See this cat's face? It's me!
This is a picture I took in Normandy, France earlier this month. It's in Lion sur Mer, where my Dad swam as a 7-year-old child in 1927 on holiday and then, by bizarre coincidence, landed by boat 17 years later on D-Day plus 1 with the British forces.
There were a number of houses in this seaside village with cat statues on them like this one! I'm not sure if there is any special meaning to them, but when I was going through my photos I thought the expression on that feline's face mirrored the terror I felt returning home after three weeks vacation in France and Italy.
It wasn't actually on returning home that I felt terror. I was excited to be home and to see my kids again. And I'm happy to be back at work.
Last weekend was a flurry of activity getting ready to take Ben up to Camp Kennebec for two weeks. Was I going to be able to get it together on Saturday to completely pack Ben up for the drive on Sunday morning? It began with me and the camp 'to bring' list at Wal-Mart on Saturday morning at 9. After a couple of hours there I'd crossed most of the things off. Then it was a short drive to Old Navy to pick up a few extra shirts and on to Kumon to get his workbooks. That night D'Arcy would head out to Shopper's to get the flashlight batteries.
It seemed like a small miracle when we set off Sunday morning with enormous bags of comforters and bedding and a couple of suitcases marring our rear-view mirror.
And now I have two weeks of reprieve, of not having the constant care and worry and pressure that seem to be my companions in parenting Ben.
That's what returned after I'd been home from holiday a few days. I was aware of how much of my day revolves around thinking about Ben and worrying about his future. There are plans to try using Proloquo2Go again with Ben in the fall, to try to finally give him a reliable way to communicate. The school is keen. But part of me feels like we are continuing to force Ben into a mold that doesn't fit him. Because these voice systems aren't intuitive and user-friendly they are work for him. Hard work.
That there is never a let-up on trying to make him better blend into a world that isn't designed for him and people like him. And the anxiety and stress this creates for him and us.
He's made incredible gains (for him!) over the last year at school. But it's never enough. And it never will be. And the cost is always lots of anxiety.
I thought about it after I visited L'Arche in Trosly. I wondered what it would be like if Ben went off to live in a L'Arche community (English speaking, of course!). Rather than returning to a mainstream high school where he sticks out.
I don't believe Ben has any desire to move out yet. But I wondered. Where would he be happiest?
Then I considered that if I was to ask my other children if 'they' wanted to go to school, the answer would probably be no. So maybe I wasn't asking the right question.
Posted by Bian
on Selasa, 31 Juli 2012,
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