I'm on a bit of a rampage, and we all just love a good rant, right? No? Just me?
A friend of mine called last week and was telling me how now that her son is seventeen, she needs to get crackin' with a case worker and start the arduous task of setting things up like Medicaid, transitional services, and SSI. These are things that are in our future, too, but I am letting my blinders stay on until Rojo turns sixteen, maybe seventeen, before crossing those bridges I don't want to cross.
When this friend finally got someone helpful on the phone (can you imagine the extent to which my phone phobia will flare up when I have to do this?), the kind woman on the other end asked, "What is his current eligibility?" My friend gave the initials that bring a tear to her eye and a choke to her throat each time, "M.R."
"Well, we aren't going to use that term," she said, "We'll use Developmentally Disabled."
Later, I was sharing all this with another friend of mine that has closely walked my story with me, and who is the aunt of a fifteen-year-old with Down Syndrome. "I like Intellectual Disability," she said kindly enough. At which point I bit her head off.
"I DON'T!" I said. "It's just another way of saying, 'not smart.' It's focused entirely on what we think of as intelligent, and doesn't tell us anything about the other intelligences the person may have."
I then proceeded to blast her with a long litany of people I know with high SAT scores, impressive graduate degrees, and by all standard measures are "intelligent," and frankly, make some of the most piss-poor decisions I've ever heard of in my life.
At Rojo's school they use the term "learning differences" rather than "learning disabilities." I love this, because that's just exactly what they are, differences. Rojo still can't tie his shoes - probably never will, but that boy is a wiz on his phone and computer. Nobody taught him. He innately knew how to make them do what he wanted them to do. Technology makes sense to him. It works in a way his brain can get itself wrapped around.
Rojo has a spiritual intelligence I've never seen in another person. Ever. I see plenty of "smart" people striving to attain a state of mental health and peace that he effortlessly just has.
I don't know, maybe when it's time for me to make that call I'll give them his "true" diagnosis of PDD-NOS, but maybe I'll just see what happens when I say he has "intellectual differences."
Photo from http://www.iqtestexperts.com
5 comments:
Dear Carrie,
YEs. Say that for "intellectual differences" is true, exact, and helpful.
Say it.
Peace.
I once called a neighborhood school and asked whether they had a class appropriate for my daughter's needs. The person asked for her "designations," which I had to read off of her IEP. When I got to "MR," the person cut me off and said, "We don't have no class for your mentally retarded daughter." The best thing about this statement is that it makes for a great story so many years later.
Peace to you.
I love learning differences! I hate the term "disorder" in any context and struggle with alternatives when ever I have to describe learning differences, but I'm stealing this.
I was reminded of the Albert Einstein quote, "Everybody is a genius, but to judge a fish on his ability to climb a tree, it will live its whole life believing it is stupid."
I too despise "disorder" and have come to know that a "different" order is not less than, perhaps not even equal too, but often times is greater than the usual order. Placed side by side with the average, shoe-tying, bad decision making, spriitually void person, Rojo is gifted. It simply depends on who's opening the package- some people are too caught up in the wrapping paper.
Carrie,
My son is 18 and I did the SSI and Medicaid thing. We will be looking into transitional things in the winter.
I just wanted to let you know that I believe the best first step is to find an organization in your area like this:thearcoakland.org
They give free seminars on the entire process including handouts that explain everything. I went to one of the their seminars many years ago. Then when we were ready to start the process, one of their staff lawyers sat down with us and explained the whole process personally. All for a $55 per year membership fee.
Post a Comment