Recently I was speaking to a mother of a child with T21 who is a few months younger than Yirmiyahu who asked me how he’s doing. I told her he’s doing great – cute, smart, communicative, etc.
“I don’t understand,” she said. “Mental retardation is the definition of Down syndrome. How can he not be mentally retarded?”
It’s so obvious to me that Yirmiyahu isn’t retarded that I didn’t even know how to respond for a moment. Then I told her, I don’t accept the limiting definitions by medical professionals as fact; this is what they think they know now and it will continue to change with time.
Earlier in the 20th century, it was believed people with T21 had an IQ of 20 – 40, would never speak or read, probably not walk. By mid century, parents of a child with Down syndrome were told his IQ would be between 40 – 60, he would walk and talk but never live independently. Now parents are told their child’s IQ will be between 60 – 80 and he will have a mild to moderate intellectual disability.
Did the children change over the course of a hundred years? No. What changed was how people treated them, and this was based on their expectations which were set by the definition of the diagnosis.
Less than a hundred years ago, they were hidden away, institutionalized from birth. Of course their development was limited. The support people with T21 are receiving continues to improve and accordingly, outcomes are much better.
In another twenty years, it’s very likely we’ll be hearing kids with T21 have IQs of 80 -100 or more. (Though it bears mentioning that IQ tests are a very limited and inaccurate way to judge a person’s intelligence and capacity for contribution.) If you wait for studies to tell you how bright your child can be, you’ll have wasted your child’s growing up years.
Well, I’m not waiting for the studies to catch up with what I already know.
I can see what people with Down syndrome are accomplishing now, people who are now in their twenties and thirties. They have graduated from regular (ie not special ed) high schools with a full diploma, gone to college and earned college degrees. They are athletes, activists, business owners. They are married and living independently; some are parents. They are living happy, healthy, full lives. They’ve challenged what we assumed was true of people with T21, shown us what’s possible and set the bar higher for the kids in this coming generation.
I’m going to make the non-scientific assumption that all of these people had parents who believed in them and didn’t let the beliefs of medical professionals of the time determine their view of their children.
Currently I know of many children with Down syndrome who are reading at the age of 3 or 4, speaking two (or more) languages and reading both languages! Does that sound like a lack of mental ability to you?
I told the woman above, if you treat your daughter as if she’s mentally challenged, that’s how she’s going to be. I told her about my experience at the Feuerstein Institute, when at his six month evaluation they told me they rarely see a baby with T21 at the level he was at. This mother asked me what I did. I don’t think I’ve done that much; the main thing, I think, is that I’ve never believed what the doctors told me when he was born.
Yirmiyahu is a bright boy and I treat him as such. He doesn’t have to prove that he’s intelligent for me to treat him that way, any more than any of my other kids had to prove themselves. Will some things take him more effort and time to master? Probably. Does that mean he’s not intelligent? No. Am I more conscious of providing him with good quality input? Absolutely.
We can’t limit our kids because of a diagnosis. We can’t let professionals limit our kids because of a diagnosis. Kids with Down syndrome have amazing potential and it’s unfair and damaging to view them through the lenses of outdated medical information.