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 is also the author of "Raising Autism: Surviving the Early Years."
“I wish Justin didn’t have autism.” I hear the words softly emitted from my youngest son’s mouth as we exit our church’s parking lot, and my stomach clenches mildly in response. I look in the rearview mirror at my son’s face, slightly obscured by a hat gone askew. We’d just been talking about Moses and the burning bush (I was so proud of myself for retaining at least one story from my own Sunday school days a century before), so his segueway was slightly startling. I took a deep breath, and asked him why he felt that way. He tilted his head a bit and said “Because then we’d like the same toys and movies and books. We could share and I’d have twice as much stuff.”
When you’re five, it’s all about the “stuff”.
I realize I’m holding my breath and I exhale, relieved that for now this wish is so simple, plus I won’t have to resent my husband for not being there to help me handle his query. I continue our drive, and for some reason a set of framed photos hanging in our foyer come to mind. The pictures comprise a triptych, where Zach is static for all three shots. Justin is in various states of watching his brother, then alternately looking at me. Last, in that perfectly captured final moment, he is actually nuzzling his younger sibling, eyes closed, apparently reveling in their closeness.
I’ll admit, there was some eye-welling when I realized what I had “on film”.
Zach pulls out his favorite request after asking for juice and pretzels, and I am once again relegated to the role of storyteller, a part I feel is just a wee bit too early for me to handle in my unfortunately uncaffeinated morning. I gear up for the task at hand after I’m told the cast of characters (Zach, Justin, Mommy, Daddy, and everyone from Star Wars except Jar-Jar Binks). I take a moment to think about where I want to go with this latest piece of fiction.
I have the strong feeling it will involve two brothers.
It does, and as I weave a tale of wars waged and battles lost I include two boys, both of whom possess a formidable will for what’s right, and impeccable character as well. There are choices to be made, forks in the road that require a devotion to the dark side, or to the light. Fights ensue with limbs lost.
This is a story for an almost six-year-old after all.
But amongst the challenges accepted and the rallying cries of war there are pivotal moments of character development, where the two protagonists must work together to save their aging parents (guess who they are), are required to comprehend each other in order to return the universe to those who follow the light. I highlight Justin’s strengths, his ability to notice when anything is “different”, his devotion to getting to the heart of the matter when he communicates, his affectionate soul.
I insert Zach’s innate stubbornness and facility with language, and create a plot where they both must work together to liberate their parents and save the day. I make certain that in order for my two main characters to collaborate they must appreciate each other’s gifts, and supplement each other’s deficits. In the end of course they prevail, with a relieved mom and dad showering them with praise, and a grateful universe regaling them with precious treasures.
Among the gifts is a talking light saber. I have to hold his attention while I tether those sometimes tenuous brotherly bonds.
As my fable comes to its climax I am relieved from my storytelling, and my small son begs me to pull over so I can ply him once again with juice and snacks (listening to my tales appears to make him famished). I quietly ask him if it’s okay that Justin has autism, and after a few long moments I hear a faint and slightly irritated “yes”. My son has rediscovered his Star War books, and clearly discussing neurological disorders is so yesterday.
I grin at his intense concentration, that focus he brings to all he does. I send out a request to the universe that Zach will permanently view his brother the way Justin sees him in that well-regarded triptych, that my youngest son will continue to adore his older sibling. I hope that Zach will always see the light in Justin and in himself, that effervescent force which flows from them both.
I let my mind wander back to that final photo of brotherly love, and smile.