Thursday, April 20, 2006

More Adventures in Disability Land

FYI, things at Robert's school have resolved themselves pretty well, and without actual litigation. For which I am grateful. It has cost a whopping amount in legal fees, but I think it will have been worth it.

Robert's designation has been changed from a life skills program to a general ed program (albeit special ed within general ed), and he now works one-on-one with a certified special ed teacher 10 hours per week. He has a one-on-one aide all day long--one aide covers all his academic classes with him, one does his tube feeding and medication, and one aide does his toilet training. So there are still three people, but they each have a clear function that matches their abilities and temperaments. And Robert is starting to seem a lot happier. They've been able to find an academic aide who's a graduate student in special ed, which matters a great deal, I think. And we're getting in-home services for Robert this summer because of his summer surgery and so he can work on the eye gaze communication system in his home environment with an educator.

Robert continues to do very well with it, making some big breakthroughs. He's learning how to hold his head in place or get it back in place so the camera can continue to read his eye. He's also learning that he can do some more exciting things than the initial training screens. And he's definitely gotten the concept down that his eye is moving the cursor. What he's working on now is mostly target practice--it can be difficult to control the extremely rapid movement of your eyes to both hit and rest upon a target long enough to activate it, even though activation only requires a half-second. I was absolutely stunned at how quickly my own eyes moved when I tried it.

One of the things that has hurt me the most, though, about this incredibly contentious IEP process is the extent to which some of the school therapists in particular have tried to make me feel like a bad parent. I'm thinking particularly of Robert's school physical therapist. He doesn't cooperate with her, and she can only read his lack of cooperation as evidence of limited intelligence or undesirable motor traits, i.e., every decision I make about his medications (in conjunction with his doctors) is just plain wrong if it results in doing something that makes him, in her opinion, harder to work with in PT, even if it results in his being able to use, for example, the eye gaze machine better.

I think it's her inability to realize that Robert does not have a developmental problem, which is solved by encouraging in multiple ways, his ability to make progress on a particular course, laid out like a flow chart with precise stops along the way that must be visited and mastered. Robert has development problems as a result of his illness, not a developmental problem which is addressed by getting him back on the developmental band wagon and getting him to pass through the same stages of development as, say, Edith did, in the same sequence. In order to treat him, you have to look at his strengths and weaknesses and determine which are the most important strengths to reinforce, and what creative steps you can take to maximize his strengths--not what developmental trajectory you want him to follow as though it were a state assessment test. To me, that is the greatest failing of developmental pediatrics, which I by and large despise. Robert's school PT is not capable of thinking outside the box. And she's not even very good because she can't seem to understand that his hip displacement would interfere with his ability to use a walker.

She just blames him and me for insisting that she try a different walker, then uses his inability to move it forward at this late date because of his hip pain as an excuse to justify her poor decisions the entire time. (She had been trying for 2 years to use a walker that for 2 years we told her we had discontinued because it didn't work for him, and that we had moved on to another type in which he was having success--she didn't even make an effort to locate a different walker until January, after we got a lawyer.)

My lawyer explained it to me as a clash of parenting issues. Robert's school team can't admit that they failed him this year with bad decisions about his programs, a miswritten IEP, lack of academic support last summer, and an inability to appropriately address staffing issues. Part of it is the County's fault for having a misguided allocation system that evaluates only the number of special ed students in a school (which run the gamut of severely disabled children like Robert to kids with dyslexia), and not the types of interventions (in terms of hours) that different categories of disability require. But part of it is the school. So, rather than admit their own failures, they want to blame me and try to convince me that it's really Robert and I that have failed.

I'm doing my best to try to take the high road and provide constructive criticism and support, and doing my best to avoid accusations. But I am continuing to quietly, but firmly stand my ground on the issues on which there is disagreement. Parents really do know best sometimes--we have instincts about our children that are impossible for others to truly know and understand.

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