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 often joke with my husband that wherever we live has to be within a 30-minute radius of a Six Flags park.) It’s usually a 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 OK. Within a minute, one of the employees was climbing up the side stairs. I turned to grab her sleeve as she passed so I could get some information. I told her my boy was severely autistic and our unscheduled stop would be hard for him and asked her how long we’d have to sit there.
She told me even after they’d taken the camera from Mr. Important, 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 long 15 minutes.
When you’re a writer, metaphors seem to fall into your lap. As my son fumed (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. He was agitated, but he wasn’t 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, 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. 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 — I was a worrier even before my kids were born (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. I can truly say it was a part of my life I didn’t like but had learned to work around.
When not one but two of my kids were diagnosed with autism, 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. 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 stuck. And now, as I realized 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 have (somewhat) learned to live with it. To me, it’s the great divide between me and parents with 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’m free of these things: I’m free of worrying about what other people think if my son’s loud in a movie theater (it happened over break, it was three minutes, I figured 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 when he read his first book to me at age 11).
I’m free of trying to do everything right. Nobody can, whether they have kids on the spectrum or not.
I’m free of trying to maintain friendships with people who don’t understand my life.
I’m free of worrying every single day about my boys’ futures. The time for that will come, but it’s not here yet. I’ve learned to live more in the present.
I’m free of feeling guilty 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’ll ever be happy. Sometimes, my boys are by far the happiest people in our house.
Even on that roller coaster, 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 New Year’s resolutions fade with the first of many bites of chocolate, I resolve that remaining free is the one I will carry with me.
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