This is a post 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). Kim is also the author of a blog about her two children with autism, at autismmommytherapist.wordpress.com. Kim's book Raising Autism: Surviving the Early Years is on sale on Amazon here.
Zach sits precariously on our step, hunched over in concentration as the twists and turns of tying his shoes elude him. My seven-year-old with mild autism sighs in frustration and looks up at me as I recite the shoe-tying mantra, “over, under, through.” He claims he’ll never get it right, and I assure him that like so many things that have been challenges for him over the years, he will conquer this too.
In return I am gifted a glance of disbelief with an eye roll chaser.
I gently take his hands and guide them into an “x,” emphasizing “over,” lost momentarily in the past. I can easily remember the day six years ago we realized our second child had autism, that the speech slowdown we’d been experiencing for weeks was not due to back-to-back viruses, but might be permanent. Still, my husband and I hovered over the situation in denial, loathe to admit a second diagnosis was true, as our eldest son had suffered so greatly in his early years.
We made excuses, chalking Zach’s dearth of words, constant diarrhea and the dimming of the light in his eyes to illness, a rough patch, imitation of his older brother. It wasn’t until our early intervention therapist assessed his skills and told us he’d lost six to twelve months in all areas in a matter of weeks that we accepted his autism, and made that all-important appointment with his brother’s developmental pediatrician.
In a matter of days we were over denial.
My small son drops one side of his tenous “x” and looks to me for guidance as I prompt him with “under,” and he successfully complies. I recall how tumultuous those first few months of his diagnosis were, as we juggled therapy, diet changes, and doctors’ appointments for not just one child on the spectrum, but two. I remember feeling weary to my core, my interactions with my spouse conveying only sadness, and necessity. Sleep eluded us all for weeks, with its deprivations enveloping us in a fog defying clarity of any kind.
We were, as the expression goes, completely under it.
I move to help him complete his task and am rewarded with an “I can do it,” and I believe today is the day he can. He grasps the worn edges of his lengthy lace and triumphantly pulls it through, knowing he’ll need help for the “loop loop” portion of this exercise, but overtly proud of his initial accomplishment. I empower him with praise for mastering this skill which has eluded him for weeks. I pause momentarily in my shoe-tying ministrations to think back to the summer following his regression, long months after we seemed to have traded our normally ebullient boy for one whose days were tempered with sadness and silence.
I remind myself how he struggled but slowly regained his words, peppering his parents’ lengthy vocal pauses with coveted consonants and vowels which eventually transformed into phrases. I allow myself images of his joyful soul returning to us, how he eventually embraced childhood games he’d eschewed when he only seemed able to master misery. I remember not caring why- was it therapy, his new diet, consistency, love? All that mattered was that he had assumed his sibling’s trajectory and came through to the “other side,” the familiar path which both boys have so fortunately tread that’s lead to their accomplishments, burgeoning independence, and happiness.
I slightly assist my beautiful boy with his overly large loops, listen as he repeats his three-step instructions to finish the task at hand. He regards me in triumph and I echo his look, as I feel triumphant in our family too. We’ve found a way to make both the restrictions and gifts of autism work for us, forged a life filled more with beauty than with pain. We’ve come through fire this family, and I hug my son tightly, proudly consumed with an abundant gratitude that we’ve come to this place.