I went to St. Andrews College which was built for students with various disabilities. There were many students there that were paralyzed from the waist down from water skiing accidents or jumping trains. There were paraplegics, quadriplegics, and students with neuromuscular disorders. They were an amazing group of individuals who maintained their wild spirit while confined to a wheel chair with courage, dignity and the continual pursuit for independence.
There was one new student that stood out. He was a freshman, paralyzed from the waist down. The difference was that he was always asking for help. At the cafeteria, he would ask someone to get his silverware or reach out and grab him a dessert. From what I could see, students were happy to help, for awhile. But, after a few weeks, I heard comments like, “get it yourself”, or “you can reach it.” We all found his behavior very irritating because he was there to go to college as an independent person.
That student didn’t return after that first semester. It was the first time I encountered “learned helplessness” as Debbie Pincus refers to it in her article: Learned Helplessness: Are You Doing Too Much for Your Child?
If you’re doing too much for your child, you will eventually feel burned out and put upon. You can determine if you are an over-functioner if you tend to move in quickly with advice, think you know what’s best, not only for yourself but for others, have a low threshold for your child’s pain and don’t allow him to struggle with his own problems.
As the parent of a child with a disability, it is even harder to allow them to feel pain, fail, or suffer natural consequences. They may suffer from isolation, being bullied, or left out of school functions. You may think, “Don’t they endure enough difficulties in their life? How can I add to it by setting up limits and rules?”
The truth is they may need those limits even more than other children. There seems to be a universal sense of guilt when you encounter someone with any type of disorder. We often feel the need to help, protect, or make things easier for them. However, the most responsible thing you can to do is problem solve with them so they can take care of their own needs and become more independent.
When my daughter was four years old, we went to a family reunion. There was a rock face that all the kids were climbing up and down on. My daughter had muscular dystrophy and couldn’t walk well and couldn’t run at all. I let her climb. My Aunt, who was sitting next to me, berated me for allowing her to do something so dangerous. She said it was irresponsible. I remember replying that I’d rather have her take a small risk and possibly get a scraped knee than mentally handicap her at this age by telling her she couldn’t play with the other kids because of her disability. I did not want her to start experiencing limitations. My Aunt didn’t know how to respond. So, I kept my eyes on my plate, my heart in my throat and waited. I will say my daughter was very smart. She did a great job and was so proud of herself! When she was a little older we took a vacation in Utah where she became a very agile and fearless rock climber. My heart is often still in my throat, but as she grew, I knew she was the best one to judge what she could or couldn’t do.
Obviously kids need to take chances with safe limits in place., We don’t advocate putting your child in danger. The final decision is always up to the parents who are the experts on their children and their abilities. The point is children with disabilities need discipline and limits maybe even more than their peers. They need to be comfortable enough in their own skin to navigate socially, through school, careers, and families. They may need additional help with manners, how to get along with people, communicate and most of all, how to be independent. As parents, that is where we can do the most for them.