Friday, November 16, 2012

Shame on Me and Shame on Us

A lot of attention has been given to the recent ruling at the Supreme Court of Canada.  It recently ruled that school boards in Canada must provide adequate services to children with disabilities and cannot justify not providing those services due to budgetary pressures.

From the Supreme Court Decision:
This declaration of purpose is an acknowledgment by the government that the reason all children are entitled to an education, is because a healthy democracy and economy require their educated contribution.  Adequate special education, therefore, is not a dispensable luxury.  For those with severe learning disabilities, it is the ramp that provides access to the statutory commitment to education made to all children in British Columbia.   

The synopsis of this ruling is that Jeffrey Moore had dyslexia, and the school board did not provide adequate help.  As a result, Moore went to a private school.  The SCC is awarding his family full costs, and the school board has to pay.  It will be interesting to see what implications this has for ABA provision in Ontario schools.

The Globe and Mail does not concur:
The Supreme Court of Canada has opened a Pandora’s box for public school boards by finding that a British Columbia school district discriminated against a dyslexic child when, during a financial crisis, it closed a special-education centre that provided him intensive help in learning to read. From here on, schools, school boards or provinces could be forced to bleed other programs to meet court-ordered educational standards for special-needs students.
And it concludes:
It makes the court’s unanimous ruling more out of touch that the boy’s public education unfolded between 1991 and 1994, during and after a recession marked by across-the-board restraint, and finally, the overcoming of Canada’s deficit. Many political choices went into those years, and similar choices await today; governments, accountable to voters, should be the ones making those choices. The court overstepped its authority.
I'm ashamed of us for thinking this way.  This is the old mantra, it costs too much, and we can't afford it.  Yet, as I have written before, no one seems to mind that we spent billions of dollars at the end of someone's life in hospital instead of acknowledging death is imminent... no one would allow that.  So why do we allow school boards to write children off because of cost?

Most of all, I'm ashamed of myself.  Ashamed that, without children on the spectrum, I would have agreed with the article.  Shame on me.

Why is this decision such a victory?  Another quote from the Toronto Star, on education in Ontario:

Denise Martins, the principal at Danforth Collegiate, said the school is doing the best it can based upon the staffing provided to us. The school’s support program includes one full-time and one part-time teacher, a child and youth worker and special needs assistant, and a social skills class runs over the lunch hour.

But Ford says it’s not the school or teachers that are to blame; she faults the board for not providing adequate resources. She says her son is being bullied by other students.

Other parents echo Ford’s frustrations with Ontario’s school system: one mother says she stopped working because of daily calls to pick up her son; another spent the night washing ink off her Grade 9 son after he was accosted by older boys; some parents decide to transfer their children to private school, spending thousands in tuition.
Here's the reason why school boards should not be able to hide behind budget constraints... as quoted by Ms. Martins.  They are "doing the best based on the staffing provided to us."  That's a cop-out.  This SCC decision says that children are entitled to an education, and "the school board's best" may not be adequate anymore.

This decision does not reverse Auton, but it least it gives us hope for children getting what they need for a real education in school.


Saturday, November 10, 2012

Two Phrases You Should Never Say

There are two phrases a I hear a lot as an autism parent that I am writing to tell you - don't say them.  If you say one phrase I'm about to describe, you'll just look silly, and if you say the other, you will be unkind.

Sorry there slick.  We're just not.  There are "autistic like" behaviours people can have, because autism is defined by behaviour.  But being socially awkward or a little OCD about where you like to sit doesn't mean you "have a little bit of autism".  It's like saying to a clinically depressed person that "we're all depressed" when we sometimes feel sad, or saying to a person diagnosed with terminal cancer that "we all have a little bit of cancer" (which is not untrue, it's just that our immune system zapped the cells before they grew into a nasty tumour).
Diagnostics exist for a reason, and based on said diagnostics, you either have autism or you don't.  To say otherwise is ludricrous.

By definition, enough autistic behaviours make you have autism.  Do not try to "normalize" what for millions of people is a very difficult disability with which to live.

Phase Two - "I don't know how you do it."

When I hear this, here is how it translate in my brain...
"I am so glad this isn't my life."
Unfornately this only serves to remind me that it is my life, even if it's not yours.

The reality is we are all very capable of dealing with what life throws at us if we are forced to do so.  Circumstances shape our behaviour in a way we can't always imagine.  As a parent who loves his children, I have two choices, either deal with it and do the very best I can, or give them up to child services and hope for the best.  Since I could never do the latter, I am left with the former.

We do it because we have no choice.  That doesn't make us heroes.  It makes us human.

Thursday, November 1, 2012

Speech Is Not Language

Perhaps one of my greatest frustrations with A has been her inability, even after years of therapy, to gain functional speech.  She has made a lot of progress, from nothing to sounds and many approximations.  But without augmentative communication in the form of an iPad, she is very difficult to understand.

It was cute to see tonight while she was cleaning up, she picked up a shape puzzle and put the pieces all in, and Mom and I listened ... oh so quietly, if we listened, we could hear her verbally label all of the shapes ... oval, star, square, rectangle... but even we had to listen so hard to make it out.

Many people look at A and have low expectations of her because she cannot speak.  A uses this to her advantage to get out of doing things she'd rather not do.  The assumption is that if she cannot speak she has nothing she wants to say. 

But, of course, nothing is further from the truth... there have been several times in the past where A has looked at me, said something I could not make out, and then was frustrated she had to go to her iPad to tell me something that may or may not be quite what she was trying to communicate.

In many journals, outcome in autism is associated with the "acquisition of language".  Clinicians will often say, "does A have language?"  But that is not what they are really saying.  They are really saying does she have verbal speech that is functional to communicate.  Language and speech are commonly related, but they are not the same.

A child like A might has language using augmentative systems (eventually we hope she will simply write her thoughts and have them read with voice output).  She communicates with a voice output system (Proloque2Go) that works like an electronic version of PECS, but with much better organization.

A child with speech may still not have functional language.  Some children who are fluently verbal still use PECS or other augmentative systems because their speech is not functional.  It is clear speech, but does not make sense, or communicate the intent of the speaker.  A child who can repeat anything you say but say nothing spontaneously based on internal motivation has speech, but not language.

My son T has good speech and language, though he struggles with a lot of jargon and some delayed echolalia.  Sometimes he drifts into "jibber jabbering" where very little communication occurs.  He struggles to express his thoughts sometimes.  But I have seen other children who use speech more like a "stream of consciousness" where almost all thoughts are being spoken, with little clarity of communication intent.

For A, what makes me feel hope is the increasing number of adults with autism who are non-verbal, yet are leading meaningful lives with a degree of independence, such as Carly Fleischmann, Jeremy Sicile-Kira, or the men (Tracy and Larry) of Wretches & Jabbers (a highly recommended film).

My sense is there is a sub-type of autism, and I think A has it, along with Carly and Jeremy and the men from W&J, that causes severe apraxia of speech.  Jeremy, Carly, Tracy and Larry have all said their bodies do not co-operate with their desires - they don't move the way they direct them to move, and they struggle with intense sensory dysfunction.  Having it explained makes me feel both happy to have understood A better, but also sad in knowing what she struggles to do in order to interact with her world.

I think Jeremy says it best...

"Good things  about my autism is my ability to see beautiful colors in everything I look at. I see bright colors even in  dust."

I have often wondered what A sees when she looks at things.  I wonder if she sees bright colours too.