Raising a disabled child has to be one of the most difficult struggles a person can ever face. But having a sibling who is disabled can be equally challenging and painful.
Growing up with a sister or brother with physical or mental issues can cause a lifetime of frustration, fear, guilt and anger. But with support of family and the community, the typical child can learn to cope and even thrive.
First off, parents need to “break the news” to the typical child at the right time and the right way — although, at a fairly young age, they will start to sense that their sibling is different than other kids. They need to know that there are thousands of kids in their situation and that it’s not the end of the world. Sometimes you come out a stronger and better person.
Regardless, there will be lots of disappointments and hurdles for the other children in the family. There will be embarrassments at public places or in front of friends when their sibling has a meltdown or acts inappropriately. There will be limitations on the things that the family can do and places they can go. There will be jealousy over why the other child gets more of mom and dad’s attention. At times they may be overcome with guilt, because they resent their sibling for putting a strain on the family. And they will envy other kids whose carefree childhoods aren’t overshadowed by living with a disabled family member.
And many times, the typical sibling will blurt out a typical child’s response: “It’s not fair.” But, with the proper guidance, they can learn that even though sometimes life really isn’t fair, we have to make the best of what life has given us.
My 10-year-old daughter Julie is considered moderately to severely autistic. Her twin sister Sarah began to struggle with this revelation when she was about 6-years-old.
Two years ago, they started attending the same school. Sarah was afraid of her sister being picked on, or even worse, that her sister would embarrass her in front of her friends. But sensitivity training at school has been helpful. Now that there are more and more special needs kids attending mainstream schools, some have created a program where a social worker speaks to each class about accepting and embracing these special schoolmates.
The most painful aspect of our situation is that most kids with autism don’t want any kind of relationship with other kids, which includes their own siblings. In a sense, the typical sibling often feels the loneliness of being an only child, even though they aren’t. No matter how hard you try to explain that it’s not personal, they can’t help but take it very personally. Sarah has come to me crying many times, saying, “Why doesn’t my own sister love me?” As a parent, all you can do is keep reminding your children that this disability prevents them from showing love in the usual fashion, but they do care in their own special way.
Whenever Sarah talks about all the things Julie can’t do, I try to cheer her up by talking about the things she can do — all the ways that Julie enriches our lives. A couple of years ago, when Sarah was feeling especially down, we had one of those talks. Suddenly, I came up with an idea. I bought her a book where she could write down all the positive things about her sister. Whenever Julie would do something funny or smart or helpful, Sarah would jot it down. We dubbed it “Julie’s Journal.” Now, whenever Sarah has a rough day with her sister, we break out the journal. As she thumbs through the pages, her mood brightens a bit. It’s a reminder that even though having a disabled sister is very difficult, these siblings can enhance our lives with wonderful little moments.
There are a few organizations that offer sibling support groups. But with so many disabled people in Nassau County and the rate of autism constantly on the rise, it would be helpful if there were more of these groups, in schools and in the community. No matter how many books your typical child reads on the subject, how many pep talks a parent gives or how many sessions they have with a therapist, there’s nothing like spending time with other kids who are in the same boat. That’s when they realize that they are not alone and some coping skills can begin to form.
Woodmere resident Allison Howe is an assistant editor of Able Newspaper, which covers the disabled community, and a mother of two children with disabilities.