Mom is sad and frightened, Monster becomes sad and frightened, and loses confidence in my ability to protect him from all of the sadness in the world.
Of course I can’t protect him. But I wanted him to believe it for a bit longer. He is six and still vulnerable. He has very little understanding of how the world works and this lack of understanding causes him anxiety. He looks to me to explain life as best I can, and to keep a smiling face and to reassure him again and again that everything is okay; everything will turn out fine.
I no longer know if this is the truth. I don’t know how everything is going to turn out. I have no fight left in me and I am at the mercy now of several places who don’t have Monster’s best interests at heart. I wait to see if the OCR will accept our case and request mediation with the after school program. I wait to see if a PCA shows up in response to my ads who seems like someone who will be patient and good with my child, and whom I can trust to be alone with him for several hours a day.
Everything I worked and fought for seems empty and useless. We’re right back at the beginning and nothing has changed except our choices have narrowed significantly and we can’t look back to what was lost or given up on. There’s nothing promising out there in the near future.
And so I muddle through. I was so cocky. I thought I was going to change the way schools and other programs saw children like mine. I thought I could help others by being tough and fighting for my son and maybe making it easier for those who follow to be understood and helped.
I am nothing. I am a mother to a disabled child who is beautiful and sweet and charming and smart and wonderful. And that should be enough. But it isn’t, because I am supposed to also advocate for my son and after fighting for almost two years I am tired and sad and defeated. And what was it all for? Nothing has changed. My son gets older and now the other children notice his differences more - he’s weird. He talks funny, He acts weird. He hits people for no good reason. He seems unable to learn. I hurt for him. I love him so much and I want to make the world a good place for him. I can’t. I want to protect him from all of the ugliness that is out there. I can’t. I can only love him, and offer him dreams to help keep the nightmares away. And hold him when he’s sad. I hold him a lot. I worry he’s sad too much. I worry about us both.
Posted by Pangaia at 12:27 PM 1 comments
THURSDAY, FEBRUARY 21, 2008
Time to stop the pity party
and post something I wrote a while ago.
The Promise
Will you love me? You ask.
And I answer, of course I will love you.
Your eyes sparkle with mischief and knowing.
It won’t be easy, you tell me.
That won’t be a problem, I say (the truth is, I have no idea just how impossible it will seem at times,Or I just might say no: You know this).
I warn you that I am not patient enough,That I lose my temper too often,I give up too easily,And I very rarely forgive.
You tell me this is okay.
You only need me to promise you
That I will love you forever and always.
I look into your eyes and see you as you will be;
Shining,
Beautiful,
Creative,
Intelligent,
Caring, and
Loving,
But difficult, too.
So incredibly, terribly difficult.
Can I do this?
I don’t know.
I have no way of knowing.
But I have invited you here
And you have shooting stars to chase, clouds to dance on,
And you are waiting for my answer.
I don’t think I can do this.
I am frightened.
I cannot see your future.
I cannot see our future.
There is too much unknown.
I have never liked surprises.
What’s in your future? I ask, and you smile.
Why don’t we find out together? you say.
All you need to do is promise.
And I consider my life and realize that saying no to you
Would be much more painful than saying yes to this frightening unknown.
And I tell you that yes, I promise.
I promise I will love you forever and always.
I will forget all of this soon.
I will forget that I called you to me,
And that I met you,
That I chose you and invited you to be with me,
And that you came to me
Because I made a promise.
Very soon, life will get busy, hectic, and scary.
But in the midst of my fear and worry over you
I will realize that
My life is also thrilling and full of wonder and amazement because of you.
And I will look at you,
My precious child,
And tell you that I love you
More fiercely than I have ever loved anyone before.
But, you will ask me, do you love me
Forever and always?
And I will say yes, of course.
And then you will smile,
As if you had already known.
Posted by Pangaia at 3:30 PM 0 comments
More whining
Monster is kicked out of his day care effective March 20th.
We are having a meeting in early March to determine if his current school settting is the best place for Monster to be at this time.
We are waiting to see if our PCA hours get approved.
We are waiting for OCR to determine if we can mediate with the after school program about Monster’s being able to stay, which may end up a moot point if he’s going to move.
I still don’t know what we will do this summer.
I am trying to keep my sense of humor about this all. The meeting last night was, after all, quite funny, as the parent advocate, hubby, and I slammed the aftercare people with all sorts of questions they weren’t prepared to answer. We stood outside after the meeting and sort of luaghed about it. Then I went home and fell apart.
I am on the verge of hysterical. I can either laugh or bawl but I’m never sure which will come out.
Thank goodness hubby is finally being supportive, because I really need his help now.
I wish I could just quit my job. But I can’t. We don’t want to have a luxurious lifestyle. We want to have a roof over our heads. That requires two incomes for us. I really wish I could just run away. I would join a circus but I doubt I have any talent they’d want. Do gypsies still travel in caravans? Would they have me? Or could I just run off to someplace in Oregon and live in a little cabin and let everyone think I’m a witch?
I can’t concentrate. I have to get work done, but seriously I’ve been here 3 hours and just realized that it really HAS been three hours and I have done nothing but scan the info I needed to get to OCR and email it to them. I sit here and mull over everything jumbled up in my brain and wish I had solid answers or any answers because I hate not having answers.
I’m just tired. I thought I had all this fight in me. It turns out it was not an infinite supply. Right now if I could curl up in a corner and not deal with anything I would be fine.
And still each night I snuggle up with my sweet boy and know that somehow I need to keep going. He is so damned lovable and snuggly and sweet and trusting. What choice do I have?
This is stupid, sitting here crying at my desk. I used to scoff at people who got emotional over stuff at work and wondered why they couldn’t leave that shit at home. Hah. Shows what I knew.Why do I even bother with mascara when it always ends up smeared under my eyes, raccoon-like?
Posted by Pangaia at 11:36 AM 0 comments
WEDNESDAY, FEBRUARY 20, 2008
More fun
And to add to my worries about this stupid meeting tonight, I got a call from my parent advocate (who DID make it to the IEP meeting) and she thinks it’s time to consider moving Monster to a special ASD school setting, since he hasn’t improved even with the gargantuan changes they made for him on his IEP.Maybe it’s all for the best. Maybe he belongs with other kids who understand him, or who are at least like him, because do any of them understand others?
If I weren’t so freaked about this stupid meeting I would take this as a sign to get out there and start shaking trees again, to see what falls down. I actually did already call the director in charge of the next-door city’s autism program (our city doesn’t have one) and leave her a message. I also emailed my son’s case worker and told her we need to start thinking of a different placement for Monster. I don’t even care about the meeting tonight, now that I think of it. They’ll just have to deal with my kid until we figure out where to put him.
Posted by Pangaia at 2:55 PM 0 comments
Meeting, today, 5:00
Today is The Big Meeting - the one I've been worrying over for about a week now.
It's funny because now that it is right here upon me, I'm not worried anymore. Hubby and I sat down and actually had a very productive talk about Monster's after school care and both decided that we would be able to change our hours to make it so he is never without one of us. It will mean not seeing each other all week long but we really don't do much - talk for a few minutes while Monster jabbers in the background trying to makes ure the attention never moves away from him, then play with him until his bed time, then fall in bed ourselves, exhausted and done with the day. Or he watches TV and I go online.
So I'm not frightened anymore. They can say what they want. If they tell us something that I know is illegal, I will get the OCR involved. I already have a lawyer waiting to hear from me on how this meeting goes, ready to take the case.
And how bad am I that I missed Monster's follow-up IEP meeting yesterday morning. Everything has been in such turmoil that, even though I had it written down and in my Palm, I still forgot it completely. I stood up Monster's whole special ed team, PLUS my parent advocate. I feel so irresponsible and unreliable now. It's not an excuse, but this meeting today has been hovering over me and I haven't been able to focus on anything else.
Yesterday when hubby took M to urgent care to see if anything was wrong with him, they got the same doctor who took the report on the abuse from the daycare aide. The doctor told hubby, You look familiar, and hubby said, well, remember, the daycare situation? and the doctor said oh, yeah, how did that go? Hubby told him we haven't heard a thing. We have no idea how that went. Maybe they decided the aide was not at fault and this meeting is to let us know that we're being sued. Shit I'm so optimistic.
Monster seems to want out of the day care, which I guess is a good thing because eventually he will be. Before he told us he could not leave there because he lvoes his new aide and she loves him. But now suddenly he doesn't want to go. Who knows what changed his mind? Most of the time we don't even know what's going on in his mind. I might hear about something that happened a few months ago, but Monster isn't big on talking about things that happened recently.
I hope I have enough work to keep me busy until 4:30. Time to finish up my lunch and get back to work. I hate surprises (I think I've mentioned that before) and the sooner they dump this "surprise" on us, the better. I can handle anything, once I know what I'm dealing with. It's the not knowing that drives me nuts.
Posted by Pangaia at 12:13 PM 0 comments
TUESDAY, FEBRUARY 19, 2008
Sick kid
Monster has been sick since last Thursday. He was sleeping at school and running a low-grade fever. Hubby picked him up and I stayed home with him Friday. Monday I was also home with him because school and daycare were closed. Now today I got a call from the school again - Monster had fallen asleep in the sensory room. So hubby is taking him to urgent care to check for strep and mononucleosis. I'm worried about my little guy. He still isn't eating well at all and all weekend he slept until 9 or 10 in the morning - this is the kid who doesn't believe in sleeping in on weekends and drags his toys into our bed at 7AM to play.
I hope he's okay. I don't like seeing him this way - listless and not eating.
Hubby suggested last night that maybe the reason Monster went to bed at 7 (7!) was because he's depressed. This made me cry because it is one more thing I had to worry about. But I think he's just sick. I don't know why, but being sick seems better to me than being depressed.
Posted by Pangaia at 4:47 PM 0 comments
MONDAY, FEBRUARY 18, 2008
Emotional mess
This upcoming meeting with the afterschool program has turned me into an emotional wreck. Plus I have just spent the past four days at home with Monster and today I yelled at the poor kid and I feel awful, but the whole thing has been building these past few days.
I'm still freaking out about how the whole after-school/summer thing is going to work.
Plus Monster has been acting really weird these past few days, and maybe he's still getting over being sick, or maybe being out of school for so long has gotten him out of sorts, but I am worried that there is some sort of huge explosion coming. And I'm afraid it's going to be at school. Or the after school place.
I've had this feeling before; this sense of inpending doom, and it's usually before we get the bombshell that Monster is getting kicked out, or that he smacked some kid in the head with a block and the kid needed stitches, or something like that.
I feel totally panicked.
Posted by Pangaia at 7:04 PM 0 comments
SATURDAY, FEBRUARY 16, 2008
I try to stay positive
I keep this blog to inspire myself and to help keep myself going when things get hopeless and sad. Sometimes (like right now) it all seems like a bunch of BS, and I just want to wallow in pity for myself and Monster. Or, well, let's face it. I just pity myself. I get tired, and I get discouraged, and I stop understanding what the point is in fighting.
My latest problem is that I am worried about a meeting called by Monster's after care program "to discuss Monster's ongoing issues". This is news to me, because M has been doing fine for the past couple of weeks. I think the new aide has figured out what makes Monster tick and she's learning to help him navigate his world.
Monster has no place to stay this summer if he gets kicked out of the after school place. The JCC is up in the air and I don't know where else we could put him.
I don't know for sure if that is what this meeting is about. I just have my suspicions.
So I'm just feeling scared and sorry for myself.
I think I'm running out of fight.
Posted by Pangaia at 6:38 PM 0 comments
THURSDAY, FEBRUARY 14, 2008
ALL ABOUT ANGER!!!!!
I spent the first 25 or so years of my life denying my anger, pushing it aside, shoving it down, doing what all women of my generation were taught to do. Then I went into therapy and discovered I actually had anger. I read books about it, and started to stand up for myself. Hubby didn’t exactly like this new person who was not a doormatt, but he learned to live with it and in time all was good again.Then I got pregnant. Suddenly my fury was out of control. I was insane with anger. I couldn’t explain it. I didn’t understand it. Why was I so angry, when I wanted this baby? What was happening to me?
When the baby was born I realized that the anger was FOR my baby. Even sitting there in the hospital bed, feeling tired and fairly safe, I looked at my baby and thought of all of the violent ways I would destroy anyone who attempted to harm this baby of mine. It was animal instinct, pure and simple. But it didn’t seem pure and simple. It seemed out of control and even scary at times.
Those first couple of years most of my anger was directed toward my husband, who tried to tell me what to do with MY baby, and dammit he was wrong and he needed to leave me alone with my baby and do what I needed to do. His mother had told him that Monster was too fat and I needed to start giving him bottles of water in between feedings. I roared at him. He told me I needed to stop sticking my breast in Monster’s face every time he fussed. I fumed at him. Who in the hell was he, telling me to go against my instinct? I knew exactly what to do with my son. Even the pediatrician got involved, by telling my husband that we needed to have Monster CIO and just teach him to sleep through the night. Hubby thought that was a fabulous idea, and in a rare attempt to have harmony in our house, I accepted this. For 15 minutes. My husband was furious with me when I got out of bed and told him, “I’m not doing this to my baby.” And walked into Monster’s room and stuck a breast in his face.
When Monster got big and strong enough to start attacking children and teachers in daycares, some of my anger came out toward the teachers. They were wrong. They were trying to force my child to be a good little sheep and foolow like all the rest and this just was NOT my child. But the largest portion of this anger I directed at myself, because obviously I WAS doing something wrong – my son was out of control. Maybe I did breast feed him too often for too long. Maybe I should have made him cry it out. Maybe I should not have held him so much. Maybe I should have listened to someone – anyone – when they told me I was doing something wrong. But there was something in me that forced me to take care of Monster the way I did. I fought with everyone constantly about how I took care of him. But he seemed to need everything I was doing – all of the over-coddling and all of the middle-of-the-night visits to comfort him. He needed these things. I knew it somehow. My husband was furious with me most of the time for ignoring any parenting advise he gave me. Caring for my son the way I instinctively felt it had to be done meant putting our marriage in jeopardy more than once. I didn’t care.
When we got Monster’s diagnosis, I felt vindicated. Everything I had done with him turned out to be all of the “right” things to do for early intervention of a child with Asperger’s. I don’t know how I knew to do the things I did, but I did them, and I am glad I stood up to everyone and did what I felt to be right. I think my son has a lot of skills and has a good base to work with thanks to how connected he was to me for so long.
It was the anger that made me do what I had to do. If I had not had my anger I would have given in and somehow Monster’s needs would have been forgotten. Our marriage was shaken so completely that even now I would say we aren’t completely recovered. But nowhubby will admit occasionally that he understands now why I did what I did. Now we are dealing with a school that up to a couple of months ago did not want to help our son, and a daycare that still wants to kick our son out. And I tell myself, they’re messing with the wrong mom, because I have honed my anger into a weapon to be reckoned with. I know when to back off and be kind, and allow people to do their jobs, but I will swoop in and fight with claws and fangs bared at the first indication that my son is somehow being failed by these people. I don’t know if this is mentally healthy or not, but it sure feels good to know I have this anger inside of me that keeps me from giving up. I feel this need to fight not only for my son but for every child who is unceremoniously shoved aside because god forbid they are just too much work for these daycare workers or teachers or aides. I want to start a revolution, however misguided or megalomaniacal (is that even a word?) that seems. I am ready for the fight of my life, and if I ever start to get tired or feel sorry for myself I just think of my son and what I want for him, and I think of the other children like him and know that their parents are exhausted like I am, and that it’s easier to not fight, and I want to fight for all of these exhausted parents. I know. I’m nuts. I seem to feed on my own anger and it is what propels me through the day. But really, I am not a bad person. I don’t snap at people for bumping into me. I don’t yell at a coworker who asks me the question I just answered for them yesterday. I am SO grateful for this anger. It seems as if it came as a gift from my son when he came to me – sort of like, “here I am, I’m going to shake up your life in a major way and you will have to fight for me a lot but I brought you something to help…”. a cosmic, mysteriously amazing gift.How wonderful that it turns out I got the exactly right chld for me, and that I got the exact right emotion to help him navigate through his life.
And just in case I am painting too rosy a picture; life sucks for me a lot of the time. I am under constant stress and pressure and it is almost always because of this child. But life sucks for me because I still live in the mindset that I need to feel sorry for myself before I actually kick my own butt into action. I may always be this way – get bad news, mope around and hate my life, then get pissed off and get to work – but at least I know now that my anger can be counted on to come and rescue me from my self-pity at some point, and show me the way to advocate for my son this time.
The battles won’t end. They will change. One battle will be won and another will be right behind it. I know this. As long as I have my anger I will keep fighting. Hopefully in the processs I will be making my son’s world just a little easier for him to navigate. And hopefully I can educate people along the way too. I will try to do it in the nicest way possible, but if someone refuses to listen, they’d better watch out. I have my anger, and I’m not scared to use it.
Posted by Pangaia at 4:34 PM 0 comments
Angry, disgusted, annoyed
This is all I did. I sent an email to the head of the after school program asking if Monster’s aide will be working this summer and will be available to work with him. Simple question. But I didn’t get a response and now I got a voicemail this morning from head of program asking if we can meet to discuss Monster’s “continuing concerns”. I called and left HER a voice mail asking what exactly these concerns are, because Monster has been doing wonderfully for the past couple of months. His aide really gets him and the two of them get along fine. So I know they don’t want him in the summer program, or they would have just answered my question. And I’m sick of these people and the runaround they’ve been giving us from the start, so I emailed them and CCed the assistant superintendent of the school district, because he got pulled into this whole case when M’s old aide allegedly abused my son and we got the police involved (the case is ongoing, hence the “alleged”). I know they think I am nuts and pushy and mean and that I make bigger deals out of things than they think I need to, but this is my son they’re dealing with, a flesh and bones little person with feelings and rights. I will not allow them to jerk him around. I’m a fighter. They already know that. So they’d better be prepared for battle.
Coincidentally, my second voicemail was from an attorney who got my letter to the OCR (Office of Civil Rights) and she is sure as heck willing to take this case on if the after school place does something stupid like say, we don’t want your kid here anymore. The meeting is scheduled for next Weds at 5. Our parent advocate is coming. My husband is coming. I asked the asst superintendent to please come to the meeting because I think the school district should know what their after school program is up to.
This is the email I just sent out.
Hi ___,
I left you a message on your voice mail but figured I would email you as well. I would like at least a brief explanation of what you mean regarding Monster's "continuing concerns". You are now working with the school to learn their best practices in helping Monster be successful. I asked a simple question - will his aide be available for my son during summer break - and got no answer, but instead get an ominous-sounding request to meet to discuss Monster’s ongoing concerns. If this is something we can simply discuss over the phone so you can tell me you don't want M in your summer program, let's do that so I don't need to miss any more work. If this is in fact a meeting in which we will discuss how best to work with Monster this summer so he can be successful, I don't have a problem with showing up.
I also wanted to let you know that there is a follow-up IEP meeting for Monster at 8:oo at school if anyone from your place is interested in attending. Monster’s aide has been telling hubby every day for the past week that M is doing really well. It seems to me that if the aide is allowed to work with Monster on her own terms, since she is the only one who has taken the time to really get to know him and his special needs, then M does just fine. Yes she is still learning about M but she really likes him and really sees a chance to be successful with him.So I guess all I need to know is, will the aide be available for the summer, and is your place willing to work with M this summer?
If both answers are yes, and you would still like to meet, then next Wednesday at 5:00 would work well for hubby and I and our parent advocate. Asst District Superintendent - if there is any way you could come I would appreciate it. I would like to make sure that someone outside of aftershool program is aware of what is happening.
Thank you and have a great day!
Monster’s Mom
Overreaction? Perhaps. But this has been going on since before school even started, when the main teacher in the after school program called me in to meet with her to discuss Monster's "special needs" and how they could help him both, and within 5 minutes of the meeting she had dumped the discipline chart in front of me, telling me that Monster will be help to the same standards as other children because they just can't have "grey areas" like that. I cried. I cried through that whole damned meeting because I had stupidly thought that schools and in-school after-care programs would be more willing to work with Monster than your everyday chain daycare (like the one who lied to me and told me they had no openings for my Asperger's son, and then told my friend who called 10 minutes later that of course they had room for her child, same age as M, same hours, same everything. I actually called her on it and chewed her out. Hate those chain places).
The teacher who sat and smiled at me while I cried through that meeting and claimed they'd do their best to not let Monster get in situations where he'd get suspended told her boss that the meeting had gone really well. Apparently parents cry through those things often.
So if I seem to overreact it's because I don't trust these people. I know as long as M's aide is there that Monster is safe and well-cared for. But the rest of them I don't trust. They lie.
Here's another lie they told when Monster was allegedly abused by old aide. Two weeks before the incident Monster said to old aide, playfully, not in anger, "I'm going to shoot you!" Yes, not smart thing to say. We talked to him about it. We told him it's not okay to say that to anyone. He understood. That was the last we heard of it. When the alleged abuse happened the director showed up when my hubby came to pick up and showed him a list of horrible things my son had done at their place in the past two weeks. Here was the kicker. "Threatened to bring a gun to school and kill a teacher." Okay, excuse this, but WHAT.THE.FUCK!?!?! We told her she's lying. We told her if that had really happened then why didn't we get a written notice that our son was making terroristic threats?
Why do I keep him there? Simple. We have noplace else to go. He needs to be within the bussing route to get to his afterschool place, and we have exhausted every other place in the area. And, since they have to accomodate Monster, I feel this burning need to not be like all the other parents who throw their hands up in desperation and pull their kid out. This is what they want. They don't want the extra work and headaches. This is why I fight. Because they have bullied too many special needs kids out of their program and I an angry that we all have to fight this bullshit every day. So I will fight as long as I can.
My husband says I am insane. I guess I am. But I'm pissed. And don't piss me off. I have a whole other post I need to write on my anger. But let's just say, my anger forces me to fight even when fighting seems stupid and useless. Even when it makes me hated.
Wish me luck. If this turns into a legal circus, so be it. It won't be because I haven't tried to get them to to right by my son. I am not jumping the gun. I have been more than patient. And I'm not a patient person.
Posted by Pangaia at 10:21 AM 0 comments
WEDNESDAY, FEBRUARY 13, 2008
FREE diapers! FREE!!!!
Today a case showed up on our porch. A big one, addressed to my son. My husband was ticked because he had given me a lecture a month ago about cutting back on our spending and obviously I had defied him by ordering something large.
But it was diapers. Free ones. Apparently a child over the age of 4 who still needs diapers is in need of medical supplies (diapers) which are supplied free to those on Medical Assistance. I would not have known this if the home health care nurse had not brought it up when I mentioned my son was basically day trained but needed pull ups at night. She asked that life-changing question, "Now, MA is paying for that, right?" Ummm, No. She gave me a number to call, I called, gave out Monster's MA number, his height and weight, and received a package of samples. Picked my favorite, called bck, placed an order, and here they are!
Please don't ask why this excites me so much. I guess because those diapers are EXPENSIVE. I got to take two unopened packages back to Target tonight and got $30.00 back on my credit card. So this could save us a bundle.
I think it's enabling us a bit, though. There's no incentive to get Monster out of overnight pullups if we can get an unlimited free supply. I'm guessing at some point he'll decide he wants to go without them. But if it isn't for a few years, hey, I'm fine with that. Really,really fine.
Posted by Pangaia at 9:18 PM
WEDNESDAY, FEBRUARY 13, 2008
Worry, Daycares, Summer Camps, and other stuff I can make myself miserable over
I need to decide who will be watching my child. I just got approval for PCA hours, although it will take months to get everything ready for us to actually hire someone. I asked for PCA hours out of desperation, never thinking Monster would qualify. We were getting desperate about his after school program and all of the fighting I was doing and I thought Monster may be out on the street soon! So we called a home health care nurse and made an appointment for her to assess Monster for PCA hours. This would come through Monster’s medical assistance, which we pay for monthly through TEFRA. It’s a long complicated story, but if anyone ever wants me to tell them my saga of the last two years, I would be glad to email it to you…
I was surprised, and saddened (always a bit saddened) when I realized how many type 1 behaviors (AKA bad behaviors, or “needs lots of help” behaviors) my son displays. It’s hard to have other people come in and look at my child and make statements about him that seem so awful until you realize that they’re all true, and I as the parent am so immersed this child’s life that a lot of this stuff starts to look and feel normal to me. So we got more than enough hours to get our son extra help, and I felt depressed for a few days because I was half-hoping the HHCN would get a bit angry with me and ask me why I had wasted her time, asking her to come out and assess this perfectly wonderfully normal child.
I jumped right in and posted ads for PCAs. It wasn’t until a day later when we started getting calls about the position that my husband discovered what I had done and asked me why on earth I was looking for a PCA now that we would not be able to hire for two months at least, if at all. Whoops. But the women were calling, and I had a few appointments set up to meet with people. I decided to go ahead and meet these women.
The two women I have met so far are wonderful. They are mothers themselves, and one has worked with lots of autistic boys. They both seem like they would do an amazing job caring for my son.And yet.
Both of these women are offering to pick my son up from school, and I don’t want anyone driving him anywhere. One woman offered to sometimes take him to her house to spend the night with her three children and I thought, well first, I don’t think you can count that as PCA hours, and secondly, no, there is a man in your house I have never met. Plus I barely know you. Do you have guns in your house? Does anyone smoke and when was the last time you had your electrical wiring checked? Because, you know, your house could burn down.
I cannot smother my child. I understand this. But he is six and still seems very vulnerable and helpless to me (and apparently also to the HHCN). I want him at our house, not being picked up or driven anywhere. I want him here, in our house in familiar surroundings; with a woman we have interviewed and spent enough time with to trust our house and child with, and nobody else. Just the two of them.This brings me to my next worry. I have never voluntarily placed my son in a home daycare because I don’t trust people as a rule. I always figured centers had double-checks. No adult was ever alone with a child – they were always being watched by other adults, and hopefully that kept everyone in line. Homes could have just one adult, and several children who can’t speak up for themselves. I have put Monster in two home daycares when we ran out of centers close by. But I disliked both of them. I pulled him out of one and was upset but secretly relieved when Monster got kicked out of the second one.
Don’t get me wrong. I know there are many wonderful home daycares out there and many really awful centers. It’s my own prejudice and I admit this.
So now I don’t know if I even want to leave my son with a PCA, if we ever get the hours approved. The one-on-one aide that they found for Monster now is so good with him and M just loves her. The problems have come less and less frequently since she showed up, and she gives my son the one gift that so many teachers and aides can’t seem to do – the gift of believing in his goodness, and expecting the best out of him instead of the worst. So why would I monkey with something that seems to be working at the time?
It would save us money, but doesn’t that money buy us the peace of mind that I must have to go to work and know that my son is safe and well-cared-for?
I have already started fretting over summer break, because my son will have to spend it somewhere, or with someone. We don’t have enough hours for a FT PCA 5 days a week. There are right now two options – the local Jewish community center and the place he’s in now. If Monster’s aide is staying for the summer, I will keep Monster there, no problem. If she is leaving, I already have the JCC working on finding out if they have the resources to care for Monster. I am STRESSING about this and don’t need to yet. I can’t help it. I can’t help at these times feeling a bit bad for both Monster and me, when I think, “nobody wants him!”. Or they do, but they must find someone to help with him and get copies of his IEP, talk with his case worker, etc, to see exactly what sort of child they are dealing with.
Everything is up in the air. And I hate that more than anything. Being in the middle of “not knowing” is the worst place a person could be, in my opinion. Yes I could maybe allow myself to feel excited, as if the whole world is out there for us to choose from, but instead it feels like we’re in a huge crowded department store and there’s something we NEED and there are two left on the shelf and others are trying to grab them and a salesperson is telling us all, “you must wait until we see who deserves these. We don’t know if they will help you or not, and we don’t want you to have them unless we know that!” And the crowd is closing in, all wanting what we need, and I feel like I cannot take my eyes off that shelf for one moment, because someone may snatch them up before I am even given a chance to plead my case.
I don’t want a surprise. I want someone to tell me, “We’d love to have your son here for the summer, and we will make it work out, no matter what!” instead of the more honest “We’d love to have your son here for the summer, but let’s make sure first that we can find someone to help him, and make sure that any adjustments he needs we will be able to make.” Sigh. I hate honesty. But of course if anyone told me the former, I would be immediately suspicious. Gone are my days of being easily excited by great news and helpful people who have not studied my son in-depth.
Sometimes it’s just sad.
It’s time for me to look at Monster pictures again to remind myself why I am doing all of this. His sweet little face is all I need to go on. And it will all work out. It always does, with or without my worrying. So why do I worry?
Posted by Pangaia at 12:22 PM 0 comments
MONDAY, FEBRUARY 11, 2008
Friends
I used to have friends. All through school I had friends. Even though I wasn’t popular there were always girls and boys that I played with. All the way through high school I had groups of friends. But I was fickle. I hopped from group to group as it suited me. Occasionally I had only one friend and excluded everyone else from my life.
So now I don’t find it surprising that, at 43, I am lacking IRL friends. The last best friend I had got angry with me for moving 2,000 miles away from her and then having a baby, so we stopped keeping in touch. That was 6 years ago. I went to those mommy-and-me-type classes to try and make friends, but found out quickly I was nothing like any of the mothers I met. I was older than most. I had only one child and didn’t want more. I didn’t obsess over getting back to my pre-baby weight. I could have tried to reach out and find something in common with these women, but instead I drew myself in and pulled away.
There were a couple of promising leads, but both came to screaching halts as it became apparent that my child was different from most and that both of these mommies seemed to think it was my fault. So once again I pulled back. I think I was probably feeling this judgment by these women only because I felt so guilty about Monster myself. Chances are they didn’t judge me at all, and I walked away from their friendships due to my own paranoia.But I don’t think much of it because my life is too full for friends. And I know I’m supposed to be taking time off for just me, and I do, but I take that time alone. I feel very content to be a solitary person, it turns out. I have my little family here and I have friends on a board I have belonged to for years now, and they are my truest friends. They are there when I need them and I try to be there for them when they need me, but they are not demanding my time and attention unless I turn on my computer and head over to the board. I’m sure this makes me the most selfish person in the world, but my life is not set up for IRL friends anymore. Whatever time I don’t spend with my husband and/or kid is time I want to spend by myself, doing exactly what I want to do and not having to compromise with anyone else.
Now, is it old age that has done this to me? Have I always been antisocial but made exceptions in school to keep from being a lonely outcast? I don’t know. It bothers me only very occasionally. I shouldn’t say I have no IRL friends, I guess. I have two that I meet up with once a month or so for dinner, and we have been friends for almost 12 years. But one now has two tiny kids and the other has a grandchild and I worry that we are all sort of slipping away from each other into our own remote lives.
I guess I wouldn’t be opposed to having a new IRL best friend if the right person came along. But for now I enjoy my solitude and my quiet. My husband is a lot like me, although lately he is reaching out and getting involved in things and getting out into society. I do make attempts. I took a knitting class. I belong to a support group. I keep meaning to join a book club or something like that. But then part of me just wants to stay inside of myself, secluded and safe. I’m not ready to expose a lot of myself to someone at this time, and I can’t have superficial relationships.
Someday, maybe, I’ll have a new friend. For now I wil hang out on the computer and be a loner. But not a sad one. Just someone who feels a need to close herself away from people most of the time. Remind me of this when I am nagging my son to get out there and make friends.
Posted by Pangaia at 4:47 PM 0 comments
Giving up on Hopelessness
I wrote this in December 2007. It was a turning point for me in my life, when I realized that all my worry and whining was really getting me nowhere, and only hurting my son...
Giving up on Hopelessness
I have been looking at my situation in the completely wrong way. My son’s disability did not happen to ME – it happened to him. I wonder why I have spent almost six years of my life feeling like the victim of some cruel joke.
I am the parent of a child with a disability. How does this affect my life? My son’s birth changed my entire life, but every time a child comes into a parent’s life there is cataclysmic change. Every child comes with their own set of challenges, and every parent brings their own past experiences into the mix. Why shouldn’t life be shaken to its core at this collision of new life and old wounds? This has nothing to do with disability, and everything to do with parenting, universally.
I have spent too much time looking into the future with fear and a sense of hopelessness for both my son and myself. I have not been fair to either of us.
When I feel hopelessness toward my situation, I am telling myself that I do not have the strength to fight when life gets rough. At one point in my life – not very long ago – this was true. But the experience of being a mother to a disabled child has forced me to find the strength inside of myself to advocate effectively for my child. If I can not find the strength inside of me, it is my job to gather about me the people and resources I needed to become stronger, to gain wisdom, and to transform myself into a woman to be reckoned with. Hopelessness toward my own future is self-centered and defeatist. My son has given me a purpose to find my own unique strengths and abilities, and for this I should be grateful, not resentful. I have spent too long resenting the life I found myself living once my child was born.
If I feel hopelessness for my son, then I am telling him (if only unconsciously) that I have given up on him. And there is never any reason to give up on a child, especially not one who shows as much joy and courage as my son does. His future is nowhere near being set. His disability need not limit him in any way. I find that I have been irresponsible in lowering my expectations for this child when all along I should have been raising them, because my son will need to fight and it is up to me to give him the strength he will need to smash any boulders that block his path in life.
My son has this one issue that troubles me. But this is only one part of him. This part (the disability) gets the most attention; the most intense scrutiny. What I don’t want is for my son to start defining himself in only this one facet of his whole being. I want him to remember that he is an immensely beautiful, wonderful, intelligent child who holds all of the promise within him to be great in this world. He is no less or more than any other child.
The magic of the universe flows through him and all children. Most of us as adults have lost touch with this magic but our children are immersed in it and the magic swims through them. Even if I tried to narrow my son to fit my vision of his disability, he still holds the wisdom and knowledge that he flies beyond my expectations. Only if I were able to convince him that he is limited would he then lose this ability to see the light flowing beyond him.
If I allow my son to grow within the miracle of his infinite future, he will never be defined by his disability; rather, he will never lose the magic within him even as he grows, and will carry it with him always. I am blessed to be a part of this child’s life. I really cannot complain. I am in awe of the responsibility I have toward him. His trust in me humbles me. And the magic within him renews me and allows me another chance to find within myself the magic I lost ages ago. Perhaps by letting go of the worry and hopelessness, I open the space in my soul for the magic to enter. It’s waiting just outside. I need only to give it room to enter and grow.
Posted by Pangaia at 9:58 AM 0 comments
SUNDAY, FEBRUARY 10, 2008
Birthday party!!
This afternoon was Monster's birthday party at our local Pump it Up. Super expensive, but so worth it to see my son being king for a day. We are lucky that we have the three kids down the street and the one kid across the street who came to the party, because Monster is exactly popular in school or daycare. So we sat and watched these five sweet kids have just an amazing time and I felt so grateful for all we have (see my gratitude post).
My son is 6. I can't believe how quickly he's growing and changing. It's wonderful and scary and thrilling to be along for the ride.
Posted by Pangaia at 9:28 PM 0 comments
Gratitude
This will sound awful, but for a long time I was not grateful for my son. I was confused and stressed and angry and sad. From the first day Monster came into my life he was demanding and needy and sickly and he didn't sleep and he cried always. I couldn't understand how our baby could be so horrible to deal with when other moms seemed glowy and thrilled with theirs. And as Monster grew older, I became more stressed by his behavior. When he was two he got in trouble at his daycare for beating up a teacher and throwing a chair across the room. Hubby and I fought all of the time and we were so lost. It was a scary feeling.
The diagnosis we got when Monster was 4-1/2 changed everything. After the initial sadness and sense of loss I finally was able to stop looking at myself and my son as horrible people and to start seeing the gift my son is.
So this is my thoughts on gratitude tonight.
I am grateful that:
My child is healthy and seems happy
My marriage has survived and we seem to be reconnecting
My son has a sense of humor, eats well, is bright and beautiful and loves to make us laugh
People have come into my life and been the angels who lifted me up in the worst of times and shined a small light through the darkness so I could get through.
I am a stronger person thanks to my son. I have been forced to fight fights I would have never chosen to fight, and I have been forced to deal with issues I would have never chosen to fight.
I am a more giving, caring person. I can look at parents now and see "rotten" children and feel not judgement, but compassion, and a sense of wanting to help.
I am more outgoing now. I hate talking to people and I hate asking for things. I have to now.
I am tougher. I am pushier. I don't care if people don't like me. My job is to raise my son and to find him help. Sometimes this makes me look like a mega bitch. I don't care.
I was lying on my son's bed this evening while we played "babies" with those little stuffed toys they're putting in Happy Meals - they have little bottles you can "feed" to little stuffed animals. And I realized that life right now is damned good. Nothing is perfect and we are still in the midst of a fight with the afterschool program, but my son is so wonderful that I would not trade anything to get a neurotypical child. It just wouldn't be my boy. Monster is who he is, and he is that way for a reason. He opens my life to so much that I was shut off to before he came along.
My Monster is wonderful. I feel sad about those lost years when I could have been appreciating my child. I wish I had had him diagnosed so much earlier. But I can't do anything about that.
What I do now is make sure my son knows how deeply loved he is every single day. And appreciated. I want him to know how much life he has brought into my soul just by being here.
Posted by Pangaia at 9:10 PM 0 comments
FRIDAY, FEBRUARY 8, 2008
Drugs - Let's ALL have some!!!!
I posted something earlier about being against giving drugs to kids. I think I need to clarify that I will medicate my son at some time if it turns out he really does suffer from anxiety or depression or any other disorders that sometimes come with the Asperger's. For now, he seems fine. Someone in my support group has a son very much like mine, even the same age, and the teachers at his school are hinting to the parents that they need to "put him on something to control his impulsiveness". Hello? He's SIX. MOST six-year-olds are impulsive. But it's easy for teachers to point at the ones with the IEPs and say, oh, your kid needs medication. He's got something wrong with him, see, it says so right here, so you need to drug him up for me to make my life easier."
DO NOT LISTEN TO THESE PEOPLE. And when I recommended before to find yourself a good psychologist, I MEAN "psychologist", NOT "psychiatrist", because psychiatrists are pill-happy and you will soon have a whole medicine chest full of fun colorful goodies you'll be stuffing down your kid's throat 2-3 times a day.
Go slowly. Asperger's itself is not a condition that a child can be "fixed" by giving them drugs. And when they're 6, it's usually way too early to determine if they are anxious or depressed or whatever. Let the psychologist work with you and listen to them. They will tell you if they think your child needs to be "on something". But don't start on drugs right off the bat. Even if your child's teacher, principal, case worker, etc, suggest it. Tell them you are working closely with a psychologist and they need to BACK OFF.
Now. Let's get to the grown-ups. I am three different medications - one for depression, one for anxiety, and one for sleep. The depression has been a lifelong thing. I actually should have started taking antidepressants way earlier than I did. The sleep problem - same thing. I have never slept well.
The anxiety ones? I started needing those when my son started getting kicked out of daycares left and right.
I have a good psychiatrist. He gives me my pills so I can get through my day. I need him.
This makes me the worst kind of hypocrite. I can do behavior modification. I can learn coping skills for my stress and I can exercise more. What I am expecting from my child and what I am doing are two totally different things.
I make this excuse - dealing with my son leaves me with very little time to work on myself. It's true. Someday I hope to get rid of the anti-anxiety pills and just COPE, like a real-live grown-up. but I am not pushing that either. I am big on doing what you need to do to get through life. As long as I am able to give my son my very best every day I do what I need to do. In my case, antidepressants help me to be a better mother, because I actually function as opposed to dragging around the house growling at people and thinking about the most painless way to kill myself.
I guess the point of this post is - do what you've got to do. If your child needs medication, do it. If you need medication, do it. They don't solve everything. They don't really SOLVE anything. But if you need them, you need them. There's no shame in that. There's no shame in helping your child if they need them.
There's too much freaking out going on about how everyone just pops pills nowadays to feel good. I'm lucky to just feel like not jumping off the roof of a tall building. I'm not looking for happiness, just the ability to get through life and raise my son.
Posted by Pangaia at 3:50 PM 1 comments
Cool stuff to buy for kids with Asperger's
In case you happen to have money burning a hole in your pocket. These things have been life savers for us in many ways. And if you can get ahold of grant money, lots of these can be bought with that.
a trampoline (indoor, if you live someplace where half the year you can't go out due to heat or cold)http://www.qvc.com/qic/qvcapp.aspx/view.2/app.detail/params.aol_refer.false.tpl.detail.msn_refer.false.item.T114161.ref.CJ4?
An Indoor Playground with swing, trapeze, optional glider and net swing
http://www.adaptivechild.com/index.asp?PageAction=VIEWCATS&Category=45
a sheepskin
http://www.ikea.com/webapp/wcs/stores/servlet/IkeamsSearch?storeId=12&langId=-1&catalogId=11001&searchType=product&pageNumber=-1&orderBy=score&category=%23%7EProducts&query=sheepskin
A weighted blanket
http://www.autismshop.com/store/search.php?mode=search
Cool-looking pullup pants that don't have snaps or zippers
http://www.ruggedbear-online.com/pullonpants.html
Chewies
http://www.autismshop.com/store/home.php?cat=254
Visual timers
http://www.timetimer.com/
toothpaste that doesn't make our kids gag
http://www.tomsofmaine.com/toms/product.asp?dept_id=300&pf_id=TP-Child
ear plugs for gym or other too-noisy places that won't fall off
http://www.onestepahead.com/catalog/product.jsp?productId=5780&cmSource=Search
If I think of any more, I'll add them. And I'm not advertising for these places, just showing links to show what we've bought Monster. I'm sure they are available lots of places.
Posted by Pangaia at 10:26 AM 0 comments
Thought for the day
This weekend is birthday party weekend. Four kids are coming - the twins and their sister from down the street, and the only child from across the street. I am so thankkful that these children are in our neighborhood and actually enjoy playing with Monster, even though he often dissolves into tears or scream at them for not playing something just right. The school kids seem to want to have nothing to do with him. If a kid screamed at and hit me at unexpected moments, I would feel the same way. This is why I worry about a lack of friends. My son actually cried when he found out "only" four kids were coming to his party. I told him 4 was the perfect number - they would have a great time. Please make sure they all show up, Whoever is In Charge Up There. I want my boy to be happy at his party.
Speaking of friends at school, I requested that the autism specialist talk to Monster's class about his disorder, and hopefully these kids would stop looking at him as the annoying weird kid and start to see the wonderful, charming kid that I am able to see all of the time. So last Friday Monster and the autism specialist stood in front of the class and did a presentation. Monster did wonderfully, according to the adults in attendance. I wish they had video taped it. But I know M was proud of himself because that whole weekend he was SOOOO happy and excited. I would like to thinkt he tides are changing, and maybe by next year there will be kids in his class who not only RSVP to Monster's birthday party invitations, but start giving him invitations to their parties.
I can only hope.
Posted by Pangaia at 7:48 AM 0 comments
THURSDAY, FEBRUARY 7, 2008
Time for fears
It's okay to have fears. We need to recognize them, accept them, and then blow them off.
For now, let's list....
1. What if my son becomes one of those social outcasts who brings a gun to school and shoots his classmates and teachers?
2. What if my son never learns how to make friends?
3. What if all of his teachers hate him?
4. What if he never learns how to take care of himself and we get stuck with him forever?
5. What if my son gets teased to the point where he hates himself and wants to die?
I know there's more. Lots more. I'll have to have a Part 2 list, because I'm drawing a blank.
Posted by Pangaia at 9:13 PM 2 comments
So You Have a Diagnosis.....
I thought it would be helpful to lt people know some of the things you can do once you get (or before you get) your child's diagnosis of Asperger's. So here's a probably-not-complete list. It's just what I can think of now.
1. Take a deep breath. This is a lifelong thing. You will not "Win" and it isn't time to start sprinting. This is a marathon, and you're in it for the long run.
2. Don't panic and run out and try to get your child signed up for 6 different types of treatment/assistance/classes. There's time. Sit down and assess what is most important for your child now. Again, your child will be this way forever. Nothing needs to be super-rushed.
3. Find a good psychologist with tons of experience with ASD children. get his/her advise on what is most important to work on with your child right now. Make regular appointments. Make this person your ally. You need all you can get.
4. Read like you've never read before. Find every book you can about Asperger's and educate yourself as much as you can. Also find as much information as you can on IEPs, Section 504, and IDEA. You will need to arm yourself with as much info as you can. If your child is not yet school-age, start working now with the special Ed people in your school district. They most likely have classes for younger children and you can take advantage of these and give your kid a head start before kindergarten. If your child is school-aged, and the school has diagnosed them, get ready for the IEP. Read, read, read. Ask you r partner to read everything too.
5. If you are going to have an IEP done, get yourself a parent advocate. Every state should have some sort of advocacy support for parents like you. Find them. Call them. Get someone. I waited a year and a half and I paid for waiting that long. Learn from me - get your parent advocate before your first IEP meeting if at all possible.
6. Go easy on yourself and your partner. This is going to be a tough time. After my son's diagnosis, even though we had suspected Asperger's for over a year, I could not say the word "Asperger's" without bursting into tears. Take care of yourselves and try not to snap at each other because life is frustrating and tough. Somehow my marriage has survived, but there were a few times after the diagnosis that i was sure we wouldn't make it.
7. Use your child's psychologist to teach yourself and partner how to best deal with your child. Get "on the same page" as your partner as quickly as possible. This was our biggest problem - we disagreed on how to best deal with Monster's different behaviors and misbehaviors. I was too easy on him; my husband was too picky and strict. There is a middle ground and the sooner you find it the better for everyone involved. Even your kid will be more relaxed and have less behavior troubles if you and your partner can find a comfortable place where each of you can sometimes be right.
8. Try melatonin. I am NOT an advocate of medicating these kids. I know melatonin has some drawbacks. But you can buy 1 mg chewables at any health store. If your kid doesn't sleep, this might help. Of course I have to add that you need to check with your child's doctor first. But the melatonin saved us in so many ways, because my son started SLEEPING. His behavior improved by 50%.
9. Find a support group. There are online ones. There are in-person ones. Try both and stick with the one that makes you most comfortable. I like my in-person one because it is all local parents. I learned more about what was available for my son at the first support group meeting that I attended than I had learned in a year of trying to hunt down my own information. These people are a wealth of knowledge. And they won't ever ever judge you no matter what. It's a nice place to be able to go and be able to talk about your child without having to make excuses for yourself or your kid.
10. Tell everyone. Or tell no one. It's up to you. I tell everyone because I want to teach people. I want people to see my son as a wonderful boy and not as a snotty little shit who doesn't ever listen to his mom and beats up on other kids. So I talk. I don't make excuses for him. I just explain what Asperger's is. You may choose to keep it between yourselves and your child's special ed team and medical team. That's fine too.
11. Take classes. There are classes for parents of children with Asperger's in most major cities. Ask your support group about places near you that offer them. There are classes on discipline, dealing with trouble with siblings, dealing with school, etc.
12. Every day that you wake up, look at your child and thank whatever cosmic power you believe in for bringing this child into your life. Always see the positive in your child and downplay the negative. Appreciate what your child can do and focus on that, and try not to worry too much on what they can't do. If you get a nice support system set up for your child they will be learning what they need to know. You can focus mostly on loving them. Don't think this isn't teaching them something. They need to learn compassion and caring. This is where you come in, and what you will be better at than anyone.
13. Prepare yourself for battle. You WILL need to fight. Schools, camps, after school programs, daycares, etc, will try to exclude your child or cheat them out of their rightful place in the middle of the fun. You know your child's rights (thanks to all the reading you did on Section 504 and IDEA) and you will need to stand firm and not let others make you feel bad for fighting for your child. Your child has rights and only you will fight for them. You will be your child's best advocate. It's the truth. You need to fight. Get tough. It's a rough ride. But you'll have people on your side, and they will be there just enough to give you those little pushes when you need them. But don't expect a lot of help. This is something you have to do. I don't know why. I wish I had more help. But I am doing everything almost single-handedly (Hubby does help but I am the fighter in the relationship, and I am the one who actually believes that fighting for this cause is worthwhile, so I end up doing it).
14. Never stop asking for help. Email everyone you can think of when your child needs something you can't seem to get. Keep asking. You maybe just haven't asked the right people yet. Do the peopl who turned you down have bosses? Ask their bosses. If their bosses turn you down, go to the bosses' bosses. Keep asking. Be persistent. Be a pain in the ass. You know what your child needs. Fight for it.
15. Look into county/state/federal aid for your child. Your child may qualify for social security. Your child may qualify for medical assistance. Your child may qualify for free well-child visits. For most of these you will need a medical diagnosis (as opposed to a school diagnosis), but they are out there and you should ask for them. You can get money to help pay for social skills classes or therapeutic riding. Start asking your county, state, and country what aid they can provide for your child, and how do you get it? This is not a "COOL!! GIMME GIMME GIMME!"-type thing, but it gets DAMNED expensive to pay for all of the special classes and testing and other extra stuff you will want to get for your child to give them the best chance in life. It isn't bad to ask for help if it's going to improve your child's life.
16. Forget what your life used to be like. Don't dwell on it because that life is gone forever. You're in the trenches and the only way out is through. Hang in there. Ask for help. Seek out understanding friends and dump those who cannot understand your child's special needs. Don't let anyone blame you for your child's disorder. Don't let anyone blame you for your child's behavior if you really are doing your damnedest (and 99% of us are). Some people will not be good frineds to keep around. Say goodbye. You need to find yourself the shelter of good friends and relatives who either understand or at least make the effort to.
17. Hang in there. In your darkest hours (and you will have them) remember that tomorrow your child will do something that will make your heart soar, and so you need never lose hope. Our children are amazing and wonderful and we are lucky to have them in our lives. We are. Trust me. Keep your sense of humor, or find one - fast. Learn to laugh at the things that you used to cringe at. next time your child creates a huge scene in the supermarket, just giggle and keep on going. Ignore the stares and whispers. Smile at those who dare to glare at you. Who CARES what other people think? Stop caring. THEY DO NOT UNDERSTAND and so they will judge you. Stop caring. You know that you are a good parent. They can all walk around with their heads up their asses. You are a member of a secret society now. Be proud. You have knowledge they will never have. Hold your head high. Don't EVER let anyone - another parent, a teacher, a principal, a doctor, make you feel ashamed because of your child.
I guess that's it for now. Good luck. Life is good. Trust me. It's good.
Posted by Pangaia at 3:13 PM 0 comments
The kindergarten introductory letter
I saved this for posterity. I thought it gave everyone a good idea who they were working with and what they could do to help. Looking back, I see now that it really never affected the way people chose to see my son. He was labeled a troublemaker from the start. But I tried. I really, really tried to show them that this child had a very kind, very human side......
An Introduction to Our Son
Meet Monster. He is 5-1/2 years old and he is starting kindergarten soon. He is very excited to be going.
As you know from his IEP, my son has been diagnosed with Asperger’s Syndrome. This is a mild form of autism. The main problems children with Aperger’s have are with social skills, emotional control, sensory dysfunction, and difficulty in self-soothing.
Monster is an incredibly sweet boy with a great sense of humor and an outgoing personality. He will live up to the expectations of teachers and aides if they are willing to give him the chance to prove himself. The teachers who have seen that in spite of his occasional troubles Monster is a child who really wants to be good and wants to learn coping techniques were able to get him to work his hardest to be that child.
He has shown real progress and promise. His preschool teacher reported that he has a real love of learning. He has the potential to be a good student and a good friend, if he is given the opportunity to learn how to deal with emotions (which can overwhelm him, especially when he is tired) and to understand how to ask for help before losing control. My son looks normal and talks like an adult, but he does not understand social interaction. He wants very badly to be friends with his peers but lacks the skills to do so and ends up frustrated and hurt. This frustration can sometimes lead to aggression. He understands that this behavior is wrong and feels bad when he acts up, but it is usually out of his control. He is aware of his need to gain control over these outbursts and now occasionally makes attempts to stop himself. He is improving.
Monster has sensory issues, which means that he will become overwhelmed by being in a loud classroom for too long, or from being forced to sit too closely to another child, or just from the regular bustling and jostling that occurs in a school room. Loud noises terrify him. Bright lights irritate him. Being touched too much can make him very upset.When Monster feels overwhelmed by sensory issues, he will need a way to “escape” the chaos (in his mind, this is chaos) as quickly as possible. What he used to do to get out of the room was hit or otherwise hurt a child, which would lead to a time out and a break. He has been learning that he can warn his teachers when he is feeling overwhelmed, and that if they respond and help him, he will be fine. If he is allowed a time out when he asks for it he loses the urge to lash out at others. Some time outs that have worked for Monster in the past are; listening to stories on headsets, taking a quick walk with an aide, or finding a quiet corner to hide. It’s important that Monster doesn’t think of these time outs as punishment, but as breaks he can use to recharge himself. He still does occasionally lash out at other children, and when that happens other teachers have found that what works best is to put him in time out, and remind him that he can ask to come to time out; he doesn’t need to hurt another child to get one. He needs to be reminded of this as often as possible. We would like to be involved in Monster's education as much as possible and are always willing to assist with any issues that might arise. Please feel free to contact us whenever you have a concern or question. We understand that Monster presents certain challenges and would like to make ourselves as available to you as possible.
Monster knows what he needs to do, and has been practicing and working hard at it. The rules of behavior and emotional control come more easily to other children. He has to work much harder to behave as well as the other kids. But he can do it; we are sure of it. What Monster needs is for everyone else to be sure of it too.
Thank you,
Dad and Mom to Monster
Ps – just a couple of extra things – Monster wears orthotics and if for some reason they are taken off at school he will need help putting them back on. He knows how they need to go on but doesn’t have the hand strength to do it himself.
Also, Monster still has some bathroom difficulties – like “wiping” and will most likely need help with that. This is another skill we have been working on but he is not completely independent yet.
Posted by Pangaia at 7:50 AM 0 comments Links to this post
WEDNESDAY, FEBRUARY 6, 2008
Six Years Old, Plus One Day
Yesterday my beautiful boy turned 6. He really is gorgeous. Big brown eyes. Tall. Sweet, cherubic cheeks. He is so squeezably soft that I hold him close often. Luckily for me, he still allows this. The day is coming soon, I fear, when I won't be able to grab and hug my son whenever I feel like it.
This is my diary about raising a child with Asperger's. Yes, this sweet, loveable child of mine has a disorder, and this disorder often makes him appear not-so-loveable to those who have to work with him; teachers, aides, case workers, etc. My son can turn from sweet and cute into a screaming, hitting, kicking, swearing monster quicker than you can blink. It's not a pretty sight. It used to scare the crap out of me. I'm used to it by now, but it is still a shocking sight to strangers.
Of course, everyone blames me. I am his mother. I raised this monster, this angelic-looking child who turns into the spawn of satan quick as a flash. When he throws a tantrum in a crowded Target store, or smacks a kid in the face on the playground for taking the swing my son wanted, it's me who gets the glares, the snubs, the looks of utter disgust.
Every once in a while though, I cross paths with someone who knows, who has a child just like mine, who has had the school ask when their child acts up, "is there anything going on at home?" And we connect, you know? We are foreigners who meet up and realize we both come from the same country. Our children link us. We understand each other. We don't judge when we see a child throwing candy across a store while screaming, "I HATE YOU!!" at the adult with them. We look at that parent and think, oh, I know you! I have been where you are now. We are kindred spirits. Such a cliche. But oh, those moments when I find a parent like me, when we connect, are sublime.
I can tell you all sorts of horror stories. It's sort of sad when you think about it. My son is six and already I have jillions of awful moments I can dredge up and offer to others. I try not to scare people; I want to use these moments of horror for good. I want to educate people who don't understand what it's like to raise a child with Asperger's, and I want to offer my teeny sliver of knowledge I have acquired through lots of sweat and tears to those who have children like mine.
Those of us with young children with Asperger's are still fighting the fight that parents to dsaibled children started about a generation ago. the fight has not been won. Those who came before us have won many decisive battles, and they have brought our children farther than anyone could have imagined in 1950. I bow down to these people who fought so long and so hard, and I intend to not only keep the ground they have acquired but to forge even further into the uncharted territory. I want our children to get a better education than the children before them. I want every child to REALLY get a fair education, and not just have the schools pretend they are educating our children equally.
It's a tough battle. I have already had my son's IEP rewritten three times. He's only had one for a year and a half. I have yelled at the principal of his school (I am NOT proud of this, but he was wrong). I have sent out frantic emails cc'd to about 50 people ranging from my local school district to state level and even to federal level. And if I get responses from any of these people I respond to them and keep their emails and I collect "friends"; people I can turn to who will be on my side when I need them.
The newest IEP went into effect a week ago. The decision we all arrived at (including my parent advocate, who has just come on board to help me while I fight what has often seemed like a losing battle) was to screw my son's education - he needs to learn how to act like a normal child. The academic portion of my son's schooling has been tossed out the window and what the school is doing now is trying to teach my son how to get through the day without beating someone up. And we're building his self esteem, because he has grown up believing himself to be a pretty rotten kid who can't behave and who doesn't deserve to be treated well in schools or daycares.
My son has been kicked out of 7 day cares. He was physically abused in two others. People get pissed at my kid. I don't excuse what they do - I go to the police, actually - but I understand. I can understand without saying it's right or okay. But many times I myself have wanted to thrash my child. Sometimes I have punched the wall instead of my son's face. I deal with this constantly - who is going to lose patience with my son and want to smack him, and will they do it?
At this time I thought that once my son got into school, we would have survived the toughest part of my son's childhood. How seriously deluded was I? I truly believed that my son would go to school, get his IEP, and he'd be set. They had to educate him, right? They had to keep him, right? They had to work to do the best they could with him, right?
Wrong, wrong, and wrong. This is just the beginning. There is no end in sight. I used to get upset when I would think too much about this, but most of the time now I just accept it and go on. My son is a worthy cause and I keep on fighting for him.
He may be a monster to some, but he is my beautiful baby boy. He is smart. He has a great sense of humor. He eats all sorts of exotic foods (recently he asked if we could go to Olive Garden because he was "in the mood for calamari). He loves to be held. These are all sort of odd for Aspergian children. I hit the jackpot in these areas.
Plus, he is simply amazing. He is my best reason for living. So remember always as you read this story that this is, in the end, a true love story. Because I love my son more than I ever imagined was possible. I see inside of him the shining, true spirit that exists, even when he is monster-like and begging for a good smack. I tell myself my son was put on this earth to do something amazing. After all, aren't we all?
Posted by Pangaia at 8:54 PM
