Sometimes Competitors and Sometimes Collaborators

It’s not easy to adjust to finding out your child has a disability. It’s a grieving process and it can be very difficult for parents.

I think it’s harder on brothers and sisters. Or at least it was for Matthew’s Sister, Elisabeth.

I was always conscious of the situation and tried to help Elisabeth understand but it was hard. I didn’t understand what was happening with Matthew and to our Family a lot of the time so trying to explain it to Elisabeth was nearly impossible.

My point of view however, was on how hard it was for me to help her instead of on how hard it was for her.

Until the day I heard her introduce one of her friends to Matthew -

“This is my brother, he’s weird.”

I don’t remember who the friend was or even how I reacted but I can still hear the words in my head.

And it hit me – she, like me, was simply trying to make sense of the situation and her place in it. The difference was, and is, that I chose to have children. I knew the possible risks but I still chose it. And I have never regretted it or doubted that my kids are the best part of me.

Elisabeth however, was not consulted on becoming a sibling period, much less a sister to a developmentally disabled brother. This has happened to her and she truly has, without much help from me (although I tried) made the best of it.

A few years after that introduction I think she had an Aha! moment. She was a high school freshman and we were at a fundraiser. She and her friends were waiting around outside for the event to end so they could get in and do the clean up. I was waiting with them and trying to keep Matthew occupied and calm. They started playing hide and seek and before I knew it they had included Matthew. He didn’t know how to play but he was clearly having a ball and enjoying being included. And they were enjoying him, too. He’s only 16 months younger than Elisabeth so he “looks” like them but he acts like a little brother. They didn’t question his behavior and they didn’t judge him. Some of them had met him before but most of them hadn’t. They just gathered him in. They accepted him. And Elisabeth suddenly felt accepted not in spite of her bother but actually because of him.

I am convinced that she started seeing him differently that day. She started to see him for who he is and not for how she is because of him.

I knew she would be OK the day she came with me to one of his track meets. In spite of their ages there were two school years between them and they went to different high schools. Matthew’s 1st track season after Elisabeth had graduated she came with me to help with the timing. In the past if she had been at one of his meets she was also competing for her school so she didn’t really get to watch him or see him with his teammates. He was a popular kid. Popular sometimes the way a puppy is and popular sometimes because he’s just a great guy. Or as he would say, “Mom, I’m famous!”

Elisabeth was genuinely surprised at this popularity. And no one can ever accuse me of being overprotective of Matthew again – not after seeing his sister in action!

See, the girls on Matthew’s team really like him. He is thrilled when they high five him and he loves to cheer them on. They love to cheer for him too.They like him because he is real. He is genuine. And he doesn’t expect anything from them. If people like him, that’s great. But if they don’t, well that’s OK with him too. That kind of attitude is magnetic.

For three hours Elisabeth drove me crazy with, “Mom, who is that girl? Is she nice?” or “Mom, that girl just hugged Matthew. We need to watch her!” I assured her that Matthew’s virtue was safe. Not only would those girls never take advantage of Matthew but the boys had his back too and no kids from the other schools were going to hurt Matthew.

Yep, Elisabeth has some childhood experiences that are different from most of her friends. They were challenging and frustrating and even hurtful at times. But they have shaped her into the person she is today. And you know what? That’s not a bad thing!

Check out this article on NPR.org for a sibling’s point of view.

And this book looks interesting too:

What About Me? Growing Up with a Developmentally Disabled Sibling.

UPDATE: And check out Caroline McGraw’s blog – A Wish Come Clear and our interview for some more sibling insights.