I’ve never written a follow-up post before. I’ve kind of stayed away from them, to be honest.
I mean, everyone knows sequels are never as good as the originals. Unless, of course, you are talking about the Rocky movies, in which case it is indisputable that Rocky II is the best movie ever made.
“Yo Adrian! I did it!”
But sometimes rules are made to be broken, even if those rules only exist in my head and no one knows about them and they make very little sense anyway. So this week I have broken my no-sequel-unless-it’s-a-Rocky-movie rule so I could follow-up on our conversation from last week.
Quick re-cap: in my last post I talked about how my 10-year old son Jack feels very, very alone with his autism diagnosis. I compared him to a magical unicorn in that he is unusual and solitary, beautiful and mystifying. I asked readers to post about people in their own lives who are diagnosed with this tricky disorder.
And I was simply blown away by the hundreds of responses. I expected the posts to look like this:
“Owen, 11, New York.”
But you wrote things like this:
“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.”
I read each and every message, e-mail, comment, and post. I read them and I re-read them and when I was done with that, I read them all again. I cried every time.
Joe does not handle the crying well. He does not know what to do when I cry. He kind of clears his throat and looks down at his feet, bewildered. Eventually he offers me a cookie.This usually works, and I stop.
But I could not stop because you kept writing. You wrote stories about your favorite people and how much they love Minecraft and Legos and spaceships and pirates.
“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 your words. I saw myself in your words. I breathed in your hope and encouragement, pain and love.
And the comments from the dads? Well, they simply dissolved me. I think it’s because I know how much it would take for Joe to share about his son on a blog or in a Facebook message, to reveal the pain and hope and fear that is unique to a father’s heart.
“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 about 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 of you courageously shared a piece of yourselves.
“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 you each left. Watching his face light from within, I could tell you did what I could not. Through words and sentences and paragraphs and social media, you connected my son to a larger world beyond himself.
You showed him that yes, there are other magical unicorns.
“My beautiful 11year old has Autism and ADHD, she too feels alone even when she’s with others.”
Many of your posts about your tender little toddlers reminded me of the days when Joe and I were in the trenches of autism.
See, right now we live with autism, we struggle and sometimes rejoice with autism, but that’s nothing compared to the heat of the diagnosis battle, when you’re trying to figure out services and early intervention and speech therapy, all while your little guy or gal is tearing up the house and starting the car.
I wrote here about how the biggest fight I ever had with Joe was over Oreos. And this is true, it was. But perhaps the most damaging fight I’ve ever had with my husband was years later, when Jack was two and a half.
I walked in the door one afternoon in January and announced he was starting in an integrated preschool in downtown Buffalo the following week, and he would take the bus.
“Wait, what? He’s going to school?”
“Well, yes,” I told him. “That’s what we’ve been working towards all this time.”
(What I really wanted to say was, “Why the f%$* do you think I’ve been going to all these appointments and evaluations and meetings for the past six months? Because I like watching my son barely respond to his own name or stack blocks or point his finger?”)
“I’m just saying. Don’t you think this is all a little fast?” Cue enormous argument and four-day standoff.
If I’ve learned anything from the posts this week, it’s that autism casts a wide, arbitrary net. Sometimes the net scoops up more than one from a family, 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…”
After dinner one night this week, I sat down to my laptop for a few minutes to read all of your comments again and start putting my notes together for this post. Predictably, Jack came in to hover over my shoulder and beg for Itunes.
But once again he was drawn into the thread on Facebook, to the pictures and details and descriptions of your 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.”
Jack bounded out of the room to take his shower, and I sat in our little office thinking back to our fight about integrated preschool. Goodness, how I hated my husband that cold, gray day in Buffalo. I hated him for standing in my way and not understanding my panic.
But now–eight years later–I realize that everyone’s heart breaks differently. Joe needed more time to understand and absorb the neurological anomaly in his tiny son’s brain. Yet I was racing against an imaginary spectrum clock, racing to find services and early intervention and the best occupational therapy.
In the end we were both right and both wrong and both heartbroken.
I guess all this time I thought bajillion was a number, a fictitious way to quantify replies to a random blog post. You have shown me 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 brothers sliding down autism’s slippery bell curve together, laughing and giggling and looking up to the bright blue sky overhead.
It is a no rules Yo Adrian kind of thing.
If you want, you can click here to see the entire thread of Facebook comments from the week. Warning: reading them may cause crying. And laughing. And head-nodding. Who knows? You may even see a unicorn.