Tuesday, January 29, 2013
Make Room for ASD
There is something I have wanted to write about. But every time I start to I feel like I may offend people in the special needs community. I feel as if I am complaining about something I shouldn't. There is the typical world and the atypical world. And we are a minority in both. We have one foot in the typical world and the other in the atypical world. Do you know what I am talking about? Autism, pdd-nos, Aspergers, verbal ASD children.(these all and many others apply)
Boss Lady's disabilities are not concrete if you glimpse into my world for 3 minutes on a good day you would not suspect a thing. If you glimpse in on a bad day you would see what I was talking about. This may be an internal thing, but I feel like there are times I have to prove Boss Lady's Autism to people. You may think this is demented or berserk but there are times in front of a certain company of people, I feel a sense of relief when her behaviors peek through. SICK RIGHT? I think many parents in my position feel the same way. I am a bit conscience stricken of this feeling. It is for the people who tell me she is fine or JUST DO NOT GET IT.
I am tired of the school district saying "But she scores so high cognitively and is verbal" That is probably one of my most hated things said to me. I can not even celebrate my daughter's brilliance because her scoring high cognitively means she may lose services. So a part of me has to be concerned if she is scoring too high. Before she was diagnosed she actually lost special ed services because she was "scoring so high", let me point out she still was not answering to her name, she was not pointing, and she had a lot of other issues. But because the monthly test, that is not designed for all children, said she was cognitively FINE. Yes she could list ever color,shape, and identify numbers and letters. The picture was bigger than this and still is. Why aren't different tests devised for children like her? It does not make any sense to me.
There is so much more to ASD than cognitive functions. There is behavior, motor skills, social skills, sensory processing disorder, which is not even acknowledged as a true disorder. Yes she scores high cognitively because part of her Autism is a great memory. They are little tape recorders! She retains a lot of information, but a lot of this is just spitting out the recorded information. The amount of absorption is unknown.
I was at a birthday party recently and a mother of a typical child, who is in an inclusion class with a handful of children that are on the spectrum, tells me that the Boss does not look autistic and I should not tell people she has autism. I am not ashamed of her or her ASD. Right then and there I realized there is so much more that needs to be done with in the ASD community. These kids are being misplaced in schools and schools are not educating the parent population or the typical children on ASD. It's a hush hush topic. We are not allowed to be proud or open about our ASD kids in the typical world, but the school districts forces ASD kids into inclusion classes and into this world. The kids on some occasions get bullied or the regular education teacher does not handle the ASD child properly and the child "explodes" and then is sent back out of district.
Now the child is in a school for special needs, and she begins to score high cognitively in her new school. She has no visual disabilities. Other parents wonder, why is this child even here? She looks totally fine. and so on. I feel unpleasant even opening about this and I feel bad comparing myself to a mother who has a child who is severely disabled. Why should I complain, sometimes Grace's issues seem so much smaller to me in comparison to many in the special needs community. I read a blog by NT mom, and I identified with something she said. She explained how ASD is on the outskirts of the special needs community. Where do we stand? Where is Grace's place in the world?
There is a continual battle for us on this part of the spectrum. I am always wondering what is best for Grace. Second guessing every decision I make for her education. I have to fight for her and her diagnosis, especially when I am in the presence of uneducated people. The numbers of ASD are rising but for some reason the awareness level is so trying. If the school districts want our ASD children in district they need to not only educate our children but educate everyone else who will be around them. Our kids work so hard endlessly each day to cope with our world. Is it too hard to ask for the Typical world to work to fully understand and accept the ASD world?
"What you deny or ignore, you delay, what YOU ACCEPT you conquer."