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.

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.

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 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.

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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