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.
Justin, my son with severe autism, opens his mouth in a wordless “o” of half-terror and half-excitement and plunges a body length toward the boardwalk. Knowing he’ll be engaged for several minutes I allow myself the luxury of relaxing just a bit, as the amusements at this particular boardwalk are actually worth the wait.
I take a step backwards and feel my sneaker crunch what can only be someone else’s toes, and I quickly turn to offer my apologies. Thankfully, my victim simply says “Don’t worry about it.” I see her hesitate for a second which intrigues me, and she follows up with a second question. “Is that your boy on the end?” she asks. I say yes, and she responds with “Mine’s on the other end.” I turn back and see a little boy with Down’s Syndrome four seats down from Justin, clearly as immersed in the excitement as my boy.
I consider anyone with a child who’s differently-abled to be part of my “tribe,” so I take a step back and strike up a conversation with her. I tell her her son is beautiful, and she kindly returns the compliment. With only a minute or two left in the ride we conduct a typical abbreviated dialogue- diagnosis, residence, how our school districts are providing for our kids, and sibling status. It turns out she has an older daughter who adores her son and is a big helper, and I share with her that I have a younger son who is also on the autism spectrum, but mildly so.
She looks at me, this woman with her own Herculean challenges, and says quietly, “Two? Wow. I have my hands full with just one special needs child. I don’t know how you do it.” I reply that wine and getting out of the house once in a while are my biggest helpers, and she laughs as we both watch the blurred row of seats begin its final descent. I say good-bye to my newfound friend and wish her luck. Justin descends, and it appears our subsequent adventure will be the tilt-o-whirl. I am already regretting having eaten prior to coming here.
Fortunately we successfully survive what I’ve lovingly come to call “the twirling cups of queasiness.” Justin lets me know that he’s done with rides for the day by striking out in the direction of his waiting stroller, which means he wants our traditional stroll down the boardwalk. I love these walks, and let my mind wander back to my conversation with my “tribe-member,” and her heart-felt query as to how I make it through the day.
My comment involving the merits of alcohol and frequent bouts of “Mommy-time” was somewhat glib, but also true. We all need to take care of ourselves so we can take care of our kids, and for me, that includes time alone. Some of my best ideas have been born from those moments of sanity, where nobody is stretching out my shirt-sleeve with their wants. I admit, to me, that time is precious.
I also admit there are other reasons why I’m usually able to do more than just get through the day. If I’d had more time, I’d have told this woman that my eldest son’s bravery when he attempts to talk continues to take my breath away. I’d explain to her that the compassion of my youngest son for his sibling’s communication struggles makes my heart overflow with pride. I’d share with her that my sons’ collective courage in all of their endeavors is a tremendous inspiration to me, that their spirit makes me strive to parent them to the best of my capacity. I’d regale her with all of these examples, and they’d be true. There’s one other important reason I might leave out however, because you really need a visual for it, and it’s something Justin won’t produce on command.
I call it, lovingly, the thin red line.
The thin red line is his special smile, the one he saves for particularly spectacular days, the ones that exceed even his exceedingly high expectations. It is usually preceded by a mighty hug and kiss of thanks from my boy, and looks like the picture you see above.
Those perfectly pursed lips signify a blessed absence of angst, a true sign that fun is interwoven indelibly throughout his days. That look on his face indicates that despite some limitations, he is thoroughly enjoying his childhood. It means that all those years we struggled, both independently and together, have ultimately resolved themselves into his predominantly peaceful, and happy, existence.
For the millionth time, I thank the universe we’ve come to this point. Justin’s contentment, that emotion we’ve worked so hard to elicit, will remain that catalyst that does far more than get me out of bed in the morning. It will be a continual reminder of how fortunate this family truly has become.
Lucky, in fact, to be graced with the thin red line.