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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!!!!!!

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.