A Diner Story in Autism Land

It was a quintessential New York corner diner – the hustle of waitresses bringing sandwiches, soups and other lunch and breakfast fair to mostly regular customers. Booths, tables with chairs and a diner counter where you could get what I thought was the best milkshake in New York City.

Olympic Flame Diner, on W. 60^th Street kitty-corner from then-Roosevelt Hospital – where D was born, where A would be born several months later.

Back when D was a little over two years old, and I was, well I was pretty young, back when D had started receiving services through Early Intervention and autism was a word that lurked in my head all the time, but I was too scared to talk about it with anyone — I used to take D to Olympic Flame Diner for brunch.

We were living paycheck to paycheck back then, and eating out wasn’t something we could do all the time. But I figured splitting an order with D would be fine.

Sitting across from each other in a booth (I learned early on that booths were the way to go with D – he did better, felt better in the enclosed space of a booth.), I cut the French Toast in pieces and divided it up on two plates.

It was tough going – the noise of the diner, the bright lights, it would all make him squirm in his chair and get agitated. He was in this phase where he wanted to run around while eating. I had spent the entire summer before feeding him every meal in the laundry room of our apartment building while he ran back and forth and stimmed on the spinning dryers, or in one of the parks close to our apartment building.

Not one meal was done in the house.

So while the French toast at Olympic Flame Diner was a treat, sitting in the diner to eat wasn’t particularly easy.

A mother watching her young son alternate between the struggle and the happiness in the food – swinging from one end of the pendulum to the other. I wish I had known then what I knew now. I wish I could’ve enjoyed him more for the beautiful child he was instead of constantly worrying about what others were thinking, what the next steps should be, what I was missing, what we should focus on next in his therapy and the laundry list of things I needed to figure out how to teach him.

Remembering those years almost hurts too much. Too many emotions, too much rawness, too much fear and too much uncertainty, which is so very, very sad given that those years also were full of soft boy cheeks, little arms hugging me, playground antics and singing nursery rhymes to him over and over, leaving out the last word for him to fill in.

As the years passed and D grew older and daughter A and son H joined our family, we stopped going out to dinner as a family for a variety of reasons. The older D got, the harder it became, because the behaviors and quirks he engaged in as a growing young man no longer seemed as manageable for him or for us in a restaurant setting.

People are usually more forgiving of a toddler or young child who is acting up or behaving “differently.” When it’s a strapping young man, the tolerance and acceptance level goes way down.

And, part of it was ourselves. The further we get along in this autism journey with D, the more we try to consider what is best for everyone – is eating out worth the stress it may cause to D, to his siblings or to us? Will we relax and enjoy better if we cook and eat at home or if we occasionally get take out?

Other autistic individuals innately enjoy eating out and do fine with it. Or, they may have just continued to eat out, figuring out solutions and methods to make it easier on everyone instead of retreating from it as we have done.

We make decisions as a family – what do we pursue? What do we let go of? How do we accommodate each other? What do we do to push ourselves and push D while balancing that against what may be too difficult for him or for us.

D still likes to roam around sometimes at meal time. After years of working on table manners and “dinnertime” behavior, I learned that being rigid simply wouldn’t work. For several years D ate by himself or was fed (usually with me sitting nearby for company) before the rest of us ate dinner. Sitting at the table with all those faces and the familial conversation was too much for him.

The past six-to-eight months though have seen a return to a full-family meal, with D starting a meal with us. Often he sits for the entire meal with us, eating on his own. Sometimes he leaves and circles back for a bite of his food. Other nights he is too agitated to sit with us, and I feed him or give him his dinner later. It’s a fluid, ever-changing process.

But restaurants? Yeah, not so much.

He works on it – every week he goes out for community-based instruction with his home therapists and care givers, ordering French fries or chicken nuggets at the Chik-fil-e near our home. Sometimes they go in and order the meal and leave. Other times they sit in a booth and eat their food there.

I wonder sometimes what good all those CBIs are when we aren’t trying themselves ourselves.

So yesterday I shook myself out of complacency. After 13 years, I took D for brunch at a local diner, one owned by friends of mine who have an autistic daughter, whose wait staff knows how to get food out quickly and make things easy on all their customers, especially ones with special needs.

We sat in a booth across from each other, D and I. Him now 15, and me, well I’m a lot older too. (Booths are still a better choice for us.) He got pancakes – this time he got his own order because there was no way he was sharing food with me. I ate an omelet. I didn’t hurry in my eating, nor did we linger at the table. We ate in a sensible time, during which he got up twice to take a turn about the room.

And I didn’t sweat it, knowing that’s what he needed to feel centered and all right.

So many things were different than 13 years ago. So many things were still the same. But what mattered, what really mattered was D and I, in that time and space, in that moment, eating brunch together. This was everything.

No more worrying about people around us, no more worrying about next steps, about things to work on, about what needed to be done. If he started screaming (which he didn’t), I was prepared to calmly wrap things up and head outside with him to take a break.

Too often we sell ourselves short and become afraid to try. Even now, even after everything I’ve learned, everything I’ve seen D do and overcome, every challenge I’ve seen him meet and every time I’ve seen him retreat, I still need reminding of that.

It’s never done.

It’s never over.

The story is still being written.

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