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.
“Mommy, tell me a story” my six-year-old with mild autism entreats me, and in the rearview mirror I see him gift me with that grin I know so well. “Ok, who will be in it?” I reply a bit tiredly, but I’m game as he hasn’t asked me to recount one to him in a while, and I’m loathe to relinquish our mutual passion for tale-telling.
“Me, Justin, and monsters” he answers, and for some reason my mind wanders to a story I’d just told him where he vanquished the Loch Ness Monster, ultimately taming her and using the beast to fight the Dark Side.
I soon weave him a story in which his older brother with severe autism is stranded on a raft in Nessie’s lake, is terrified of being capsized by the broad arc of the serpent’s tale. At the end I tell him how grateful Justin is to him for saving his life. I also share with him how although his big brother can’t speak out loud, in the story he talks to Zach in his heart.
I tell my son his brother says “I love you Zach, you are the best little brother in the world, thank you for saving my life,” and I end with a grin. I glance in the mirror one more time and see my eldest rocking out to “Rudolph the Red-nosed Reindeer” then I swivel slightly to see if my latest fable has met with my son’s quite discriminating approval.
In the reflected light of the mirror I see my small son’s head in his hands, fingers nudging his glasses off his face, his shoulders shaking slightly as tears roll down his cheeks.
It appears my story-telling has made my own six-year-old cry.
I quickly ask him what is wrong, and after a short silence ask him if the ending made him sad. He answers that he is in fact crying tears of joy because his brother is talking to him, even if it’s in his heart. He tells me the story was a good one.
I take a deep breath and wipe my own eyes.
In my family we discuss autism all the time. Zach knows and revels in the face he has a “little bit of autism.” He is aware that Justin quite obviously has a lot. He also knows his brother loves him, evidence of which I provide on a weekly basis. Zach is aware that Justin would never permit another child to be so physical with him, would never welcome the hugs and infrequent rough-housing Zach bestows upon his sibling as often as he can.
He is well aware that Justin’s face lights up whenever he enters the room- that even thought his big brother cannot express his joy vocally, he conveys it through his expressions and his compliance with Zach’s frequent demands. My last child has told me over and over again that he’s okay with Justin having the disorder, fine with the fact he doesn’t speak to him out loud, quite confident in the relationship they’ve formed.
Yet I wonder, for the millionth time, if he really is okay with it all.
I reassure him that while it’s alright to have tears of joy, that it’s always okay to have tears of sadness too. I tell him that I’m sometimes sad that Justin’s autism is severe, that my son who grants me a hundred kisses daily is held captive to his OCD, the rigors of which often render him miserable.
I tell him I wish Justin could have friends like he does, and I see Zach nod his head slightly in acquiescence. I share with him that I wish my first child could talk too, how it’s hard for me not to know what he's thinking, that I’m certain a vibrant intelligence dwells beneath his almost-mute exterior. I ask Zach if he wants to talk more about Justin and he says no, that he’s okay. He then commands another tale, requests that this one include light sabers and epic battles waged. I tell him I’ll see what I can do.
It is clear the conversation is closed, at least for today. But I know I’ll revisit it many times, encourage him to share his feelings, even his disappointments. We talk a lot, me and my smallest son. Our discussions are something I never take for granted.
So I breathe deeply again, and devise a tale where he and Justin must work together to overcome great evil, each using his strengths to counteract his sibling’s weaknesses. I forge a path where together the boys benevolently rule the world, each in his own way. At the conclusion they remain connected to one another, and reign victorious over any who would threaten them, or their bond.
And as I end yet another saga for my boy, my own heart speaks out loud, wishing it to be a tale come true.
Kim last year wrote a guest post titled "The Talk" where she shares the story of telling her young son about his diagnosis. You can find that piece here.