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?
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9 comments:
I totally agree- I hope our little Bennett is "high functioning" and if he's not I'll keep doing what I need to do to help him the best I can. But I don't think there is anything wrong to want your son to be "high functioning".
There's nothing wrong with hoping your child is "high functioning" -- as long as you can accept the other possibility. I was always told Kayla would be "high functioning" in Early Intervention. She met many of her milestones earlier than expected. Then autism crept in and now she'd be considered "low functioning". But she's still my kid and I still love her. It's sort of ironic, I actually have to battle less for services than my friend who's child is so "high functioning" she scores almost at typical age level.
It was hard for me to accept that Goldie was legally blind. I didn't think about it until I read your post, but, yeah, I'm afraid to hope she's "high funtioning" and then have reality hit me again when she's not. What I want now is for her to be the best Goldie she can be and to be happy with herself.
I too agree. Parents always want and hope for their child to improve and do better and make that next step. So yes, we all hope that our child will be high functioning and able to do as much as possible on their own. That is what I strive for everyday. That does not mean that I will not accept and love my child if they are unable to reach those goals, but what kind of mother would I be if I didn't try? We all want our child to do well, we just need our child to show us what "well" is for them and then accept that. But to find out that we have to challenge them and if they are high functioning and able to do things that other kids can not, we should not be made to feel guilty for being glad that they can do it. Of course we should not, as you mentioned, think our children any more worthy just because they can. Each child is unique and special in their own way no matter what "functioning" label they are given, that is what we must all remember. Let us cheer them all on including both those who excel beyond our imaginations and those who need an extra helping hand.
I think every mother wants their child to be the best they can be, regardless of whether they are deemed to have 'special needs' or not. It is in our nature. However, I think in the special needs community, we are often confused between function and value - our children are valued, loved, adored, and given everything we can possibly give them REGARDLESS of ability. That is to say that level of functioning does not determine the level of value we place on our childrens lives. The two things are not even linked in my mind!
I want the best for my son.
I love my son without condition.
Two seperate things - one little angel boy!
Not to take anything away from Finn as it does sound like he is progressing wonderfully, but I think the fact that our society has such low expectations of children with Ds makes a lot of children out there "high functioning". - just my thoughts. The fact is that no one gives these children a chance in hell of doing anything worthwhile when in fact they have a lot of potential. I am glad to hear that he is doing well and hope that sickness has left you all.
Very well said!!!
Oh my gosh, we get that all the time with Sam. It's like oh don't worry he is going to be high functioning and do so many things. It's like they are almost saying the low functioning is bad or something, it really bothers me. Also, it puts pressure on me that since people think he is going to be HF then if he isn't then I did something wrong with him. I do hope he is but if he isn't then he isn't. Great post you put up.
I agree with so much of what is being said here. I, too, want the best for my daughter and want her to reach her full potential. I also think that people have unnecessarily low expectations of kids with Ds, as was mentioned.
I just don't like the HF description. Maybe it's the way I've heard it used with Autism for many years that's rubbed me wrong. It just seems to come off as a better/worse situation and not simply a description of abiltities.
Lables, in general, are hard for me still.
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