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The other side of the story.


When my son was born six years ago, I began reading everything I could find about Down syndrome in order to better understand his life just beginning and to prepare for the quest ahead. Along with informational books and articles about mental retardation, I read many success stories of children who, despite their disabilities, learned to read, learned to play the piano, rode bicycles and even married and lived independently. In short, they proved themselves capable of doing many of the same things that "normal" people do. These stories gave me hope. If these children could excel, why couldn't my son?


Most parents who unexpectedly give birth to a child who is mentally retarded are said to follow a classic pattern of denial, grief, mourning and gradual acceptance of their child. Knowing of these successes made this process easier for me to work my way through; I clung to them as proof that I could meet the challenge ahead. In reality, however, they caused, for me, the postponement of facing the inevitable. I allowed them to dissillusion me into believing my son would be someone he is simply not capable of being.

I read these success stories at the same time I was absorbing information that stressed the value of early intervention and infant stimulation. I studied the charts that showed the differences in development between children who received early stimulation and those who did not. Quite naturally, I made a connection between the facts before me and the success stories I had read. I thought that if I did everything according to the prescribed "recipe," perhaps my son would indeed be one of the children who excels, who achieves more than anticipated, who defies the stereotype.

We set up a rigorous daily routine for Darwin and followed it diligently. We enrolled him in an infant stimulation class; we arranged speech therapy for him; and we hired special education college students to work with him when we could not. We studied educational toy catalogs in search of materials to help promote his development. And, while we tried out new ideas to stimulate him, we searched for more.

During an infant's first few months of life his gross motor development is the most obvious area of progress. Darwin's gross motor development has always been his strongest asset. He sat up and rolled over within the normal time frame. His progress in this area gave me further confidence that we were indeed doing the right stimulation activities and seeing the results for which we had hoped.

It was only when early signs of cognitive development, such as curiosity and attempts at speech, failed to appear that I began to wonder about Darwin and have doubts. Why did he avoid eye contact? Why didn't he show signs of recognizing me until he was more than a year old? Why didn't he respond to his name until he was more than two years old? Why did he seem to know something one day and then forget it the next? Were our efforts really working?


Each time Darwin was tested at his developmental preschool I anxiously hoped he would perform at his best. Each time the results of the tests showed that the gap between normal development and Darwin's was widening, especially in the area of communication, although he continued to show steady progress in gross motor skills. I couldn't help but notice that many of the children with disabilities in Darwin's classroom, whom he had bypassed in gross motor development earlier in life, now accelerated past him in tasks requiring cognitive skills. I knew that many of these children's parents did not work with their sons and daughters nearly as much as we had worked with Darwin. What was wrong?

It was not really until our second son was born three years after Darwin that I was able to closely observe a child's normal developmental pattern and realize (and admit to myself) that Darwin's capabilities were limited and that he was probably doing the best he could with the potential he had. This was further verified on his fifth birthday when he underwent a series of extensive tests to determine his placement in the public school system. The tests showed that Darwin had slipped from a classification of "moderately" retarded to a "moderate to severe" category between his fourth and fifth birthdays. His IQ was estimated at 25 to 35. I remember staring at the word "SEVERE" during the post-test conference and feeling dejected at the realities for the future that word implied. But later, driving home, I cheered myself with the realization that Darwin was indeed an overachiever. Anyone with an IQ of 30 who had a 20-word vocabulary was indeed doing remarkably well, given his limitations!

Hindsight is always wonderfully acute, but given the same situation to live again, I don't think our stimulation program would have been any less thorough or intense. At birth, Darwin's developmental capabilities were a question mark. Not knowing the extent of his abilities, we had to try every method possible to stimulate his growth. Frankly we wonder what he would be like today had we not given him such intensive stimulation at the start. In retrospect, I only wish I had not developed premature expectations from those success stories. I wish I could have viewed Darwin as a "blank slate" instead of already picturing him as a "Super Down's Child."

Darwin is the flip side of the coin, the unsung song, the other side of the story that is seldom heard. Darwin is the child who received all the stimulation as an infant that he could absorb, who was given every educational benefit his parents could find and afford on a limited budget and who has received loving attention and warm security all of his life. Yet because of his limitations, Darwin remains at the low end of the spectrum of achievement.

Those success stories I once devoured with expectant fervor, I now view in a different light. When well-meaning friends tell me they saw a Down syndrome child playing the piano on television or starring in a movie, I just nod politely. When I meet new people and happen to mention Darwin's disability, I find they often mention these success stories. Perhaps they're trying to make me feel better about my son, perhaps they're covering the awkwardness that sometimes accompanies the news of a disability, or perhaps that stereotypic success story is all they have seen or heard about children with disabilities.

I find nothing wrong with publicizing a child with mental retardation who can play a violin or pole vault or talk with the aid of a computer. This kind of exposure has greatly helped the general population to view the community of individuals who are mentally retarded in a more favorable and accepting light. But there is something wrong, it appears to me, when this side of the story is the only one that receives attention, especially from the media. It gives thousands of people a rather distorted and unrealistic view of mental retardation. It also, perhaps, gives new parents--like me six years ago--false expectations.


Where is the other side of the story? Where is the child who celebrates his sixth birthday in diapers? Where is the child who frequently awakens at 2:30 a.m. and proclaims it "morning" for the entire family? Where is the child who tries to flush his beach ball down the toilet? Where is the child who turns on the kitchen faucet and gleefully sprays water everywhere or attacks lamps or pulls pictures off the wall when someone isn't watching him closely? Where is the child who cries in frustration because he cannot communicate his wants? Where is the child who only giggles when he is told "no"? Where is the child who will never read a book, play a violin or pole vault?

Right here. He lives in my house. And your house. And in thousands of houses of exceptional children and their parents and their siblings all over the world. He's the other side of the story--the one who will never make it to the Today show or the front cover of Newsweek. He's the little boy whose slightest signs of progress are cheered as major accomplishments. He's the little boy who tries our patience to the limit and then melts our frustration with hugs. He's not the little boy we anticipated when we read those success stories. It doesn't mean we love him any less. We have just had to alter our expectations to fit his capabilities and learn to appreciate "the other side of the story" for what he is.

We have "accepted" Darwin twice in our lives--initially when we had the shock of learning that our son had an extra chromosome, and secondly when we realized the realities of his limited abilities and began absorbing them into our family life as smoothly as we could.


What Darwin doesn't have in mental ability he does have in what I call "character." He is spunky, highly exploratory and very sneaky. He's the champion of the just-baked oatmeal-raisin cookie thieves in our house, and he has perfected the technique with much practice. Darwin delights in the simple pleasures of life, and when I think of him, I usually visualize a stocky little chap laughing because he just got away with something else!

Am I envious of those children who have excelled beyond anyone's expectations? Admittedly, yes. In terms of mental progress, we have gotten very little return on our "investment" of time and energy to help Darwin learn. I would like to write in this article that my son can write his name, tie his shoe and sing "The Star Spangled Banner." But he cannot and probably never will. But that doesn't mean that his story--and the stories of many, many children like him--doesn't deserve to be told as well.

PHOTO : Darwin, seven, enjoys play time.
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Title Annotation:a mother accepts her child with Down's syndrome
Author:Carter, Susanne
Publication:The Exceptional Parent
Date:May 1, 1989
Previous Article:Death and Dying; A Guide for Staff Serving Adults with Mental Retardation.
Next Article:The Turtle: new wheelchair tracks on sand and snow.

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