A few weeks ago, Edda and the rest of the 2nd graders in her school went to the Air and Space Museum. Neither Jeremy nor I could make it downtown, but Edda’s teacher was kind enough to send little missives throughout the day on Edda’s aviation experience.
It has been a quiet school year for us – my major goal for this school year was to try the eye gaze system for Edda – and we did manage to do that, it pretty much showed us how cumbersome and not user friendly it was to use. A huge disappointment, no one really wanted to touch the device, not the way everyone loves to touch their iPads. We are looking for something to make our lives easier, not harder. Our eye gaze trial seemed so long ago, it’s hard to even remember that it was during this school year that it happened.
I had a friend ask me if I liked Edda’s school, asked if it could be better in some way. Of course, I think things could always be better, but it’s hard to say how I would make it all better. This year, we considered moving Edda to the most restrictive schooling in the county, it would be totally segregated from the typical student population, but we were hoping for a more therapy based program (it would have had a pool!) and less academic based program which I think isn’t really playing to her strengths. As a third grader next year, Edda needs to take the standard testing for all third grade students which I think is a waste of time (really not only for Edda, but also for Vince, but at least for Vince, there is a pretense of tracked achievement, I’m not sure exactly what it tracks for Edda). But for various reasons, we shelved that idea, at least for now. Her current teacher has many, many years of experience with special needs kids, both in inclusion settings and in completely segregated settings – the para-educators are concerned and helpful. At the IEP meetings they take all our suggestions to heart and work with Edda diligently, but somehow, of course, it could all be better. But what would that be? Mainly it would be if Edda didn’t have Rett Syndrome.
Here’s a link to the latest clinical drug trial that is being funded by IRSF – just came out a few weeks ago – GO NNZ-2566 ! (they really need to come up with a catchier than than that, something like Sha-zam or Rett-be-gone – now that is much easier to remember.)