Wednesday, March 27, 2013

more on being an Aspie parent

Still reading Far From the Tree and trying to understand Asperger’s and how I’m supposed to respond and be a parent. I mentioned once before this has to be the hardest, most thought provoking book I’ve ever read.

Today I ran across this:

“I see a picture in my mind of the cavemen talking around the campfire, and off in the corner, there’s the Aspie guy, and he’s chipping the first stone spear, figuring out how to tie it to a stick, cutting some animals sinews to do it. Social people don’t make technology.”       Temple Grandin

Much of the Autism chapter I’m reading tells of the conflicts even within the Autistic community between acceptance, working to find a cure, a cause, how to treat it etc. There was a similar discussion in the chapter on deaf people. We hearing-people might think that every deaf person wants to hear like we do (OK, maybe not like me! – family joke.) but there is not a consensus. There is conflict among the deaf on how they should be taught to communicate and be educated and more.

As I read more about Asperger’s, and this is very hard for me to get my head (and heart) around, some folks glory in their Asperger-ness and wouldn’t trade it for anything. They just want to be accepted for who they are and be allowed to function in the world at large without a “disabling” label.

There are plenty of folks at other points on this spectrum who wish for a cure, better treatments etc. and look on Asperger’s and Autism as a disease to be cured and eliminated like smallpox; parents, patients and more.

As an Aspie-parent I’m struggling with the space in between this. What should I do to help my child? When do I leave my child alone to be who she is? Some of this is basic parenting; we teach and train all our children to get them ready to function on their own in the bigger world outside out front door. Sometimes actions and behaviors are inappropriate no matter what the label. But it is not always so clear where behaviors and attitudes begin and end.

Part of my struggle is to separate those things that are going to create a barrier to entry into that outside world and make it really tough to survive AND those things that are just part of who my child is that may not ever change or get better in the way I think they should be.

Again lots of space in between those two compass points but that’s where we live right now.

People often refer to the journey being the most enjoyable rather than arriving at their destination sometimes. Working on that.

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