Children With Disabilities: Understanding Sibling Issues

Let the Good Times Roll

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National Information Center
for Children and Youth with Disabilities

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If you're sitting there wondering how much damage it's going to do your other children to (a) keep your handicapped child at home or (b) send him to another home, I can clear that right up for you.

See, they did a study several years ago. In Psychology Today, they published the results: "How Siblings of the Mentally Retarded Are Affected."

Naturally, I ran to get my copy to see how I'd been affected, growing up with a sister with mental retardation. Was I damaged, having her like that? Was I enriched? I frantically thumbed through the article.

Are you ready?

Half and half. Half the siblings were somewhat the less for having been around mental retardation. The other half were somewhat more.

I almost threw the thing away. Now what help is that?

As I went over my own life and how I cope in the world today, I had to see that this half-and-half thing is about all you can say about it. I feel, in my own life, half damaged, half enriched by having a sister with retardation.

But, carrying the notion a step further, look at your own life, the things that happen to you in it, the people you lived with. Don't you feel half damaged, half enriched by EVERYTHING?

Well, then.

See, I've come to the conclusion that it doesn't matter whether you keep your retarded child home with your normal children. I mean, in the long run, whichever you choose will not make or break your normal or retarded child.

If you keep the child at home for as long as you do your normal children, your normal children will be sometimes embarrassed in the neighborhood. I was embarrassed in the neighborhood when people called my sister a dummy.

On the other hand, I learned how to press through embarrassment, and I can now climb up on the stage and perform and make speeches and sing and dance because I long ago got over being embarrassed.

If your normal children are exposed to a retarded brother or sister, they will learn patience and compassion. I learned patience and compassion living with my sister. On the other hand, I learned to feel guilty whenever I got mad at her, so I have had to learn how to deal with excess guilt.

If you send your retarded child to another place to live, your normal children will always worry about the brother or sister that got sent away. I worried about my sister when she got sent away for a while. But, on the other hand, I finally got more of my parents' attention when I was with them, and I liked that. Do you see how we can go on like this all day?

I can give you the flip side of every argument for keeping or for sending away that you want to drum up. They're endless circles. Forget it. Do what is going to make you -- you, the mother, and you, the father -- the most comfortable. And know that you can always change your mind.

When my sister throws a tantrum and kicks walls in, I want to beat her up. When my sister comes up behind me and hands me my purse that I left on the counter while shopping, I want to hug her. When we go shopping together, she has me help her count out the money, which she is no good at; then I have her help me find where I parked the car, which I am no good at. We've learned what we can contribute to each other. We learned when to stay out of each other's way.

My parents kept my sister at home until she was in her teens. Then she went to boarding school in California for eight years. She is now in a private apartment with a hired companion trained in behavior modification. She has lost weight (she used to be very fat) and is learning to play a guitar and cook. She seems much more at peace with herself as she gets older. I have her over for dinner with my family sometimes; other times I have her come on a vacation with just me.

Our life together as sisters six years apart (I am older) was a lot less traumatic than outsiders would imagine. In fact, I got so used to my sister exactly the way she is that it always surprised me when people discovered that she is handicapped. They would get a look of tragedy on their faces, and then I would try to match the mood; but unless someone actually dramatized the discovery, I just accepted it as a fact, like the sun coming up in the morning.

My parents made it that way. They must have had some pain and tears, but what I seem to remember are the "normal" times -- going out together for dinner, going on trips, riding along the canal in Venice (my sister singing along with the boatman), learning to ice skate and swim (she only a little slower than I).

It's as if they were saying, "This is your sister Irene. She was injured at birth. She will have a much harder time learning everything than you do. She may never read or write. She loves sports, gourmet food, and sewing. She hates dull movies, blouses with monograms, and large drooling dogs that jump on her. You, too, have likes and dislikes. You are individuals with different likes and abilities but with the same rights and purposes on this earth. Let the good times roll."

And we did.

If I have any advice, looking back on my years in our family, I would say that it's important to let your normal children know that it's okay to get angry with the handicapped brother or sister. Whether or not my parents meant to give me this notion, I had it. I felt guilty about ever getting angry with Irene. If they had known my guilt, they would have taken steps to help me get my anger out when, for example, she wrote with lipstick all over my dolls.

I realized this habit of mine the day she was expelled (for her tantrums) from the group home I had worked so hard to establish. Our parents were out of the country at the time, and it fell to me to help her move out and back home again. We climbed into my car, and I let loose with a tantrum the likes of which Irene herself has never produced. I yelled at her about her behavior and how she had to learn to control herself, and I found myself shaking with rage and screaming. Two things happened. I realized that for the first time in my life I had given myself permission to be angry with her (I suppose that my mind had to wait until my parents were clear across the ocean!), and at that moment she was reaping thirty-odd years of pent-up rage -- not just today's grievance. And -- this is the kicker -- I stopped in mid-sentence screaming and looked at her. She was observing this wild fit I was having, absolutely amazed that I too was capable of it -- and we started to laugh. We concluded that perhaps she needs to cool it a bit, but perhaps too I should have had the right to a few more tantrums.

My parents are not to blame for my guilt. Perhaps no matter what they did, you see, I would have decided to feel guilty about any angry feelings toward Irene.

So I think all you can do as a parent is to give permission for the anger to show itself when it's there. The rest is up to the sibling, and no matter how you try to take the blame for everything, you just can't engineer your children's lives and feelings. I know. I've tried it with my own normal teenagers. They won't be engineered. All we can do is share our experiences in life with our family members, affirm their rights to love and hate and fun and anger and frustration and growth and pain, and then relax. Let the good times roll. And they will, quite often. If we let them.