Hi, thanks for joining me for another issue of It’s Like This. In the previous issue, I was remembering one of the first autism conferences I attended and some advice I was given as a new parent. That reminded me of a more recent interaction – when I was sitting in the other seat.

When my son was 10 or 11 years old, I stopped going to most of the autism trainings that I’d been so gung ho about in those first few years. This was due to a combination of financial needs (those conferences can get expensive) and a growing fatalism that there was nothing new being offered.

At that time, school was particularly frustrating and home therapies seemed to be stalling. I had watched many of my son’s special needs classmates make progress in integrated settings while our child moved in the opposite direction toward needing more individualized and isolated instruction. And as family, we were taking on a whole new area of study – the behavioral health system – as my son’s pre-adolescence brought with it some new and not-so-fun challenges.

But by the time my son was in high school, I came back to those conferences. I could skip the tracks meant to help the newly diagnosed “catch up” with their peers, but I needed the sessions that could teach me about adolescence and transition to adulthood and well, what now?

I was just beginning to recognize that we were in this for the long haul. ...

Please go to https://itslikethis.substack.com/p/realitycheck2 for the full transcript.

Hi – I’ve been sorting through the mounds of paperwork that come hand-in-hand with raising a child with a disability, and this memory came up. Thanks for reading and/or listening!

I guess I looked like someone who could use some advice.

It’s true that I was feeling a bit over my head. I was sitting in the back of the main speaker’s hall, my lap piled with PowerPoint handouts, brochures from the exhibit room, and a thick conference program full of sessions promising to improve my son’s chances in life.

I was a newbie autism parent, facing what I was told was a rapidly closing window of early intervention, with decisions to make about therapies, education, diets, medical tests, and sensory strategies all demanding to be implemented right now.

The woman who sat down in the chair next to me—despite there being plenty of other seats nearby—clearly had something to say.

I don’t remember how the exchange started. She probably commented on my disheveled stack of notes and offered some commiseration on handling all this new information. I’m sure she asked how old my son was, and I probably said something positive about his potential. 

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Please go to https://itslikethis.substack.com/p/justlove2 for the full transcript.

My son turned 22 this past weekend, and just like every birthday, it’s hard not to think about what I was doing at that age.  

The year I turned 22, his dad and I were newly married.

I had just graduated from college.

The US president inaugurated that year was the first I’d had a chance to vote for.

I was living away from my parents for the first time (not counting dorm life), and beginning to figure out what I was going to be as a “grown up.”

My son’s life looks pretty different.

At 22, my son won’t drive or vote or get married. He’s not going to college, and it’s going to take a little more to figure out what he wants to do with his time post-school.

It’s a different life for him – and for me, as his mom.

But I do have one thing in common with other moms of young adults – whether their kids are getting ready to move out or practicing independent skills while staying home.

My friend sent me this quote recently: 

“Motherhood is really about accepting that fact that you will be permanently worried for the rest of your life.”

Ain’t that the truth?--

Please go to https://itslikethis.substack.com/p/twenty-two-2 for the full transcript.

Ah! A mind-meld! Good idea, let’s try that.

My son has leaned toward me, bending down to get eye-level with his short mom, and touched his forehead to mine. He locks eyes with me, a grin brightening his face. 

Foreheads still together, I begin to hum. 

Thought-transfer commencing…

He pulls his head back and giggles, bouncing on his toes away from me again.

Oh, you broke the link! Darn, our telepathy didn’t work that time. 

I know he’s probably about to ask for a snack, or to watch one of his movies. But I try not to speak for him, not wanting to put words in his mouth.

Buddy, you’ll have to tell me what you’re thinking about another way. But hey, we’ll keep trying for that mind-link though, okay? How cool would that be?

When I was a child, I went through a phase when I really, really wanted to have special, secret powers. I read a book called The Girl with the Silver Eyes – its tag line was: “It’s fun to make things move just by thinking about them.” I wanted that girl’s telekinetic ability! Not the Firestarter-kind that sets things ablaze or hurts people. Just the “float a pen in the air” kind of stuff.

I spent hours staring at objects to try to make them move without touching them. I even have a vague memory of standing in the bathroom and mixing together a “potion” – I’m pretty sure it included a few drops of shampoo and bubble bath – somehow convinced that drinking soapy water would spark some enchanted transformation in me.

Luckily, I didn’t have to endure the magic of a stomach pump after that. Kids are dumb.

Today, although my middle-aged muscles would probably appreciate that effort, I’ve given up on the dream of developing that power to move things with my mind.

The gift of mind-reading could come in handy though.

Please go to https://itslikethis.substack.com/p/magic2 for the full transcript.

The boy is on edge, yet again, pacing around the kitchen as I’m cooking dinner.

He’s verbalizing a litany of guttural noises and warning phrases. “Don’t. Hurt.” “It’s not working.” “Exit. Exit.”

When he’s cycling up like this, I usually toss multiple strategies his way, hoping one or more will calm him.

My reminders to try deep breathing, or relaxing videos, or his weighted blanket, or to just go sit down are becoming more about what I need than what he might need. 

I’m playing music from a random Pandora station, in an effort to either distract him from his agitation or drown out his anxious patter. 

He is right. It’s not working.

The temperature in the kitchen is rising, and one of us is about to boil over.

I’d like to think I’ve improved as a caregiver over the past few years, finding more patience, compassion, and understanding to support this young man.

Tonight those talents are not evident. Ah, the absurdity of snapping at someone to use your coping skills.

I’m irritated that he’s irritated, which is not helpful, but there it is. It’s been a long day.

Then, the next song begins to play. 

And everything, for me at least, changes.

Please go to the text version of this post for the full transcript.

itslikethis.substack.com/p/sillylovesongs

In mid-February 2021, my son and I watched the live feed from the NASA control room as the newest Mars rover made its final descent onto the red planet. 

Before its mission could truly begin, Perseverance had traveled 300 million miles for over six months, and would still have to survive this highly precarious landing. I don’t know if my son fully grasped the enormity of the moment.

But I was surprised to find myself in tears.

Maybe I was simply consumed by the tension built up in those “seven minutes of terror” and the explosion of relief and joy that followed. 

Perhaps I became disoriented watching a vehicle reach a distant planet when I have not ventured more that 20 miles from my own home in months.

Surely, I was moved to see the number of women involved – in that control room and interviewed as part of the mission’s scientific and technical teams.

Maybe I cried wondering what might have been if I had chosen those astronomy labs in college, the ones I didn’t take because they conflicted with my evening theatre rehearsals. 

Perhaps I felt a wistful craving to be a member of that kind of smart and creative team, involved in a collaborative striving toward some inspiring goal.

Possibly, I grieved a bit for my young adult, who is on a very different trajectory from others his age plotting to make their own contributions to science or the arts.

Maybe I had a stronger sense of our separation from the outside world – an isolation exacerbated by the pandemic, but very much a part of our “usual” autism life. (C’mon, my new hack for keeping my toilet paper within reach since my son likes to move to roll holder is literally not on the same planet as the discoveries these people are making.) 

Perhaps all these thoughts combined to make me feel both insignificant and proudly connected to the promise of what humans can achieve.

Undoubtedly, my tearful reaction had something to do with turning 50 today...

Please go boldly to https://itslikethis.substack.com/p/explorations for the full transcript.

“Tell me your name, or we’ll shoot you.”

As a parent, when you overhear a comment like that on the playground, you can’t help but take notice.

As bad as it sounds, I am not hugely concerned – the threat is coming from a child about four years younger and at least as many inches shorter than my son – but still, I guess I ought to take a closer look at this kid with this unusual strategy for “making friends.”

I had been trying to give my son a little space to play on his own this morning. We were taking a break from our homeschooling lessons - one of the unforeseen benefits of yanking my child out of our local school district is we can have the neighborhood park virtually to ourselves during the school day.

Truth be told, I have come to dread the playground. I resign myself to it because my ten-year-old still loves it and he needs time to run and climb and play. But, playtime is hard work when your child is barely verbal, socially quirky, and sound-sensitive. Not only do I feel a strong need to explain my son’s odd behaviors and “unique” vocalizations to anyone who seems to question them, but I have been drilled at many an autism conference to maximize any and all social skill-building opportunities. Communicative exchanges that come naturally to others need to be prepped, practiced, and coached incessantly – so even in play, we always seem to be working.

I typically hover near him in public settings, ready to diffuse awkward encounters and take advantage of every teachable moment. But, after years of safeguarding and facilitating every interaction, I have grown tired of explaining why my son won’t talk to the other kids; tired of the confused stares from children, the pitying looks from their parents.

Lately, I have found myself feeling pretty jealous of the moms who can sit on the sidelines and indulge in a few exquisite moments of coffee and real conversation while their children play together. I wonder what that’s like?

So, when we got here this morning, I caught a glimpse of paradise in the lack of cars in the parking lot and the correspondingly few children running around on the playground. I decided to take the delicious opportunity to sit on a park bench and allow myself the luxury of letting my son “go play.” I was determined to put aside the social skills lessons and practice instead my personal non-hovering skills.

Right up until that potential threat of bodily harm, I was doing great.

…

Full transcript here: itslikethis.substack.com/p/whats-your-name