This guest post is by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). The Regional Autism Center at CHOP is a member of Autism Speaks Autism Treatment Network.
Eleven years ago this Fall I sat in a cramped, fluorescent-lit examination room with my husband and then seventeen-month-old son. We were there following a several month wait for what we assumed would be an autism diagnosis. A few months prior our pediatrician had shoved a few ill-copied articles with the word “autism” in the title, practically pushed us out the door, and told us to consult a developmental pediatrician. I had been alone at the appointment as it was just a routine sick visit related to my son’s reflux, and it had been the first time our pediatrician had shown any concern regarding our son’s development. I remember clutching those articles to my chest, placing Justin in his stroller and stumbling out the door, hot tears wending their way down my cheeks as other moms stared at me.
It was a day no amount of chocolate could mollify.
Our visit to the developmental pediatrician was in sharp contrast to that day, as she couldn’t have been kinder as she assessed our boy. She made a point to single out all the skills he could do, and emphasized how obviously attached he was to both me and my husband. She gave Justin a diagnosis of PDD (Pervasive Developmental Disorder) that morning and told me to follow up in six months. I remember the diagnosis came along completely coupled with relief that we had an answer to his differences.
I say almost because that diagnosis also brought with it fear that he’d regress, that we’d lose that special closeness we’d created for a year-and-a-half all those long sleepless nights. I was too afraid to ask during our visit if we’d be in danger of losing that unique connection, managed to relegate that fear to the darkest recesses of my mind.
And I wish I could go back in time and tell that scared mom that her fears would be unfounded, for I can’t even count the ways my son shows his love.
There is the ceremonial “blowing of the kiss” from his bus window.
The times he stops what he’s doing and just plants one on me for no apparent reason.
The way he comes up behind me and hugs me to show his joy.
The way he curls up on my lap each night like a comma, snuggling his cheek into my shoulder just as he did when he was a toddler.
Eleven years later our son’s still predominantly non-verbal, still falls on the severe end of the spectrum. He will never marry or drive a car. He will never live independently. I will forever worry about what will happen to him after I die.
But right now, we have this. An unbreakable connection forged in fire, one perhaps more profound because of his autism, his unique world view.
We have that.
We will always have that.
And I will always be grateful.