Thursday, September 18, 2008

So much depends

Looking for the point of entry to communication for a child who cannot speak, cannot use his hands or fingers well, and has other motor dysfunction is an awfully complex matter.  Combine that with a county that is trying to implement "inclusion" education in a highly political environment, and you've got a sticky situation.  We are currently caught in the web of our own expectations, our home school's vacillating commitment and lack of commitment to Robert's education, long-standing arguments about what constitutes inclusion education and under what conditions education designations are applied, a county school superintendent who has been quick to push an agenda and slow to follow with appropriate funding, and Robert's kaleidoscope of motor problems.  Oh, yes, lack of diagnosis as well, and, therefore, lack of treatment plan.  And there was having that second child and the general exhaustion with trying to troubleshoot endless medical problems as well.

In the middle of this is a child who absorbs everything that's going on around him--has high receptive language abilities--and has almost zero expressive language abilities--the ability to say what's on his mind.  And motor problems and a lack of a diagnosis that make establishing testing parameters and conditions extremely difficult.  Even with yes and no, raise one hand or the other, Robert eventually just can't repeat the motion any more.

The problem is, no one is ever willing to go on faith in this education system.  Things must be proven using metrics.  It doesn't matter that you can tell by watching his facial expressions or through anecdotal evidence, people still want to flatten the kid into a set of numbers.  We can't just try something because it might be worth a go.  This is the language of "human development": turning someone into a series of digits and being very solemn about procedures.  This would be OK with say, geologic data, but my child is not an earthquake or an avalanche or a rock relative to the position of the horizon.  Unfortunately for the developmental people, he's actually a person.  Unfortunately, I once called a speech pathologist a Nazi and I once made a fairly well-known developmental neurologist cry.  This is because I am either naturally mean-spirited or because there is something to this idea of an unbidden maternal instinct to protect her young with deadly force.

The assistive technology people at school kept trying different things over time, mostly when we evinced frustration, but these things always involved metrics and were wrapped up with the idea of metrics and time was wasted and things were delayed because people seemed to think that nothing could be 'put in place' until every last detail had been worked out.  Unfortunately, Robert kept changing (damn that child).  Far too much time was spent, for instance, trying to find the best and most reliable position for a hand-activated switch when we kept noting that Robert's motor abilities fluctuated daily (parents don't know much).  Time was spent trying to convince us that Robert did not have good head control, thus crossing out, without even trying, whole categories of assistive technology.  Nobody thought to wonder whether a tilt-in-space wheelchair with a particular type of headrest might allow his body to relax so that head movement could be achieved.

Time was spent arguing that testing data, and/or the lack thereof, made Robert a poor investment for County equipment and resources.  Time was spent in ridiculous and unproductive ways.  Time was spent arguing that auditory prompts were too disruptive for a classroom or that other assistive technology was too much bother for some teachers to use.

Time was spent.  So Monday, we went to the Kennedy Krieger Institute, exhausted by all of this over the last few years, exhausted by arguing, exhausted by the general state of things, to get some kind of additional feedback on what else might possibly be suggested.  Ah--how about a head switch?  And within minutes, Robert was trying to time signaling his head to move with actual head movement so that he could hit the right frame on a system that used single switch auto scanning with auditory prompts.

We have, this week, had Robert practice the head switch by connecting it to switch toys, which he likes.  We have, hooray for us, a switch interface in the form of an Intellikeys keyboard that had been somewhat abandoned, and we have Speaking Dynamically Pro, a creaky disability program that has somewhat intimated me.  All of the disability software is creaky, by the way, and I always wonder how Bill and Melinda Gates could set up a foundation with so much money and fail to apply some of it to software engineering for assistive technology.  I keep thinking about writing them a letter, but am sure they would ignore me, or, at best, send back a polite form letter about it not being in the mission statement of the Bill and Melinda Gates Foundation.  

And yet, so much depends on a red wheelbarrow--which would be me, beside the white chickens.


Elizabeth said...

I loved this post -- it just portrays so exactly all the shi--stuff we all have to go through. I remember my first feelings of resentment that I had somehow become a raving lunatic bitch out of necessity. It's all so TIRING, right?
And thanks for the wheelbarrow -- always loved that simple phrase, the colors, the weight of it all.

jeneva said...

And I love your formulation, "I remember my first feelings of resentment that I had somehow become a raving lunatic bitch out of necessity." That so precisely encapsulates my own dilemma in having to decide, often instantaneously, between the moral good of protecting the interests and well-being of my kid and the ethical responsibility to treat possibly dangerously wrong-headed medical persons with professional respect.