Thursday, October 02, 2003
I'm not just a loveable witch with an attitude (although it is one of my more endearing qualities ;oD). I'm also a mom. For those who don't know, I have a 4 year old son with Asperger's Syndrome. Over on the left there are links to see a pic of my boy and to read all about AS.
I have never had to deal with disability before. Well, not on a personal level. I have worked for years in the mental health field supporting those who help folks that need it. Technically I could be labled as disabled because I have a slew of diagnoses but they have never really signifincantly affected my ability to function in the "real world". But when my first born, my baby boy was 18 months old the school he was attending started telling me that they think something might be wrong with him. I ignored them for a
long time. He is a wonderful, loving, intelligent child. He just doesn't like to play with other kids. I had a slew of excuses. 'He's an only child', 'He has only ever gone to a small daycare with 2 other kids'. But as time went on and his sister came along and started growing up a little bit, I could no longer deny that in some areas with his peers he wasn't typically developing.
So we started down the long, lonesome, confusing road of screening. First the Psychiatric Evaluation to get the diagnosis, then the Occupational Therapy evaluation to determine what physical needs he has, then the Speech evaluation to determine what verbal/social help he needs. This whole time I am saying "But he's a great kid. He's not disabled! He can run and play and talk and we have great conversations about everything and he understands things most grown people don't. He's Ian! He loves animals and construction vehicles. If there is anything you need to know about dinosaurs, ask Ian!" But none of this process was about that. None of it was getting to know who Ian was. It was all about shoving him up against a cookie cutter and trying to figure out a way to trim him around the edges.
No, he can't read body language instinctively like we can. He has to cognitively learn how to do it. No, he can't comfortably interact with his peers, especially in large groups. He has no concept of how to do it. He has games he likes to play and things he likes to talk about that are different and in some cases far beyond what his peers are interested in. He doesn't like to play Power Rangers or other fighting games. Aggression confuses him. Emotionally he is a bit behind some of the kids but he is more aware of his own emotions than my husband is and more able to verbalize how he is feeling and identify why he is feeling that way. He has some poor fine motor skills most significantly in pencil grasp and control. But these are all things that can be cognitively learned and he is doing that just by playing with the other kids in his school and having some of the adults around him coach, model and cue for him.
However, this is not happening quickly enough for the professionals and if he is going to be ready for Kindergarten he will need to have these skills somewhat in place to be included in the general classroom and curriculum. So they are taking him out of the school he is in, where the kids he knows and teachers he knows are and where he has been making small but significant strides in these goals and shipping him 30 miles away to a "Special Purpose" program. Actually 3 different ones. One for one-on-one Speech Therapy with a professional, one for Group Occupational Therapy with about 4-5 other kids and their therapists, and 2 afternoons a week at a Developmental Therapy preschool with a group of kids who are also needing Developmental Therapy.
So instead of building on the relationships he is already building in the classroom he is familiar and comfortable with, they are pulling him out and bussing him around to teach him these skill with kids he has no other contact with other than these sessions. And these are not typically developing children. When you are a child past the age of 3, you're personality and actions start to become more and more influenced by your peer group. If you want
anyone to conform to a social norm of behavior, to read and grasp the rhythm, cadence and body language of a group, wouldn't you want to expose them to those influences as much as possible?
Why on EARTH would you want to take them
out of the environment you want them to adjust to, put them into an environment full of people with similar issues to theirs and try to teach them how to conform to the environment they just
LEFT! And to take a child out of a stable, structured environment where they can get into the routine of the day (one of Ian's objectives is to be able to adjust to the routine and discipline of a classroom setting making appropriate transitions) and put him on the road 3 days a week. He is in a car/van almost as much as he is in school some days!
How would a typically developing child react to this? Would anyone expect a 4 year old to take this kind of upheaval in stride? But so far we have been lucky. Ian is a wonderful, even tempered adaptable kid. At this point he still thinks it's fun. But he's only been doing it for a week. I will have to keep feeling him out and assessing him and if it seems to be doing more harm than good, I will just have to put the kaibosh on the whole thing and battle the Kindergarten when he gets there.
Why does it have to be like this? Why does everyone have to feel like they need to single people out for one reason or another? This is why I have been harping on IDEA so hard. In 1975 Special Needs Kids were given a more level playing field with the passage of IDEA. Under IDEA schools are held to a certain level of accountability for the equal education of these kids. So they can go out and compete equally with the Typically Developing kids who are given this education without a second thought. If someone came up to you and told you your son skipped out of math or science class and played in the art room every day wouldn't you be enraged! How could your child pass the SATs if they were in the art room during math or science class?! Why was the school allowing this to happen?! Well, what if the school came to you and told you that
they were going to
put your kid in the art room during math or science class? Or what if they told you that your kid just couldn't go on the field trip to the Museum of Natural History? Schools are doing this every day under the current version of IDEA. Just imagine what will happen if it is gutted the way congress is talking about now?
Everyone wants what is best for their kids. I know I do. Ian will be a great Paleontologist or Marine Biologist one day if I have to storm Washington DC to get it done. But think about it from a totally non-parental, pragmatic viewpoint. Say you don't have any kids. You are just a tax-paying citizen. Some of your taxes go for severely needed social programs to support disabled citizens. I am labled disabled, but I work for a living and pay my taxes, my mortgage, my second mortgage and my car payment on top of everything else. My son is labled disabled. But if he is stuck in the art room instead of in the classroom learning, will he be able to do the same thing? Part of your property taxes go to pay for schools. You have to pay that anyway cause you own your house. But if he's in an assisted living/supportive environment, that is extra money out of your pocket that you wouldn't have needed to pay if he'd been educated to support himself in the first place! He'd be paying taxes right along side of you out of his salary from the University where he would be employed!!
Am I the only one to whom this makes
any sense?!?!?!?!?!?!? This is just one of those things that makes me want to sit down and cry it's so obvious and so obviously the right thing to do. I don't have a college education. Well, ok, 2 years of a 4 year degree but it was in Written Communications. Isn't this all just common sense stuff? GAD.
posted by Unknown
at 1:09 PM ::
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