During our long car ride back to Canada this summer we would occasionally run through the various local radio stations in an attempt to find something that reflected the area we were in. Just as we were approaching Chicago, I settled on a clear signal that ended up being NPR. Moments after tuning in the announcer introduced a story that was submitted by a mother of a girl with Down Syndrome. Everyone in the car listened.
I have tried a number of times to find this same story in the NPR archives for June 28th, but I have come up with nothing and am unable to link to the original audio. I will have to summarize for you.
***Thanks to Sharon, who remembered the same radio program and pointed me in the right direction. This American Life featured this story as Act 3 of their Social Engineering topic on June 27/08.***
The story began with a mom retelling her heartbreak at learning her daughter had DS. It soon after jumped to an interesting quandary that arose while her daughter was in elementary school. Her daughter did not test as learning disabled. She was considered to be of low-average intelligence. This may sound like good news, but as a mom with a child with DS, I immediately recognized the problem. Without the designation of Developmentally Delayed, her child's support system would disappear. No more speech or physical therapy or other programs her daughter would still need to mature through her school years. The school principal gave the parents the choice of letting their daughter keep her DD diagnosis, or let them remove it. After much consideration they decided to keep the designation.
The mother now became philosophical and pondered her daughter's future. The closing paragraphs took place at a Sesame Street theater production that she brought her daughter to. The mother wonders aloud if her daughter is always going to be obsessed with Elmo and the gang. The mother then spots a shadowy silhouette through the bright theater lights and recognizes some of the tell tale signs of a person with DS. An adult person with DS. She then concludes that her daughter will never mature beyond her Sesame Street interests. That is where her story ended, with an abysmally negative outlook of her daughter's young life.
In our car, we were all quiet for a few moments. I broke the silence to say I could have reached through the radio and just shook that woman. How sad for that mother to be so limited in her thinking! I immediately thought of Will and all the places he has attended, like the numerous hockey games, his siblings activities, amusement parks, the airports, restaurants, movie theaters. In almost every circumstance we have met other people with DS. Some are adults, some are children, all are doing things that they enjoy. I also thought that if Will ever attended a children's program as an uncle one day, would people assume that the kids concert was his idea of fun? Ugh, how hopeless!
It made me so mad to hear this totally myopic story unwind to match all the inaccurate assumptions people make about people with DS. This girl's mom was placing those very labels on her own child!
I could only conclude that if this woman was so devoid of an imagination, then her daughter was, indeed, destined to be collecting Elmos and Cookie Monsters at 21, while the world went on without her.
Thank you to Sharon, who was on the ball and remembered this radio program as well. She directed me to the link above.
4 comments:
I'm slowly coming to realise the scope and breadth of DS. It is I suppose natural that I will grow with my knowledge as Jacob grows himself. I feel in many senses that we've been quite sheltered. The vast majority of people we interact with have a hugely practical and hands-on approach with the guy who just happens to be our third son. This is the case for our friends who have no direct experience of DS as well, so I feel blessed there. But also, as I said, sheltered and sometimes allowed to be naive, because that may not be the world at large. The few negative or ultra-pessimistic comments I have witnessed have stung. But I remind myself that, as with your lady here, there is a wide spectrum of people who have children with DS, and the limits of intelligence and imagination are not always with those who have Down syndrome. Interesting post, and thanks for collating your thoughts on it.
How sad - the mother's attitude. I have to agree with you. I look at K and see the many things that she has done. She goes with us on our adventures. Her passport had to have pages added to it. I look also at the things she is learning. She is learning to read and she just turned 4. She is learning Chinese. I realize that there are varying degrees of ability among DS people but I do think that a big factor is the attitude of those around the person. I want to be an encourager, enable, and even push so that she can achieve all that she can.
I agree with your analysis of how the program ended. But it still makes me sad for that woman to have to be the one to decide how to label her daughter for the school system. You're right about the services. Those services are likely part of the reason that her daughter was considered "borderline" intelligence.
Is it weird that I wouldn't mind the DD label? It's the MR one that I'm hesitant to "have to" stick on my kid.
And I agree about achievement being tied with expectation. That's with EVERY person. If your parents tell you you're stupid, what are you going to think of yourself?
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