Following Shadows

"That's so cute; he's trying to follow his shadow". This harmless comment came from an older woman addressing my 2-year-old son Justin. We were on vacation in Maine and Justin was indeed following his shadow along the main walkway by the entrance of the beach. What this woman did not know, was that Justin had been doing this for well over half an hour. He was oblivious to the vast and thunderous ocean before him, oblivious of the people who were nearly tripping over him trying to get past him. Down by the water's edge, my oldest son and my husband were engaged in the serious work of collecting crabs, shells and other sandy treasures. But Justin's only focus was his shadow. Possibly, because he was fascinated by the way it danced when he did. Possibly, because the beach presented such an onslaught to his senses that he desperately needed a distraction. I smiled weakly at this woman as she passed us by. I know she meant no harm with her remark. But inside, I crumbled just a little. I crumbled because just a month earlier my husband and I sat in a doctor's office and received the news that Justin was on the autism spectrum.

To say this news came as a shock would be an understatement of vast proportion. Sort of like claiming the Titanic was a boating accident. But this was no boating accident.

Truth be told, I almost canceled the appointment. Just two weeks prior, Justin had gotten tubes put in his ears because the ENT discovered he had some conductive hearing loss, probably brought on by a nasty ear infection.

Hearing loss. That was the problem. He's not talking because he's having trouble hearing.

Still, we had waited two months to be seen by the developmental specialist. We might as well go see what she has to say. Well, what she said was that my child was on the autism spectrum.

Huh? Come again?

Not my child. My child is affectionate. My child looks at me. My child just can’t talk yet! As the doctor (who I would come to loathe) pointed out, my child also didn't point. My child also did not express any wants or needs. My child didn't share any attention. My child had no interest in other kids. My child didn’t perform any adult directed activities.

We tried in vain, to explain, that he was just stubborn (a trait he inherited from both of his parents). She tried, with equal conviction, to explain, that in her twenty years of specializing with this disorder that she had no doubt that our child was on the autism spectrum.

Denial is a river that runs deep through our house. And I jumped right in because the water was fine. My son did not have autism. In my previous life, before I was a stay at home mom, I worked for ten years with adults with developmental disabilities, many of whom had autism. I've seen too many affected adults who spend their days rocking in a corner. Adults who are violent and frustrated because they can't effectively communicate. Adults with terrible scars on their bodies because they inflict injury on themselves. Adults who play with their feces because they "like" the way it feels. Adults who were sad and lonely and lost. That was not my son. Don't you dare tell me that is going to be my son.

The brain is an amazing organ really. I truly believe that it has a self-protective mechanism that allows you to only absorb bad news a bit at a time. And so it was, that the slow realization that Justin was on the autism spectrum began to drizzle into my consciousness, just a drop at time at first but then the deluge of reality quickly began to sink in. I started to see what that doctor had seen when she evaluated Justin. We were so focused on the fact that he wasn't talking that we completely missed just how disconnected he was. How he would sit forever and draw circles over and over. How he would escape upstairs to his room and just lie on his bed looking at nothing. I just thought he was my "good baby"...quiet, undemanding, never makes a fuss, a stark contrast to the glorious tornado that is his older brother.

Suddenly, I began to see him through this lens of autism and a part of me just died. That part of me that carelessly took for granted that my children would grow up happy and healthy. That they would go to their senior prom and have lots of friends. That they would go to college and pursue their passions. That they would fall in love and get married and have babies themselves someday. That feeling of gleefully taking life for granted and knowing that everything will work out fine, just vanished. It was replaced with questions. Why did this happen? Was it something I did or didn't do? Will he have friends? Will he be able to live on his own one day? Will he ever call me "Mommy" again?

But mostly, why did this happen?

That's the one question I've never been able to quell. That's the one that keeps me awake at night. How is it that one day we had a perfectly healthy and happy baby boy and a few scant months later we had a child who was slowly and insidiously slipping away from us? That question will haunt me for the rest of my life.

It's been nearly 2 years since that day on the beach and Justin will be 4 this summer. These 2 years have been filled with lots of speech therapy, occupational therapy and special education through our local Early Intervention program. He is currently, in a wonderful integrated pre-school 5 days a week where he continues to thrive.

Yet, I still think back to that woman's remark, because so much of the past 2 years has felt just like following a shadow. Always following that shadow of hope and praying it will lead my son to a place where his everyday life is filled with joys to be discovered, not obstacles to overcome.

Luckily, I can say that my son has come such a long way. But he still has so far to go.

Anybody with a child on the autism spectrum has probably heard them say (whoever "them" are) that the reason Early Intervention is so important is that after age 5, the "window of opportunity" starts to close. While I'd like to believe this isn't true, I must admit, I am starting to feel the heavy weight of that window closing. Not just on my son's ability to progress, but also the window closing on this phase of my life. For the past two years since Justin's diagnosis, I've been living my life in a fog, vacillating between feeling sad, scared and just plain sorry for myself. This summer I turn 40 and when I think back on the last 20 years they seem to have gone by in a heartbeat. Which is why I know the next 20 will do the same. I am feeling desperate to be in the moment and hang onto these days as much as possible. To savor the residual “babyness” that still lingers in my children. To enjoy the fact that my parents are still vibrant and healthy. To embrace my husband with a love that only grows stronger year after year. I am extraordinarily lucky and I can't have the window close on all of this. Not now. Not yet.

So I will write.

I will write to remember. I will write to rejoice. I will write because it's cheaper than therapy. But most of all, I will write so that someday I will have a record of this most precious time in my life.