Q and A:  Siblings

Question 4:  I have a three-year-old son, Charles, who has cerebral palsy. He has seizures which are controlled by medication, and he is extremely impaired visually. He has made lots of progress, and he will always need lots of additional attention.

We have a long story like most parents who ask your advice. I have another child,William, who will soon be 2. They are about 15 months apart. I want to make the best life possible for both of them. Are there special things we as parents can do to make William’s life special too? I love both of my children dearly, but Charles has this huge portion of my heart. I guess it’s because he needs me so much. Sometimes I feel like I do not have as much patience or love with William. I do not want to leave him without the special things a mother can give. I do love him equally - just different. Is this normal for a mother in my situation?

Response:

It is normal, but that doesn't mean it is comfortable. It is healthy that you are questioning yourself about this difficult issue. By questioning it now you can avoid deep regrets later. You're right in observing that we all have a long story and no two situations are alike. Regrets are usually about things we did not do. One of the lessons that children with special needs teach us as parents is how to love from the depth of our hearts without respect to what we are getting back. I have had both mothers and fathers tell me that they wish they could love their so-called "normal" children just as deeply.

 

What I often say to parents in your situation and imagine life from the point of view of your atypical child. What would you want from your mom and dad if you lived life in the family from that perspective. In my book, "Special Children, Challenged Parents", I asked this question to a group of parents. Here were some of their responses:

----"So much gets taken for granted when you're normal. As parents we make such a big deal out of the accomplishments of our special child. If I was a sibling, I would really resent it if my parents didn't notice my struggles and accomplishments."

----"I would want to be treated as an individual, and I would absolutely hate it if my parents always reminded me how lucky I was. That would drive me up the wall."

----"I would want information about the disability. I'm sure I would have a lot of questions, and I would want answers."

----"I would want a normal family life. That would mean doing things together as a family as well as time alone with my parents to do things or just talk."

----"That makes me think that I would want my parents to be concerned about my feelings. I would want them to ask me how I felt."

Perhaps you and other readers have other thoughts as well. When I ask siblings of children with disabilities the same question about what is important to them, I get similar responses. I also strongly recommend Mary McHugh's book, "Special Siblings: Growing Up With Someone With a Disability". Mary grew up with a brother who has mental retardation, and she does a great job of relating her own experiences as well as the many siblings she interviewed for the book.

Parenting any child is a lifelong journey. Keep asking questions. As your children get older they can tell you what they need and want. You'll keep finding answers. You and your children will benefit.