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."
He stands hesitantly at the door, my littlest love, watching as Justin and I rock gently back and forth on the glider that serves as our throne as I read his teenaged brother one of his beloved Eric Carle books. I see him mid-sentence, and figuring he wants more pretzels or juice or something consumable I pause and ask him what he wants. “I want to say goodnight to Justin” he says and enters the room, insinuating himself on my one available thigh. My heart both clutches and expands, and I read on about the miraculous Mr. Seahorse as he gestates what looks to be like a thousand eggs for his wife.
I’ve always loved Eric Carle.
As Zach settles on my lap I look swiftly at Justin to see how he’s taken this alteration in his routine, and a huge smile graces his face, and I relax. I want this to go well because, well, they’re brothers, and although I’ve tried hard over the years to forge a closeness between them it’s been difficult as they don’t share the same interests, and in later years Zach hasn’t really wanted to try.
When the boys were very little, before Zach’s regression, my youngest spent a great deal of time trying to get his brother’s attention. He was always pulling on Justin’s shirt, calling to him from across the room, and generally trying to get noticed. It was easier to contrive moments of connection back then; I could put both of them in Zach’s crib and Zach would always take Justin’s hand (and Justin would let him), and I know that satisfied Zach’s desire to be seen.
Then in the space of a few weeks our baby lost most of his speech and developed a rash all over his body. I can tell you I wasn’t worried at that point about sibling relations one bit.
Over the course of the next few months we changed Zach’s diet and started Early Intervention services as we had with his brother, and slowly our son emerged, altered, but once again speaking, and most importantly, happy. As we navigated our way a second time through his current services and prepared for the myriad of hoops we’d have to jump through to get him a special education placement I put brotherly bonding on the back burner, but never pushed it entirely from my mind.
Years passed, and Justin became more and more restricted in his interests to the same degree that Zach’s world continued to widen, and I saw more and more that opportunities for them to interact became fewer and far between. Justin liked movies on his DVD player, but only the same thirty seconds over and over to Zach’s desire for a full length feature. Beach excursions became work as I battled to engage Justin’s interest so we could last an hour, and eventually I stopped taking them together as leaving early didn’t seem fair to my youngest beach bum. My eldest wasn’t interested in any of the computer games that so enthralled our youngest, and eventually I let this dream go as I focused on getting them both to sleep, eat anything other than carbs, and most importantly, (thank God!) potty train.
When it comes to autism, I have my priorities.
Over the years Zach would occasionally say he wished he could play with his brother (then in the same breath would ask for a younger sibling, at which point I would emphatically tell him the store was closed). Zach made friends both within and without his school, and his desire for an in-residence playmate waned. He was okay with helping out with Justin on occasion, but that desire for connection seemed to have disappeared.
Then last night he told me he wanted to start saying goodnight to Justin, and the window opened again.
My eldest son can read, and in the past year or so has been gracing us with words here and there. In an attempt to elicit more speech from him I’ve been letting him fill in the last word on every page of our night’s literature, and asking him to fill in the last word of the three songs we share together every evening; “Silent Night”, “Over the Rainbow” and his “special song”, which I made up in desperation to get him to stop crying when he was six weeks old.
It didn’t work, but the song stuck.
We went through our routine, and Justin loved the change. He’d giggle every time we pointed at him to speak, and gave his brother complete and uninterrupted eye contact the entire time. Zach ate it up too, chastising me when I forgot to leave off a word in one line of lyric, reveling in his brother’s attentions. As the last notes of “Silent Night” drifted off I stood up and Zach slipped into my space, and as I went to return our book to his father’s study something stopped me, and I turned around.
All on his own, my son who initiates affection only with me and his father, leaned in close to Zach so he could get his “forehead kiss”. Then he clasped Zach’s hands with his, and gently grazed them with his lips.
Justin immediately began his maneuvers around the room with a delighted smile, and Zach gazed at me in wonder. “He loves you, Zach” I said and my youngest gave me the briefest of nods, a kiss on the shoulder, and bounded out of the room for his pretzels.
My son has his priorities too.
There are heartbreaking moments with autism. My son’s dual diagnosis of OCD can be overwhelming at times, and although I believe we’ve finally found a remedy the memories of the past two years are always with us, both our son’s struggles, and ours. There are times we can’t understand him even when he uses his device, and his frustration and my feeling of failure can be difficult to bear. I can never reconcile with the fact I’ll leave Justin on this earth for forty years without me, knowing I’ll have to trust in his little brother to oversee his health, safety, and hopefully, his continued happiness.
But there are these moments with autism, even severe autism, moments of such stunning clarity and grace that I know I have to push myself to be present so I don’t miss even one. My youngest is taking an interest in his brother again, and I know I will build on this moment, stretch it as far as it will go, hope for their bond to be strengthened and unbreakable as the years and decades pass. It is up to me to grab these opportunities as they emerge, but truly it is up to them to forge what they will, and ultimately I have to accept that too.
But in the meantime, there is a song, a story, and a kiss. There is a moment of profound love.
And for once, I am at peace.