30 October 2007

You're probably wondering where I went, why this site has gone so long without updates.  I'm still here.  Damian's still here too.  Right now he's sitting on the living room floor playing Zelda Ocarina after a sleepover at a friend's house. 

But it doesn't feel right to write here on a regular basis anymore.   The reasons are complicated, but it's partly that I need to focus on writing for publication.   Also, and more importantly, Damian is past the acute stage of this condition. He's doing well and I know will continue to do well.  So our ongoing story is no longer as relevant to my readers.  It's clear from the email I get that the vast majority of parents who come here are reeling from the diagnosis, seeking a crystal ball into the future, trying to figure out what to do to help their children.

 I am profoundly glad that the words I wrote the first few years after Damian's diagnosis have offered comfort and insight for so many people.  It means the world to me.  I remember all too vividly how lost I felt at the beginning, how horribly alone.  So I'll keep this site up for people to find in their searches for autism and Asperger's and and scripting and floortime and sensory integration dysfunction and is my kid on the spectrum and can he improve and what can I do to help it happen? 

But the issues we face now as Damian's parents are very different than the issues we faced at the beginning of the journey, and I'm not sure how relevant they are for most of the people who visit this journal. 

There's another factor, too. Damian is now nine years old, and very curious and opinionated.  He knows a decent amount about his own personal history: how he learned to talk, how an occupational therapist helped him handle getting his teeth brushed, how he used to have a whole host of fears and rituals.  He also knows about some of the issues that remain:  processing speed, social awkwardness, an often-too-quiet vocal tone, and others.  But he doesn't know his official diagnosis (which a neurologist recently changed to Asperger's syndrome).  And we're not quite ready to tell him.  We've given him the groundwork, but the timing of the question is up to him.  I look at it like the universal question,  "Mommy, how are babies made?"  He'll ask when he's ready to hear the answer. 

How is this relevant?  Well, as I said, he's a relatively self-aware nine year old.  He loves looking over my shoulder to see what I'm doing on the computer.  He always asks me what the book I'm reading is about (or simply picks it up and reads the jacket copy) and what stories I'm writing.  I could continue to write about him.  In fact, I probably will.  But it can't be an ongoing, intimate account of his therapies and progress, not right now, not without his involvement.   It doesn't mean this site is irrevocably dead.  Just dormant. 

Someone recently found Hidden Laughter and read through the early entries, which she said sounded a lot like her daughter, then emailed to ask me how Damian is doing now.

This is what I wrote her: 

If I'd been able to get a glimpse into the future when he was diagnosed six and a half years ago, I would have been relieved and pleased.  He's bright, interesting, and very affectionate.  He has a best friend; they play these long, involved adventure games with Lego figures and clamor for sleepovers.  He's playing the drums (and is very very good at it), taking tai kwon do (I've never told them he's on the spectrum and he's progressing nicely through the belt levels), and reading Harry Potter to himself (he's on the third book).  He loves outer space and his two kitties.  He has a lively sense of humor.  I enjoy talking with him and seeing the world from his point of view.  In some ways, he's mature for his age, in other ways he's immature.  He's a real mix.

He definitely still has deficits. He doesn't really understand social interaction all that well, and doesn't read social cues the way other kids do.  This got him in trouble last spring, so we decided to enroll him in a private social skills group, which should be starting soon.  He's in a new school now, and has fallen in with a great group of kids, who accept that he's shy and a little slow to process what they say.  They play together every day at recess, with Damian definitely included.  His slow processing speed makes homework a challenge sometimes.  He still has speech therapy to work on his breathy, diffident vocal intonation as well as social/pragmatic skills, and also occupational therapy to help with writing speed and sensory integration (though that's much improved of late).

I don't think the work or worry ever stops, but the nature of it does change.  I now know he'll be okay as an adult.  His self-care skills are pretty good, he's learned good self-regulation, and he's interested in other kids and in learning about the world.  I worry about middle school, which can be a huge challenge for kids with social difficulties, but we can only take things one step at a time and keep offering support as we go along.  I expect that dating will be fraught with perils, but I also expect that girls will be interested in him (the shy, slightly aloof boy has a certain appeal), and I have every expectation that he'll end up in a long term relationship and probably marriage.  He is openly affectionate and loves deeply. 

In truth, every child is different, and what your child may look like at nine may be quite different from Damian at this age.  Damian's friend Corey is just as far along as he is.  In some ways, farther. He was always more socially comfortable with his peers than Damian was, and that continues to be true.  He makes friends easily and blends in more than Damian does.  On the other hand, he gets stuck when he has to come up with a story for school, whereas Damian does that with ease (Damian's ideation is better), and I can't say for sure, but I suspect he has more remaining rigidities than Damian does.  They have different strengths and deficits, but they're both progressing well. 

A few final notes:  to my chagrin, I have to admit I've not been wonderful at responding to email from this site.  If you've written me but not gotten a response, know that I appreciated hearing from you and will try to write back, even if it's months out of date.  But also know that I'm only a parent, not an autism expert.  I can't give much advice, and I don't have a lot of answers.  I only know what worked for my son, and most of that is already written here on this site in one form or another.  


And lastly, because I can, here's a highlights list, some of my favorite Hidden Laughter essays:

Moonshadow.  This one is painful to reread; it showcases my complete state of denial.  But it did capture the strange poetry of Damian's pre-diagnosis scripting. 

Definitions.   Different definitions of a child and of a condition, implying different views of his future. 

Floortime.  We'd only been doing floortime for a month, but I got the essentials right. 

I Want Juice. What it took to get to those words.  

Denial.  Powerful, hard to fight, and nearly inevitable, I think. 

At the Mike, a transcendent moment.  Maybe my favorite essay. 

Damian Bear.  Floortime play in action.  Looking back, I did more leading than I'd ideally prefer, but hey.  It's all a learning process. 

That Word.  On the one year anniversary of the first time someone confirmed that Damian was very likely on the autistic spectrum, I mused on the meaning of the word autism

Just Do It.  This grew out of my frustration at parents' reluctance to get their children tested, to take action to help them. 

Parallel Universes.  I'm not extraordinary, hardly a supermom.  I'm one of many going through a similar process.  We're parents like everyone else, but with some differences in our perspective.


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