Tuesday, May 4, 2010

We went on the course today. The start was awful, they showed a video clip of each child and me and Michelle watched in what I can only describe (for me) as horror as the other children played with trains and interacted with their parents, wrote letters, drew pictures and answered questions. I looked at Michelle and could see tears welling in her eyes as she watched with a fixed expression.

I had to explain to the group a little about James before his clip which was the last one and I felt all choked up. Then came James' clip, and the course supervisor introduced him by saying and here's James playing with Mr Potato Head in a way that made him sound like a baby, and then there was the clip of him sitting there in his Little School top, head down making hissing noises while he tried to put bits on Mr Potato head. In the video, while he was doing this Michelle was calling his name, but he was totally unresponsive.
It really felt like another further and final kick in the guts, to finally attend a course for Autistic kids and expect to meet other parents with children like yours but then find there's another level you can drop. :-(
I bet the other parents were thinking 'Jeeze at least my kids not like that'.
I didn't hear much of the next wee while as it slid by me a bit while I was thinking dark thoughts.

Later whenever the presenters would talk about how 'some of our children might never talk' they would look at us (or I felt so anyway).

On reflection the video clip was one of James at his Autistic best, and as it transpired while these other kids may have all these things they can do (uh like talk!) they in their own ways are just as disabled. It's the social reciprocity that is the underlying problem with all these kids. The child of the woman next to us builds things with wood and nails and can talk fluently, but has to stop ritualistically and ask questions about water all the time whenever they walk down the street past manholes and so-on, and never has cuddles with her and doesn't look her in the eye. This child also broke his arm at school and never said anything, the mother only noticed that something was wrong because his hand was hanging funny.

Tonight we went to Penny's for tea, while there James banged his ear and got very upset, Michelle was holding his arms and he was almost silently mouthing in anguish, I held out my arms and he fell into them and sobbed quietly but with very deep shuddering and clung onto me tightly. I talked to him and stroked his back and head. It is a strange mixed feeling, I felt close to tears myself, but I feel so glad when he clings onto us like this and feel so close to him when he wants to be comforted by his Daddy. I lifted him up after a little and took him close to Michelle and he leaned out to go to and cuddle her. It's fantastic that he loves us like this.

1 comment:

  1. Nostromo,
    I know it's hard to be hopeful when you have days like this. It sounds like you are making good progress though - doing all the "right" things. I feel the same way when I see my daughter with other kids. It's tough to see and I get pretty choked up myself. I try to focus on the positive. Alanna doesn't talk either but she has learned to interact well and wants my attention - this is a huge gain in the last six months!

    Does NZ have financial support/ABA programs for parents?

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