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

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!" But parents of children with mental retardation have a different perspective. This was a true epiphany for me.

What Ben had done was not just something "cute" in passing. What Ben had done was to observe -- to remember -- to anticipate -- to put it all together -- and then act upon it. This was thinking. On that particular day, it finally jelled for me. Beyond any doubt my little boy could think!

Now Ben had certainly given evidence of thought before. I could hardly discount the night I went into his room to check on him and found that he had unscrewed his bottle top -- those little fingers were more dexterous than I knew -- and poured milk all over his head, not to mention his pajamas and bedding. (I guess I should have believed him when he said "No!" to his bottle.) And the way he pouted at stranger, but would blow kisses to those he knew and loved, showed his ability to discriminate. Or when he realized that sliding down the stairs on his bottom was a whole lot faster than walking down one step at a time. Not to forget either his discovery that if you caught the cat by her tail, she had a harder time getting away, but that she might also turn and bite you!

Oh, Ben had a lot of things figured out, but there was something different about his bringing me the dust pan. Perhaps it was because his actions didn't really pertain just to him, or because it was a serious of actions -- remembered, perceived, and anticipated -- that he had to match up, or because he showed for the first time that he was a little kid who could see a chance to help his mother and knew how to go about doing it. In any event, what he did was pretty sophisticated for a two-year-old, if you think about it.

When we were through sweeping, I carried the dust pan to the trash container and let Ben help me empty it and then I handed to to him. He went immediately to the closet and put the pan inside, up against the wall where I always kept it. He gave me a look and said, "Broom!" I realized he was waiting for me to bring him the broom, so I took it to him and let him help me stash it in the closet, too. He grinned at me with the satisfaction of someone who had done a really good job.

A burden was lifted from me that day. I was not so unrealistic as to believe Ben woudl grow up to be a nuclear physicist or a Rhodes Scholar, or enter a profession that requires exceptional brain power. That wasn't the issue; it never had been. The important fact here was the Ben could think. At two years plus a couple of months, he was using his mind!

I wish I could tell you that when Ben grew up, he was always so eager to help, he maintained his desired to clean up the kitchen (and even his room), and he had enough "smarts" to make it in this world on his own. He didn't, of course, but then there are many of us who are not always particularly helpful, neat, or self-sufficient.

What I can tell you is that Ben has accomplished what we came to expect of him and more -- not at genius level, I grant you, but again, I never asked for that. All I asked for was to know -- somehow -- whether or not we had a child who could think, who would be able to appreciate, albeit in some ways limited, joys of the cognizant mind.

On a long-ago day I got my answer from a little boy who brought me a dust pan. His seemingly simple action seemed to me to be a promise of good things to come. And he has kept that promise.
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Title Annotation:excerpt
Author:Trainer, Marilyn
Publication:The Exceptional Parent
Date:Oct 1, 1991
Previous Article:Technology is not magic.
Next Article:9th annual computer technology directory: 1992.

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