The Speed of Dark

One of the things many parents wonder about–and worry about–is whether their kid with disabilities will be able to go to college.   It’s pretty easy, sometimes, to come up with a firm “No, sorry, this child will simply never be able to attend college” and at that point concern can shift to other ways to prepare the child for adult life.  And sometimes it’s pretty easy to see that a given child will be able to–colleges now accommodate students in wheelchairs, for instance, much better than they did fifty years ago, when simply being unable to walk unaided barred wheel-chair bound students who could not reach classrooms or labs or rooms in the dorms.

It’s the borderline ones–the “maybe” cases–that cause parents the most angst.  I know, because I have one of those.    And yet…in time, with enough hard work from everyone involved…sometimes “maybe” turns to “yes.”   Yesterday we had a taste of “yes.” Read the rest of this entry »

It’s been an interesting couple of weeks, as our son, with his dad’s help, has figured out a way to use public transportation part of the way to community college, and has continued to try to improve his reading skills in preparation for his first classes.   They’ve walked around on the campus; they got his student ID and his bus card and so on and so forth.  Read the rest of this entry »

If you can’t drive, and probably won’t ever drive, then learning to use public transportation is a necessity.   We’ve worked on this since our son was quite young, and by the time we faced the “how to get him to his classes in the city” he had been on buses, trains, subways, and airplanes (oh, and ferry boats) so we did not expect much difficulty with this. Read the rest of this entry »

Our son’s been increasingly interested in getting more education, for the very practical reason of earning more money…having the part-time job has taught him that he’s unlikely to ever make enough to live on from it, even if it were full-time.

So we took him to the nearest city’s community college to find out what was available.  Very sensibly, they insist on all incoming students (not just ones who have special ed and resource courses in their high school transcript) taking their assessment test.    I had been encouraging him to read and write something every day, and he had been, but what with my own work I hadn’t been teaching him.   We had hopes he would do well, at least on the math part of the test.

He didn’t.

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One of the things people sometimes complain of with persons on the spectrum is their “rigidity” and their strict interpretation of,  and adherence to, rules.   Rules they’ve internalized, that is.  But the flip side of “rigidity” is “reliability”–a trait prized by employers.    I was strongly reminded of that today, when our son left me an email (at 7:30 am, that I didn’t see until much later) that he was going out with the man who takes him to interview for other jobs–and I knew he needed to be back in the afternoon to work a shift at his current job.

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This evening our son came over to the house around 7 pm.    I was polishing silver.  He said “Hi” and I said “Hi” and he wandered around in a vague sort of way.  I asked if he’d eaten supper yet and he said yes, he’d had spaghetti and meatballs.  I finished the spoons I was working on, put them away, and went back to my study to get some work done until Richard came in from the land, since M- hadn’t said he wanted anything and he often uses Richard’s computer (it has broadband.  His house doesn’t.)

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I had a lovely visit to Clemson University earlier this week.  The Speed of Dark had been chosen for the freshman summer reading, and I was invited to come speak to the freshman class (as well as meeting some faculty, trustees, administration, and more senior students.)

Two things in particular impressed me.  One was finding out that Clemson has a student organization for autism awareness, founded by some remarkable students with innovative ideas.  I met three of them–two were pre-med with hands-on experience with disabled kids.  Wow!   The other was hearing that the book opened a dialogue among faculty and administration members who had people on the spectrum in their families, but had previously felt isolated–unaware of the number of people in their community who were affected.

This is not the first “group reading” I’ve heard of that opened the topic among friends and colleagues, and it always moves me to that “blurry screen moment.”   I think, in part, it’s because Lou is not a scary character–he’s someone people can talk about without wincing.     At any rate, I’m grateful to have the book having such good effects, where it does.

So, many thanks to Clemson U. for choosing the book, and inviting me.  I met fascinating people, saw a beautiful campus, and got to speak to over 3000 people…talking about how it was to discover our son was autistic and how rewarding, as well as challenging (probably because it was challenging), the experience has been.   Some of these freshmen will have a child on the spectrum–if they can come to that experience without the fear so many have suffered with, if they can feel free to use their own intelligence and creativity to work with their child, then that’s a great benefit to them, their children, and society.

Sometimes I feel like jumping up and screaming “FINALLY!” at the research end of things.   This summer there have been several really good research reports, some mentioned in national media as well, on autism-spectrum issues.  But what I want to highlight tonight is the one that sparked the “FINALLY!” reaction.

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For parents,  a child’s “pathology”  or diagnosis may sometimes seem to encompass the whole world.   You’re in the trenches, dealing with it every day–the child’s behaviors, the child’s struggles, the reaction of those around you to the child and the child’s struggles, and your struggles, the therapy appointments, the judgments so many people make about you as a parent and your child as a child.   Anyone in any of life’s “trenches” (whether it’s a health or economic or social trench)  begins to feel that the sides of the trench and the shells raining down from above define reality.

But that’s not the case.

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Today I gave a presentation on The Speed of Dark over the internet to a group at Howard Community College in Maryland–while sitting on a comfortable couch in Texas.  Technology has advanced to this point, and I wanted to try it–besides, I knew I would not be able to travel to Maryland in person in the time-frame they wanted.

What fascinated me, besides playing with technology I didn’t know, was the degree to which this particular setup messes with sensory input.   I had a light-bulb moment when I realized that the audio breakup (just enough of one) and the blurriness of the faces looking back at me–blurry enough that I could not see any of the usual cues of facial movement–and the delay between when I said something and when they saw/heard me say it–all made my experience more autistic than I’d expected.   I was having to put way more energy and concentration into figuring out their reactions, and what they were saying than usual.

The organizer sent email telling me that discussion went on in the hall after I “left”, which is a good sign.   I hope it was as valuable for them as it was for me.