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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.


Two Real Moms Acting Their Parts

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Two Real Moms Acting Their Parts

A few weeks ago, a friend sent me a link to this video about Mickey Rowe, the young man playing  the lead in a production of The Curious Incident of the Dog in the Night Time. A year ago, the Broadway tour of Curious was in Orlando and I had the opportunity to interview the actor that played the Mother, Felicity Jones Latta. I was interviewing her for a podcast for the arts center, so we were focused on the show: We discussed her journey as a professional artist and as an actor (two very different journeys) and her process for creating this character, the mother of a unique child.

We had a great discussion and then when the formal podcast was over, we had another discussion.  I admitted to her that, like the young man in the play, my child is unique.  My child doesn’t understand how life works.  My child thinks differently.  Oh, and he has curly hair and flicks his fingers, much like the actor Adam Langdon, who played Christopher in the tour. Only Adam was acting at flicking his fingers and acting about not needing eye contact.

Then she interviewed me. She wanted to know what it was like for me to watch the play and I told her the truth. I felt exposed.  I felt like everyone in the theater was looking at me to see how I responded. I know that all of my friends who saw the show during the run in Orlando would text or call or post “I was thinking about you the whole time!”  And that I didn’t want to be thought of. I didn’t want everyone knowing how it felt to be the mother of this child.

Which is kind of weird because I’m always writing and speaking and looking for opportunities to for Henry and I share what our life is like.  But then those audiences see our life and experiences in the way that we share them, which is usually hopeful, meaningful, inspirational and often funny.  Not in the visceral, sometimes dangerous, often frantic, usually frustrating way portrayed in this production.  Which is also an experience in how we live our lives.

But there it was all on stage for everyone to experience.

She asked me what the difference was between me and the mother she played. This was easy.  Her mother was in true crisis a part of which was that she didn’t know how she felt about being a mother, his mother.  She was also living in a way in which the disease, the disorder, was in charge of her life.  The autism was running the show. If it didn’t want to hug, then there’s no hugging. If it didn’t want to manage a meltdown, then there was a meltdown.  If it couldn’t go into a public place, then it didn’t go.

In my world, we are in charge.  I tell autism what we need to do.  If it doesn’t want to hug, ok we’ll train it to receive and give hugs.  Because I, Alice, Henry’s mom, needs hugs. If autism doesn’t want public places then we train it to manage being out in public.  We break it down.  We break its grip on Henry.

This is challenging work because it requires finding the dividing line between Henry and autism.  What does Henry want to do?  What is autism not allowing him to do? What gift is autism giving him that allows him to do things he might otherwise not be able to do? What does Henry actually not want to do?

The best example is the birds.  He hates birds.  We worked and worked on being in public places (parking lots, the zoo, Sea World) where there might be birds. And we survived those attempts.  But he hates them.  They freak him out.  So, we don’t go places where there are flocks of birds. And we move quickly if they show up where we are.

That dividing line was much clearer when he was small.  No one wants to have a meltdown or injure himself or someone he loves.  So, we did sensory exercises.  We practiced, timed our outings, over prepared, wrote social stories and we found out how far we could get.

Dr. Phil's teaching on dealing with addiction in a person you love is “You’re talking to the disease now.” I apply this liberally. Autism doesn’t get to tell me who I am or what my life looks like, and it doesn’t get to dictate who Henry is. I tell it what it’s life looks like. Now, my work as the mother of an adult is to give him the reigns to help him to make the distinction between autism and what he actually wants to do. He gets to break the grip.

That’s the biggest difference between Henry and I and Christopher and his Mom. In the play, they are subject to it. In my show, it is subject to us.

We didn’t record this part of our conversation because in our podcast we were representing the show, the character and the theater.  This conversation was purely personal—me sharing how her performance impacted me and hopefully giving her the support to continue performing her role. And her discovering how the mother of a unique, curly-haired young adult felt about the story she was embodying. It was a powerful hour of truth and art.  My favorite thing.  

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We'd Rather Be Awesome Than Perfect


We'd Rather Be Awesome Than Perfect

For Mother's Day, here's note I wrote a new mom of a child with a disability.

Hi Mama. Sooooo, it’s awful. It's wonderful. It doesn't matter at all. It totally matters and changes everything. It's exhilarating and you can do this. It's exhausting and some days you just can't.

It's about her and carving the best path for her to thrive. It's about you — what you can do and letting what you can't do be ok. 

Don't be fooled by the urgency of disability — you are in charge, not it. She is more important than it. You'll know when there is a true emergency. Living with disability feels like an emergency all day long. It's not. No need to panic. 

I live on autism time — x4 as long and x4 the effort. Figure out what your disability time is and make sure your expectations for yourself and her are at that timetable so you don't go insane. 

Remember you are a family so what's good for you, your other child, and your husband are also what’s good for this child. This disability does not trump all needs at all times. 

Release the need to cure. You have your own disabilities that you know how to manage, I have mine, Henry has his. I had to give up making every minute about curing him. And curing me. It's an imperfect life. Perfect is per some standard that has nothing to do with us. 

And we'd rather be awesome than perfect.

Love you & your beautiful girls. Let me know how I can help you.