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Tuesday, October 9, 2012

31 for 21: Why community is important

For this installment of 31 days for Trisomy 21 awareness, I want to talk about the benefits of helping children with special needs in a community.  My faith community includes several well-integrated children with Cerebral Palsy, but I have seen very few other disabilities represented.  There is one child in my children's school with Down syndrome.  Other than that, there's the usual crop of ADHD, and the occasional case of Asperger's.

A blogger I quoted a couple of days ago answered the following question from a reader today:

When I had my son 10 months ago, he was born with Down syndrome and while I didn’t know any of the health implications, the first thing that came into my head when I saw him, was, “Oh no, he is not going to be smart and he will be hard to understand when he speaks.” I want to know why I had that expectation because reading your blog and others has proven the “not smart” part very wrong. My son proves to me each day how smart he is by how hard he works and fought to live through heart surgery and feeding difficulties and how hard he works now. Every person who I’ve talked to since my son’s birth has said how enjoyable it has been to work with people and children with Ds. If people with experience in this know the truth, why is the opposite a commonly held if false belief? Who is spreading this lie about what smart looks like? I’m chagrined that I felt that way about my son at this birth and grateful that I found reality to be better than I had expected. That is what I want Down syndrome awareness month to do – to give people a good gut feeling when they think about Ds, and not a pit of fear and discomfort and pity.

Your questions may have been intended to be rhetorical, because I’m just one person and unlikely to know The Answer, but I’ll give you my opinion. I’ll take the second question first, because it’s the toughest.
    There is no doubt that medical textbooks repeat the “facts” about IQ, as does virtually every website or clinical resource available. Doctors (who, I might add, are generally people who value intellect) are taught in medical school that people with Down syndrome have lower IQs – i.e., that they aren’t smart. Of course, the belief isn’t limited to doctors, but having the experts say it does lend it more credence, don’t you think?
     People tell us all the time that Nathan is “smart” and I often wonder what they mean. Smart for Down syndrome? Smart compared to typical kids? Clever? Are they just being nice (I don’t believe that one). His new preschool teacher, who’s been in the business for years, says she doesn’t see any difference in him intellectually than the typical kids.
     The answer to the first part is probably that the people with experience are too few and the people without it are too many. That’s why inclusion is SO important. Case in point: the story I linked to in Sun-Beams recently about the young woman crowned Homecoming Queen at her high school. The media made a big deal about it, but the students didn’t understand why it was a big deal. She was well-liked so she won – end of story. The more our kids spend time with their typical peers, the more comfortable people will be Down syndrome.

Quite besides the benefit to a child who is being rescued from a dead-end situation in an orphanage or mental institution, bringing children with special needs into a society that increasingly sees prenatal diagnosis and abortion as an acceptable "cure" for congenital differences can bring about a change in perspective.  Learning to appreciate people with very different abilities creates a richer community, where the "typical" spectrum is broadened.  After all, once you have learned that it makes no sense to bully someone because of a severe or obvious disability, does it really makes sense to bully someone who is short, or lisps, or wears glasses?  Once we have learned to appreciate the internal qualities of people who look different, will we be so "look-ist" in our selections of friends and spouses?

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