Reasons why we, the parents of children with low-functioning autism, don't write or talk as often as we might about how tough our lives can be....
Because we don't want to hurt those who share the "autism" part of the diagnosis but not the "low-functioning" part.
Because we know it's natural for people to only have a limited capacity to hear about how hard things can be before they get tired of hearing it.
Because we are too tired to talk about anything.
Because we know it's more politically correct to emphasize the positive.
Because sometimes we are so used to it that it doesn't seem newsworthy.
Because the other people living this life already know how it is, and we think people not living the life generally will never quite get it anyway.
Because we think if we don't put the worst of it into words, it won't quite be as true.
Because we have been taught there is no point in complaining about things that can't be changed.
Because we don't want to hear about "solutions" that don't exist or don't work.
Because we are tired of hearing about all that Temple Grandin's mother did.
Because we feel secretly like we should be doing a better job, and if we were, it wouldn't be so hard.
Because we love our kids so much that it's hard to believe, and admitting how hard our lives are with those same kids feels wrong.
Reasons why we should break the silence and talk and write and shout about it...
Because otherwise, the world assumes autism means Temple Grandin and math geniuses and slightly quirky girls who don't get diagnosed until high school because it's so hard to tell they are actually autistic.
Because maybe, just maybe, if people knew the truth, they would want some of their tax dollars to go toward helping us.
Because when our kids melt down in public, it would help if people didn't assume we were bad parents or they were bad kids.
Because most people could handle the truth.
Because our kids deserve to be written about, to be seen, to be known, as much as all the other kids on earth.
Because of books like the one I read about girls with autism with the line I will never forget "Girls with autism have a very bright future", and the chapter of advice about when our girls get to college.
Because not talking about something means it's an unspeakable tragedy, and our kids' lives are not an unspeakable tragedy.
Because the school system needs to figure out what to do with kids who have had many years of academics and have not learned anything academic.
Because we love our kids so much that we can tell the truth about how our lives truly are in a way that still lets that love shine through.
Because try as we might not to, someday we parents are going to die, and that is the scariest part of all, and it might be less scary if society actually knew our kids, our kids who will someday be adults and will need help that does not yet exist.
Tuesday, August 8, 2017
Thursday, August 3, 2017
I decided yesterday to not send Janey to the rest of summer school. There wasn't that much left---just the rest of this week and then next week, seven days.
The decision wasn't actually that tough to make. Janey had been consistently resisting getting on the bus every morning. Waiting for the bus had become rather hellish most days. Through no fault of the bus driver, the times the bus arrived were very varied. So we had to get outside well before it arrived some days, while other days, it showed up almost right when we started waiting. The days it didn't, though, Janey did everything in her power to go back inside.
Yesterday morning was the worst, although the bus arrived quite early. But before it did, Janey screamed a lot, bit her arm over and over, and then almost bit me, with only a quick jump aside on my part keeping her from doing so. Right after that, the bus showed up, and she got on. She always got on like a stoic once the bus did arrive.
I had my annual physical yesterday morning. When I got back, there was a call on the machine from Janey's summer school teacher. I called him back, and he said that day and the past 4 or 5 days of summer school had been very tough, with Janey screaming a good deal, and he wanted to know if anything at home had been different, like Janey's eating or sleeping. It hadn't been, but in a rare case of me deciding anything on the fly, I realized this just wasn't all worth it, and I told him I'd decided to keep Janey home for the rest of the session.
When Janey got home, I told her summer school was all done. She didn't really react, but a few minutes later, she came up to me and hugged me---a huge, tight hug, the kind we almost never get from her. She didn't let go for a long time. I'm pretty sure that was her reaction.
The whole summer school debacle brings up a couple issues for me. One is how it's really impossible to find out from Janey how things are going when she's not with me, and the other is the lack of activities truly open to Janey in the summer (or year round, actually)
When it became apparent this summer that Janey wasn't eager to go to summer school, I tried hard to talk with her about it. But asking Janey questions is next to impossible. She never answers open-ended questions like "How is summer school?". Never. If I give her choices, like "Is summer school good or bad?", she picks one of the answers randomly, usually the last choice given. If I give her starter sentences, like "At summer school, I feel...." she will occasionally fill in the blank, but she does so with what she thinks is the "right" answer, not what she actually feels. For example, she can be screaming her head off, and I say "right now, I feel..." and she will say "Happy"
I am grateful the Boston schools offer the summer programming they do, but from what I have been able to gather over the years, it's very different than "winter" school. It's also very much school, not camp. It is aimed at maintaining academic progress. The class sizes are much bigger than during the regular year, and the schools are held in whatever building has air conditioning. Unlike most summer programming for most kids, there isn't really much of a fun component. So for Janey, it basically is all day in a room with a lot of other kids (based on the kids on the bus, pretty much all other boys), working on academics, which is not something she is good at or enjoys.
The thing is, there's very little in the way of alternatives. Yesterday at the doctors, I saw a magazine that had a headline "The importance of special needs summer camps" and I gave it a look, just to crack myself up. As I figured, they were the same old options, camps that in no way would accept Janey, camps that pride themselves on "inclusion", if by inclusion you mean that if your child can pass as not having special needs, they are happy to have them there. They are not camps for someone like Janey.
And of course, it's not essential someone goes to camp. I personally hated camp, the few times I tried it. Summer was freedom, a time to do what I wanted, to spend time with friends, to walk through the little woods across the street from me that led to the harbor where I spent much of my time, swimming and watching birds and reading. Summer was playing double solitaire with my sister while we listened for our favorite songs on the radio. Summer was walking the three miles into town to buy penny candy. Summer was sleeping outside in our woodlot. Summer was working in my mother's store, and using the money I earned to have my father bring me home a Mister Misty Float, and going outside with a book and making that float last for an hour. Summer, although never my favorite season, was many things when I was Janey's age, and none of those things are things Janey can do.
In two weeks, Janey will be 13, a teenager. Instead of her world getting bigger, as mine did as I got older, Janey's world seems to get smaller as time goes on. Playgrounds and spray parks don't much welcome a child who looks like an adult among the little ones running around. Janey can't walk alone to the store for candy, and she probably never will be able to. She has no friends. She is not going to spend the night with her friends, laughing until way too late, like I did with Laurel or Marie or Julie or Wendy. She isn't going to play double solitaire with her sister all summer only to realize that said sister was using a totally different set of rules, and that was why Carrie always won and I always lost, and still, remembering those games during which we hoped uncoolly that the latest Barry Manilow or Dan Fogelberg song would come on WABI, the uncool radio station, is one of my favorite memories. Janey's life is very limited. I know that I'm supposed to think of the bright side, to think perhaps she doesn't see it that way, but today, I am feeling like in many ways, that is a tragedy.