The Long Haul

Today I read an article by Kym Grosso about her son who was asking if she wanted to “erase” his Asperger’s. I remembered a similar conversation with my own son who has an undetermined disability that affects him globally. His head shakes in a constant “no” and he can’t pick up his feet anymore. He struggles to walk and frequently falls even though he uses a walker. We had found an article in the newspaper about a 5 year old boy whose disability was very much like his at that age. I called the doctor from Kentucky who was managing the case through a treating doctor near us. She was definite–it certainly could be the same thing, or something similar, that was a metabolic disorder. If she could to discover this, perhaps a change in diet and supplements would be all he needs.

To this point, my son had only been treated by neurologists who had never mentioned a word about the possibility of metabolism disorders. Toxins created by metabolism disorders can poison the brain and cause a myriad of neurological symptoms–so why didn’t they mention that if they couldn’t solve the problems? We’ll never know, but I’m fairly certain it may involve time, which they don’t want to give useless cases…and profit, which they don’t get if they refer away.

The conversation yielded this. “Mom, I’ve never been normal and I don’t know how to live that way. It’s too scary. I can’t do that.” SHOCK! Why would anyone want to remain in his position? Because the fear of the unknown is greater than the fear of what is known. “I know how to be the way I am, and it’s okay.”

Children with disabilities don’t know what it is to be “normal” in our sense of normal. The way they are is their normal. As parents, we have to get used to that. When we want to teach them to do things, we want to teach then OUR way. When they can’t do it our way, we chafe and itch to guide them in our path. If they can’t do it our way, we label them disabled.

But think now. What if we let them know what needs to be done and leave them to discover how they will do it?  We will get a competent result. Each child will find out how HE must do something or he will discover he needs help to do it. Our job then is to help build the assistive teamwork around that child so he can discover how he does everything everyone else does, right up to when he has to ask for help to get it done. When is the last time you built the car you drive? Point. A child who can’t write his own homework can become a competent dictator. A child who can’t iron can trade what he can do for what he needs.

So here’s the point. Get out of the driver’s seat of your child’s “car.” Let your child suffer failure and discover it doesn’t kill, that in fact, a little failure creates greater pride when success comes, greater strength and resilience come in, and your child will find he is more willing and able to tackle new tasks because he knows he can find success. That is the attitude that will lead him to greater independence for the rest of his life.

The point for us as parents is this–we have accepted our child for what he is and who he is…without trying to force him into our mold of “normal.”

If you’re hoping your child will develop independence as an adult, he MUST fail sometimes as a child. Help your child fail with support so he knows failure is an acceptable part of growing and learning. He’ll thank you for it someday.


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