This is the first day of the spring vacation. Optimist that I think I am deep inside, I start most vacations feeling fairly hopeful about them. It's good to have a break in the routine, and especially, for the boys to have a break from the intense world of high school. But mixed with that feeling is the dread I have of facing more than a week of keeping Janey happy and entertained.
The hard part is dual, really. Just keeping Janey happy in general is often a challenge. When she gets into a down period, she can cry for days on end, and it can be incredibly tough, both for her and for us. We've had a few vacations where that happened, but overall, I would say it happens less often than it used to. Keeping her entertained is the harder part. And that's where the dual problem comes in. With "regular" kids, there are endless things you can do to keep them happy during vacation week. You can pick up any parent's paper and see them---camps, children's museums, special vacation week programs at other museums, family restaurants, lessons, outdoor hikes---and then there's just the playdates and playing with friends that "regular" kids have. With Janey, none of that works. We get a nice little booklet here in the city called "Summer Stuff Jr." that lists summer and vacation programs for kids. There is not a one in there that could handle Janey. I went to a camp fair one time, and not one camp there was equipped to handle lower-functioning autistic kids. And I can't blame them for that. It's a hugely tough job. But it's the flip side of inclusion. School is inclusive, the world is not. If those camps excluded people based on color or religion or nationality, it would be an outrage we'd all condemn. But excluding kids based on disability----well, even I can't get totally outraged about that. We live in the real work.
And even with camps excluded, there is so little else we can do. Janey can't handle the overload of a museum or the mall. Eating out---that's something we attempt about once a year, when Janey is in an exceptionally good mood and we are all together. Even then, we often have to bail out. Playdates---well, that doesn't happen. All the kids like Janey, but no-one is going to invite her over for a day. It would be not a playdate, but a huge respite job for the parent. Even if I went with her, there would be no relaxing with coffee while the kids played.
And so we stay home, mostly. The boys like that. They can entertain themselves for years at home in today's connected world. But with Janey, the days get long. We play some iPad, watch some videos, play in the back yard, read books. None of those hold her interest for long. And she's left bored, and I am left tired.
What am I saying here, besides a rambling complaint? Well, my dream would be that some of the money given for autism would go for vacation and holiday week activities. Maybe a bowling alley could be taken over so autistic kids could have fun in an accepting environment. Maybe a museum could have an autism day, where no-one would mind the flapping and screaming and crying and odd behaviors. Maybe the empty schools could be used for a camp. There are a lot of families like ours. I dream of something like a "Summer Stuff Junior for EVERYONE".