Ogres are like onions

shrekIf you have seen Shrek, you know what I’m talking about. Ogres have layers. Onions have layers. Time to peel back and examine my thoughts over the last week. I almost titled this blog Working the Fan Club, Part Deux, but just couldn’t do it. Bryan had a really great Thanksgiving, that is autism parent speak for we had a really great Thanksgiving. Sometimes we just don’t know how much progress Bryan is making until you see it on other people’s faces or in their comments. We went to my cousin’s house for Thanksgiving. We had gone there two years ago too. To us, Bryan is always making progress, but to qualify or quantify it is difficult for us. It’s like you know your kids are growing but until you see the high-water pants, you really can’t see the changes or at least they’re not obvious. The thing is there are layers to autism and I think about where Bryan is all of the time. The hard part is that it’s all relative, and sometimes you need someone to remind you that your or I should say Bryan’s relative place is pretty damn good. On Thanksgiving, at my cousin’s house, I barely heard Bryan. He was there, of course, and ate, of course, turkey and soda, as promised, but he wasn’t extraordinary. In fact, his behavior was quite ordinary. He played upstairs with the other kids, he rough housed with the other boys, his teenage cousins, and played video games.  A few of my cousins, unprompted by me (which of course is the best part) made a point of letting me know how well they thought he was doing. They reminded me of how tough it was for him to be patient, be quiet, enjoy his day just two years ago. Two years ago he was so anxious about going home, eating, dessert, etc. This year, he was there, but he had matured. It is not possible for me to even attempt to describe the emotions associated with these comments. Everyone loves to hear that their kid is doing well or behaved nicely. When someone acknowledges that your special needs kid behaved like a typical kid, well you feel great, but you also feel guilty. Somehow I can be incredibly happy at the same time feel ashamed. Is the goal to be typical? No it isn’t, but to have a fun, unremarkable Thanksgiving from the autism perspective, I’ll say it’s a triumph.

The other night I was up in Bryan’s room with him at bedtime. We have our little private things we say. We do movie lines together from Shrek and the Incredibles. I know you are not supposed to encourage the kids with autism to use “scripted” language. However, these are our private jokes, our goofy moments when we are mother and son just sharing a cuddle and a smile. The thing about parenting a kid with autism is that you are truly always guilty. Shouldn’t you be working on language and reading comp all day ever day? Shouldn’t you force him to answer questions in complete sentences every time? Well I say no. I am allowed to just be his mom. I am allowed to just love him as he is and not have to work on him all of the time. I read somewhere that it’s a good sign of trust if you and your child have some sort of private jokes or signals. I have this with Jason and it’s very natural. I realize that my little movie line sessions with Bryan are the same. To lie in bed with a giggling Bryan is a great joy.

Recently there has been debate about Autism Speaks. Apparently one of their founders made some comments in an editorial about how autism is an epidemic or at least it should be treated that way. One of the board members of Autism Speaks quit, basically stating that Autism Speaks quest for a cure negates the value of people with autism as they are. This is my interpretation of what happened, not literal at all. On the listserv I participate in there has been great debate about the different perspectives on this and Autism Speaks. Are we saying we want a cure equals we don’t think our kids have value as they are? Is there really an epidemic here or are we all just not “accepting” people with disabilities or people that are different? I don’t think these concepts are mutually exclusive. Working toward a cure may be a bad way to look at it, but looking for medical assistance to make someone’s  life easier is certainly important. Equally important is to accept people with autism the way they are. It’s just not black and white and what really bugs me is that people with autism and people who support autism are at odds with each other about the proper approach. We need research, we need treatments, we need community support, we need it all. We need to embrace all of the things that are possible medically, emotionally, etc. We need to support each other and not judge each other’s support for various treatments, methods, etc. So when you peel back the layers aren’t we all the same in the middle?

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