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Tuesday, September 4, 2012

The Toll on Siblings

I read an article yesterday from The Washington Post about siblings of children with autism (you can read it here), and I was struck by the honesty of the opening section--- a sibling recalling one of the tough moments of life with an autistic brother, and then trying to write the inverse, one of the good moments, and not being able to think of one. That's brave. I think the media subscribes to the same mentally that is taught to us as kids---if something is very tough, you will get rewarded for it. You'll be better off in the long run for having endured it. There are all kinds of hidden compensations. Welcome to Holland for kids. And that's not necessarily the case.

I'll start by saying I do think in some ways, my boys have been enriched by having Janey as a sister. They certainly have compassion for the less able, they have learned responsibility, they feel needed as part of the family unit. And there are those once in a while moments, which they express by taking Tony's and me phrase "Janey's being precious!" They appreciate it when she's being adorable or funny.

But overall, I have to be honest and say that that negatives outweigh the positives. We don't have a normal family life. We can rarely have family outings. We next to never eat out as a family, and we NEVER go as a family to movies, or other such public events. Every single plan must include figuring out what we will do with Janey---can she tolerate it for a few minutes? Who will watch her? Our time is hugely taken up by her. Countless times, the boys need Tony's or my attention and don't get it, or get us saying "Wait till Janey's asleep" They are often called upon to keep an eye on Janey, which is not a casual task---it takes them away from homework, talking with friends, pursuing hobbies. If it's for any extended time, we pay them, but the pay is low for how tough a job it is. We can never, never count on a relaxed family time. It's always dependent on Janey's mood. Our money is limited by the fact one parent must always be there for Janey. There is not a single aspect of our lives that are not affected by Janey's needs.

The article tries to be positive. It says studies show siblings do better in certain situations---in two parent families, when the autistic child is higher functioning or the oldest child, when the family has more money. Those all seem like common sense. I cannot even picture the life of a single parent with an autistic child and a sibling. More money, like it or not, can make almost anything easier. But overall, the article has to admit it's not a Welcome to Holland reality for the sisters and brothers.

And then there's what is hardest to face. Some day, Janey will be William and Freddy's responsibility. They will be responsible at least for making decisions about her, and at most, she might live with them. That's not something I'm forcing on them, that's reality. It's the unspoken truth for many families with a disabled child. They didn't sign up for this. Tony and I did, by having a child. Every time you have a child, you are signing up for whatever you get. I do believe that. It doesn't mean I am going to always be positive about it all, or not rant at times about how unfair it all is. But we chose to have a third child, and she is ours. The boys didn't have a choice.

I wish I had a feel-good conclusion here. I don't. What I am left with is reality. As much as we might believe in the fairy tale idea that it all balances out, that we are all rewarded for our hardships, that we in Holland just are on a different but equal vacation, when it comes to siblings, I don't think that is the case. So I'll just say thanks to William and Freddy. They are amazing boys, incredible boys, doing a wonderful job in life. They are great brothers to Janey. I can't promise them riches or rewards due to that, but I can thank them with all my heart.

1 comment:

Jess said...

Wow, great post. I really appreciate your thoughtful honesty about your struggles. I struggle a lot with my step-daughter's disability and it's very difficult to find blogs who discuss the hard issues that come with disabilities such as what you have discussed.

I don't think your post ended too negatively at all. It was very real and heartfelt. I think you have a great mixture of what you enjoy and what you struggle with in your posts.