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Changing the Story


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.


Autism Life Hack Number 9: If Today is Bad—Christmas Comes Every Year!


Autism Life Hack Number 9: If Today is Bad—Christmas Comes Every Year!

Last week my friend Olivia started a blog. She’s going through a transition right now—leaving her day job to start an artistic adventure.  And what she found was that her desire to be a free spirit was being squelched by her need for…structure.  

Of course, this seems backwards, but it makes perfect sense to me as an artist and an autism aficionado.

So, here’s what I know about being an artist. A film maker needs a producer. A writer needs an editor. Michelangelo needed the Pope. And do we rail against those tyrants and their deadlines? And their ‘this won’t work because’? And their ‘we don’t have the budget for that idea’?  Yes, we do.  And then we produce art. Sometimes it’s great art, sometimes it’s just art that meets a deadline. Limits frame us and we can find freedom within the framework. That producer’s voice challenges us in our idea phase and we push back, most often by doing the work. Otherwise we tend to get lost in the idea phase, coming up with endless ideas that never quite get done.

We don’t like to do the work. Making stuff is hard! I recently set a goal for myself to blog once a week. I won’t tell you when I set that goal, but suffice it to say that it wasn’t when I actually started producing work once a week.  It was well before that. 

So, the tyranny of the deadline, the expectation of the producer, the demands of the donor keep us on track. 

Now, here’s what I know about autism. Once again, I’m not an autism expert, I’m a Henry expert.  And as a huge fan of Henry’s I’m also a fan of his particular autism.  Autism needs structure.  It craves it.  When it doesn’t get it, it has a meltdown.  I’ve noticed this in more than just Henry’s autism.  It happens a lot with the people in our community and mostly the people in our car line at our autism program school. 

Henry is actually pretty loose with his scheduling needs.  He can go with the flow more easily than others I’ve driven to the field trip.  I’m sure that’s in large part because I dragged him from this event to that when he was a toddler.  He had to get used to my freelancer schedule. 

One of the ways Henry handles his stress if he’s in transition is that he goes back to his calendar.  I know I’ve talked about this before as it related to Hurricane Irma. But here’s the beauty move he uses that I love: If things really aren’t making sense and he’s going to have to go with the flow longer than he’s comfortable, he launches THE CALENDAR.  He goes through every major event, listing as much of the year as he needs until he settles. 

Here’s an example:

Me: Mom needs to pick you up Tuesday and take you to school on Wednesday instead of Dad.  And then Granddad’s out of town, so Thursday will be different.

Henry: and then October Halloween. November Thanksgiving. December Christmas.  Then my birthday and spring break.  Then Summer!  Go to Grandma’s house. Go to Idaho. Fourth of July!  Theater week summer camp.  Then October Halloween.

Me: yep.  That’s what’s going to happen, I’ll pick you up on Tuesday and then Halloween will happen.  Thanksgiving will be the 4th Thursday in November, then Christmas. And we’re good?

Henry: Yep!  We’re good.

If you are going through a transition in your life, if you don’t have the structure you need, remind yourself of the pillars.  There are pillars to life that likely won’t change.  Christmas comes every year. The fourth of July is always on the fourth of July. Ramadan will be here for a month, even though the dates change. These are things you can count on!

Autism has all sorts of great life hacks for us. Henry and I do a David Letterman style top ten list of the Top Ten Autism Life Hacks That Will Change Your Life and how they can help us. Number 9, THE CALENDAR, is a good one and I hope you’ll use it!