Magazine article The Exceptional Parent

Differences in Common: Straight Talk on Mental Retardation, Down Syndrome and Life

Magazine article The Exceptional Parent

Differences in Common: Straight Talk on Mental Retardation, Down Syndrome and Life

Article excerpt

When Ben was an infant and I was still pretty wounded, I made a strange kind of bargain with myself. I decided that if only he could look at me someday and call me "Mommy" or "Mama," I could endure the fact that he was retarded. It was very important to me to hold the hope that he would have the ability to at least do that--identify me as his mother just the way his brother and sisters had done. And for some reason, focusing on this hope helped me to take my mind off some of my other worries.

Of course, there were a lot of other things I'd hoped Ben would do as well, but in those early weeks I was feeling awfully desolate about the future, not to mention scared and confused. I knew even then that kids with Down syndrome were able to do more than wave bye-bye and say "Mama." That is, I knew it in my head. But in my heart I was so fearful of that uncertain future. I guess, too, I was grieving for the baby who never came -- that bright, beautiful baby who would do everything ahead of schedule and whose future would be one of endless, unlimited opportunities.

In retrospect, I suppose I was feeling sorry for myself. Certainly no one had painted a dreadfully bleak picture for us as has sometimes happened to other parents. No one had so much as hinted that Ben would be little more than a vegetable and we would serve our family best by sending him away.

No, this forlorn wish was something I came up with all on my own in the dark of night when I lay awake wondering what was going to happen to this changeling baby of ours, and the rest of us too.

Many parents have had similar fears. Will our baby smile? Will our baby walk? How about talking? What about learning? Will our baby be capable of truly learning? Will he be able to think -- actually use his brain to think?

And is there any way to know all this ahead of time?

Although there are no guaranteed answers for any child, for the most part, these questions can be answered with a resounding yes! Still, parents wonder and worry, and no matter how many reassurances they may have from others -- even doctors and experienced parents -- that nagging doubt is there.

Your child grows,and he does learn to smile, and sit up, and wave bye-bye, and say "Mommy," and a whole lot more. You begin a feel better; you can see for yourself that he is doing things, reaching milestones, "progressing nicely," as the experts might say.

Yet, you find yourself waiting for something -- you don't even know what -- something that will enable you to set your doubts aside once and for all, find a reality you know you can more than cope with.

One morning when Ben was barely past two, he toddled into the kitchen and found me sweeping the floor. He observed me for a moment and I saw him glance around the room. Then he toddled over to the kitchen closet, opened the door, reached in to pull out the dust pan, and brought it to me. Next he bent down and held it near the broom. I was dumbfounded, and then oh, how I wanted to pick him up, dust pan, broom, and all, and go dancing around the kitchen! (I guess this would be called a "Broom Dance.") That's what I wanted to do, but I didn't. Instead I carefully swept debris into the dust pan as he held it for me. I knew it was very important to let him follow through on his actions. We could dance later!

I doubt that parents who have only normal children would have greeted Ben's efforts with anything more than an "Oh, isn't that cute! …

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