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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M- is now in his sixth week of living on his own in an apartment in the city.   I haven’t been to his apartment since week four;  R- has picked him up on Friday to come  up here for Friday night through Sunday morning, then R- takes him to church, and then ice-skating.   (The Sunday bus schedule makes it impossible for him to navigate apartment to church, or even count on a bus home from ice-skating.)  Last week, M- managed both legs of the afterschool trip to the ice rink and then home to his apartment.

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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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Last Sunday,  M- left his keys up here (50 miles from where he now lives) and so after church he had to go to the apartment offices and be let in to pick up his spare keys.   Wednesday, when I was going to the city anyway, I took his keys down to him and tried to get his router hooked up properly.  Had to call for help from techie friends.    By then he had been two class two days.   Thursday,  I took him grocery shopping in the evening–wasn’t time on Wednesday, thanks to problems with router.    I often drive to the city two weekdays, once for voice lesson and choir, and once for fencing practice.  But it had rained, so the yard wasn’t good for fencing, and I did the grocery shopping with M- early enough that I was almost home by nine pm.  This morning, R- picked him up from the apartment to drive him to church.

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It was all moving, actually.  One of us was down there every day (husband on Monday and Friday, me on Tuesday, Wednesday, Thursday) and M- came home Friday with husband for the weekend.   Or part of it.   Like many college students, he brought laundry to do at home (but he did it, not me.)   Read the rest of this entry »

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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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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