Chickens on Handlebars

This being the last week of Autism Awareness Month, I thought I’d conclude things on a relatively lighter note, a ‘different’ note.

My readers know by now that autism wasn’t always sunshine and rainbows for my family, and even this far down in our autism journey, we still sometimes find ourselves deep in the autism trenches fighting off some new antagonist instead of frolicking in the hills like Julie Andrews singing “The Hills are Alive with the Sound of Railroad Crossings.” Sometimes we’re ‘stimming’ on the disco dance floor and other times we are “going off the rails on the crazy train” à la Ozzy Ozbourne (our official anthem of the household).

Ask me now how to describe autism, and I’ll maintain that autism is a journey. Sometimes it’s more like a trip. Not exactly a conventional trip to Disney World or San Francisco or even to the store … It’s more like a trip to Cuba. It’s a place you never thought you’d like to go, but once you get there, if you’re a certain kind of person, you wind up glad you did. And I’m like that. I like Cuba, so naturally I’ve gone back about 20 times.

I remember my first trip to Havana, Cuba back in 2000. It was as if I had left Earth and landed on an entirely different planet. There were myriads of odd, poetic-like and almost ethereal things going on in the streets that even my own warped whimsical imagination could never conjure up. There are things there I can see, do, smell, taste, experience on that island that I can’t find anywhere else.

I guess my life with an autistic child is sort of like Cuba in a way, if you will indulge me in this analogy.

First, though, let me say that in the past when I’d even mention to somebody that I liked traveling to Cuba, the response was usually, “Really? Holy crap! Why?” It’s such a place of mystery, of limited access, forbidden entry, of poverty, oppression, and, yes, revolution – why on earth would one find that appealing? You can’t even get Wi-Fi over there, so why would anyone want to go there?

Aside from the obvious – its natural beauty, tropical climate, musical and artistic culture, the preservation of its colonial history, the rum, tobacco, and the Hemingway factor – the place is simply different than what I am used to … and I like ‘different.’

It feels to me a lot like how having a child with autism does; it requires something else of me. It challenges my dominant paradigms, it tests my patience, and it makes me adapt to my surroundings in ways I never face in my own country. It makes me question whether or not I actually do, in fact, speak the language because, whatever that taxi driver is saying, it definitely isn’t Spanish!

Cuba is abundant in beauty. Abstract beauty, not just the concrete and obvious perceptible beauty of the sky, the sea, the palm trees, the old mint condition ’57 Chevy that is likely held together with rubber bands and paper clips, or the pretty women walking down the Prado. There is an intangible beauty to it all. There’s magic in the scent of Cuban diesel exhaust mixed with the smoke of a Cuban cigar. There is a strange spirit in the breaking of communist bread. It is a beauty that must be sensed, felt, and taken in.

There is wonder in the early-morning spectacle of the avocado-seller shouting “Aguacate!” while pushing his wooden clunker of a cart down the street and stopping at a rope dangling from an apartment, lowered down from the fourth floor above with a plastic bag attached and pesos inside for the seller to take and replace with avocados for an unseen person to pull up again.

She appeared like a miracle to me, the little girl weaving in and out of the shadows cast by the tall colonial building covered in the dust of centuries past and urban decay, riding a bicycle in the street with a chicken calmly roosted on the handlebars.

Watching it all felt so otherworldly, bizarre, and beautiful.

Such is the beauty in autism. If not for my son, I never would have seen the splendor in the way the line of overhead lights in the Ted Williams Tunnel can flow like a rhythmic river of light past your squinted eyes.

Maybe it’s in the more abstract beauty of autism – such as in the distance, the inaccessibility of Cuba – that the beauty is found. That fleeting meeting of the eyes, the time when a hug ensues instead of a pulling away, an almost elusive fairytale-like encounter like the sleeping princess beneath the glass coffin or the dance with the prince before it turns midnight. Maybe the beauty of autism is like the thorns of the rose that make its possession so much more beautiful and coveted.

Sometimes the beauty resides in my son’s inherent ability to be present and pure in the moment, to be transparent and carefree in his joyful perception of rain. Like with Cuba, the beauty lies within his ability to be himself – unmasked, unprotected by the layers that we dress ourselves in to hide who we truly are.

But with autism as with Cuba, despite the beauty, those permanent residents are familiar with the obstacles. There is a common isolation of those with autism from the community and often from close personal relationships outside the family. Similarly, the inhabitants of Cuba wish they could leave, but they are trapped, and getting a visa out of there is difficult at best and usually impossible. There are misconceptions and stereotypes, and the rest of the world might already have formed an opinion without an introduction, without ever visiting.

Regardless, in Cuba, they have these cool three-wheeled trucks that “meep” by, and papier-mâché-like motorcycles with a half shell in the back they call “cocotaxis” that Diego loves, and the ubiquitous “bicitaxi” that will ride you anywhere in the city you want while blaring your favorite reggaeton song for pesos. Diego and I both love going to Cuba. You want ‘different’, you go to Cuba, and that’s where we feel at home.

Looking through the autism lens is like looking around in Cuba – I never really look at “normal” the same as the rest of the world. Autism has a way of tossing “normal” out the window. Autism puts “normal” into a plastic bag lowered down to the street below to happily exchange for some avocados. Autism is a chicken on the handlebars of a little girl’s bike. Just like the famous autistic author, speaker, and animal scientist Temple Grandin always says, autism is just “different, not less.”

Like in Cuba and in this autism mom’s life, we make do with what we have. You get things done using what you have and the way you know how. You see beauty in the unlikely and in both the astonishing and the “mundane.” Maybe you have a pet chicken and you take it for a spin on your bicycle and there’s nothing wrong with that, either.

As this year’s Autism Awareness Month comes to a close, I leave you with one last thought of defiant affection: We’re into avocados, chickens on handlebars, and ‘different’. They can keep their normal. We’re going to Cuba.

By Jean Perry

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