Before...and what came After

When Aaron was younger, I tended to mark time by using what I call the "Before and After" Timeline.  "Before Diagnosis," or "B.D.," if only because I can't pinpoint the exact day or time when my bright, responsive, smiling little boy; the one who met all his first-year milestones right on time (early, in some cases), began to slowly slip away from us; retreating into a strange, silent world where no matter how desperately we tried, we couldn't reach him.  Even though there were a few minor clues very early on that nudged gently at my intuition, the change was so subtle, so gradual that even when the niggling worries at the bottom layer of my consciousness attempted to claw their way to the surface, I still managed to rationalize and banish them back under to their dusty, unexamined little corner of my brain.

 Aaron, Before

I have a clear memory, however, of the day when everything finally came streaming out of Pandora's box and refused go back in.  It was at the park; Aaron was 17 months old.  There were other children about his age, climbing, sliding, squealing, laughing and interacting with each other while Aaron sat, his little body turned away from the other children, his eyes and face nearly expressionless, watching sand sifting over and over through his fingers.  It was a moment of such utter, crystal clarity; the internal confirmation and acceptance that something was simply not right was so stark, so true, and so final that I felt the hair on the back of my neck standing up.  But I was nearly alone in my belief; family members (except for my husband) and friends told me I was being "overprotective" and "over-worried;" doctors and therapists told me to go home, stop worrying and bring Aaron back after he turned three.  So, as long as there was no official reason for Aaron's delays and differences, most of the time I could live in my bubble and pretend everything was normal and fine.

That was Before.

When the diagnosis finally came at the age of three, the bubble permanently burst.  I spent two weeks crying non-stop; then I got up, dried my tears, rolled up my sleeves, and planted myself in front of my computer.  There was no more time for tears.  I had work to do. 

Thus began the A.D., After Diagnosis.

 Aaron, After

After a few years of After; after Floortime, speech therapy, IEP meetings, and especially the help of a brilliant, passionate, cutting-edge pediatrician, I came to understand that the Before/After differentiation is actually meaningless.  I had wanted so desperately to go back to Before; before Aaron slipped away from us; before being slapped with that stigmatizing, isolating, and artificial label.  But gradually it came to me: there is no point in dreaming about before, because there isn't, will never be, any going back.  There is only going *forward* and figuring out the best way to play the hand we've been dealt.

 The more I learn and understand about autism (or rather, the immune dysfunction and inflammation that leads to the disordered neurological symptoms that are called autism) -- the more I see him gradually coming back to us: the dark circles under his eyes gone, the flat affect and dullness replaced with brightness and understanding; his words, his sense of humor, his ability to empathize, his spark, all returning -- the more I understand that ultimately, "Autism" is a word we need to use when it is helpful to Aaron, but never, ever to define him.  Autism is not what Aaron IS; it is something that he HAS.  He is the same child, the same human being he has always been.

If life is made up of choices, then I choose the realm of possibilities: What Is And What Can Be.  And that's a healthier, happier place than the doldrums of Before and After.

 Aaron, 7th grade, 2011

Why Pluto?

Why, indeed. Pluto -- the remotest object in our solar system; the little planet that suddenly wasn't -- Pluto is a perfect metaphor for what our life became when, just after he turned three years old, my son Aaron was diagnosed with Autism Spectrum Disorder. The moment those words were pronounced, our beautiful, affectionate, smart little boy; the one with the big green eyes, curly blond hair, sweet smile, and ostensibly promising future, suddenly...wasn't. It felt that way, anyway. Our hopes; our dreams; our exciting plans...smashed to smithereens and replaced with "experts" who told us there was little they could do to change his prognosis. Prepare to eventually have him institutionalized, one said. We found there were very few easily accessible resources; those we did find often withheld vital information (government agencies seem to have an unwritten "Don't ask, don't tell" policy -- saves on costs if parents don't know everything their children are entitled to), and either couldn't or wouldn't answer most of our questions. Long-time friends retreated from us; family members, while loving, still didn't get it...and we quickly found ourselves relegated to a cold outpost at the end of the societal universe. And there's no restaurant.

Unless you open one yourself.

Which, figuratively speaking, is what we did. Ten years later, Aaron is not yet fully recovered-- and we don't know if he will ever fully recover -- but after years of exhaustive research, knocking on doors, medical treatment, patience, persistence, a wonderful dog and a huge helping of love, he is healthy, bright, talkative, and doing a thousand things the "experts" said he never would.

This is not a "cure" blog; rather, it is a record of our adventures and misadventures on our journey back from the brink of exile.

Cheers.