Sometimes I prefer to have a special place to go to, and not to have to deal with those who are stronger, faster, and often less than kind.
We are not all cogs and widgets that need to roll down the same assembly line.
Some of us need more space.
Some of us flourish with less noise.
Dyspraxia has a different pace for learning, and needs activities many do not…and craves them, too.
Having “one size fits all” be the only size available is not freedom, but a different kind of straight jacket.
My first born was dyspraxic; so I know. Several professionals with credentials from wonderful schools like Harvard or at Children’s Hospital told us he could not be raised at home, was not educable. This year he finished his college degree and I will for ever be grateful to Jane Kumar and the folk at Occupational Therapy Associates for having a special place where he could learn what he needed.
What you criticize as a ghetto can be, for some, a magic garden and place of healing.
Again: “One size fits all” is a Procrustes straight jacket.
Properly done, an intensive care setting is an Oasis on the road to as much normalcy and function as possible – not a ghetto, and not a walling off but rather a magic garden of healing.
Was Fernald all it could be or should be? No.
Are there those who need time in an oasis, and supports and education others do not in order to move forward? Yes.
Have we, collectively, been willing to admit and meet those needs – No.
As a parent, did I experience kindness and inclusion from other parents and our town’s schools – almost never. Did I experience kindness and inclusion and real help at Occupational Therapy Associates (OTA) that meant the difference between my son remaining isolated and dysfunctional, and being able to regain the ability to be part of the larger world and function like others – YES – but only because OTA was like a magic garden and my son was able to enter that magic garden for the time he needed to be there.
“God makes different models.” So I am told; is it to teach the rest of us compassion? Perhaps.
When it comes to meeting needs that are uncommon, we pay now, or we pay later – or there are lives that never become rich and independent at all, that may have been able to do so.
You were so fortunate that you found that “magic garden”.
For many Fernald is their oasis. For some the happy life they have there is the pinnacle of what they are able to achieve. That oasis, and their happy lives, should not be taken away.
So many of the neurological issues, like Dyspraxia or Apraxia cause the person to “look okay but act weird” and be totally shunned as a result.
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p>My son lodged in the birth canal due to the umbellical cord forming a slip knot on his heel – too low for a ceasarian, lodged in the birth canal itself, ergo a two and a half hour transition and partial anoxia. The glitches this caused in his wiring were, sadly, quite exotic and difficult to remedy since the medical arts do not yet include true “electricians” who can rewire a human’s circuitry.
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p>For example, the nerves between the face and the brain would intermittently short out, so our son did not know what his face was doing, and we needed to use video replays & lots of role playing. He had to learn a conscious and cognitive way to “feel” smiles, etc. The term for that is dissemia, by the way.
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p>I could go on and on about other sensory integration issues he faced and overcame thanks to OTA and his own willingness to try over and over and over, and support from Mom and Dad. Here are the names for some of them, in addition to the dyspraxia and dissemia: tactile defensiveness, gravatational insecurity, high sensory diet, six year gross motor delay, executive function delay, motor planning disorders of several kinds.
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p>What they told us, by the way, is that it was extraordinary for someone who once testable has an “IQ” of 165 to have these sorts of challenges, normally such neurological issues also come with cognitive limitations. So I suspect that this young man’s story will be quite interesting by the time all is said and done.
As always Deb, I’m sorry to hear that so often the people who should have cared for your firstborn did not. Though I am carefully agnostic about Fernald’s fate, I can’t imagine a situation that does not recognize each individual’s difference and need, regardless of the direction it takes.
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p>And as for the idea that
I suspect that is why stomv comments on BMG.
if only you “knew” the people who live at Fernald, you’d be far less “agnostic.” I can give you a quick nutshell though- my sister was born profoundly intellectually disabled. As an adult, she weighed 65 lbs on a good day, never walked, never talked, had a trach and a g-tube. Her cerebral palsy was such that she literally had control over her right foot…as opposed to her left foot. She had severe scolisis, that left her nearly pretzel-like, because surgery was too risky. She was very fragile, like so many that reside at Fernald.