The days, weeks and months following Evan’s autism diagnosis were a blur. Nothing about our lives was different except that one day he was Evan and the next day he was Evan with autism. But with that diagnosis – the one we knew was coming but hoped wouldn’t – everything about our world suddenly felt different, scary and overwhelming.
We had to remind ourselves Evan was still the same toddler with an infectious smile and a love of music. He was the same boy who liked watching his big brother play. He was the same child who loved swings and toy blocks. The only thing different was that we had an explanation for his developmental delays, his inability to connect with us and his sensitivities to certain sounds and aversions to particular foods.
Intellectually, we had our answer; now we could formulate a plan that included speech therapy, occupational therapy, physical therapy and a very intense full-day, preschool program. Emotionally, we were trying to wrap our heads around what the rest of our lives would be like raising a child with autism, and what life would be like for our son as he navigated a world that seemed confusing and overwhelming to him.
Every day seemed to present a new struggle that we felt unequipped to handle. Evan wasn’t eating enough. The doctors considered a feeding tube. He spent days and nights fussing and crying uncontrollably. We had no idea why. We were in survival mode, trying to adapt to a new normal with a three-year-old, a two-year-old with a new autism diagnosis and a newborn.
It’s hard to remember much about those early days, but there is one conversation that I will never forget. We were on vacationing in Northern Michigan. Noah, our eldest, was running around the yard and Evan was rolling around in the grass at the house we rented. It was a perfect sunny day, and I was about to get some great advice.
My phone rang. It was another autism mom I had been trying to connect with for a few weeks. She was several years ahead of me on her journey and, at the time, one of the few other moms I knew parenting a child on the spectrum. We talked for more than an hour. I hung up with my two best pieces of advice ever. The first thing she told me: Just be his mom. You don’t have to always feel like you’re his teacher or therapist. There are others in his life who can and will serve that role.” Suddenly, a huge burden was lifted from my slouching shoulders. I didn’t have to make every interaction a teaching or therapy moment. What a huge relief.
The second thing she told me was that if we ever went to Disney, we could get a disability pass so that we wouldn’t have to wait in line for any of the rides.
“Wait, what? Seriously, no lines?”
At the time, we desperately needed to feel something positive about Evan’s autism diagnosis. Six months later we were Florida bound, referring to Evan as our meal ticket. For two days, we pushed a double stroller around Disney World and Epcot, embracing autism as we avoided hours of waiting in lines.
Disney has since stopped doing this because some visitors were claiming to be disabled and ruining it for those who really needed the passes. At the time, we really needed these passes. There was no way that Evan could have survived a line that involved waiting more than a few minutes. He would have had a meltdown. The pass was truly a lifesaver because it allowed a family like mine a chance to enjoy the park.
There were many people who didn’t understand why we were able to “cut” the line. And yes, there were many families with three and four year- olds who also had a hard time waiting in line. They had no idea that Evan was overly sensitive to noises, crowds and smells, and that crowded lines increased his anxiety to unmanageable levels. Yet he wanted to be there to see his favorite characters and experience the thrill of a spinning ride.
Disney showed us that when our son can’t adapt to the world, we can ask the world to adapt to him – obviously within reason, but we realized that reasonable accommodations can and should be made.
We took the Disney model to the airport and asked that we avoid stressful security lines. We called restaurants that didn’t take reservations and asked if they would consider taking one for us. Most, but not all, did. We took this idea to doctors’ appointments and asked to be scheduled at a time where we’d be one of the first appointments, or if we could check in but wait in the car if the doctor was running late.
Not so long ago we decided to try waiting at airport security because the line didn’t look that long. After 15 minutes of little movement, I reached for Evan’s hand and marched toward the front of the line to play our autism trump card. The TSA agent waved us through, and within minutes we were at the gate. Sitting on the plane I had an “ah ha” moment: Evan had been fine in the security line and would have probably been okay to continue waiting. I was the one who got impatient.
I reminded myself that as Evan was getting older we should again start to practice waiting in lines. For the most part, he is able to wait. Amusement parks are still hard because, from a sensory perspective there is so much going on and repeatedly waiting in lines still presents challenges.
It’s great that Evan has come a long way overall, and honestly I would take progress over a “meal ticket” or “trump card” any day.
It’s interesting to look back and reflect not only on Evan’s progress but my own metamorphosis, as well. Eight years ago, when Evan was first diagnosed, I was angry, scared and sad about raising a child with autism. At the time, the only silver lining in the clouds on that sunny day in Northern Michigan was the idea that we’d have special perks at Disney. Things are definitely easier than they used to be and while a fast pass is always nice, on most days it’s no longer a necessity.