This morning when I got up as usual at a little before 4 a.m. and scanned three or four news websites, I came across an article in the New York Times stating that elite Supreme Court clerks (these are the young lawyers that assist the judges in writing decisions for a year or two, for those who don’t know or care) tend to not only graduate from Harvard or Yale Law School, but also tend to have been undergraduates from Harvard, Yale, or Princeton as well. Interesting factoid, not particularly suprising.
Around 5ish, I visited one of my local parenting and discussion chat websites and there was already a raging debate about this article. Apparently, there were those who construed this article (which really does nothing more than present a set of data points about hiring preferences in a very small office) to mean that liberal arts education in general is worthless. Don’t send your children to anything but an elite university.
We did not worry about college. When Sarah was really little, of course it was our plan for her to go to college. We even felt that the life of the mind would be especially important for her considering her physical deficits. That books and learning would be a solace for her and she could develop mental facilities that “overcame.”
But that’s not what happened. It’s very hard for a child who can’t explore her world adequately and can’t effectively ask questions to continue to gain a base of knowledge. There was also the progressive nature of her illness. Sarah did develop intellectually, up until a certain point. She learned how to read and she read at about a second or third grade level when she died. She also communicated with her “talker” or speech-generating device, when she felt like it. But augmentative and alternative communication is not like regular speech in terms of grammar or syntax. It’s the rare alternative communicator who can produce full sentences in English.
We followed several blogs and YouTube channels for a couple of years where the parents worked intensively with their kids (and by intensively, I mean every hour of the day) to produce full sentences and communicable English on their speech devices. We couldn’t replicate these results in any form or fashion. Sarah didn’t have the muscle control or stamina to work on her talker for hours on end. She was using eye-gaze control — activating the cells on her talker with her eyes — and this was exhausting for her. We also couldn’t bring her eye-gaze device and talker and the power wheelchair it was mounted on everywhere she went. The eye gaze setting and calibration was knocked out of place easily by movement, and it was also useless in direct sunlight. So she couldn’t take it to camp, or on walks around the neighborhood.
It’s a relief to me that we didn’t have to go through the college application process with Sarah. It seems nightmarish and panic-making from what I see friends and close family going through. Similarly, we did not have to go through the pre-school and kindergarten application process that I was also stunned to hear about friends enduring. (We live in a rather competitive bedroom suburb of East Coast City). The county sent Sarah to a pre-school program for physical disabilities which was excellent, and to a kindergarten built around children with Augmentative and Alternative Communication needs. We really felt like we dodged a bullet.
There were of course some painful times (third grade and fifth grade) where we were fighting to keep Sarah mainstreamed with typical kids for at least part of her day. The lawyers, the IEP meetings, the educational consultants and advocates are stressful memories.
I wish I could stop the feeling that always bubbles up in me that I didn’t do enough for her. I hate the platitudes of “You gave her a good life” (as if she were a cocker spaniel) or “You were such a good mom” (What was I supposed to do, leave her by the side of the road?). I just wish I could feel some inner peace and know that I had done enough.
The First Year Without Sarah 