This is a topic that has come up on several blogs I follow recently, and I've been trying to process my own thoughts and feelings on this. It was brought up again this morning when Finn's P/T referred to him as "high-functioning."
Just about every professional we've encountered concerning Finn has used that term to describe him, including our pediatrician, the geneticist who did both genetic workups on him, and Finn's physical therapist. A lot of people have asked us if he has mosaic Down syndrome - even the feeding therapist we saw last week. In fact, earlier on, so many people, including our pediatrician, suspected mosaicism that we had that second workup done just to see (the second workup confirmed what the first one had showed, that he has T21).
It's kind of a double-edged sword in my mind. I don't want false hope about what he may be able to achieve, and in a way, labeling him as "high-functioning" is almost akin to predicting or offering promises, which is dangerous at best.
On the other hand, I do want him to be "high-functioning." Of course I do. I can't sit here and lie and say that it doesn't matter to me whether he's "high-functioning" or not. What does "high-functioning" mean to me? It means that I hope he will have the ability to do as many things - especially for himself and by himself - as possible. It means that I hope he will be able to go through life with as little necessary assistance as possible. It means that I hope he will be as unfettered as possible by disability.
It doesn't mean that I think his level of functionality has anything at all to do with how valuable a human being he is, or how worthy of love and respect. It just means that I have high - but hopefully realistic - hopes for him. And really, isn't that what we all want? Isn't that why we do all the therapies and all the reading, to help our kids be as "high-functioning" as possible?
Adieu - After more than two years and 555 posts (556 counting this one!), I'm saying goodbye to Adventures in Motherhood. I'm ready for a change, and I've started ...
6 years ago