My son with autism's joyous moments help us get through the tougher ones
By Kimberlee Rutan McCafferty | October 25, 2018
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.
As you speedily unwrap and liberate the toy from its imprisoning box your smile bursts forth followed by a deep-throated, fifteen-year-old chuckle (your laugh slays me every time), and your face simply radiates joy. This toy’s predecessor went to “toy heaven” a few months ago after serving us well for thirteen years, had been one of your favorites on and off for over a decade. Your dad diligently found it on eBay which was a miracle, and clearly it was well worth his effort. You follow up this toy with two books you haven’t owned in years because you’ve destroyed the poor things too many times, but since it’s been a while we thought to give you another chance. You quickly turn to the back pages of each and light up Eric Carle’s firefly and let his crickets sing, and once again I revel in your giggle, your ability to live totally in the moment at hand.
Mommy could learn a lesson or two from you.
You are fifteen. You are not talking about driving (thank God!), or a new cell phone, or why your iPad is hopelessly out-of-date. You are definitely thinking about girls as evidenced by your frequent pointing to a pretty babysitter-of-yore in a photo album, a huge grin making it very clear you would like to see her again. You still love your Eric Carle books, Baby Einstein videos, and every once in a while when our guard is down we buy you an old Wiggles DVD that has been (intentionally) lost in the shuffle. You were joyous at your party, even more so the day after when opening your presents from your parents (I believe in stretching out birthdays as long as possible). You were, in those moments, profoundly happy.
Truth be told, I cling to these moments when the going gets tough, and I’m always greedy for more.
Sometimes, the beautiful boy who made me a mom is extremely difficult to deal with. My boy has severe autism, OCD, and lately a diagnosis of tics which honestly threw his parents for a loop (we knew puberty would bring something else to the table, we just didn’t think it would be that). We’ve been struggling lately with bedtime which may purely be a function of advancing age, or could be something else. Since the tics came to call we’ve had regression in several areas of development, which is disheartening to say the least. To tell the truth we’ve gotten used to the stimming and the OCD over the years- watching him disappear in a tics episode has been distressing to say the least. We are so grateful with the proper diagnosis he has improved, although I’m told this will never go away.
Kind of like autism. We’re familiar.
Storing up these moments of joy whenever possible has been a trick I’ve used over the years, one that has helped me cope immeasurably. When things get difficult chez McCafferty and I get a moment to breathe I try to recall these times, his elation, the absence of dread. I have found over the years I’ve dealt in dread as much as I’ve dealt in joy with Justin, and I am diligently trying to change that (it’s even one of my New Year’s Eve resolutions!). Stockpiling those moments of joy and trotting them out in trying times restores my sanity, because it reminds me of this- everything with Justin is cyclical. Yes, we are often putting out fires, but there is an ebb and flow to the difficult times, and to date, peace has always returned.
May it always continue to do so.
I’ve got good memories for the “bank,” and a reminder to myself that when things fall apart, and they invariably well, they will come together once again. Eventually there will be peace.
And when there is, I plan on being in the moment enough to enjoy it.