I don't normally write when I am feeling raw, when I am not in a calm writing state. But today I will. I won't get into all the reasons, not to be mysterious but just because it's not always the forum here for that. But I am feeling discouraged this week, very discouraged.
It's not really Janey's behavior that is discouraging me, but with my other worries, it's the constant grinding feeling of knowing there just doesn't seem to be a place in the world for kids like Janey.
I put an article from the New York Times on my Facebook page---here's a link to it--Link It's just one thing in a long list of endless things, but it upset me. It talked about a new program in schools for kids with autism, a program that in many ways is like the school Janey attended for the first 5 years of schooling, an inclusion program. I liked what it had to say, until I read the line that said "To get into the program, children must be deemed capable of doing grade-level work" Yeah. Okay. Like so many other programs supposedly for special needs or autism, kids like Janey are specifically excluded. This is something I find over and over and over---camps and lessons and special events and on and on and on that simply don't want to deal with a child like Janey (or if I am being kinder, would like to deal with her but just don't have the resources)
And I will get really cranky here and say I'm sick of hearing that, basically, intellectual disability doesn't exist in autism. It's not something I hear directly, but something that is often implied. I am the first person to say that I know Janey has many, many strengths. I know she understands more than she lets on. I value her extremely much, AS SHE IS. It is not necessary to make her something she ISN'T to value her. She is a child that has a very significant intellectual disability. It's fine if people choose to not accept that. But they can't choose to not accept that but then still think they are helping all kids with autism.
What if I said "Janey IS capable of doing grade-level work!" and tried to put her in a class like the ones in the article? Because, who knows? Maybe she somehow is! I can just imagine how that would go over. It would not. The truth is, what someone might be capable of is not, in practical daily life, that important. She could not function in a class like the ones described. I am not just guessing this. She used to be in a school with classes like the ones described, or actually, a school far MORE inclusive than the ones described, classes that did welcome kids with intellectual disabilities, but were not able to deal with the full range of autism's challenges. I wish she still could be at that school.. But she can't, and the school was right to admit she couldn't.
And there are so, so many other things like the inclusion classes the article talks about. If you ever want a good laugh, do a search for camps in your areas that say they accept kids with special needs or even more specifically, kids with autism. And then look at the details. There is almost always a rule saying something like "child must be able to function in a 5 to 1 child to adult ratio", "Child must be able to safely follow routines" or even "Child must be fully toilet trained" I'm overstating a bit here, but if camp fliers were honest, they might say something like "Children with special needs accepted as long as they don't have any needs which are beyond those of other children" Or in other words, special needs children are fine if they don't have special needs.
To me, whenever I feel that the media isn't presenting a full picture of children with autism, when voices of parents like me are silenced because we are "speaking for our children and not letting speak for themselves", because we are "portraying autism in a negative light"---well, to me that feels like the truth of Janey, the truth of children like her is something that is being hidden, something that is somehow too horrible to talk about. And it isn't. Janey is an amazing person. Almost everyone who has met her is drawn to her. She is amazing AS SHE IS. She is amazing not because she might have mysterious hidden abilities, she is amazing WITH intellectual disabilities. And WITH occasional self-injurious behaviors. And WITH incomplete toileting skills. And WITH aggressive behaviors when she is very upset. And WITH very limited speech. She is amazing as she actually is. And I will fight until my last breath for children like her to be included, truly included.