Well, given my previous post, this may seem sort of ironic, but as of today, I am now writing once a month over at
Hopeful Parents, a site for families of kids with disabilities.
My first post may seem sort of familiar, since it's adapted from something I wrote a few months ago. But it's an issue that's about to raise its ugly head again, just in time for it to get kicked in the mouth by my size thirteens. Because I'm seriously not in the mood to fight this fight again.
Anyway, go check it out. So far, no one's gotten too crazy in the comments, beyond a little bit of passive-aggressive "if you REALLY loved your kid..." stuff. But it's early yet.
I felt the same way about attaching the "mentally retarded" label to my son Marcus, who, as a result of severe abuse in his birth family, had suffered a severe traumatic brain injury and detached retinas. His injuries left him with spastic hemiplegia, severe visual impairment, language disabilities, and what I used to refer to as "learning disabilities." Like Schuyler, some early IQ tests, particularly performance (as opposed to verbal) tests, fell in a low normal range. I hung my hopes on those results. I insisted that for special ed purposes, his eligibility be based on TBI and VI codes.
ReplyDeleteBut in recent years, as he reached his mid twenties, I realized I had made a huge mistake. There are lots of programs for adults with mental retardation (even in the social service wasteland of Texas), but how many programs are there for folks with TBI, especially if that injury is one of long standing? To qualify for MHMR programs, you have to have had a diagnosis of mental retardation before the age of 18. Luckily, I was able to go back through Marcus' records and find an IQ test that fell in the MR range. That, plus the added evidence of new testing which also fell in that range, qualified him for services.
So, while I understand your feelings at this point, I would urge you to reconsider at some point before Schuyler turns 18. Resources for adults with disabilities are far more limited than those for children.
Is "the R word" even still used officially? I thought it was now "intellectually disabled" or some such?
ReplyDeleteHi Rob!
ReplyDeleteI write for Hopeful Parents on the 15th of every month (except when I, um, forget). I really enjoy it. Welcome. :)
Hi Rob -- I was very interested in your post, but found it troubling that you view the clinical use of the word retardation as "bad" and not something you want associated publicly with your daughter (as if she would somehow be less of a whole person with that label -- as if she couldn't both have that label and still be "sweet and ferocious and clever").
ReplyDeleteI totally get that you don't feel the testing can accurately measure Schuyler's intelligence because it's biased to kids who speak. And that in itself could be reason enough not to pursue the testing.
The question I have is how we may be perpetuating the stigma around kids who do have retardation, and whether banning the use of that word in a clinical context (or refusing to have our kids tested) is going to change people's perceptions of kids who do have intellectual disabilities (and of course, I am totally opposed to the way the R word is used colloquially!).
My son Ben received the mild MR diagnosis at age 11. He too is non-verbal, and I have similar concerns about the testing and that it couldn't accurately demonstrate what he knows.
However, after weeping and railing against this diagnosis -- which to me seems to be the most stimatizing of any disability diagnosis out there -- I couldn't help thinking -- "it's not what I thought it was." My conception of "mental retardation" prior to having my son is not at all what the reality of my son's life is. My son is bright and clever and curious and a million other good things.
And then I started thinking -- I'm tired of people's fear and loathing and misunderstanding of what they think mental retardation is. And how are we ever going to change perceptions if we are too afraid to even use the word (again -- in a clinical context!)?
So I began to write a bit about it, and use the term in its clinical context, in the hope that it would lessen sensitivity to the word, and also in the hope that it would convey that my kid has this thing -- and he's awesome and I love him and accept him.
I am very, very interested in your writing because this is a topic that I have struggled with and continue to grapple with.
You may be interested in reading a post I wrote called "What makes us human?" in response to a Motherlode column about "curing" Down syndrome -- and we all know that Down syndrome is most feared because it's associated with MR (http://bloom-parentingkidswithdisabilities.blogspot.com/2010/01/what-makes-us-human.html)
I would love to have you as a guest blogger on BLOOM sometime (check us out at the link below). Cheers!