BY KIMBERLEE RUTAN McCAFFERTY This past summer my family and I spent a day at Great Adventure. It’s the only place Justin, my severely autistic son, willingly stays for more than an hour (I have often joked with my husband that wherever we live has to be within a 30 minute radius of a Six Flags parks.) It’s usually a very fun excursion for us, mostly free of angst, and something I truly enjoy doing as a family.
On our last trip there however, things got a little bit interesting. We were all safely ensconced on the Runaway Train roller coaster, rushing precariously along to our first hill, when I looked ahead and saw a man in the front row waving his camera. I heard one of the employees scream, “You can’t have that on the ride!” and immediately had the feeling all of us were going to pay for that jerk’s need to have a selfie.
Was I ever right. Halfway up the first hill we came to a jerking halt. I was seated next to Justin, and I immediately took his hand and squeezed it, reassuring him we’d be okay. Within a minute, one of the employees was climbing up the side stairs, and I turned to grab her sleeve as she passed by so I could get some information. I told her my boy was severely autistic and that our unscheduled stop would be hard for him, and asked her how long we’d have to sit there. She told me even when they took the camera from Mr. Important that we’d have to wait for a supervisor to come restart the ride, which would take up to 15 minutes. I thanked her, and as she recommenced walking, I heard the slow whine of my son’s discontent begin.
I knew this was going to be a very long 15 minutes. When you’re a writer metaphors seem to fall into your lap, and as my son fumed next to me (and trust me, so did the rest of the people on the train), I had time to think about being stuck, both literally and figuratively. I looked at my son who was agitated, but not pinching me, crying, or trying to get off the ride as he would have done only a few years before. I was so proud of him as he went with the flow, hopefully reassured by my constant flow of “it will start soon.” I praised him and squeezed his hand and made a mental note of how much progress he’d made.
Then I realized he wasn’t the only one on the ride who’d made progress too. We all have our demons. Mine involve over-consumption of chocolate (a fun one!), and anxiety. I’m not going to blame autism for this, as even before my kids were born I could be a worrier (I’m fourth generation, as my mom says I come by it honestly.) Before the kids were diagnosed I could talk myself down from any anxiety ledge, and I can truly say it was just a part of my life I didn’t like but had learned to work around.
Then, not one but two of my kids were diagnosed on the spectrum, and anxiety became my new best friend. To be fair, when my kids were in their early years, they were plagued by sleeplessness, gastrointestinal disorders, and a general unhappiness that was both exhausting and depressing. I worried they’d never sleep (hell, I worried I’d never sleep again either.) I worried they’d never eat. I mostly worried they’d never experience more than a few fleeting moments of happiness, which is all I ever got in those dark days.
My worries became a mantra of “what if this is permanent,” which I carried around with me everywhere. I couldn’t shed my fear for more than a few hours at a time. I was literally stuck. And now, and I realized this on that damn roller coaster, I’m not. Most of the time, I’m free. I’m not free of everything. My fears of what will happen to my boys when their dad and I are no longer around are permanent. I’ve accepted this, and learned to live with it (somewhat.) To me it’s the great divide between me and parents who have kids who will safely live independently one day. I don’t think it’s a bridge I’ll ever cross, although I’ll wave longingly to the other side from time to time.
But 10 years after my first son was diagnosed with autism, I realized I am free of these things. I’m free of worrying about what other people think if my son’s loudness in a movie theater (it happened over break, it was three minutes, I figure the rest of the audience will live.) I’m free of what other people think, period.
I’m free of worrying over whether I’ll ever hear my severely autistic son’s voice (I did, and did so at great length when he read his first book to me at age 11.) I’m free of trying to do everything right, because nobody can, whether they have kids on the spectrum or not. I’m free of trying to maintain friendships where people don’t understand my life and logistics are usually more challenging than theirs, and I need their flexibility and understanding. I’m free of worrying every single day about my boys’ futures. The time for that will come – it’s not here yet. I’ve learned to live more in the present.
I’m free of guilt over what caused their autism, and what I have and have not been able to do for them since their diagnoses. I’m free of worrying whether or not they’d ever be happy, because sometimes my boys are by far the happiest people in our house. And even on that roller coaster, as small a thing as it seems, that day I was free of panic over how Justin would handle our interruption. He was fine. So was his mama. It was huge, monumental progress for us both.
And as my New Year’s resolutions fade with that first of many bites of chocolate, I resolve that remaining free is the one I will carry with me.•
ABOUT THE AUTHOR:
Kimberlee Rutan McCafferty has written several articles for Exceptional Parent magazine. She is also the author of Raising Autism: Surviving the Early Years, a memoir about parenting her two boys, both of whom have autism. Her new book is available on the web: www.amazon.com