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.
Avivah
You know, I’ve been wondering about this very point after reading 2 years of posts on Yirmiyahu. It doesn’t surprise me now. I wonder how people will understand this condition in 50 years from now? It makes me sick when I think about the attitude I found among medical establishment years ago when I was go through prenatal care and facing so much pressure for prenatal testing.
Anyway, you and your family should be totally matzlichim IYH in bringing out the best in Yirmiyahu and each other.
Sharon, unfortunately parents now are under the same kind of pressure – it’s assumed you’ll abort if you find out the baby has T21; there’s very little support and almost no accurate information about what having a child with T21 entails. The medical professionals haven’t kept up with advances in this area, they don’t know what’s possible and they give you a gloom and doom scenario along with the diagnosis.
I got a birth diagnosis, and they kept asking me why I hadn’t done prenatal testing – I told them he’s here, we wouldn’t have aborted and we’re delighted to have Yirmi in our family, so they can stop asking. When they asked about prenatal testing, they were really asking, why you didn’t do what you could to prevent a child with T21 from being born in the first place.
Thank you for saying it the way it is. I worked with a girl who was a quad due to having a spinal cord disease, and when I would say to workers with people with disabilities that we are all disabled they would be affronted. But it is true and all people are different from each other. T21 kids just often look more different. Yasher Koach.
It’s true, we all have areas we struggle but for some it’s more visible.
Dear Avivah
Thankyou for your blog,.I enjoy hearing about another mother’s experiences,and from another country.I fully agree with you about not limiting our kids,but at the same time,I am not disappointed if my son doesn’t reach his expected milestones timeously.I know he’ll get there,but may take a bit longer to do so.
(for me,Down syndrome has taught me more than ever to live in the now and enjoy it)
I am a GP in South Africa,and my frustration is that it seems SA is a good generation behind places like Israel and the USA in their facilities for kids with T21-it is extremely rare to have our kids attend main-stream schools.Fortunately,early intervention is encouraged.
My son is 15 months old now,and the light of our lives.We also would never have considered a termination of pregnancy,and have enjoyed every learning experience with Jude.We are blessed
Hi, Leanne, welcome! I’m also okay with it taking longer to reach milestones; my focus in on the long term. If he gets there in the end, does it matter what age he started walking, talking or whatever else? I also think learning to slow down and focus on the now, to appreciate your child as he is, is a wonderful experience!
Congratulations on your son and I hope you comment again in the future!
I am so glad I started supps when Etel was young. That is really a critical point. I heard on Einstein Syndrome list and DSTNI yahoo group that DS was a progressive, brain damage based disease, and that it’s possible to prevent some of the brain damage – caused by lipid per oxidation and slowed down by giving antioxidants and choline, DHA and other lipids.
Liora, I agree with you 100%. I had no idea how controversial a position I was taking when I decided to take this approach, though.
You have made my day and inspired me
I too feel the same way. Society makes it difficult though, especially providers (even in school). You would think that they would feel the same way, but instead, they limit our kids making our jobs harder.