Autism Thoughts

Reminder: Tomorrow is the last day to bid in Brenda Novak’s Auction for Diabetes Research.  I’ve donated an autographed copy of Stepsister Scheme and a critique of a novel chapter or short story.  Go forth and browse!  There’s a ton of great stuff up for bid.


I mentioned a few weeks ago that my son (alias: Jackson) met his school’s criteria for Autism Spectrum Disorder.  We had the IEP (individualized education program), which went wonderfully.  He’ll be in a mainstream kindergarten class next year, but we spent ninety minutes talking about his behaviors and some of the things they’ll put in place to help out.  I expect next year to present new challenges, but I’m cautiously hopeful.

One thing I’ve noticed about myself: I can say Jackson is on the Autistic Spectrum.  I can say he has Aspergers Syndrome.  But I have a really hard time saying he has autism.  My brain just rebels at that point.  (I edited this paragraph slightly for clarity.)

Part of this is probably the evolving nature of the diagnosis.  When I first learned about autism, there was a clearer line between autism and Asperger’s.  My sense is that this is changing, moving more toward the broader autistic spectrum diagnosis.  Mostly though, it’s just hard for me to accept that label for my son.  One of the things I’m working on in my brain…

We’ve looked into getting services to help him over the summer.  But of course, autism isn’t covered by our insurance.  We’ve been looking into one program that has been highly recommended; ten sessions would be a total of $3000.

Three grand.  For ten sessions.

(Editorial aside: to the woman who responded to my thoughts on health care a few months back by saying I was an elitest, lazy deadbeat, please consider this a formal invitation to kiss my ass.)

We’re still looking into options and trying to figure out what he actually needs.  It’s not about “Autistic children need _______.”  It’s about “Jackson, who happens to be ASD, needs _______.”

One of those needs is to improve his hand-eye coordination and fine motor skills.  Building with LEGOs seems like one way to work on that.  I’ve also started him on regular LEGO Star Wars video gaming therapy.  Now if I could only get him to stop blowing me up…

One final thought.  Jackson is very rule-oriented, which I’m told is not uncommon for children with Aspergers.  Yesterday, my wife was teaching him to play checkers.  He did quite well … and then he got his first king, at which point he announced, “But kings make their own rules!”

Autism Spectrum Disorder

So a little while back, I was pondering how much to publicly share about family, particularly my children.  There was a reason for this.

Today we received confirmation from my son’s school that he meets their criteria for ASD — Autism Spectrum Disorder.

It’s not completely unexpected.  My wife is a practicing counselor.  I’ve got a degree in psych.  Both of us had noticed certain behavioral issues.

Jackson[1. That’s the name he chose for himself for Daddy’s blog] is a brilliant little kid, and he’s very high functioning.  He is who he is.  A note from the school doesn’t change that.  What it does is gives us a way to make sure he gets the help he needs in school.

Next steps are to meet with the school this afternoon, and to talk to someone about a medical diagnosis.  (If he meets the school’s criteria, the odds are very good that he’ll meet the medical criteria as well, since the schools … well, since it costs them money to provide special ed. services, they’re motivated to minimize the false positives.)

I’m still processing this, and probably will be for a very long time.

I’m not asking for advice, and I’m not currently in a space where I’m interested in hearing it.  If you decide to comment and tell me what I should do, there’s a very good chance your comment will be deleted.

He’s a good kid.  I know he’s going to be okay.  I know the rest of us will, too.  But it’s hard right now.

I don’t know where I’m going with this, so I’m going to just share a picture.

(This was from two years back.  Jackson was sick.  It’s one of my favorite pictures.)

Family Blogging

Want to see something scary?  Here’s my web site as it appeared back in 1999.  At the time, I had sold only a handful of short stories, and was pretty much an unknown.  The site was a blend of writing and personal, as you can see by the Photo Album link.  (Only about half the pages on the archived site are still live.)  Later on, I added more photos for friends and family, including pics of my daughter.

As my writing career progressed, the site shifted more toward the writing, but I still talked openly about family and kept the pictures.  Then, when my daughter was around five years old or so, I got an e-mail telling me how hot she was.

I pulled the pics that same day.

These days, I rarely even mention the names of my children.  There’s a LJ icon I use that has them, and truly determined friends on Facebook can probably find some pictures, but that’s about it.

I’m revisiting that decision.  I know most people don’t come to my blog to read about how awesome my wife and kids are.  On the other hand, my family is a very big and very important part of my life.  I love them, and I’m proud of them.  I look at folks like John Scalzi and Tobias Buckell — both are successful, professional authors, but both talk openly about their families as well.  It gives a fuller, more honest picture of them, and I enjoy that.  And looking back at the guy who thought my daughter was hot, do I really want to let some creep control what I post?

Some things I’m considering:

  1. Nothing gets posted without talking to my wife about it.
  2. If I’m going to share stories or pictures of the kids, I check with them as well.  They’re only 9 and 5, but they should still have the right to control what goes onto the Internet about them.
  3. To the best of my ability, nothing gets posted that the kids’ friends might tease them about if they found it.

That still leaves a lot for me to think about.  I’ve spoken very openly about my diabetes, for example, and people seem to appreciate those posts.  In that same vein, do I talk about the health issues my son has been struggling with pretty much since he was born?  Some of them, absolutely not — see rule three.  But other aspects I’m not sure about.

How do you make the decision about what to share and what to keep off the Internet?  What about when you’re reading other people’s blogs?  I know I appreciate those glimpses into the personal side of authors I admire, but there are also times I cringe because it feels like the author is perhaps sharing more than he or she should.

Discussion is very much welcome.

Monday Pics

Saturday was my wife’s birthday, so much of the weekend was spent doing things like making breakfast for her and the family, going out to birthday dinner with my parents, then going out to lunch the next day and watching a movie with just the two of us.  As a result, I spent zero time on things writing-related.  Nothing on Snow Queen, nothing on the new series proposal, and nothing for the blog.

Instead, have a picture of Flit with multicolored eyes beneath the Snoopy-infested Christmas tree.  (Is anyone really surprised by the Snoopy addiction?)

And as long as I’m posting pics, here’s the artwork Socchan did from my story “The Creature in Your Neighborhood.”  She drew this during my reading at Icon, and I’m most impressed.  That’s Rolly (after his breakdown), the Mall Rats, Peter the Pretendisaurus, and poor Tommy the Tuba.

Time & Priorities

My daughter is going to be nine next month.  She’s gotten old enough to understand that Daddy tends to disappear when he’s on deadline.  The four-year-old is less patient, as evidenced by his comment yesterday evening:

“But Daddy, we haven’t roughhoused together in a while today.”

The “today” makes me smile, but this kind of comment is still a powerful gut punch.  Writing is my second job, and that means a lot less free time.  I’ve talked before about trying to balance writing and family and everything else.  It’s not a problem you ever solve.  You just do the best you can from day to day.

I’m trying.  My daughter and I are still doing karate together every week, and I swiped an idea from one of my readers and started taking her out to breakfast once a month, just her and Daddy.  (I’m a putz and can’t remember who mentioned this, but thank you!)

This weekend, after finishing the latest draft of Red Hood, I blew off final revisions so my son and I could play LEGOs together.  (I dug up the instructions and totally built this guy, who now watches over my son from atop his dresser.)


Off-topic, when did LEGO start using plastic fiber optic technology???

Anyway, the point is it’s an ongoing struggle to make time for everything that’s important.  Nothing gets as much time and attention as I’d like.  I’d love to spend every day playing with the kids and spending time with my wife.  I’d also love to have eight hours a day to work on the writing.  Then there’s the whole day job issue, not to mention sleep.  And don’t get me started on housework and yardwork.

Since I can’t give everything as much time as I want, the key has been to prioritize, and to make sure I keep trying to give time to the things that matter.  Right now, Red Hood’s Revenge has moved up on the priority list.

But in a few more days, I’m turning that sucker in.  I’ll have to start working on book four of course, not to mention thinking about a new book idea I’ve been playing with, but the urgency will have passed.  I’ll be able to adjust the priorities again, moving things like date night with my wife or roughhousing with the kids back up where they belong.

Parenting Thoughts

I’m not always a great Dad.  I understand that, and I try to work on it.  Like anyone, some days I do better than others.  For the most part, I think I’m a good Dad.  And every once in a while I feel like I get it right.  Joining karate with my daughter was one of those victories, giving us something to do together every week, an hour of working out and the drive to and from, just the two of us.

Another was with my four-year-old son a while back.  He had been having trouble settling down to bed.  We’d put him down at nine, and he’d bounce right back out into the living room with the cute grin on full power.  (Cute grins are deflector shields for preschoolers, protecting them from parental wrath.)  We tried a number of different tactics with little success.  Then one night I tucked him in and asked if he’d like a song.

He said yes, of course.  Usually mama sings and I tuck him in, but this was a chance for a bonus song from Daddy!  He loved it.  So I told him he could have a Daddy song the next night too … as long as he stayed in bed tonight.

For the rest of the month, there was maybe one night when he didn’t settle down.  That cost him his Daddy song the following night, and he’s been fairly good about settling down ever since.  Victory!

Then last night I was working with him on drawing, learning to hold the crayon and important things like that.  He’s a bit behind his class when it comes to fine motor skills, so I figured it would be good to practice.  But he gets frustrated when his physical coordination can’t keep up with his brain.  We were working on drawing circles, and he was getting cranky and frustrated and wanted to quit.

So I said, “Now we’re going to draw bad circles!”  He got a goofy smile on his face.  “Bad circles?”  I scribbled a zigzag on the paper.  “That’s a really bad circle. Can you do that?”

We had a blast taking turns trying to draw a worse circle than the last. And then something odd happened. He scribbled a quick loop on the page, and it was the best circle he had done all night. More importantly, he was relaxing and having fun. He even colored a (bad) picture of Optimus Prime that I drew.  (My Megatron was apparently unrecognizable, even to my Transformers-crazed boy.)

None of these are huge triumphs for civilization.  But sometimes the small victories are just as important, and just as worthy of celebration and sharing.

Jim C. Hines