Pamela Wilson, who writes for the “Special Needs Children” site at Bellaonline.com, sends in this reaction to the recent report that 27 percent of parents of children with Down syndrome surveyed would not seek to “cure” their children. She is the mother of a young adult with Down syndrome.

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First of all, we don’t really know what choices we would make if a safe, effective “cure” for the range of intellectual disability found in most individuals with Down syndrome was developed.

The thought of giving pharmaceuticals of any kind to newborns or young babies is distressing to most parents, especially since so many are known to have serious side effects in teens and adults.

I don’t think we can compare the rejection of cochlear implants by some in the Deaf community to experimental pharmaceutical treatments to reverse or avoid learning challenges in babies and children with Down syndrome. One is a cultural issue over a “condition” shared by a parent and their son or daughter.

Most parents of individuals with Down syndrome do not share a culture of disability with their sons and daughters.

That being said, we do want the best opportunities and support for them 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.

It’s likely that a “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.

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.

I doubt that any ten of the group surveyed would 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.

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.

This entry was posted on Saturday, November 21st, 2009 at 8:18 pm and is filed under Down syndrome, commentary, families, research news. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.