The Speed of Dark

My publisher, Penguin Random House, has chosen The Speed of Dark as one of their books to highlight for National Autism Awareness Day,  April 1, 2016, in conjunction with Autism Speak’s Light It Up Blue.   And of course I’m excited about that and absolutely delighted to be part of the display.

It will be on the elevator display, and also in the main lobby.   They’re giving away some copies as well.  If you’re in NYC and can drop by their location, 1745 Broadway,  you can see not just my book but other of their books about autism.   (If you haven’t seen that lobby, it’s worth a look–I was awestruck the first time I saw those tall, TALL walls of books they’d published.  It still gives me a thrill.)

I wish I could be there to see it, so if you do go, please take a picture and send it to me via the contact link.   I’ll post any pictures of the event that I get on this blog, with attribution to the photographer.

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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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 »

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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