02 Dec More thoughts on ‘cures’ for Down Syndrome
Pamela Wilson, Special Needs Children Editor of the Bella Online website, which bills itself as the second-largest women’s website in the world, offers a link to Down syndrome advocacy on Twitter, and further thoughts on our discussion of whether Down syndrome needs a “cure.”
We really don’t know what choices we would make if a safe, effective “cure” was developed for the range of intellectual disability found in most individuals with Down syndrome. Looking at the history of ‘treatments‘ for children with Down syndrome concocted in the past quarter of a century would make any parent hesitant to embrace a new version of what ‘scientists’ call a cure.
The thought of giving pharmaceuticals of any kind to newborns, young babies or children is distressing to most parents, especially since those being considered in current research are known to have serious side effects in teens and adults. Previous treatments with supplements considered helpful by sales representatives have not been shown to be effective. It’s likely that any “cure” will have one or two false starts — as one dad mentioned, these are probably the same folks who once thought LSD was a great treatment for people with schizophrenia. Most parents of individuals with Down syndrome do not share a culture of disability with their sons and daughters.
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I doubt that parents even agree on what the term “cure” means. My son has type one diabetes, and all the other families in our online support network know that insulin is not a cure. But it keeps our loved ones alive until the research we fund helps to find a cure, or several cures.
That being said, we do want the best opportunities and support for our sons and daughters as they are growing up and throughout their life spans. So far, the “side effects” of educational opportunity, inclusive education and supported living, being welcome and accepted in the mainstream of our communities, are all positives for everyone involved.
People with Down syndrome have the right to express their diversity just like everyone else. Who’s to say what will happen if research does develop a medication or treatment that “cures” the learning challenges of Down syndrome?
Maybe parents of mainstream kids would demand an opportunity for their average or gifted children to have an intellectual “boost” — once the concoction has been proved relatively safe for children with Down syndrome.
Our mainstream sons and daughters seem to feel alienated enough having to compare themselves to unrealistic images of perfection — and it seems as though we are looking to pharmaceuticals to “cure” what ails them, and us as parents, too.
Families of children with Down syndrome are as diverse as any other group. It is insulting to those whose quite wonderful children who have more intensive care needs to characterize them as more interested in a “cure” when they are often the strongest advocates we have for support and acceptance of all individuals with Down syndrome.
It’s equally as insensitive to suggest that families whose children have more options and greater achievements are more inclined to be wholly accepting of their sons and daughters. We all value our children with Down syndrome beyond everyone else’s expectations.
We each want our son or daughter to have the opportunities necessary to show us what their potential really is and who they were meant to be, decades before a possible “cure” is developed.
Those who have the hardest time caring for their children could have adequate community support right now, something a thousand times more likely than a cure but still much less likely than the status quo. We already know as much as we need to know to support families, to include and educate all our children. It’s just not as glamorous as research into some faraway pie in the sky.
Down Syndrome Advocacy on Twitter: http://twitter.com/DownSynAdvocacy