In the Land of Autism

zach-bday-03-0404

Has my son made the story of my life?

I wonder about this.  Most days my answer is yes.

Without him to define me,  I feel quite boring really. He is a bright star in my universe, a super nova.

I can say that my life has meaning, taste, context, because of Zachary. He is the reason, the flavor, the backdrop of my story. Inside my head is another story, a pretend one that is soley my own and I spend too much valuable time there – my own Narnia.  My kid, though, he is the real deal.

But, I don’t want to get ahead of myself. I should start at the beginning. My beginning I think, was the day he was diagnosed with autism. That was six years ago. Since then I have been to a world I never knew existed – a world crowded with wonderments just like him and flocks of bewildered folks just like me. Life has never been the same.

But then, neither has Zach. He is still evolving, maturing, growing. Which is something I couldn’t wrap my head around at the start – I felt like he would never move forward. I thought all the challenges we were dealing with would always be there and I was ovewhelmed with his future.  His “future” was a palpable presence, a weight that I was sure would crush me and I was convinced that I was his Atlas, that I would have to knuckle down or knuckle under. Perspective is such a funny, dangerous thing. I am reminded of  those pictures within a picture – do you see a beautiul young woman in profile, or an ugly old hag – it’s all in how you look at it.

For those first few years all I saw was the hag, and I hated her. I was hell bent on getting rid of her; using vitamin supplements, epsom salt baths, drug therapies, cod liver oil.  I bought dozens of books, attended conferences on various new therapies, interviewed (more like interrogated) all the parents, doctors and autism teachers I encountered. I kept food diaries and documented every word or phrase Zach uttered in the hope that I could vanquish the changeling that had taken over my son – all without seeing he was right in front of me.  I also ignored my marriage, my other children and myself.  I was consumed with hoping.  All the while I thought I was doing the right thing for Zach, I felt selfless, self-righteous, and long-suffering. I embraced misery and wanted a miracle in return.  People – strangers, friends, family – would compliment me on my obsession, send me articles, offer suggestions, and I continued on, lost in the woods – more lost than Zach ever was or ever will be. I went off the reservation, as they say, and the journey back was messy, involved a lot of drinking, therapy, anti-depressants, marriage counseling, but most importantly, letting go.

Letting go from my screwed-up perspective meant giving up, losing, being a quitter. That just sounded lazy and irresponsible  . . .and tempting . . .what if I let go, what will other people think, what will happen, will my world implode? So, in fits and starts, I began to pull my fingers out of the dike. It felt terrible at first, shameful but in time I began to see – no leaks, no implosions, no retribution.  And so, Atlas shrugged and the world kept spinning.

And the strangest thing of all? Everything began to get better. Living beats surviving any day. Our family settled back into a rhythm and little things began to fall away. I threw out the cod liver oil and the drugs and concentrated on the old stand-bys – family movie nights and bedtime stories. And, we all  made progress.

I still have hopes, I still want more connection with Zach, but I want it on his terms and his timetable.  And I want to keep learning from him because I wish I could be more like him. I would like to be so brave that I could shout out loud when I’ve had enough, chase after beauty where ever I find it, ( just to get a closer look) or embrace a stranger who smiles at me.

Looking back, I know every step I took was the step I needed to take, that I am here because I was there.  I  learned that I don’t have any control over “the future” and that to let hope in I have to take my hands off its neck. I’ve learned that meeting pain head-on is less painful than letting it catch me.  As Dorothy put it in the Wizard of Oz, ” if I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because if it isn’t there, I never really lost it to begin with.”

3 Comments

  1. Chris Holmes said,

    March 17, 2009 at 2:40 pm

    Our situations — your Zach and my Charlie — are so different, yet our struggles are so similar. I’ll be reading more of your writing throughout the week (I teach high school and it’s Spring Break), and I’ll be sending you some of mine, as well. Don’t feel compelled to comment on it (or even read it), but it will be there if you’re ever curious. Thanks for sharing.

  2. Christina said,

    March 12, 2010 at 2:40 am

    Wow !! all I can say is WOW !!! No really that was so beautiful raw but very tender at the same time. I too have a son who is on the spectrum with other disabilities. Garret is so full of wonderment and love , He says a hug makes everything better. Yes he can talk after 8 years of speech therapy. I’m so glad that I checked my email tonight it has been a long day. I will certainly return to read on. Thank you for sharing

  3. Adieren Roark said,

    July 28, 2010 at 1:02 am

    Love you and your eloquent, honest & funny writing. Love Zachary and all that he teaches us, his parents, his siblings and his friends.


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