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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This is the start of M-‘s fourth week in his own apartment an hour away in the city.   Yesterday evening, I got email from him saying he had mail from the city, and was supposed to take something to the city offices and have a stamp, but he didn’t know where the city offices were and did not have a stamp in the apartment.   He had sent the email in the afternoon; I checked email after supper.  I phoned to ask him what the mail had been, and was prepared to guide him through whatever it was or deal with it on my Wednesday trip to to the city.   It took awhile to get clear what the mail had been about (note to self–still need more work on comprehension of questions and providing direct answers), but then came the marvel…a milestone indeed.

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Sunday we moved the non-furniture stuff into M-‘s apartment.   A couple of trips up and down the stairs, and we were all glad someone else would be humping the bed, chairs, and big round table up there.

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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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So after five weeks of classes, M- is still engaged and enthusiastic.   He’s managing the bus rides alone, using his cellphone to connect with us, and doing his homework both online and on paper.   We’ll find out next week or the one after, when grades are posted, how he did in the first part of the semester.   He started back to part-time work this week, two days, and says he’s keeping up with his homework.

He’s having some problems with the verbal part of one class that requires verbal class participation (he says he can’t tell when it’s his turn to speak and when he should stop–not surprising considering his speech difficulties) and I think his reading comprehension is still lagging.  But immense gains, nonetheless.

M- will have hours at his part-time job this week, in addition to his classes (first time he’s had work hours since December.)   He was missing his job (bussing tables at a pizza place) and thinks he can handle both.  His performance in the classes has been excellent so far, so…why not try it?  As he moves to more advanced classes, he may not be able to do it all, but now he’s in the groove with these. Read the rest of this entry »

Last week, M- soloed on Thursday and a wild Thursday it was.  Today was a completely different after-class schedule–two buses, but not the same two buses, all the way out of the city to the terminus at Leander.    We dropped him off, asked him to call when he got to campus, and again when he caught the second afternoon bus…or if he had a problem. Read the rest of this entry »

You’ve probably heard of this movie.   If not, or if, having heard of it, you had reservations about it (I did), here’s the good news: it’s better than you think.  It’s an incredible, brilliant movie that shows Temple Grandin’s triumph over both the problems autism gave her, and the society that did not have a clue and did not believe autistic people had a future.   And it shows the value of her life’s work, her designs for livestock management.  Because of her, half the livestock facilities in the world–not just here–handle their stock more humanely.  And–(yes, there’s more) it shows how she thinks–because it is a visual medium, a movie can show the pictures she thinks with. Read the rest of this entry »