Thursday, July 18, 2013

The Hypocrisy of Inclusion?

I don’t think I have come across one parent of a child with Down syndrome that doesn’t wish for and fight for this:

party

Why? Why do you want your child side by side with typical peers? You can say you want it because it is your child’s right but I think if you search your heart you will find more reasons than that.

We say we want our children to have peer models. I hear it all the time when IEP season rolls around. We hope our children will learn from their peers, be encouraged by their peers, and make friends with their peers.

But, when science tells us that one day our kids might be able to be physiologically more like their typical peers, many of us insist we would never want to change our child. We love them the way they are and it is the world that needs to change to accommodate their differences.

And while I would agree that it is important that the world see people with disabilities as equally valuable human beings, I cannot buy into the idea that if I really love and accept my kids, I wouldn’t want therapies that might improve their overall health including their memory or processing speeds.

Why would I fight to have my kids spend their days playing and learning alongside typical children and then refuse to let them go that extra step of functioning like them? I am not looking for a cure for Down syndrome for my girls, but I would not deny them any proven, safe drug therapy that will level the playing field for them.

Agree? Disagree? Go ahead, have at it in the comments.

10 comments:

Lisa said...

Well, I don't want inclusion for Finn because I want him to be like his typical peers. I don't believe that he'll ever be like his typical peers - at least not in the ways that most people think about. I want inclusion for him because I don't want him to be merely warehoused. I want inclusion for him because I want him to be valued - as he is. I want inclusion for him because I think inclusion is good for everyone - not just him, but his typical peers as well. How can we ask for acceptance of diversity and then settle for segregation?

Proven, safe drug therapy. Yeah, that's the thing. It takes a loooooong time for a drug to be proven effective AND safe, and ALL drugs have potential side effects, so all of that has to be considered.

And personally, I don't think memory and processing speed fall into the health category; they fall into the cognition category.

It's a slippery slope, and I don't believe there are any easy answers. Parents' feelings about these things, like anything else, are guided by their own fundamental beliefs and philosophies.

Extranjera said...

If I have to choose one I'll go with disagree.

For me inclusion has nothing to do with learning by modeling. It's really less about my child than it is about her peers. It's about the neurotypical kids. I want my child not to play alongside them, but with them. I want for them to sit next to my kid and realize that she doesn't need to be 'contained' in a separate location even if her behaviors are less conformist than other kids. I want her peers to learn and embrace alternative ways of communication and patience. I wish I'd had that growing up, my youngest brother did and he's a better human for it.

I can honestly say that this is how I feel, but I also realize that this is my personal opinion and I have to try to understand that it's just how I see it and that what you're trying to do is your choice, your preference. I have to respect that. Still, i balk at the idea of hypocrisy on this. If I ever entertained thoughts of making my child more like her typical peers those thoughts are long gone and I don't very much like the person who had those thoughts. I'm glad I got to where I am so early in the game.

So how about that talk over a bottle of wine? ;-)

Down Wit Dat said...

Perhaps it's because I live in a different culture, but it's not that I *want* inclusion for Wyatt, but I already have it. It is law and practiced here for many many years, especially in elementary schools. My first IEP meeting will be a matter of course.

Why do I like this? Extranjera beat me to it. So that his classmates can share in his "different-ness", can experience his views, his take on the world. He will already be, with his twin, in a multicultural classroom. There will be a lot of "differences" there. There will be a lot of shared experience there.

I don't wish for any of my children to be anything other than themselves. If a treatment--which as Lisa pointed out--is still light years away, Wyatt and I would talk it over in terms of Alzheimers, in terms of memory formation. I accept, love and cherish Wyatt for exactly who he is. If he chooses treatment, that will be up to him. Ultimately it will be his decision after all, not mine.

TUC said...

The reasons for and benefits of inclusion are much more complex than what I wrote in my post. The specific reason you mention Extranjera is certainly a good one, but for most people it is not the main reason.

Although I didn't mean to give the impression that we send our kids into inclusion so that they can be "like" their peers, one does have to consider what the benefit of peer modeling really is? When deconstructing the idea of learning, I can't help but wonder if all learning is a move toward some form of "more able".

My question about hypocrisy is simply a juxtaposition of the argument for the benefits of peer model learning and the idea that we don't want or care for our children to be more (you fill in the blank). And a bigger question for me is why is it ok to give some forms of therapy and drugs (say for example a teacher for reading support and Concerta for ADHD) but not others? I do understand the bigger picture about human value and accepting people as they are, but in my mind that too is more complicated than the rhetoric that has been going around about it and I am having a hard time accepting the line in the sand.

I honestly don't remember thinking that I wanted to make Kimani more typical when she was a baby but I do remember wanting to "help" her to develop in a "healthy" way. A couple years ago I fully subscribed to the "I would not change her if I could" feeling. And by last year I was determined to just "let her be". But now I am moving away from that again as I can see and feel her frustration, and I see how she struggles. How can I stand by and do nothing? And then there is Masha who wants to conquer the world... She KNOWS already that other kids can do things she can't. I don't want to go too much into that because it is a whole post, but suffice it to say that she is changing my mind about a lot of theories I used to hold dear.

Right now any drug therapies that might effect cognition are hypothetical, and personally I am more interested in the health benefits of research such as a cure for Alzhiemer's but someday these conversations are going to lead to a yes or no answer that will effect each of our children so it is great to be talking about it (and yeah, over wine would be better).

Ginger Stickney said...

I think inclusion is bigger than this...I want inclusion for Jude because Jude is well...a human being and deserves to be part of humanity. Period.

But that said I homes school and plan to do so with Jude as well. Maybe it's because in our small space we've already started to tear down what traditional ways of learning. I don't push for any of my children to be " more able." And it's been a struggle of course. Now that my son is 13 we're seeing the benefits of not pushing..and he's still not doing what others brag about on Facebook but that's okay. A lot of kids don't. And a lot of kids with Ds learn pretty quickly there are things they can't do because frankly our society focuses a lot of what one can't do.

Here's my thing: I don't think these therapies if they are a magic bullet are always going to make everything better. I mean, there are kids who will still have IQs right (and we'll ignore for now how bias those tests are and the research that shows how ineffective they are). There are kids who will still be bullied. Who will still fail in the system because there are kids who are neurotypical do now.

I for one am not against drug therapies at all for some conditions at all. My son does take anti-seizure medication for example which wasn't as easy a decision as one might think. The side effects can be awful (we spent years not being able to go outside in the summer because he couldn't sweat and would have heat strokes). But when we create drugs that are designed to make us think like everyone else? I don't know. It makes me nervous. I'm not going to knock your choice at all because I get it, and I get where you're coming from.

Crystal Rhew Staley said...

I want my son included because he deserves it..right? The peer modeling 'thing' is one I've been thinking a lot about lately. My son (one year old) started daycare two months ago. Not even two weeks after he started he began army crawling. I thought to myself--now is he doing that now because he was just ready to start doing it or did he see the other babies in his room crawling around so decided to join them? Hard to say but I think it may be a bit of both.
I agree with Lisa that it can definitely be slippery slope when is comes to drugs. I'm just really curious to see where this research goes. I honestly have mixed feelings about it right now.

goldenleaves said...

I have mixed feelings about inclusion, which I know is not popular. As much as inclusion seems like a good thing I can't help but think- who is Lauren going to develop a mutually meaningful, caring friendship with? I don't worry so much about inclusion- I worry about Lauren making friends with similar abilities.

Jennifer @talkds said...

It doesn't have to be either/or; inclusion or therapies. As children get older we (speech/sped/etc) can direct teach some of the nuances of social language and then implement them in the classroom setting. Not talking about "pull out," instead thinking about how each specific child learns and matching that style to make the entire educational experience successful within the class.
One size doesn't fit all, just like there isn't one "type" of Down syndrome.

Callie said...

I don't think it has to be either/or either... but if there was a drug that helped with cognition, or motor planning skills, I'd absolutely go for it. My kid's speech is very, very difficult to understand (even for me!) -- she wants to play with her friends, they want to play with her, if I could wave a wand and her speech clear, I would. I don't think it'd change Kay, just make her life a wee bit easier. Ditto with fine motor skills - she is seven, shoelaces aren't yet happening, despite a TON of effort (her, therapists, EVERYBODY). Kay would still be Kay.

There was a fascinating article regarding a drug for down syndrome that seemed to help with cognition a few years back - a scientist had a girl with DS, which spurred his research:

http://www.nytimes.com/2011/07/31/magazine/a-fathers-search-for-a-drug-for-down-syndrome.html?pagewanted=all

I like his take on it - he's not trying to change his daughter or folks with DS, but the meds to seem to increase cognition a teeny-tiny bit, just enough to allow adults with DS a bit more independence, i.e. to be able to cook without supervision without burning the house down, navigate public transport solo, etc.

laura said...

I want my daughter to have a full, rich, dare I say 'normal' life, with all the ups and downs, good and bad, heartache and triumphs that go with it. Some may call this inclusion, I just call it life.
I don't think I treat her much different than I would have it she didn't have that extra little pesky chromosome. The main difference is that we have chosen to go the neurodevelopmental approach and started trying to prevent delays before they happened by large amounts of brain stimulation, rather than treat delays after they happened. That just means we taught her to read very early and we work on different school and speech type exercises part of every day. That coupled with an extra healthy diet, some supplementation and lots of exercise has been working out very well for us thus far.
I am more comfortable with that approach than a drug type approach.
She is pretty up there with her peers at this point, her biggest delay being in expressive language. Once that catches up, there will be no stopping her. She is way ahead of them in others areas.
I don't know if it's a result of what we've done, or we are incredibly lucky, or both, But we feel very optimistic that the dream of a 'normal ' life will come true.
As far as that question about getting rid of the DS if it was possible; I have 2 words. Hell Yes!
But make no mistake, my love and devotion for my daughter extends past the universe. I just don't see the DS as who she is. Just a little part. One little chromosome.

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