The Speed of Dark

October 5  (today as I write this; I may not finish it by midnight) is the 21st anniversary of my mother’s death, so naturally I’m remembering details of that day.

One of the memories is of someone who arrived about half an hour after she died–unaware of that fact–to visit her.  When I told this woman, she was of course shocked, and then blurted out the least suitable thing she could have said:  “You should know that although everyone in town thinks you’re a bad mother, I think you’re doing the best you can.”  That would be rude (and unanswerable) any time, but right after my mother died?   I was speechless with shock.  She went on to detail why people thought I was a bad mother (my kid was autistic: proof enough, 25+ years ago, that I was a bad mother, but she was full of specific things I was supposed to have done or not done.)

This is definitely something not to say to parents of disabled children.

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Parental fear, that is.   All parents worry about their children–how they’ll get along in the world, how they’ll be treated–but parents of kids with disabilities worry even more.    Many of us experienced bullying, physical or verbal, and we don’t want that to happen to our kids.

Fear of the child being rejected–or the parent being labeled a bad parent–or both–puts parental fear in control of parental decisions….and that’s not healthy.    This brilliant post by Michelle Sagara offers clear thinking and creative approaches to the challenge of overcoming parental fear in the best interests of the child.

In fact, several other posts are equally brilliant (I found myself nodding along–some of her strategies were just like mine, and some were better.)

Here’s the first one on bullying in junior-kindergarten and another about the kinds of social difficulties kids on the autism spectrum have .

Although kids on the autism spectrum do have specific and characteristic problems that make interaction with them (when young, especially) difficult for many…the parenting problems that Michelle discusses are common to more than families with someone on the ASD spectrum.   Her analysis of early childhood social settings and social groups is applicable to many situations.

Some of us are old enough to remember the Pogo cartoon in which a character announced that he didn’t want “ups and downs”–he wanted “ups and upper ups.”  That’s certainly what parents want…kids who keep growing and developing.   When the general trend is upward, and about the typical speed of progression, the “downs” don’t bother parents as much.  But when a child develops more slowly…then the downs are much harder to live with.

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A woman in Irving, Texas killed her two autistic children, then called the police and turned herself in, saying she didn’t want them to live like that.
The story, and the reactions to it (both here and the Star Telegram: http://www.star-telegram.com/2010/07/20/2349223/09-cps-inquiry-on-irving-family.html) reveals a lot–but not enough–about the woman, her situation, the state’s social services, and the attitude of the public towards women who kill family members, including children, v. men who kill family members, including children.

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All the furniture to be moved is now at M-‘s present address, ready for pickup Monday morning.

A few more boxes will be packed today.    SO glad we’re moving a twin bed and not a double!   I was able to get mattress and then box springs into the hall myself, while the guys moved the red chair from the old big van into M-‘s present address.   The bedframe had to go out through the window (very wide windows in front of this house) and no panes were broken.    It was a tricky maneuver, as the side rails of this bed do not come off with the tools we have, so the whole bed–with its headboard and footboard–had to be moved in one piece.   R- thought out how to do it and he was right.

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…also known as the last three months.   It’s been a roller-coaster, a whirligig, and a challenge in every dimension, but here we are facing the next with renewed excitement.

First there’s the college situation.   Our son did in fact have problems typical of autists in both the Transition to College and the Reading classes.   It’s worth examining these to see how his autism affected his understanding of (clear to most people) instructions.   He had been working willingly and consistently, so it wasn’t lack of motivation or laziness causing the difficulties.

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M- has done so well the past few weeks with his cellphone–both making and receiving calls–that I didn’t expect a glitch today.    I phoned him when I reached Austin, to tell him I could pick him up at the bus stop west of Northcross Mall, to take him to supper before ice skating, as it was raining.   R-, who rode with him the first times,  had told me which bus stop he got off at.    I thought M- understood and would repeat what he’d done before. Read the rest of this entry »

We’d planned to have a parent ride the buses with M- and be available nearby on campus for the first month…but a combination of things (including M- commenting on the way home one night in the second week that he thought it would be more fun when he could go alone)  led to this morning…we dropped him off at the bus station 20 miles closer to the city, where the express bus runs to downtown.  From there he would transfer to a local headed back north and end up at the campus.   He was supposed to call us from campus when he arrived, which should’ve been about 8 am.

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M-‘s second week of college was complicated by other medical problems in the family, but he is still happy to be going and engaged in his classes.   He is taking notes in class, and can usually give a moderately coherent report of the class.   He is working diligently on his homework.  He survived his first in-class quiz (pre-algebra) and made a passing grade (78/100.)   That’s higher than I made on my first calculus quiz and higher than he made on his assessment test before entry, so we’re very pleased.   Read the rest of this entry »

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 »