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Sharing Messy Stories or When Autism got Tweetable 

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Sharing Messy Stories or When Autism got Tweetable 

This summer there were at least three posts about children with autism that went viral.  I wrote about one in my monthly post on The Gloria Sirens, and how it reminded me of The One Question You Should Ask Yourself in the Middle of a Breakdown.

The posts were the kind of messy victory stories that I love — that adorable little boy in his cowboy suit breaking through to his first words.  The Universal Studios meltdown and deep breathing. I wondered how I would have handled our messiest stories if there was Twitter and Instagram back in the dark ages of the beginning of this millennia. 

When Henry was about five, we were in our Starbucks with a group of senior citizens. Henry was flapping a green straw — it was always a green straw which is why we were always in Starbucks. A tall, lanky gentleman with glasses got up from the group’s conversation to point at Henry and ask me, “Is that autism?  Is that what he has?”  

“Yes, how did you know?” I said. 

“I saw it on Diane Sawyer.” 

In that moment, I was no longer alone. I know it’s hard to believe but 20 years ago, it was unusual to see someone with autism. Collectively, we didn’t go out a lot. If you did see a parent braving the grocery store you probably wouldn’t have known what the deal was with that kid.

Other toddlers and pre-k kids had mousse in their hair and little khaki shorts with plaid shirts tucked in. Henry wore pull-on shorts and a t-shirt with marks on the neckline from where he chewed it. He had a scab on top of his nose from obsessively flicking his fingernail across the skin. I had the hollowed out eyes of someone always searching — for the next treatment, the next cure, his other shoe.  

We weren’t cute.  We weren’t victorious.  It wasn’t adorable.  It was filled with poop.  No, really. Some children with autism smear their feces. Henry was one of the some who did — on the walls of his room, on the keyboard of the desktop computer, into the CD rom drive. If you’re too young to picture a CD rom drive, imagine cleaning poop out of the port to your iPhone. 

Social media is filled with our sizzle reels while our blooper reels remain hidden from likes. So much of my early childhood parenting was more blooper reel than sizzle. I’m guessing that’s still the case for most families. But I’m hopeful that all of our stories will be more and more tweetable. That we’ll share the messiness in our lives along with the wins.  It makes those victories, and those meltdowns, richer for us all.

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Changing the Story

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Changing the Story

I have wrestled all summer with how to qualify the transition we’re in. For Henry this summer has been a perfect blueprint of his future — his plan is to take the rest of his life off. He describes graduation from High School as ‘retirement’. He’s told teachers, friends, disinterested passers-by, and members of the media that his next step would be ‘staying home and playing games’. Between graduation and moving house there was a good deal of ‘staying home and playing games’.  

I remember when he was an infant and I was warned that if I didn’t move from my weak breast milk to formula he would be diagnosed with ‘failure to thrive’. That is a gut punch of a phrase for a new mommy. I don’t know what the medical establishment means by it, but what it sounded like, smelled like, tasted like and felt like to me was: YOU are failing to thrive your baby.

This transition has felt like the adult equivalent to ‘failure to thrive’. I leave him in the morning with enough food for the day and text him every hour. He rarely texts back. I developed an infected tear duct in my left eye the week of his graduation. Two weeks later when we closed on our house it moved to the right eye. Did I mention we also bought a house?

In order to get Henry to do something, anything, I created a daily to-do list of hygiene behaviors, meal plans, and one chore — vacuuming, collecting the garbage, wiping down the bathrooms.  Everything had a check box. If I forget the daily print out, I come home to him in bed at 4:30 p.m. in the same clothes as the night before.  He gets up and has breakfast at dinner time.  If I leave the daily print out, I come home to a clean and fresh smelling young man who has proudly accomplished all his chores by 10a.m. so he can get back to ‘staying home and playing games’. 

While for me this feels like failure to thrive, I started wondering if for Henry this isn’t as dire a situation. Maybe the push to stay home and play games wasn’t so much a regression, a failure to thrive, but a true break. He’s been supervised on a 1 - 4 ratio for much of his life. His days were scheduled to the minute. What if he just wanted a break? My sister with her two adult children and my friend with her four, described their kids’ responses to graduation as a similar experience of waywardness, confusion and need for a break —  though the behaviors were slightly more sophisticated and involved tattoos, piercings, job quitting or living in a hammock in the back yard. 

Towards the end of August, I spoke with him in a meeting on our back porch. “Henry, most people who graduate take a break for the summer.  They back-pack in Europe. They go on a camping trip. They live at the beach and do odd jobs.  Summer is ending soon and you’ll need to get started on your work life now that your school life has ended.”

Changing the story from my failure to launch my son into thriving to he’s on the autistic equivalent to backpacking in Europe has at least caused my eye infections to clear up. His graduation is about him and about me — and we have two different stories about it. Finding the story that serves us both best is the challenge and the reward.

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