By Eileen O’Connor
Just like many other kids’ autism diagnosis, my daughter’s included the words: language, motor and cognitive, delays. As she was not yet 2, I focused on the word delay. It offered a glimmer of hope. After all, a delayed train eventually arrives at the station. I held on to that term until it became clear we were not talking delay — we were talking derailment.
I don’t hold it against the doctors and therapists. They could not say for sure – and hope is an important thing. Besides their summation gave us something to strive for. We enlisted Erin in a 40-hour per week regimen of physical, occupational, speech, and behavior therapy. She made strides, but the deficits did not fall away as I thought they might. In fact, as she has grown, some more pronounced today, while other hurdles have developed.
Sixteen years down this road, I’d like to report that life gets easier — but it doesn’t. We may ridicule the prevalence of shiny, happy social media posts, but who wants to process or advertise the details of a downward spiral or, even worse, the mundane hurdles and setbacks of an unfolding disorder. When asked how things are going, after a while you find yourself responding: <fine, great, never a dull moment.>
Our culture of pull up your bootstraps, American optimism conditions us to expect an upward trajectory, to project a positive change – to affirm the child is only delayed. We are taught from a young age that the longer you plug away at something, the more adept you become at doing it. A host of platitudes reinforce this: <Practice makes perfect. Keep on the sunny side. Time heals all wounds.>
I have found the single hardest thing for parents of a child with autism is just that: the passage of time. It’s not the fact that your child has a disability, that life did not turn out as planned. You digest and accept that big ticket item: <life is not fair>. Got it. It’s the daily reminders of how that platitude takes shape that trip you up — and leave you wondering, is this really still happening?
Your child gets bigger and meltdowns are no longer the sweep it under the rug variety. Your other kids get older and see their siblings and home for what it is: different and difficult. Your spouse and your marriage age, many fray, and some days you look at each other and ask how did we get here and how do we keep going?
I’m beginning to understand what Emily Dickinson meant by “Hope is the thing with feathers.” Hope can feel elusive. It alights and then flies away. You barely feel it but then on the heels of your worst day something happens to make it all fall away.
The other morning at three a.m., as I begged Erin to go back to sleep, I looked up to see her struggling to pull on her sock. Suddenly she succeeded and announced: “I did it!” Ungodly hour aside, I could not help but join in the celebration: “That’s awesome,” I said. And just like that, hope returns to the picture.
Slowly you see that maybe the picture is not what you thought it to be. You come to understand that maybe independence means something different for every child and to learn that maybe the challenge for every parent is to meet them where they are, to accept where they are going and to appreciate the space between derailment and delay.
Possibly there was a grain of truth in that long-ago diagnosis. Maybe I didn’t realize what they were saying when I first heard it. Maybe I didn’t want to know. Who can say? We all hope the train is right around the bend. It’s what keeps us standing on the platform — and so grateful when it finally arrives.