13 November 2013

Getting to Autism

In the recent Seattle Magazine article about grappling with an autism identity, the reader comments showed dissatisfaction with the limited portrayal of autism found in the article's content.  It's true.  The article profiled one Aspberger adult and included other snippets of information about autism that as a whole can't come close to presenting an accurate image of autism. 

That accurate, whole image is almost impossible to capture.  It certainly isn't going to be captured in a mainstream magazine aimed at generic readers who don't already have a driven interest in the topic.  We certainly can't blame the article or the magazine for being what they are. And while I'm fascinated by the meaning of words and their heft, what's most important is how we live our days, whether we say we are parents of an autistic child, a child with autism, a special child, or, just "Hudson's mom." 

Hence, a blog.  And I'm not the only one blogging, lord knows.  I'm excited to continue to capture details about the adventures of raising my son in two languages, while managing a career and a vibrant (I hope) life in the arts as well.  AND I'm excited to know that I'm capturing a story of autism at the same time. Reading other individual stories is one of the best ways to get to know this world of autism.

We had denial - I hear my own voice in my head telling one of H's pediatricians "We know he's different, and we suspect he might be on the spectrum, but I don't know that it's important yet to get an actual diagnosis..." and I hear my mother-in-law's voice telling me later that summer "I'll be happy to pay for evaluations, because I think it's time to do it", and I had relief when the first results came back showing clear developmental delays.  My suspicion that my parenting experience was somehow vastly different from others' was now validated.  Now, a year later, we do have an official diagnosis, a specialized preschool, speech therapy through Children's Hospital, and countless meetings about insurance and services.  But the most frequent comment in a quiet moment at home?  "I'm excited about the future" my husband or I are sure to say to the other.

Hudson is sweet, caring, and cuddly.  He works hard at school to manage his anxiety about other kids.  He's starting to smile at school and won't hide in public.  He's more and more chatty at home every day.  He also hits and pushes and screams and demands and can be violently unpredictable.  But I know we have it easy.  He does great at the hair salon with his favorite hairdresser, and even got his hair washed last time (haircuts are such a common  blog topic for autistic kids!).  He clutched his bin of toys and let his hair be dried with a dryer.  The kid next to him started screaming because his mom was obligating him to have his hair buzzed with electric clippers, and H totally tensed up and tried to turn his body away.  I couldn't blame him, it was painful to watch.  The clipped kid was not autistic as far as I could tell (but then probably no one could tell H was autistic that day either!) but it was a raw scene.  H, however, got his balloon at the end and skipped out happily.  I was amazed.  After reading so many horror stories, and knowing that he's more likely to act out around me than around Abuela, who usually takes him, I was braced for a storm, not for skipping out to watch the fountain toting a bouncy blue balloon.

I work every day to balance what this all means in my life as a parent.  Do I tell everyone?  Do I tell no one?  Do I make sure everyone knows how hard my life is?  Do I make sure I only say positive things in public?  Somewhere in between.  And all of the above.  I put my foot in my mouth daily.  I learn something new daily.  No day is the same as the day before, exponentially more true here than for other parents of "typical" preschoolers, and my challenge is how to explain it and capture it. I know a lot more about autism than I knew a year ago, but I'm still not an expert.  I can only be an expert in Hudson at this point, and even that is a challenge!

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