The Speed of Dark

Here’s  a great article on kids, relatives, and holidays, focussing on the issue of forcing “respect” and “affection.”    Although I think teaching kids about boundaries and their right to say “No” to unwanted touch is important for all, it’s particularly important–and difficult–to think carefully and clearly about these issues with kids who have developmental differences.

Many people expect children to be available to be touched, hugged, kissed, and cuddled at will.   Strangers will pat a child on the head or shoulder and expect the child to accept the touch without complaint–even to smile at the stranger.   Relatives definitely expect a greeting and some sign of affection, and expect to be able to show their affection by touch.    That was certainly true in my husband’s family–my mother-in-law simply refused to believe that our son did not like her tickling his toes or hugging or kissing him.

As the article I linked to suggests, it’s important to have conversations about expectations from visiting family before they arrive.  Long before and repeatedly, if possible.     The more resistant they are to the boundaries parents set–and the boundaries the child might set–the more you might consider whether the visit is really a good idea.    Yes, families are important–but they can be important bad influences as well as good ones.    If they’re intent on doing things the parents know are hard to impossible for their child to handle…then they’re no better than any other person, stranger or not, who won’t respect boundaries.

Respect is a two-way street.    Kids  learn real respect from adults who show real respect to them–they learn respect as an interpersonal skill by example.    And that includes asking before touching, accepting that a child is not a toy to be played with as an adult pleases.    What they learn from adults who grab them, muss their hair, insist on hugging or kissing when the child doesn’t want to is not respect or affection but that even in the family they aren’t safe.

Advocating for a child is just as important within the family as outside.  Early on, I didn’t do enough of it–in part because my own background had not provided me with a good understanding of boundaries and my right to set them.

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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So…apologies first, excuses next.   I have shamefully neglected this blog for far too long.   The excuses include having a publishing schedule for fiction that meant writing books half-again longer in the same period of time, the need to keep up the blog for those books and increase the posts to it with the publishing schedule, and some serious health issues in the family (multiple hospitalizations, tests, and surgeries for one family member in the past 18 months.)   But still.  This blog deserves at least a weekly something, and yet…I can’t promise it’s going to get it.   I’ll do my best.

Topics keep coming up, and I make note of them and sometimes even start blog posts over on the writing side of the computer (drafts of posts are in the vaults of the data drive.)    But they haven’t made it through editing and over here.   I’ll be using up these first, in hopes of having time to do some others later.    They’ll be in order of  how finished they are.   (Yes, that sounds lazy.  Yes, it probably is.  But I have a fiction book on deadline and that fiction buys the groceries and keeps power to the computer.)

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.

Welcome to Guest Blogger Darcy Javanne Kramer!

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First, a quick introduction:  I am a counselor at the Disability Resource Center at Portland State University, the largest four-year public college in the state of Oregon.  Elizabeth asked me to guest blog about transition from high school to college for students on the spectrum, which I gladly accepted.

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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 friend from the area emailed me today to tell me that I had wrongly reported the details about the woman in Irving who killed her two young autistic children.  Her husband is alive; she is not a widow.

I didn’t bookmark the other sources of information I’d found, so now (of course) I can’t find them, to see where they got theirs.  My friend thought I’d confused two different tragedies–another killing of a child by a mother occurred not that far away, with different circumstances.  Whether I conflated stories about two different killings, or the sources I read had already done that, it’s still a mistake, and I failed to check deeply enough.

So death of a spouse was not part of the problem.

I apologize for sloppy fact-checking.

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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