When your child is born with Down syndrome, your "clean slate" of possibilities is quickly filled in with a list of “Things to be Aware Of”, “Things That Can Go Wrong”, in essence threatening to take away the wonderful opportunity to imagine the great things our children will do. Among a myriad of potential medical issues from obesity to Leukemia is the mention that we can expect our children’s IQ to be between 50 and 70. This means at best, mildly mentally retarded -70- (I hate that word but am using it purely in a clinical form here) to moderately so -50- .
I feel that this sucks on a few different levels.
For one, I believe that the accomplishments of a child, or lack there-of, are largely attributable by what is expected of them by their parents. This goes for typical children as well as those who have developmental delays of whatever kind. Time and again I have seen articles and films describing a person with Ds or other disabilities who "exceeded all expectations" because he/she accomplished "unexpected" things. Parents in these cases always said: I expected from this child exactly what I expected from my other children, no more, no less.
It is difficult for a bit more of an easily intimidated/influenced, somewhat insecure parent of a child with special needs to stand above the expectations society wants to put upon our children. It is a challenge to have a kind of ‘blind fate’ that ‘Things Will Be All-Right”.
I believe that parents are the ones who put the biggest expectation on their children, and thereby communicate to these children what they are, enabling the child to reach for whatever those expectations are. You can have a super smart child who is an under achiever because parents just did not expect things from that child, sadly we see this over and over again. The reverse is also true, there are plenty of people who’s IQ’s might measure out to be ‘ below average’ but who absolutely accomplished things in life that are remarkable just because they were encouraged and believed in.
A few IQ-related things I feel very strongly about:
1) IQ is not the only measurement of intelligence. There are a lot of really dumb-ass smart people out there! There are things called “Common Sense” or “Street smart” that take us quite far in life.
2) ‘Our’ kids are NOT ‘doomed’ to have an IQ of between 50 and 70, just because they happen to have Ds. I have a feeling that this generation, if someone takes the time to track IQ’s, will show an increase, simply because we as parents will put higher expectations on them.
3) One person’s IQ can be measured on different occasions by a different or the same person, and come out to be different so it is NOT an absolute by any means.
A big revelation came for me when Annelies was about 4 months old. Even though it was evident from day one that she was a persistent child (she was trying to lift her head up 12 hours after she was born, I now realize how BIG that is!!), at around 4 months I started to relax and feel “OK” about the future. I began to realize that Annelies’ future is just as bright as that of any child out there, but that it would be up to us, as parents, not to put any kind of ‘ceiling’ on our expectations of her. I am thankful for the parents who began to keep their children at home in the 50’s and 60’s rather than having them raised in state institutions. I am thankful to the same parents for blazing a trail to inclusion in schools, for without this, we would not be able to even begin to expect ‘typical’ things from our children.
We have a way to go, and most certainly I felt like I was thrown into a battle I did not want or expect to fight when my Daughter was born (or, for that matter, when my son was diagnosed with Autism at age 30 months). But alas, here I am. Here we all are. And it will be OK. It will be more than OK. It will be excellent, because we will expect it to be.
Annelies enjoying a playdate with her friend Gracie at the park.