It is very strange to relate the same story half a dozen times, and always get the same reaction... "So... have you found a good lawyer yet?"
Relating our meeting on Wednesday, before even mentioning that we were thinking its time for a lawyer, this has been, without exception, the first comment from everyone I have spoken to.
It is very strange.
Why should people need lawyers to get what the law already says is their right? And why should it be so common to need one that whole firms do nothing else but this specific type of law? Are schools really this stupid? For the $200 grand its going to cost for one due process, they could put together a decent in-house autism program, especially in a little system like this one. But instead they pay all that money to lawyers. Or spend all that energy in divide- and-conquer, instead of using it to help kids. What planet is this, anyway?
Thursday, March 22, 2007
Wednesday, March 21, 2007
Anybody out there know a good lawyer?
We need one licensed in Virginia. Unfortunatle, that's our update from here.
Thank you.
Thank you.
Having a Stimmy Week
The return of the tracking has been something of a shock for us. WE know it comes and goes, like everybody's moods, but holy crap, he's putting his eyes right to things to track them, or to watch numbers. He hasn't been this bad since school started 2 /2 years ago! It is distressing to us, because usually this means HE is stressed. The question is, why? Is he just stressed because his brain is moving forward and doing new things, or is there a real concern- like something going on at school we should know about?
While we investigate, I will say it has given us an interesting opportunity to see what supports he needs to channel these needs for stimulation. We have discovered that he will focus on video games, een if he will focus on NOTHING else. He loves Pinky DInky Doo and Oobi games through the Noggin site, the coloring pages on Mr. Roger's Neighborhood's site, and some of the counting-based games on Sesame Street. Counting and numbers are very comforting for him. WE also noticed that putting him in a rocking chair makes a difference, and having something in his hands makes a difference. IF he can sit with some playdough in his hands, he can do more. I think having the trackball mouse for the video games gives him that same kind of input, and heps him focus. And, of course, the gum...
I wouldn't really worry about him not being able to focus fully except that full-day kindergarten is coming. He won't have a choice- he has to perform the activitiy when it is presented. So we need strategies for helping him perform those tasks, and perform them on time. He'll have aenough trouble keeping up because of the processing delays, but if we can find those strategies that help him process- instead of zone out completely and process nothing- the happier he will be, because his frustration will be less.
Oh, by the way, I meet with teh Director of Student Services this morning about the school OT situation. Wish me luck, and I will keep you posted!
While we investigate, I will say it has given us an interesting opportunity to see what supports he needs to channel these needs for stimulation. We have discovered that he will focus on video games, een if he will focus on NOTHING else. He loves Pinky DInky Doo and Oobi games through the Noggin site, the coloring pages on Mr. Roger's Neighborhood's site, and some of the counting-based games on Sesame Street. Counting and numbers are very comforting for him. WE also noticed that putting him in a rocking chair makes a difference, and having something in his hands makes a difference. IF he can sit with some playdough in his hands, he can do more. I think having the trackball mouse for the video games gives him that same kind of input, and heps him focus. And, of course, the gum...
I wouldn't really worry about him not being able to focus fully except that full-day kindergarten is coming. He won't have a choice- he has to perform the activitiy when it is presented. So we need strategies for helping him perform those tasks, and perform them on time. He'll have aenough trouble keeping up because of the processing delays, but if we can find those strategies that help him process- instead of zone out completely and process nothing- the happier he will be, because his frustration will be less.
Oh, by the way, I meet with teh Director of Student Services this morning about the school OT situation. Wish me luck, and I will keep you posted!
Monday, March 19, 2007
Therapeutic Listening
So Andy has been having some issues with noise and sound, so we signed him up for therapeutic listening. This is a program where the child listens to specially modulated sound, stimulating brain development. His first session was today.
The whole experience was overwhelming. He was in a new room, with a new person, and then she wanted to put headphones on him! Yikes! Insta-meltdown! Then she started noticing other things, and finally turned to me and said, "He really desperately needs this; but you know he has other issues, right?"
Riiiiiiight. Just what I want to hear on a Monday morning.
So we decided to just try to get him to put the earphones on this week, instead of having him listen to anything. Coming down teh road, I put them on, so he would see me wearing them; and he wanted them. So I handed then back to him... and he put them right on, and cheerfully wore them until naptime.
Riiiiiiight.
So the question is... how to control the overload? The earphones do not muffle outside sound, but I wonder if they control it some for him- so that it hits his ear at a certain angle, and if that would make a difference. I wonder if putting sound directly into his ear like this might not hurt. Yet, I can't send him to school like he is- there is no way he can focus on anythng in a classroom full of chaotic noise! Maybe sending him to a Montessori, where its usually quiet, would work better fo him than a public school. I suppose we'll have to wait it out and see. :P
The whole experience was overwhelming. He was in a new room, with a new person, and then she wanted to put headphones on him! Yikes! Insta-meltdown! Then she started noticing other things, and finally turned to me and said, "He really desperately needs this; but you know he has other issues, right?"
Riiiiiiight. Just what I want to hear on a Monday morning.
So we decided to just try to get him to put the earphones on this week, instead of having him listen to anything. Coming down teh road, I put them on, so he would see me wearing them; and he wanted them. So I handed then back to him... and he put them right on, and cheerfully wore them until naptime.
Riiiiiiight.
So the question is... how to control the overload? The earphones do not muffle outside sound, but I wonder if they control it some for him- so that it hits his ear at a certain angle, and if that would make a difference. I wonder if putting sound directly into his ear like this might not hurt. Yet, I can't send him to school like he is- there is no way he can focus on anythng in a classroom full of chaotic noise! Maybe sending him to a Montessori, where its usually quiet, would work better fo him than a public school. I suppose we'll have to wait it out and see. :P
Sunday, March 18, 2007
A Review: Nature's New Hope
Charlottesville today. We checked out a therapy where Joey would listen to music and look at a light while lying on a table that moves. This is supposed to encourage his brain to improve his sensory integration.
The three different parts of this I have seen elsewhere. The light has to do with visual integration, but I haven't seen it in any "regular" or mainstream therapies... I hope someone will comment if they have. The table movement is for vestibular stuff, like the swings and stuff Joey does for OT. The sound is similar to therapeutic listening, which Andy starts tomorrow, and both our OT and out speech therapy folks were very happy about.
A sample session was part of the visit. He hated the table. He had to lay on his back and look at the light, but I think it made him nauseous. He preferred to sit up, but of course, that wouldn't do. But far worse, the lights had to be out. I know most autistic people prefer less light, or even dark, but Joey is really freaked by it, unless he's in his own bedroom. He hates dark. The lady tried to use the light switch as a reinforcer to encourage him to lay on his back and be still, but that made me all the more skeptical. "Do this and I'll stop torturing you" is just not what I would consider good therapy. However, he definitely was speaking better and clearer while this was all happening than I've heard from him in a while.
It costs $3000, plus the costs of being in Charlottesville for 12 days, since he would need to be there every day, twice a day.
So I would say, if you have a kid with sensory issues, and you start checking this out, I can't really say there is nothing to it at all. However, overall it seemed a little... duckish.
The three different parts of this I have seen elsewhere. The light has to do with visual integration, but I haven't seen it in any "regular" or mainstream therapies... I hope someone will comment if they have. The table movement is for vestibular stuff, like the swings and stuff Joey does for OT. The sound is similar to therapeutic listening, which Andy starts tomorrow, and both our OT and out speech therapy folks were very happy about.
A sample session was part of the visit. He hated the table. He had to lay on his back and look at the light, but I think it made him nauseous. He preferred to sit up, but of course, that wouldn't do. But far worse, the lights had to be out. I know most autistic people prefer less light, or even dark, but Joey is really freaked by it, unless he's in his own bedroom. He hates dark. The lady tried to use the light switch as a reinforcer to encourage him to lay on his back and be still, but that made me all the more skeptical. "Do this and I'll stop torturing you" is just not what I would consider good therapy. However, he definitely was speaking better and clearer while this was all happening than I've heard from him in a while.
It costs $3000, plus the costs of being in Charlottesville for 12 days, since he would need to be there every day, twice a day.
So I would say, if you have a kid with sensory issues, and you start checking this out, I can't really say there is nothing to it at all. However, overall it seemed a little... duckish.
Saturday, March 17, 2007
A Review: The Faison School
Well, I spent today in Richmond, getting a tour of the Faison School. Thought I'd share.
The Faison School has taken over an old hospital building. The younger kids have space downstairs, including the wide, still-clinical halls where they park their ride-ons and hang their bookbags. Wandering about this lower level are a variety of students, not just the younger ones, all with a one-on-one aide or therapist. There are trampolines, bean-bag chairs, train sets, and sit-and-spins. It is an ABA paradise of small rooms divided roughly into cubbies by bookshelves and cubicle-like walls and desks. In other words, if you are looking for a 12-month, full-day, $57,000 DTT program, I have found the perfect thing for your kid. And I am convinced there are people who need this, and kids who do very well with it. I am very happy for them.
However, I was very concerned about it as a program for Joey. For one, the person giving me the tour seemed amazed that Joey could ride a bicycle through a hall at high speed, and manouver through that hall without hitting any object or any person. She also seemed very impressed when he said "hello" to her on cue (I prompted him with "Say hello to Ms. Shirley, Joey!" and he said "hello" without even looking a her- something he only does with strangers). I had hoped this would not be such an impressive accomplishment for a child going into kindergarden. Not one of the children we saw there was even close to being "as functional" as Joey- the behaviors were far more random and severe. The programs we were shown were far below Joey's level. When I asked about socialization and generalization, I was told there was an hour each day when teh children worked in groups (great- with other autistic kids), and that there as plenty of opportunity for "natural interaction" and generalization in the halls. Um... the hals that still look remarkably like a hospital (or other institution). In other words, they had nothing to offer Joey but more drill. Isn;t there supposed to be more to ABA than DTT?
If you have a kid who is having a lot of trouble responding, who needs to learn how to learn and how to play, I would definitely look into Faison. The people there were very nice and polite, they seemed to care a lot about their charges, and they showed an interest in both Joey and Andy. However, if you have a kid who has moved on and needs more attention to social skills, interacting with peers, and sensory issues, well... I'm still looking. I'll keep you posted.
The Faison School has taken over an old hospital building. The younger kids have space downstairs, including the wide, still-clinical halls where they park their ride-ons and hang their bookbags. Wandering about this lower level are a variety of students, not just the younger ones, all with a one-on-one aide or therapist. There are trampolines, bean-bag chairs, train sets, and sit-and-spins. It is an ABA paradise of small rooms divided roughly into cubbies by bookshelves and cubicle-like walls and desks. In other words, if you are looking for a 12-month, full-day, $57,000 DTT program, I have found the perfect thing for your kid. And I am convinced there are people who need this, and kids who do very well with it. I am very happy for them.
However, I was very concerned about it as a program for Joey. For one, the person giving me the tour seemed amazed that Joey could ride a bicycle through a hall at high speed, and manouver through that hall without hitting any object or any person. She also seemed very impressed when he said "hello" to her on cue (I prompted him with "Say hello to Ms. Shirley, Joey!" and he said "hello" without even looking a her- something he only does with strangers). I had hoped this would not be such an impressive accomplishment for a child going into kindergarden. Not one of the children we saw there was even close to being "as functional" as Joey- the behaviors were far more random and severe. The programs we were shown were far below Joey's level. When I asked about socialization and generalization, I was told there was an hour each day when teh children worked in groups (great- with other autistic kids), and that there as plenty of opportunity for "natural interaction" and generalization in the halls. Um... the hals that still look remarkably like a hospital (or other institution). In other words, they had nothing to offer Joey but more drill. Isn;t there supposed to be more to ABA than DTT?
If you have a kid who is having a lot of trouble responding, who needs to learn how to learn and how to play, I would definitely look into Faison. The people there were very nice and polite, they seemed to care a lot about their charges, and they showed an interest in both Joey and Andy. However, if you have a kid who has moved on and needs more attention to social skills, interacting with peers, and sensory issues, well... I'm still looking. I'll keep you posted.
Friday, March 16, 2007
Mourning: To Jim Sinclair
This is responding to a well-known essay by Jim Sinclair, "Don't Mourn for Us." The essay is directed at parents of autistic children, and does much of teh smae kind of generalizing that his organization seems to be fighting. The essay can be found presently at http://web.syr.edu/~jisincla/dontmourn.htm.
When I discovered Joey was autistic, I did indeed mourn. I still get upset. I greived. I worried. You could even say, I freaked out. But I think you missed completely why I was greiving- and why I still find myself listening to "Never Surrender" and having to pull off the road. You seem to miss the battle parents are fighting for their their children.
Sure, you mourn for the "normal child" you were "supposed to have." We wanted to go to Italy and ended up in Holland. But you seem to think that is 1. a bad thing, and 2. the only thing. Autism is not happening to me. I am not autistic. But what I realized, feared, knew, and greived about, was that normal life was being threatened- for me, for my child, for my family. "Normal" families have no clue abotu IEPs, special ed administrators, and the constraints of labels and resources on the simple opportunity for your child to be independent. Normal parents assume independence is in the future of their child. I can never make that assumption again. I have to fight administrators, teachers, therapists, supervisors, doctors, insurance agents, and institution, just to allow my child the same shot at respect, independence, and freedom that normal families don't even think about. As long as their kid doesn't do something stupidly criminal, they will be free to live their lives as they choose. I am going to have to fight for that right for Joey- and if I don't do that fight RIGHT NOW, he will not have that opportunity- ever. If I ever STOP fighting- if we ever surrender to this insane, ignorant system that is supposed to be helping, but is instead trying in all ways to hinder us- our default is that he will NOT be free. He will be stuck in some institution, with people who don't care dictating his every move, every minute, every breath. This is not a reason to be upset?
I'm not worried about the child I was SUPPOSED TO have. I'm scared and fighting hard enough for the child I DO have- the wonderful, beautiful, intelligent, sweetling little guy who is my Joey, and his darling, intelligent, handsome, lickable brother, Andy, even though Andy does not have autism. These are my boys. My job is to help and support them, so they can be healthy, happy, educated adults. I'm the mom here.
The whole "autistic person/person with autism" thing is just plain idiotic, and I wish people would stop playing semantics. The hole high/low functioning thing is equally stupid. People with autism are autistic. "HIgh functioning" and "low functioning" is a guide to hich services these people may need, not whether or not they need them. My kid needs service as much as any head-banging, non-verbal, wheelchair-bound person; he just needs DIFFERENT services, because he has different issues and disabilities. He may OR MAY NOT require MORE or less service. Just because my kid doesn't need a helmet doesn;t mean he doesn't need accommodations in order to function and care for himself. This should be a battle to get everyone what they need, not fighting each other for slices of an ever-shrinking pie.
When I look at Joey, I have no need to say this is not some other child. I noticed that, oh, five years ago. Does that mean I can't be worried about him, I'm not supposed to try to help him function and be independent in the world? Because that is the signal you are sending- especially to my school admin. They take up essays like this and say, "see? these people don't want services. They WANT to be autistic, just as they are. They don't want to be independent, employed, or functional- they think it torture!"
Joey is NOT an alien child who landed in my life by accident. He is a human being, and he is my son, just as much as Andy is a human being, and my son. This is NOT an alien world. We are human beings on planet earth. We just need to know how to help him understand this world, just as we help Andy understand this world. And it takes Joey a little more time to process information. He IS my own kind- he is a human being, just like I am. He just needs different help, different support, different teaching methods than what I needed, or what Andy may need. He is not an "it." Joey is MY SON.
When I discovered Joey was autistic, I did indeed mourn. I still get upset. I greived. I worried. You could even say, I freaked out. But I think you missed completely why I was greiving- and why I still find myself listening to "Never Surrender" and having to pull off the road. You seem to miss the battle parents are fighting for their their children.
Sure, you mourn for the "normal child" you were "supposed to have." We wanted to go to Italy and ended up in Holland. But you seem to think that is 1. a bad thing, and 2. the only thing. Autism is not happening to me. I am not autistic. But what I realized, feared, knew, and greived about, was that normal life was being threatened- for me, for my child, for my family. "Normal" families have no clue abotu IEPs, special ed administrators, and the constraints of labels and resources on the simple opportunity for your child to be independent. Normal parents assume independence is in the future of their child. I can never make that assumption again. I have to fight administrators, teachers, therapists, supervisors, doctors, insurance agents, and institution, just to allow my child the same shot at respect, independence, and freedom that normal families don't even think about. As long as their kid doesn't do something stupidly criminal, they will be free to live their lives as they choose. I am going to have to fight for that right for Joey- and if I don't do that fight RIGHT NOW, he will not have that opportunity- ever. If I ever STOP fighting- if we ever surrender to this insane, ignorant system that is supposed to be helping, but is instead trying in all ways to hinder us- our default is that he will NOT be free. He will be stuck in some institution, with people who don't care dictating his every move, every minute, every breath. This is not a reason to be upset?
I'm not worried about the child I was SUPPOSED TO have. I'm scared and fighting hard enough for the child I DO have- the wonderful, beautiful, intelligent, sweetling little guy who is my Joey, and his darling, intelligent, handsome, lickable brother, Andy, even though Andy does not have autism. These are my boys. My job is to help and support them, so they can be healthy, happy, educated adults. I'm the mom here.
The whole "autistic person/person with autism" thing is just plain idiotic, and I wish people would stop playing semantics. The hole high/low functioning thing is equally stupid. People with autism are autistic. "HIgh functioning" and "low functioning" is a guide to hich services these people may need, not whether or not they need them. My kid needs service as much as any head-banging, non-verbal, wheelchair-bound person; he just needs DIFFERENT services, because he has different issues and disabilities. He may OR MAY NOT require MORE or less service. Just because my kid doesn't need a helmet doesn;t mean he doesn't need accommodations in order to function and care for himself. This should be a battle to get everyone what they need, not fighting each other for slices of an ever-shrinking pie.
When I look at Joey, I have no need to say this is not some other child. I noticed that, oh, five years ago. Does that mean I can't be worried about him, I'm not supposed to try to help him function and be independent in the world? Because that is the signal you are sending- especially to my school admin. They take up essays like this and say, "see? these people don't want services. They WANT to be autistic, just as they are. They don't want to be independent, employed, or functional- they think it torture!"
Joey is NOT an alien child who landed in my life by accident. He is a human being, and he is my son, just as much as Andy is a human being, and my son. This is NOT an alien world. We are human beings on planet earth. We just need to know how to help him understand this world, just as we help Andy understand this world. And it takes Joey a little more time to process information. He IS my own kind- he is a human being, just like I am. He just needs different help, different support, different teaching methods than what I needed, or what Andy may need. He is not an "it." Joey is MY SON.
Saturday, March 03, 2007
IEPs are like Indian Trains
Dealing with school personnel is like trying to change your reservation on a first-class coach in India.
When I was India, I was scheduled to stop in Bodhgaya. I had made my reservation some months before, when putting together my trip, and had no idea the monsoon would be late, and that it would be unusually fierce, and that the entire region would be flooded. So I decided it woul dbe safer just to continue through to Varanasi, and skip the water-logged city. According to my literature, the thing to do was to go to the India Rail office in Calcutta, change the reservation, and then all would be well, since I had an Indrail Pass- a fancy ticket that allows you to ride any Indian train for free, because you paid more money for it than most Indians make in a year. It is a very common way for westerners to get around.
So I obediently trekked over to the India Rail office, stood patiently in line for two hours, and finally got in to see the folks who deal with reservations, and calmly and politely explained that I no longer wanted to get off the train at Bodhgaya; I wanted to go through to Varanasi, and needed to change my reservation. I was promptly told that since I had an IndRail Pass, I just needed to tell the conductor that I no longer wished to stop at Bodhgaya, but that I wanted to continue to Varanasi. No problem.
So a few days later, in the pouring rain, I boarded the train and when the conductor came to check my ticket, I told him I no longer wished to get off the train at Bodhgaya, I wanted to continue to Varanasi. The conductor frowned, shook his head, and said since my reservation was only to Bodhgaya, I had to get off at Bodhgaya. He had no room for me beyond that.
I told him what the people in the office said. I showed him the little book that cam ewith the IndRail Pass that said I could go anywhere with the ticket. I offered to take a "seat" in second class (that's the art of the train most folks think of, with the people hanging out the doors and windows). But no, I my reservation was for Bodhgaya, I had to get off at Bodhgaya. Knowing that it was now very, very dangerous to get off at Bodhgaya (riots had started there in the days between my trip to the India Rail Office and the day I set foot on the train), I knew I couldn't budge; I had to be found a seat. I had to yell, cry, and raise a general fuss. I stomped my feet, told him he would need to be calling the police in Bodhgaya to get me off that train. I wasn't getting off. I had an IndRail Pass, and I was going to Varanasi, and had been told it was not only possible, but that this was the right way to do it, and I wasn't going to leave the train, if I had to stand the extra four hours to Varanasi in the aisle, or even the bathroom (and if you've ever seen a bathroom on an India Rail train, you know how ugly this got.) In teh end, he found me a seat on another car shortly before the train was to pull in to Bodhgaya.
That's when I realized that the peoplein Calcutta had counted on me doing exactly what I had done- throw a tantrum. They didn't have to do any actual work, and the western woman would scream and stomp until she got her way anyway, so why bother?
Unless you scream, yell, and threaten legal action, the school doesn't care. They don't even try to sound like they care. The OT was very clear: she is only legaly obligated to provide "educational service." The fact that I was asking for "educational service" be damned; she was only required to provide so much service, and by God, that was all she was going to provide. So now I am in the middle of having to have a tantrum, so that my Joey will get the service he needs.
I hate throwing tantrums. It would be so much nicer if IEP teams did what they were supposed to do- determine what a child needs. That it what the IEP meeting is supposed to do- not to ask if there is funding available, but to determine what is needed. But that is never what happens. Instead, if any money needs to be spent, it is "out of the scope of an IEP" or they start talking about medical rather than educational service. Like they aren't providing medical service... but it's irrelevant, because I am asking for educational service.
AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!
When I was India, I was scheduled to stop in Bodhgaya. I had made my reservation some months before, when putting together my trip, and had no idea the monsoon would be late, and that it would be unusually fierce, and that the entire region would be flooded. So I decided it woul dbe safer just to continue through to Varanasi, and skip the water-logged city. According to my literature, the thing to do was to go to the India Rail office in Calcutta, change the reservation, and then all would be well, since I had an Indrail Pass- a fancy ticket that allows you to ride any Indian train for free, because you paid more money for it than most Indians make in a year. It is a very common way for westerners to get around.
So I obediently trekked over to the India Rail office, stood patiently in line for two hours, and finally got in to see the folks who deal with reservations, and calmly and politely explained that I no longer wanted to get off the train at Bodhgaya; I wanted to go through to Varanasi, and needed to change my reservation. I was promptly told that since I had an IndRail Pass, I just needed to tell the conductor that I no longer wished to stop at Bodhgaya, but that I wanted to continue to Varanasi. No problem.
So a few days later, in the pouring rain, I boarded the train and when the conductor came to check my ticket, I told him I no longer wished to get off the train at Bodhgaya, I wanted to continue to Varanasi. The conductor frowned, shook his head, and said since my reservation was only to Bodhgaya, I had to get off at Bodhgaya. He had no room for me beyond that.
I told him what the people in the office said. I showed him the little book that cam ewith the IndRail Pass that said I could go anywhere with the ticket. I offered to take a "seat" in second class (that's the art of the train most folks think of, with the people hanging out the doors and windows). But no, I my reservation was for Bodhgaya, I had to get off at Bodhgaya. Knowing that it was now very, very dangerous to get off at Bodhgaya (riots had started there in the days between my trip to the India Rail Office and the day I set foot on the train), I knew I couldn't budge; I had to be found a seat. I had to yell, cry, and raise a general fuss. I stomped my feet, told him he would need to be calling the police in Bodhgaya to get me off that train. I wasn't getting off. I had an IndRail Pass, and I was going to Varanasi, and had been told it was not only possible, but that this was the right way to do it, and I wasn't going to leave the train, if I had to stand the extra four hours to Varanasi in the aisle, or even the bathroom (and if you've ever seen a bathroom on an India Rail train, you know how ugly this got.) In teh end, he found me a seat on another car shortly before the train was to pull in to Bodhgaya.
That's when I realized that the peoplein Calcutta had counted on me doing exactly what I had done- throw a tantrum. They didn't have to do any actual work, and the western woman would scream and stomp until she got her way anyway, so why bother?
Unless you scream, yell, and threaten legal action, the school doesn't care. They don't even try to sound like they care. The OT was very clear: she is only legaly obligated to provide "educational service." The fact that I was asking for "educational service" be damned; she was only required to provide so much service, and by God, that was all she was going to provide. So now I am in the middle of having to have a tantrum, so that my Joey will get the service he needs.
I hate throwing tantrums. It would be so much nicer if IEP teams did what they were supposed to do- determine what a child needs. That it what the IEP meeting is supposed to do- not to ask if there is funding available, but to determine what is needed. But that is never what happens. Instead, if any money needs to be spent, it is "out of the scope of an IEP" or they start talking about medical rather than educational service. Like they aren't providing medical service... but it's irrelevant, because I am asking for educational service.
AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!
From the depths of post-IEP hell
Something for my admins to read:
http://www.danasview.net/where.htm
http://www.danasview.net/where.htm
Monday, February 26, 2007
Mr. Rogers
Toss out the fad parenting books. Dump those "raising your kids better than your mom raised you" idiots. What has been the most helpful for me raising my guys?
Mr. Rogers.
We have the glories of TiVO. My husband insisted on it. Not being a TV fan, I didn't really care- now I'm a very happy peson. I have taken to having Mr. Rogers going while Joey is in therapy. It is not only incredibly calming, but a wonderful way to get language to use for talking to your kids. We talk all the time about giving Joey language to use. I think we forget that, not having raised kids before, we need language, too. Here is a wealth of language- talking about making things, and emotions, and people, and all sorts of stuff that is important to kids just Joey's age.
One thing about faddy books, they don't work for kids with autism. Fad "discipline" and the latest modes for getting kids to do what the parents want them to do just aren't very helpful for a child who is on the edge of not even hearing you. Timeouts make no sense. Bargains have no meaning. With Mr. Rogers, you have positive and proactive ways of helping a child, because Mr. Rogers always keeps in mind that children are people. Behaviors have reasons. A child isn't screaming or crying just to annoy you. Here is a whole daily program about considering what a child's world looks like, feels like, how it works and doesn' work, and how to talk about what is happening- in simple, clear language, just like you need for an autistic child, or any child.
What would Mr. Rogers say about raising a disabled child? "Well... he's still a child, right?"
Mr. Rogers.
We have the glories of TiVO. My husband insisted on it. Not being a TV fan, I didn't really care- now I'm a very happy peson. I have taken to having Mr. Rogers going while Joey is in therapy. It is not only incredibly calming, but a wonderful way to get language to use for talking to your kids. We talk all the time about giving Joey language to use. I think we forget that, not having raised kids before, we need language, too. Here is a wealth of language- talking about making things, and emotions, and people, and all sorts of stuff that is important to kids just Joey's age.
One thing about faddy books, they don't work for kids with autism. Fad "discipline" and the latest modes for getting kids to do what the parents want them to do just aren't very helpful for a child who is on the edge of not even hearing you. Timeouts make no sense. Bargains have no meaning. With Mr. Rogers, you have positive and proactive ways of helping a child, because Mr. Rogers always keeps in mind that children are people. Behaviors have reasons. A child isn't screaming or crying just to annoy you. Here is a whole daily program about considering what a child's world looks like, feels like, how it works and doesn' work, and how to talk about what is happening- in simple, clear language, just like you need for an autistic child, or any child.
What would Mr. Rogers say about raising a disabled child? "Well... he's still a child, right?"
Friday, February 23, 2007
Just another day
Our preschool teacher found out I got Joey's file copied, and now has the letter saying I am going to taperecord the Wednesday meeting. She freaked out. I had to tell her there was nothing she could do. It was a much harder conversation than Wednesday is going to be. On Wednesday, I am going to go in and make sure my child's rights to live, to develop, to learn, to have the opportunity at independence, to have his feelings considered, and to be human will be respected. This was telling someone else that they couldn't avoid a conversation they hoped to avoid.
The girls left the workroom a mess again. I don't know why they can't take two minutes to put the games back in the box, the crayons back in the drawer, the notebook back on the table... but it seems to be some great challenge of the age. And apparently I have to do my own graphs.
And Joey has returned to spinning cars. I always worry about working him too hard. Today, he just had a nice, quiet day playing with Mom and Brother. And spinning his cars. BUt we all need some days like that.
The girls left the workroom a mess again. I don't know why they can't take two minutes to put the games back in the box, the crayons back in the drawer, the notebook back on the table... but it seems to be some great challenge of the age. And apparently I have to do my own graphs.
And Joey has returned to spinning cars. I always worry about working him too hard. Today, he just had a nice, quiet day playing with Mom and Brother. And spinning his cars. BUt we all need some days like that.
Wednesday, February 21, 2007
Sunday School
I just noticed that I forgot to follow-up about the Sunday School meeting. Since it feeds into our war against the OT, I thought I'd just let you all know what happened there.
We had our meeting, and really talked about some of the issues they were having with Joey. These folks are not special ed trained, and the teachers aren't even education trained- they're Sunday School teachers, and have been for a while. Autism is not something they usually deal with. To them, he needs to act like everybody else, or at least do what everyone else does. The director was very helpful, having been in teh Stafford schools and having at least some exposure to the challenges and accommodations of autistic children. She could translate. ;)
I let them know I would have something of an answer by the time Sunday rolled around again. So the next Sunday I walked in, and told them about teh gum, and brought his vibrator. Before I even got the pack of gum out of my pocket, the one teacher had a peice in his mouth, and the other was thanking me. I was shoo-ed away. I returned to find he had earned a lollipop like everyone else. They had someone put a hand on his shoulder during storytime, and had also given him a stuffed animal to hold, so that they had the vibrator in reserve. Bingo. Earned a lollipop.
Compare that to an OT that has fought tooth and nail against even trying the gum for almost four weeks now.
We had our meeting, and really talked about some of the issues they were having with Joey. These folks are not special ed trained, and the teachers aren't even education trained- they're Sunday School teachers, and have been for a while. Autism is not something they usually deal with. To them, he needs to act like everybody else, or at least do what everyone else does. The director was very helpful, having been in teh Stafford schools and having at least some exposure to the challenges and accommodations of autistic children. She could translate. ;)
I let them know I would have something of an answer by the time Sunday rolled around again. So the next Sunday I walked in, and told them about teh gum, and brought his vibrator. Before I even got the pack of gum out of my pocket, the one teacher had a peice in his mouth, and the other was thanking me. I was shoo-ed away. I returned to find he had earned a lollipop like everyone else. They had someone put a hand on his shoulder during storytime, and had also given him a stuffed animal to hold, so that they had the vibrator in reserve. Bingo. Earned a lollipop.
Compare that to an OT that has fought tooth and nail against even trying the gum for almost four weeks now.
Reports from the Front
I keep telling myself this was all just a big misunderstanding, that this OT wasn't really saying Joey should have a chew toy instead of gum, this was all just a silly word-problem.
Nope. She's serious.
And so the big battle is scheduled for Feb 28: the IEP meeting.
I tried to get this settled before the IEP, but apparently she had better things to do and everyone else's kid was more important than mine, and she just couldn't fit me into her schedule. So instead of quietly settling the matter, we're going to settle it loud and clear, and in front of her colleagues. Yuck.
The discussion between her and my private OT has been terrifyingly illuminating. She really does think putting fingers to a child's throat is "more subtle" than giving them a peice of chewing gum. Really. She didn't understand the importance of sensory integration interventions to an autistic child. In fact, for a women outing herself as a professional OT and advertising her work with the new autism resource room- one of the reasons she couldn't meet- you'd think she'd have some inkling about the sensory integration issues of autistic children, and approparite, functional interventions and accommodations. Every time I think about her in there with other autistic children, I get more and more concerned. They need someone in there supporting them- especially an OT- not someone torturing them!
So Wednesday is the big day. Everybody, please hope hard.
Nope. She's serious.
And so the big battle is scheduled for Feb 28: the IEP meeting.
I tried to get this settled before the IEP, but apparently she had better things to do and everyone else's kid was more important than mine, and she just couldn't fit me into her schedule. So instead of quietly settling the matter, we're going to settle it loud and clear, and in front of her colleagues. Yuck.
The discussion between her and my private OT has been terrifyingly illuminating. She really does think putting fingers to a child's throat is "more subtle" than giving them a peice of chewing gum. Really. She didn't understand the importance of sensory integration interventions to an autistic child. In fact, for a women outing herself as a professional OT and advertising her work with the new autism resource room- one of the reasons she couldn't meet- you'd think she'd have some inkling about the sensory integration issues of autistic children, and approparite, functional interventions and accommodations. Every time I think about her in there with other autistic children, I get more and more concerned. They need someone in there supporting them- especially an OT- not someone torturing them!
So Wednesday is the big day. Everybody, please hope hard.
Friday, February 02, 2007
Declaration of War
My private OT and I have managed to put together a simple sensory diet for Joey. For those of you not familiar with sensory diet, this is a series of strategies to deal with Joey's sensory integration issues. Joey has been displaying some disruptive behaviors lately- clicking, scripting, etc. If you give him a peice of gum, it stops; he gets the oral sensory input he needs. Seems simple, yes?
Apparently not.
The note I got back from the school OT was that she finds it effective to put her fingers on his throat and tell him "stop."Will he swallow the gum? What will they tell the other children about the gum? And they don't allow gum in regular classrooms.
Hello?
I doubt this woman wants to run after my son all day with her fingers on his throat, so the intervention she is recommending is not functional. Swallowing gum is not fatal. What do they tell children about other people's needs- such as chocolate for a diabetic, or special lunches for children with allergies? And what do I care what they allow in "regular classrooms"? For one, he isn't in one, and for two, inclusion classrooms should have no toruble accomodating such a simple strategy! What the HELL???
So I called the teacher. That went OK. She seemed to at least understand I was trying to help- I hope. BUt to have an OT so completely ignorant of sensory integration issues and interventions... where is the support for his teacher in these strategies?
So I called the special ed supervisor. I am hoping he will help. If not, I will have to go to the director. Allan has HAD it with this OT- this is the THIRD run-in with this person. In fact, this blog was started as a way to deal with frustrations from this lady. We're through. If she were a private OT, she'd be fired.
Apparently not.
The note I got back from the school OT was that she finds it effective to put her fingers on his throat and tell him "stop."Will he swallow the gum? What will they tell the other children about the gum? And they don't allow gum in regular classrooms.
Hello?
I doubt this woman wants to run after my son all day with her fingers on his throat, so the intervention she is recommending is not functional. Swallowing gum is not fatal. What do they tell children about other people's needs- such as chocolate for a diabetic, or special lunches for children with allergies? And what do I care what they allow in "regular classrooms"? For one, he isn't in one, and for two, inclusion classrooms should have no toruble accomodating such a simple strategy! What the HELL???
So I called the teacher. That went OK. She seemed to at least understand I was trying to help- I hope. BUt to have an OT so completely ignorant of sensory integration issues and interventions... where is the support for his teacher in these strategies?
So I called the special ed supervisor. I am hoping he will help. If not, I will have to go to the director. Allan has HAD it with this OT- this is the THIRD run-in with this person. In fact, this blog was started as a way to deal with frustrations from this lady. We're through. If she were a private OT, she'd be fired.
Saturday, January 27, 2007
Commentary: Bumper Stickers
There was once a Peanuts cartoon that said, "A bumper sticker is not a philosophy." However, there are an awful lot of autism bumper stickers swirling around now. I thought I'd share some thoughts about them.
1. The Puzzle Ribbon. The Puzzle ribbon is starting to be problematic. Many autistic adults are asserting that they do not want to be a "puzzle to be solved." That seems to miss the point, but perhaps that's just my own interpretation of the puzzle peice motif. We are all puzzles. The Autistic Puzzle is multi-colored because of the idea of "spectrum." However, as most know, puzzles with peices that are so different can either be a peice of cake to put together- or terribly, terribly hard. Getting life to come together for an autistic person can be far more of a challenge than with a "neurotypical" person. It is also extremely recognizable, so I hope we keep it.
2. "This is a cat. It is not a defective dog. It is very happy being a cat." I like this idea, but it is a little off. The point is that an autistic person is not a defective neurotypical person. I'm good with that. However, we live in a world run by dogs, designed for dogs, and where the primary way of getting what one needs is by wagging your tail when you are happy, and growling when you are upset. If you wag when you are upset, and growl/purr when you are happy, you probably are not going to get any milk in this world. I like the idea of not needing to be "cured" or made into a dog, though.
3. "Autism: It's not like you think." Love it. Have one to put on my bumper as soon as spring arrives.
4. "If at first you don't succeed, perserverate." Although I understand the humor in this, I am not sure the giggle at one of real issues of autism is something I want spread around. This is only good for meetings with ASD people and parents. Ditto for "It's a Stimmy Day."
5. "I'm not a brat. I have autism!" Joey's original preschool teacher, Miss Angie, once noted about Joey's unusual behaviors: " It really doesn't matter why he is doing these things. IF a behavior is unacceptable, it;s unacceptable, and needs to be changed." I will return to the story of the Mom Afraid of the Mouse, where she's standing, screaming int eh kitchen, waving a knife around. The story was told on the blog I got it from to demonstrate how behaviors seen as "unacceptable" in autistic people are seen as "acceptable" with neurotypical people. However, I must say that I disagree. The mom screaming over a mouse in the kitchen is still unacceptable behavior. That's why we find it funny. Here is a normally acceptable human being acting in a strange and unacceptable way. She really needs to learn not to freak out when a mouse scampers over her floor.
On the other hand, I do get weary of people coming up to me in stores and telling me to discipline my kid, or give me dirty looks if he happens to squeal, or get excited, or perserverate. Its like asking a parent to tell their wheel-chair bound kid to just get up and walk already. I can't imagine being a parent of a child who really loses it in stores, and dealing with people while trying to deal with a real meltdown. Sheesh, people, mind your own business. Even parents of brats are probably doing the best they can.
6. "Yes, my son has autism. No, he's not like Rainman." I'd like to have a set od business-size cards that say this. It would save time.
7. "Always Unique Totally Interesting Sometimes Mysterious." I know some autistic adults don't like the "mysterious" part of this, but I think I'd like to wear this t-shirt without the first letters lined up. Its perfect.
8. "Fair is not everyone getting the same thing, or what they want. Fair is when each student gets what they need." I wish every single person who worked in education really understood this. Our school OT effectively denied us summer services last year by saying that the school system couldn't do more for Joey than for the normal kids. I'm cool with that. But I thought that teh point was the school was giving each kid a fair shot at being an independant, socially responsible human being. They don't all make it. So... why doesn't my kid get to have this opportunity?
9. "What? Is my autism showing?" See #4 and #5.
10. "I'm just like everyone else... only different." We should all have this on our bumpers.
11. "If 1 in 166 children in this country were being kidnapped, we;d have a national emergency. We do. Autism." Ok, this one kinda gets my craw. I don't like the idea of comparing Joey to a child who has been kidnapped. Now, I'll say that when we started, we were definitely "losing" Joey. On the other hand, autism is not being "kidnapped." Joey is Joey. He has autism. We can manage to teach him to get along in a non-autistic world, but he is who he is. However, I think the point of the emergency is very much pertinent. Kids who need to get along in the world need services, they need help, they need attention. Most of them are not getting it, and many are beign actively denied due to ignorance and inaction. It is shameful. If 1 in 166 kids were being born with cerebral palsy, you bet someone would be getting off their butt and making things move and shake.
12. "Welcome to Holland. Come on, I'll show you around." This is great for therapists and parents who know the ropes and have moved past the grieving and the shock and come to the realization that this isn't the end of the world. Just the end of the world as you thought it ought to have been.
13. "Autism is a difference, not a disease." Dont show this one to your insurance company.
14." My communication skills are fine. It's not my fault you don't speak my language." Excuse me? We're not trying to speak English while in Holland here. These kids need to be supported and communicate functionally. Discouraging services is not the answer.
15. "Stop trying to fix me. I'm not broken." Then you don't need a personal assistant. I understand this one should be filed under the "this is a cat" and other anti-cure slogans, but this one really rubs me wrong. Its one of those suggestions that these people do not need help and support, do not need therapy, do not need special education. I know it is probably intended to move away from looking for a pill or a shot or a diet to "cure" the autism, but the tone comes across really, really wrong to me. Joey is not currently able to function in a regular environment at an independent level. Therefore, I need to do something.
16. "The next person who says autism is like a trip to Holland gets a mouthful of wooden shoe." Excuse me, but whoever wote this did not read the peice. It is not about being autistic. It is about being a parent of a disabled child, when all your friends have normal kids. It's about sitting in a room full of moms talking about how they just had a sleepover with 15 kids at their house, when my kid hasn't yet made a friend. Its about parents telling you about their kids' first word when your kid is deaf, or their first step when your kid is confined to a wheelchair. It's about the playdates you aren't invited to, the schools your kid can't go to, the life events your kid may never have. It's also about the miracle of Joey's first time coming up the stairs from having ABA and calling me "Mommy." The joy of watching Joey touch a drum. The absolute shock of having him turn to me and say, "I like the music!" It's about moving beyond shock, anger, fear, disappointment, and grief, and living the life you have rather than the one you thought you ought to have had, or the one everyone else seems to be having. It's about supporting the child and accepting the child as s/he is, and not trying to get that child to be a person you thought s/he should have been. It's about coming to terms with what society deems "normal", and what you actually have, and realizing that you have a treasure, too.
So I hate this sticker. It just communicates to me people who are too wrapped up int themselves to understand that raising an autistic child (or any disabled child) is not like raising a "typical" one, and it can be frustrating, isolating, and frightening, and parents need some support and understanding, too. It looks to me like the reaction of a spoiled rotten brat to something that doesn't even pertain to them. It dismisses the sacrifices parents make to raise and care for their autistic children- often well into adulthood.
17. "My kid has autism, alright? Now get out of my way!" I don't get this one. Somehow, not understanding this makes me feel better. Obviously this is a problem I have not had to face.
18. "Spock was not Vulcan. He was autistic, with pointy ears." I always remember the beginning of the Star Trek movie where the re-generated Spock is regaining memories and the computer is testing him. He is answering questions at a frantic pace without breaking a sweat, when it asks him, "How do you feel?" He can't answer the question. His human mother has to explain to him that the computer knows he is half-human, and so has emotions, even though he has been trained in the Vulcan way. This is important. Don't just train your autistic children to respond to academic skills. They also need social skills, need to be able to understnad emotion, need to be able to connect to the world. Education professionals often forget this, since their screening paperwork doesn't account for it.
19. "We all have challeneges. What makes you 'special'"? Another one that should be on every bumper.
20. "Autism is a disorder, not a disease." I like this one because it concedes that autism is not normal, and requires services and support, while turning aside the "cure" thing. My child is not just "different." Joey is currently disabled. He cannot be cured, but he can be helped.
21. "Inclusion works when teachers believe all children can learn." Teaching is a tough job- when it is done right. Keeping track of all those learning styles and needs- wow! Unfortunately, most classrooms are not set up for inclusion. Either you get it the way the teacher hands it out today, or you're screwed.
22. "My kid was poisoed by mercury in vaccines, but everyone calls it autism." I'd like to make a sticker that reads, "My kid was NOT poisoned by vaccines. He's still autistic. Now what?"
23. "Oops. Wrong Planet." I giggle at this one, because it's another one I think I ought to be wearing myself.
24. "When life gives you lemons... you'd better not be talking about your kid that way." I am sure this is a reference to some essay on accepting being a parent of a disabled child, but I have no idea what essay. However, I definitely have to agree- my life may not be "as expected", but Joey ain't a lemon.
25. "I am not a puzzle, I am a person." We're all puzzles. We're all people, too.
1. The Puzzle Ribbon. The Puzzle ribbon is starting to be problematic. Many autistic adults are asserting that they do not want to be a "puzzle to be solved." That seems to miss the point, but perhaps that's just my own interpretation of the puzzle peice motif. We are all puzzles. The Autistic Puzzle is multi-colored because of the idea of "spectrum." However, as most know, puzzles with peices that are so different can either be a peice of cake to put together- or terribly, terribly hard. Getting life to come together for an autistic person can be far more of a challenge than with a "neurotypical" person. It is also extremely recognizable, so I hope we keep it.
2. "This is a cat. It is not a defective dog. It is very happy being a cat." I like this idea, but it is a little off. The point is that an autistic person is not a defective neurotypical person. I'm good with that. However, we live in a world run by dogs, designed for dogs, and where the primary way of getting what one needs is by wagging your tail when you are happy, and growling when you are upset. If you wag when you are upset, and growl/purr when you are happy, you probably are not going to get any milk in this world. I like the idea of not needing to be "cured" or made into a dog, though.
3. "Autism: It's not like you think." Love it. Have one to put on my bumper as soon as spring arrives.
4. "If at first you don't succeed, perserverate." Although I understand the humor in this, I am not sure the giggle at one of real issues of autism is something I want spread around. This is only good for meetings with ASD people and parents. Ditto for "It's a Stimmy Day."
5. "I'm not a brat. I have autism!" Joey's original preschool teacher, Miss Angie, once noted about Joey's unusual behaviors: " It really doesn't matter why he is doing these things. IF a behavior is unacceptable, it;s unacceptable, and needs to be changed." I will return to the story of the Mom Afraid of the Mouse, where she's standing, screaming int eh kitchen, waving a knife around. The story was told on the blog I got it from to demonstrate how behaviors seen as "unacceptable" in autistic people are seen as "acceptable" with neurotypical people. However, I must say that I disagree. The mom screaming over a mouse in the kitchen is still unacceptable behavior. That's why we find it funny. Here is a normally acceptable human being acting in a strange and unacceptable way. She really needs to learn not to freak out when a mouse scampers over her floor.
On the other hand, I do get weary of people coming up to me in stores and telling me to discipline my kid, or give me dirty looks if he happens to squeal, or get excited, or perserverate. Its like asking a parent to tell their wheel-chair bound kid to just get up and walk already. I can't imagine being a parent of a child who really loses it in stores, and dealing with people while trying to deal with a real meltdown. Sheesh, people, mind your own business. Even parents of brats are probably doing the best they can.
6. "Yes, my son has autism. No, he's not like Rainman." I'd like to have a set od business-size cards that say this. It would save time.
7. "Always Unique Totally Interesting Sometimes Mysterious." I know some autistic adults don't like the "mysterious" part of this, but I think I'd like to wear this t-shirt without the first letters lined up. Its perfect.
8. "Fair is not everyone getting the same thing, or what they want. Fair is when each student gets what they need." I wish every single person who worked in education really understood this. Our school OT effectively denied us summer services last year by saying that the school system couldn't do more for Joey than for the normal kids. I'm cool with that. But I thought that teh point was the school was giving each kid a fair shot at being an independant, socially responsible human being. They don't all make it. So... why doesn't my kid get to have this opportunity?
9. "What? Is my autism showing?" See #4 and #5.
10. "I'm just like everyone else... only different." We should all have this on our bumpers.
11. "If 1 in 166 children in this country were being kidnapped, we;d have a national emergency. We do. Autism." Ok, this one kinda gets my craw. I don't like the idea of comparing Joey to a child who has been kidnapped. Now, I'll say that when we started, we were definitely "losing" Joey. On the other hand, autism is not being "kidnapped." Joey is Joey. He has autism. We can manage to teach him to get along in a non-autistic world, but he is who he is. However, I think the point of the emergency is very much pertinent. Kids who need to get along in the world need services, they need help, they need attention. Most of them are not getting it, and many are beign actively denied due to ignorance and inaction. It is shameful. If 1 in 166 kids were being born with cerebral palsy, you bet someone would be getting off their butt and making things move and shake.
12. "Welcome to Holland. Come on, I'll show you around." This is great for therapists and parents who know the ropes and have moved past the grieving and the shock and come to the realization that this isn't the end of the world. Just the end of the world as you thought it ought to have been.
13. "Autism is a difference, not a disease." Dont show this one to your insurance company.
14." My communication skills are fine. It's not my fault you don't speak my language." Excuse me? We're not trying to speak English while in Holland here. These kids need to be supported and communicate functionally. Discouraging services is not the answer.
15. "Stop trying to fix me. I'm not broken." Then you don't need a personal assistant. I understand this one should be filed under the "this is a cat" and other anti-cure slogans, but this one really rubs me wrong. Its one of those suggestions that these people do not need help and support, do not need therapy, do not need special education. I know it is probably intended to move away from looking for a pill or a shot or a diet to "cure" the autism, but the tone comes across really, really wrong to me. Joey is not currently able to function in a regular environment at an independent level. Therefore, I need to do something.
16. "The next person who says autism is like a trip to Holland gets a mouthful of wooden shoe." Excuse me, but whoever wote this did not read the peice. It is not about being autistic. It is about being a parent of a disabled child, when all your friends have normal kids. It's about sitting in a room full of moms talking about how they just had a sleepover with 15 kids at their house, when my kid hasn't yet made a friend. Its about parents telling you about their kids' first word when your kid is deaf, or their first step when your kid is confined to a wheelchair. It's about the playdates you aren't invited to, the schools your kid can't go to, the life events your kid may never have. It's also about the miracle of Joey's first time coming up the stairs from having ABA and calling me "Mommy." The joy of watching Joey touch a drum. The absolute shock of having him turn to me and say, "I like the music!" It's about moving beyond shock, anger, fear, disappointment, and grief, and living the life you have rather than the one you thought you ought to have had, or the one everyone else seems to be having. It's about supporting the child and accepting the child as s/he is, and not trying to get that child to be a person you thought s/he should have been. It's about coming to terms with what society deems "normal", and what you actually have, and realizing that you have a treasure, too.
So I hate this sticker. It just communicates to me people who are too wrapped up int themselves to understand that raising an autistic child (or any disabled child) is not like raising a "typical" one, and it can be frustrating, isolating, and frightening, and parents need some support and understanding, too. It looks to me like the reaction of a spoiled rotten brat to something that doesn't even pertain to them. It dismisses the sacrifices parents make to raise and care for their autistic children- often well into adulthood.
17. "My kid has autism, alright? Now get out of my way!" I don't get this one. Somehow, not understanding this makes me feel better. Obviously this is a problem I have not had to face.
18. "Spock was not Vulcan. He was autistic, with pointy ears." I always remember the beginning of the Star Trek movie where the re-generated Spock is regaining memories and the computer is testing him. He is answering questions at a frantic pace without breaking a sweat, when it asks him, "How do you feel?" He can't answer the question. His human mother has to explain to him that the computer knows he is half-human, and so has emotions, even though he has been trained in the Vulcan way. This is important. Don't just train your autistic children to respond to academic skills. They also need social skills, need to be able to understnad emotion, need to be able to connect to the world. Education professionals often forget this, since their screening paperwork doesn't account for it.
19. "We all have challeneges. What makes you 'special'"? Another one that should be on every bumper.
20. "Autism is a disorder, not a disease." I like this one because it concedes that autism is not normal, and requires services and support, while turning aside the "cure" thing. My child is not just "different." Joey is currently disabled. He cannot be cured, but he can be helped.
21. "Inclusion works when teachers believe all children can learn." Teaching is a tough job- when it is done right. Keeping track of all those learning styles and needs- wow! Unfortunately, most classrooms are not set up for inclusion. Either you get it the way the teacher hands it out today, or you're screwed.
22. "My kid was poisoed by mercury in vaccines, but everyone calls it autism." I'd like to make a sticker that reads, "My kid was NOT poisoned by vaccines. He's still autistic. Now what?"
23. "Oops. Wrong Planet." I giggle at this one, because it's another one I think I ought to be wearing myself.
24. "When life gives you lemons... you'd better not be talking about your kid that way." I am sure this is a reference to some essay on accepting being a parent of a disabled child, but I have no idea what essay. However, I definitely have to agree- my life may not be "as expected", but Joey ain't a lemon.
25. "I am not a puzzle, I am a person." We're all puzzles. We're all people, too.
Playing with the band
Joey loves music. Mom got him some drumsticks, and he's been going crazy (in a good way). He seems to have an OK sense of beat and time. I took him over to the church this evening. They have a casual contemporary service on Saturday nights, with a little band. When I took him last week to be baptized (long story), he really loved the music. He danced in the aisles, strumming his tummy liek a guitar or pretending to drum, and impressed everyone when they stopped and he'd say "Very good!" Then the band leader started ending songs with "Amen!" so Joey started saying "Amen!" as soon as a song ended. Everyone thought that was incredibly cute. Well, its a church after all. What's cuter than a four-year-old enjoying being at church and joining into "Amen" at the end of a song?
Anyway, he loved it so much I took him tonight. We sat up in the front pew so he could get a good long look at the instruments, and one of the percussionists came over and started handing him instruments to play, like shakers and spoonsets. Joey was THRILLED. He did a really nice job, especially with the spoons. I haven't seen him that happy in ages!
So often when people interact with Joey, and start to get the clue that something is not-quite-right, we get a curious reaction- usually something akin to a dirty look, or a scowl, or a pushing-away that is really very hurtful. It was just nice to see people react to Joey in a way that appreciated who he is, and welcomed him. Nobody there wanted to try to change him, or ask him to be quiet, or stop him from being a four-year-old in love with music. Yes, that band has a new #1 fan.
Me.
Anyway, he loved it so much I took him tonight. We sat up in the front pew so he could get a good long look at the instruments, and one of the percussionists came over and started handing him instruments to play, like shakers and spoonsets. Joey was THRILLED. He did a really nice job, especially with the spoons. I haven't seen him that happy in ages!
So often when people interact with Joey, and start to get the clue that something is not-quite-right, we get a curious reaction- usually something akin to a dirty look, or a scowl, or a pushing-away that is really very hurtful. It was just nice to see people react to Joey in a way that appreciated who he is, and welcomed him. Nobody there wanted to try to change him, or ask him to be quiet, or stop him from being a four-year-old in love with music. Yes, that band has a new #1 fan.
Me.
Monday, January 22, 2007
Snow! Snow! Snow!
Well, we finally got some. The boys are thrilled. They also have discovered that mom doesn't need to be mother-henning them all the time, all the time- it can be fun to be outside in the snow, with no mom (especially if mom is baking cookies for when boys get too cold and wet to stay outside!) It was very strange to be in teh house by myself for a whole twenty minutes. I spent most it looking out the door making sure the guys were safe.
Sunday school is getting interesting. The lady who runs the preschool wants to put together a little plan for dealing with Joey. I tried sending in a letter- especially since the Sunday school teachers insist on shoo-ing me out the door- but in bad weeks (and we've benhaving a really bad week), tey need to actually READ that letter. :P I'm glad to have a meeting this Sunday, because then no one has to read, they'll be informed (with a witness).
Really, if Joey could just have an attendant, he could go anywhere and be in a regular class. No-one will do that, though- "he's in too good a shape."
Friday, January 19, 2007
I have added a link to the list, to an article called "Welome to Holland." It's been circulaing enough that some folks might find it trite. I noticed some autistic adults are upset by it, by I want to note that it is about being a PARENT of a disabled child, not actually BEING a disabled person (though I'm not sure why it wouldn't apply- it's about thinking life is going to be one way, and having it turn out another way- not better, or worse, but different than expected or intended).
Thursday, January 18, 2007
Reasons
We've been having a bit of a bad week. Nothing particular has happened, but Joey has been tracking, scripting, and otherwise showing us he is having trouble. It would be nice if there was one stress we could point to and fix, but I doubt its that simple. Back to school, new stuff at school, maybe a growth spurt, the unusual weather and weather swings, normal growing-up type stuff...
It reminds me of a story of a woman in the kitchen on the table, screaming. You enter the room, and she's screaming, heedless of all else, knife in hand, clearly irrational. What do you do?
Find the mouse, of course.
One thing I learned when Joey was a baby, he doesn't scream without a reason. He doesn't take a backslide with no reason. I just can't always determine the reason. It must be horribly frustratng for him, because it's frustrating for me! What would that poor lady on the table do if we didn't know she was afraid of mice?
So we're having a frustrating week. I know a lot of "adult austistic" sites that get all worked up about trying to stop things like tracking and scripting, but they really do get in Joey's way. If Andy started, say, playing videogames at all hours and not doign his homework, I wouldn't think twice about shutting off the xbox. If a typical child doodles on his test paper instead of answering the questions, we reprimand them. So why would I be berated for moving Joey away from tracking and scripting, and back to the task at hand?
It reminds me of a story of a woman in the kitchen on the table, screaming. You enter the room, and she's screaming, heedless of all else, knife in hand, clearly irrational. What do you do?
Find the mouse, of course.
One thing I learned when Joey was a baby, he doesn't scream without a reason. He doesn't take a backslide with no reason. I just can't always determine the reason. It must be horribly frustratng for him, because it's frustrating for me! What would that poor lady on the table do if we didn't know she was afraid of mice?
So we're having a frustrating week. I know a lot of "adult austistic" sites that get all worked up about trying to stop things like tracking and scripting, but they really do get in Joey's way. If Andy started, say, playing videogames at all hours and not doign his homework, I wouldn't think twice about shutting off the xbox. If a typical child doodles on his test paper instead of answering the questions, we reprimand them. So why would I be berated for moving Joey away from tracking and scripting, and back to the task at hand?
Sunday, January 07, 2007
Hoarding
Joey has come through the holidays pretty well, all things considered. He had a great time yesterday with the Perrygos, playing with his cousins. He was fascinated by the water and the docks- we'll try to take him in teh summer when he can go on the boat.
Andy has been more of a problem. He totally loses it in noise. When teh presents started being passed out and opened, he melted down. He;s also hoarding- toys, food, anything he can put his hands on. It's insane. Its like he's even hoarding us- if no=one is near, he calls. He won't sleep or nap without a huge struggle, calling us back again and again. Sittign with him doesn't help. His bed gets heaped with stuff, and he's lost in a sea of stuffed animals. I don't know what I am doing wrong that he feels so insecure, but we have to find a way to help him. We just have to.
Andy has been more of a problem. He totally loses it in noise. When teh presents started being passed out and opened, he melted down. He;s also hoarding- toys, food, anything he can put his hands on. It's insane. Its like he's even hoarding us- if no=one is near, he calls. He won't sleep or nap without a huge struggle, calling us back again and again. Sittign with him doesn't help. His bed gets heaped with stuff, and he's lost in a sea of stuffed animals. I don't know what I am doing wrong that he feels so insecure, but we have to find a way to help him. We just have to.
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