January 2, 2014
My State of Reunion
Ten years ago this month I brought my first-born in for a routine doctor’s visit to address his reflux, a frequent and unwelcome visitor who had returned to torment my baby. I stood with my diaper-clad seventeen-month-old in a brightly lit, overheated room, anxious to get that magical scrip that would alleviate his discomfort, eager to leave the office and resume our lives.
Twenty minutes later I would stand in the center of that neon-lit waiting room shaking, barely able to dress my child, clutching incomplete articles with the word “autism” prominently displayed in the title in my trembling hands.
Ten years ago, in one minute my world as I knew it ended.
A decade ago I made a promise to myself that I would always tell it like it is, and I would be lying if I didn’t say that at times, the last ten years have been hell. Despite his generally positive, affectionate nature, my eldest child moves through cycles of aggression at least once a year. He is also plagued with OCD which renders him miserable at times, and wreaks havoc in our house.
I’ve also witnessed my second child (one who unlike his sibling appeared to develop typically) relinquish the world of sounds and descend into a foreign world of silence in the space of a few weeks. I watched as he too became victim to serious gastrointestinal issues, held him helplessly for months as diarrhea coursed through his body until the new diet we tried eventually kicked in and alleviated his suffering, much to our profound relief.
I won’t lie to any of you. At times, for both of my children, I could only equate autism with suffering.
At times, there truly was no silver lining.
I occasionally think back to the woman I was ten years ago, wrestling with her child’s diagnosis, and that same girl a half decade ago, as she watched the light as she knew it leave her second son’s eyes. In those instances our lives seemed devoid of hope, empty of promise.
Truly, the only way to go from either place was up.
I won’t ever tell another parent going through an autism diagnosis that it will definitely get better. Nobody, no matter what they tell you, nobody can completely predict the trajectory of a child’s progress at the time he or she is diagnosed. Trust me, Zach’s doctors are stunned that he’s mainstreamed in an inclusion class without an aide, participating in after-school actitivies, has friends (and yes, he’s still autistic.)
I used to see the glimmer of surprise in certain professionals’ faces when my eldest bestowed his frequent kisses on my in an exam room (we use different doctors now), watched their faces register disbelief that a severely affected child could be so loving. The doctors don’t know everything. However, they will probably tell you they do.
So, I won’t promise you that it will all be okay. But I will tell you you might change your definition of okay, and hopefully that will bring you peace.
My youngest son is still on the spectrum, but he believes his life to be one long glorious adventure, and for that I am grateful.
My eldest will never attend college, have a spouse, or live independently. I’ve reconciled myself to the fact that I will always be sad he doesn’t have these choices, yet relieved he seems to have forged a fragile truce with autism, is mostly a joyful, ebullient child, confident in the world he calls his own.
After ten long, arduous years there mostly exists a state of peace in our household, for which I am eternally grateful. This peace has enabled our family to have a full and rich life together.
This hard-won peace has given me back my life too.
After ten years we are finally in a place where I am contemplating part two of my career, feel I can make more time for friends, know I can breathe more easily. I feel as if I’m rediscovering myself, my needs, my wants, what makes me happy. At times I unearth the echoes of that fairly fun girl from ten years past, and I embrace her warmly, remember how her outlook was one where anything was possible.
I’m not there yet. But I’m working on it.
And as we begin a new year, full of wonder, full of promise, my wish for all of you is that this oft-elusive peace will grace your lives, and you will find yourselves once again too.