The World of Autism

This morning we are going to an open house of yet another special ed. school.   The first time I toured a school for autistic children, Emma had been diagnosed a few months before, in the fall of 2004.  We were still in shock and reeling from the new world we suddenly found ourselves in.  The school had locked doors and a security guard at the front desk.  It was clean with walls painted in cheerful colors.   The unmistakable high-pitched keening cry, a sound one only hears coming from an autistic child in distress, emanated from a number of the classrooms.  I remember fighting back the urge to flee.  All the parents were herded into a little room with cafeteria-style tables and chairs.  No one sat down, as though to do so was more of a commitment than any of us were willing to make.

It was my first foray into the world of special education schools where the parents do not speak to one another with the cheerful optimistic small talk one finds in a regular school setting.  The question and answer period is often marked with parents breaking down in tears mid sentence.  There is an overlay of sadness, often despair, parents (and I am describing myself as much as I am of others) who are still in a state of profound disbelief.  There are always a couple of parents who seem to have made it through the mourning process a bit quicker than the rest of us, the ones who seem to have found a level of acceptance, which the other parents have yet to realize.

Visiting various schools now, is different in that Richard and I know what to expect.  We have gone to so many in the intervening years since Emma’s diagnosis, we are better prepared.  And yet, I am still caught off guard, on those rare occasions when I find myself unable to contain my emotions in the middle of an interview.  The tell tale break in my voice, the constriction in my throat, the flood of tears, which inevitably follow and the attempt to pull myself together.   The admissions directors are so used to this they all have Kleenex boxes prominently placed on their desks.  They take it in stride and are almost always sympathetic, brushing aside ones apologies.  Nothing like a child with special needs to make our facades crumble.  Talking about the weather just doesn’t hold much appeal when your child’s life is on the line.

“But I didn’t realize it was so serious,” someone I know said to me once when I said I couldn’t donate to his charity, citing Emma’s autism as the reason our finances were stretched so thin.

Perhaps when compared to other childhood afflictions, autism seems like lightweight stuff, but talk to a parent with an autistic child and you’ll come away with a different sense.  We are all desperate.  I have yet to meet a parent who isn’t.  Some of us have more acceptance, have managed to find ways to deal with our endless stresses better or are better at putting on a cheery front, dig a bit and the darkness, the pain is always there.

I have a great friend who said to me once, “Don’t take this wrong, but whenever I’m really down about something going on in my life, I call you and feel much better. “

I know what she means.  I have a good friend who’s going through a truly horrific divorce at the moment, everyone’s behaving badly, their child caught in the middle and I feel such relief, because in addition to what we are going through with Em’s autism, we could be in the midst of that as well.  Thankfully we are holding onto each other, leaning into one another with the full weight of our emotions.

“You’re like an ox,” Richard said to me once referring to my healthy constitution.  Then he broke into a rousing rendition of – “She’s a brick… (beat) house, mighty, mighty…” making us both collapse with laughter.

Richard and I are strong and as a team we’re even stronger.  It’s going to take more than autism to bring us down.

2 responses to “The World of Autism

  1. Hi Ariane and Richard!

    There is yet ANOTHER book I was thinking you guys and Nic would enjoy. It’s called Rules, and the author is Cynthia Lord. It’s about a pre-teen girl named Catherine and her feelings of embarrassment/responsibility regarding her little brother, David, who is autistic. It’s a really engaging book with great characters, and has a wonderful touching and humorous tone!

    Please feel free to tell me to can it on the book recommendations, by the way! I myself have not had a second to read anything in months, so I can imagine how busy YOU guys must be!


  2. We love your recommendations and have purchased every book you’ve recommended! Including this one, which you recommended over the summer and, which I dutifully bought. Nic read it with interest. Sending you love. Keep the recommendations coming. XXX

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