The Sibling Toll

It isn't only the child with autism or the parents that are affected, it's also the siblings---the impact on them in huge, and often not recognized. I've read a lot of books in the "I saved my autistic child" genre, and I've noticed so often how siblings, if there are any, become a side note---sometimes a word of regret that "they had to raise themselves" or a note along the lines of "they were a huge help". That bothers me.

I got thinking about this issue this morning. Freddy is in an improv troupe, and they have two shows today, one at 3 and one at 7. William will babysit so Tony and I can go to the 7 show (last time we did that, I realized it was the first time in literally probably a decade we had gone out together at night alone other than for a quick dinner) but no-one can go to the 3 show. I wish I could---each show is different as it's improv. But it's not possible. One of us has to work, in order to keep up the level of basic food and clothing and heat needs we've become so attached to, and one of us has to take care of Janey. There is no way I could take Janey with me to the show, as one might be able to take some six year olds. I told Freddy I was sorry, but I realized even saying that that for a teenager, not having parents around for every show was probably not the end of the world, and he indicated that. To some extent, I think it's good for kids to have some independence and self-sufficiency fairly early, but I wish it was a choice I could make, not something forced onto him.

And that's just a tiny bit of the ways the boys lives are affected. We don't eat out as a family, we don't go to movies or public events or trips as a family. We can't. Everything we do, every action, is affected by what Janey can tolerate. We have a Netflix movies that we've been wanting to see for a month now, but Janey hasn't been sleeping early enough on weekend, so it goes unseen. And there's just the little moments---the boys are trying to tell me something about their day while Janey melts down, and they never finish the story.

And that's the short term part. The long term part is more. That's another place where so many books and articles leave me cold. It seems to be the thing to do to tell siblings that the autistic child is not their responsibility---that they are not going to have to be part of her life forever. That's just not true. Someday, although I don't like to think about it, Tony and I will be gone. Hopefully, my children will still be alive. And it's very likely Janey will still need someone to at the very least, help manage her life. At the most, she might need a place to live. And they are her family. Someday, she will be their responsibility. It's far in the future, but it's the truth, and I'm not going to lie to them about that.

So where's the good part for the boys? Well, as I've slowly figured out in life, it doesn't always work that way. You don't always get rewards for something tough you have to do. But I think in this case, there are a few good parts. Janey loves her brothers, and they love her. She responds to them in a way she does to almost no-one else. Because by necessity, we are focused on home, because that's where Janey does best, we as parents are not out living our own lives much, and so we are here to care for them. I don't work outside the home, which I hope has been good for them. I think they are learning to care for others, and to see a family as a unit. They have a lot of freedom for kids their age, not freedom to just come and go as they please, but freedom to do age-appropriate things without parents interfering unduly, and I believe that's a good thing for teens. Mostly, I hope they know they are a vital part of the team. I think they are learning young that they are needed and appreciated---that we couldn't do it without them. I hope they know that. I love those guys so much.