Tuesday, July 26, 2016

Autism's Summer

When Noé was 2 1/2 years old, and newly diagnosed with autism, I sat down at my little table in my little apartment in big New York City and wrote out an action plan, because that is how I deal with my problems. I "list" them away.  That summer day back in 2005, I wrote down every deficit and unreached milestone. And then I stamped a future date next to each bullet point. These dates were target goals for Noé to overcome each individual problem related to his autism.

I had him completely cured of his autism by age 6 and I was such a fool.

A naive young mother who loved her child and wanted desperately to help him navigate this disorder.

But nevertheless a fool.

Autism doesn't respond to timelines or targeted goals. For sure, progress can happen, even in the worst cases. We've had too many mini miracles for me to doubt that. But progress rarely, if ever, happens in a linear or tidy way.

Noé is now 13 1/2 years old. Each morning I drag myself out of bed early and finish my 'paid work' as quickly as possible. And then I sit down and work with Noé. I've given up on district-sponsored summer school. He spends more time on the bus than at the school site. And we've known for a long time that he really only learns in one-on-one situations that are highly motivating and fun for him.

We work together in 15 minute increments, while I dole out M&Ms and fruit snacks to keep him engaged. We practice writing his name, a skill he has learned and forgotten a half-dozen times over the years. I know he will rely on assistive technology and typing to communicate throughout his life, but I want him to be able to sign his name. I want him to have that one bit of freedom and ownership over his life. Noé could care less, but I press on.

We do simple addition with manipulatives, while in earshot, his little brother masters pre-Algebra via Kahn Academy. I model how to use adjectives on his communication device. "Do you want a BIG cookie or a LITTLE cookie?" We share how we are feeling in the moment, also using his magical talking device. Despite his blank face, Noé always FEELS GREAT!!!

I am skeptical.

This summer, we are conquering puberty. But probably puberty is conquering us. I show him how to put on deodorant. He applies it correctly under each arm, but does not bother to take the lid off.  We spend a lot of time practicing "quiet hands" and discussing things you can do in the bathroom or your bedroom but not at, say, THE SWIMMING AREA AT THE LAKE!!!

This particular summer has unleashed a fresh new fear. With his latest growth spurt and dark summer skin, I find myself looking at him and worrying throughout the day …. does he look more latino or white? Would it matter?  I know it might. How would he respond in a confrontation? I know he would never comply; he would never understand the expectations of such a stressful encounter. I know he could be in serious danger given the most star-crossed situation. And I know it can't be left to chance, that Ed and I must never leave his side.

It is all exhausting, terribly lonely, and I never really know if I'm doing things right by Noé. So many well-meaning people, yet never an offer of real help, never a break. And the ever-stark realization that autism will be in our lives forever.

We plug along each summer day with September and the promise of another school year on the horizon. We practice our sight word flash cards, sort the laundry, master the art of making chocolate milk from a mix, because time will pass anyway.


Unknown said...

Wonderful words. Your a hero to your boy and for that he feels great!

Unknown said...

Wonderful words. Your a hero to your boy and for that he feels great!

Melissa/Mojo said...

Thank you for this powerful, beautiful, raw post. Thank you for your honesty and humor. Thank you for making yourself vulnerable in order to teach us (although I don't assume that is your goal). This was intense. At my new job, I'll be teaching students with autism in an integrated classroom. I am aware there is so much I don't know. I'm working hard to learn as much as I can as quickly as I can, realizing it isn't enough. Thank you for opening up; I'll take your worry and your strength with me into my classroom. Love from Robin and me and the boys, Melissa

Laura Stone said...

What Mojo said. Really wish there was any way we could take your burden of exhaustion, loneliness, and worries from your shoulders for even just a few days. Thanks for sharing the reality of your life, it is as always eye opening.

Love you, and am always in admiration of your strength and all you accomplish,

Michelle Frost said...

Hi Jen, I was just thinking about you. I was reading a memoir of a family with an autistic son, and your House dream came back to me. Did I remember right that in your dream, his solution to help Noe was you just needed to change your deodorant? :) I know you have all been through so much over the years, and my heart goes out to you! I feel reluctant to say anything, because I really have no idea what you go through, but I send love out to you.