“Henry. Henry has autism,” my ten-year-old son, Jack, announced one afternoon. We’d just finished picking blueberries, and I looked over at my five-year-old who was trying to see if one of the round ripe fruit would fit in his nostril—and back at Jack.
“I can see why you might think that,” I said slowly. “But he isn’t diagnosed with autism.”
“Who else. Who else has it. With me.”
“Well, lots of people have autism, Jack.”
What do I say?
Sure, I can tell him all the about the statistics. I could sit him down and say, “Listen, Jack, one out of eighty-eight kids are diagnosed now, so there are literally a bajillion people like you, people who picture Wednesday as orange and remember what the ophthalmologist wore six months ago.”
But that would be meaningless to him.
Instead, I try to point out autism’s more savory qualities; his memory and his kindness, his determination and his progress. But it does little to abate the obvious loneliness, the isolation of being the only one in his family, in his class, maybe in the universe diagnosed with spectrum disorder.
It’s as though I’m telling him this:
“Jack you are a brilliant unicorn amongst us ordinary horses. You are so beautiful!
We know there are tons of you out there—bajillions, even—but we don’t know how to show you. We don’t know where they all are.
Oh, and magical unicorn? We don’t really get you. We don’t understand you. We are blinded by your colorful beauty but your tantrums scare the crap out of us. In fact, maybe it would just be better if you were a plain old horse like the rest of us. Then we could figure out how to teach you fractions.”
I never had a concrete plan or vision when I started writing my blog. It’s been over two years now, and looking back I guess I also did it so I would feel less alone. From the safety of my little office I could share my heartache and make my jokes and connect through cyberspace with other people like me who are balancing autism and parenthood and play dough and swimming lessons. And if there was a smidgen of autism awareness to the whole thing, well, that was just a bonus.
But ultimately, I have failed. I have failed because, while I’ve connected to a wider community of people, the boy sitting in the room next to me—the boy with autism—feels confused and scared and ashamed.
He feels alone.
And so I asked my readers on Facebook to help show my son that yes, there are bajillions of others just like him; people who play beautiful music and have jobs to earn money and love to go to the movies and always eat ice cream after dinner.
And I was simply blown away by the hundreds of responses.
“Hey, Jack. This is my son, also named Jack. He has autism. He is seven years old. And, although his social skills are deemed “very poor”, you’ll never meet a human being with a greater ability to “own the room.” You are not alone my friend.”
“Hello, Jack! This is my 15 year old grandson, who also has autism. He is the wonderful unicorn in my world.”
I saw Jack in these words. I saw myself in these words. I breathed in the hope and encouragement, pain and love.
“I have a son who is 14 and has autism ….I am a very athletic person and like most fathers looked forward to teaching and playing sports with my son which I cannot do– but what I can do is embrace the brilliant mind that my son has, his sense of humor, his kindness and his willingness to love — my job in life is to make sure Vinny can live the best life possible.”
Friends from high school reconnected. Old colleagues reached out, and one mother shared her quiet child’s beautiful smile.
“Hi Jack, My son has autism. He is six. He doesn’t speak at all and he has a smile that can light up a room…just like yours.”
Teachers from around the country spoke.
“I’ve had several students with autism and each one of them has changed my life in some way.”
Minnesota, New Jersey, Oregon, Illinois, San Diego, California.
“Hi Jack! Guess what? I have two sons who have autism. They are twins. They are 13 years old and live in Iowa. One boy loves to go swimming, he loves elevators, and he has always enjoyed watching doors open and close. The other has a spectacular memory (he knows many facts), he sings with perfect pitch, and he plays the trombone.”
We read one message from a family in the Netherlands together over dinner at our favorite Mexican restaurant Monday night. Jack’s face lit with a slow smile, and then he reported, “Amsterdam. Is the capital of the Netherlands.”
“My younger son is autistic. He is eight and likes to play soccer and loves everything Minecraft. He is kind, loving and so much fun 🙂 We live in Iceland. You are not alone!”
A few courageously shared a piece of themselves.
“I have autism. I have a very successful life and I have my share of autism related problems too. But I’m 25 years old, I’ve accomplished much, and I love who I am. He is most definitely not alone.”
Throughout the week Jack asked for my phone so he could read the comments everyone left. Each and every time, his face lit from within.
“My beautiful 11 year old has Autism and ADHD, she too feels alone even when she’s with others.”
If I’ve learned anything, it’s that autism casts a wide, arbitrary net. Sometimes the net scoops up more than one from a family, and other times it is a solitary selection.
“I have not one but two wonderful boys on the spectrum…..Autism is just a facet of who they are, like having brown eyes or blonde hair or freckles or skinny legs or glasses…”
One morning I was sitting at my laptop reading e-mails, and predictably Jack came in to hover over my shoulder and bed for ITunes. But once again he was drawn into the thread on Facebook, to the pictures and details and descriptions of daughters and sons, students and grandchildren, nephews and neighbors.
And then he paused for a moment.
“Joe. Cariello,” he breathed. “That is Dad.”
I squinted at the screen and saw this all the way at the bottom of the Facebook thread:
“Hi Jack. My son has autism, and I have loved you since the day you were born.”
I guess I thought bajillion was a number, a fictitious way to quantify replies to a random blog post. But I was wrong. It’s not a number at all.
Bajillion is confusion and fear and golden dogs named Scooby. It is boys from Michigan and girls from Utah and a 13-year old with perfect pitch.
It is rage and disappointment, grace and unity. It is facing each other across the dinner table night after night with the same pit in your stomach while your son screams and thrashes on the floor because the squash is too yellow too yellow too yellow.
It is Disney movies and breathtaking memory and the extraordinary gift of unusual people. It is magical and beautiful, solitary and mystifying.
A bajillion is both a lot and a little, it is large and small. But some days, it is nothing more than two brothers sliding down autism’s slippery bell curve together, laughing and giggling beneath a brilliant blue sky.
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