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.
Saturday, March 17, 2007
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.
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