On that Tuesday, my two-year-old son woke me around 6:00 a.m., and I groggily turned on the TV in our living room to pop in one of his favorite VHS tapes.

He had quite a collection. Bear in the Big Blue House, Baby Mozart, VeggieTales, and loads of Sesame Street. It would still be eight months before he received his official autism diagnosis, but his repetitive interest in these videos was already very apparent.

That morning, I was grateful for his avid interest in those tapes so I could catch a bit more sleep before the true start of our day.

Before I switched the television’s feed to the VCR, the screen filled with an image of smoke billowing from a tall building. It was after 9:00 a.m. on the East coast, and reporters with anxious voices were saying something about an airplane, possibly two. The newscasters were clearly caught off-guard and trying to understand what was happening.

I started my kid’s video on our only TV set, moving quickly to replace the real-time view of New York City with the bright neighborhood of Sesame Street. I went to my room to turn on my bedside radio, telling my husband that something had happened back East. I laid on our bed to listen, more sleep no longer an option.

It was unsettling to hear the radio announcers' fear and confusion as they struggled to keep their voices steady. Within a few minutes, I listened in shock as the newscasters reported the South tower collapse, while the cheery sounds of Elmo’s World came from the other room.

Later, of course, I would see the replays of the planes crashing, the imploding buildings, the rubble and dust and terror, along with footage of the wreckage in Pennsylvania and at the Pentagon – but I got a reprieve from the visual stress of the live coverage thanks to my kid’s videos.

I still didn't grasp the full scale of what was happening, and tried to continue our day as planned.  I got our son ready and took him to his new “toddler preschool” at a nearby Montessori school. He’d just started there at the end of August, his first experience in a structured setting away from mom. We were still in that early phase of adjustment that left us both crying at drop-off (and through a good part of the morning). An experience that with hindsight I know was more than just typical separation anxiety.

On returning home that Tuesday, I found myself standing in front of the TV, watching the news coverage in disbelief. I called my grad school history department – yes, my afternoon class would still be held – and tore myself away from the television long enough to finish and print out my assignment, a paper that was feeling more and more irrelevant.

My son’s school called soon after, cutting the morning session short. They were asking everyone to come pick up their children, they would be closing the school for the day. Everyone was on edge, unsure if our country was under an extended attack, worried for relatives in New York and DC. It was best for all the children to be at home, for now.

My son’s abbreviated daily progress sheet for that day is blank under “Activities.” A scrawled note at the top reported: “Did pretty well. Settled down within 15 min!”

Later that day, I walked across an eerily deserted university campus under a deathly quiet blue sky. That silence – all flights still grounded and most people hunkering inside to watch the news – shook me more than anything else I’d yet heard that day.

In class, our planned discussion of 20th century American history – which stories should be told and how best to bring them to a general audience – had been upended by the morning’s tragedies. We shared what we knew so far, trying to piece together what it all meant. There were still rumors and fears of more planes, more attacks.

I wondered aloud why we were there, sitting in class, and not home with our families.

Then, fueled by my growing unease and guilt, I committed the ultimate sacrilege, voicing doubt that any of this history we were studying mattered at all, when the world outside was on fire.

I remember my professor and classmates looking a little stunned and not knowing how to respond to my heretical language. I’m sure a few of them spoke about the critical place for history, and historians, in helping us understand our past so that we can better shape our future.

Which I, of course, believe as well. I was in this program to learn how to collect, tell, and honor peoples’ stories.

At that moment, I didn’t grasp that this day, and the days and months to follow, would be exactly the type of event that historians would be documenting to pass down to the next generation and the next.

On that Tuesday, I just wanted to be home with my family, watching Sesame Street.

On this 20th anniversary of the 9/11 attacks, the essential work of historians, archivists and curators continues – to preserve, record, and interpret our collective memories of that day and the months and years that followed. You can share yours (and read others) at the Smithsonian’s National Museum of American History.

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.
Click the play button above and I’ll read this to you!

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. My son was now at a private school that specialized in teaching students like him; and I’d begun to find a community of folks who were down in the trenches with me – not the ones scrambling all the time to dig their way out, but families who were hunkering down in the dirt, bringing in blankets and wine, and finding ways to get comfortable.

I didn’t fully grasp how far I’d grown in my identity as a special needs parent until I stepped into the lunchroom at one of those conferences.

I grab a chair at a table where a couple of other parents are already seated. I can tell by their piles of handouts that their kids are younger than mine. They are probably suspicious of my slim little notebook. 

We introduce ourselves by way of the standard parent bio – kids’ names, ages, genders; which schools, agencies, doctors.

Once they hear that my kid was similar to theirs as a toddler or a first-grader, the questions begin. They are eager to know what “worked” for us – did my son respond to the strategies all these experts are talking about? 

Well… Yes, at three, my son started talking a little; yes, at four, he did finally get potty trained; yes, in kindergarten, and through second grade, my son was mainstreamed with an aide. 

They seem relieved to hear from an older parent who can remember the days they are facing right now, and still appear (mostly) sane. But once they start asking about my son’s current status, I have to tread lightly. 

The question of “How’s your son doing now?” is code for “Are we going to be OK?”

And, if they’re anything like I was, their definition of “OK” involves some level of their kids being “indistinguishable from their peers.” 

My kid is quite distinguishable. 

They may not be ready for this reality check. 

I describe how much progress my son has made. I praise him for how hard he’s worked and is still working. I check off a list of approaches that seemed to help, and a few that haven’t. I skirt around the craters of mental health and social isolation.

I walk that line. I’m not going to tell them to “just love” their kids. But I’m not going to give them the doom and gloom either. 

I smile and say that my son is doing “OK.”

These new parents are not satisfied with my vague responses. They probe for some glimmer of positive they can grab onto. 

It’s that old “Rain Man” dance – what is he good at? What’s his interest? – because there’s got to be something. Right? 

I respond with caveats: 

Well, like any teenager, he’s very motivated by eating and sleeping and being left alone.

No, he’s not going to earn a diploma, but his school is wonderful. 

No, he doesn’t have many words, but he’s still working on it.  

No, he doesn’t have any friends, but his laugh is…

I see the awkward shift in their gazes. Now they are glancing down at their conference programs, looking for presentations that might offer them more hope than what I’m giving.

Of course it stings to see such a negative reflection of my child, how easily he can be seen as not measuring up to some ideal we’ve created. But I’m not surprised by this reaction – wasn’t I in their shoes not so long ago? Hoping my son might have more brag-worthy outcomes? 

I can’t explain to these new parents that their ideas about disability and inclusion will likely change, and their definitions of a safe, happy, and healthy life will broaden.

That someday, time will have rushed forward, and they might find themselves in my seat, making the case that their far-from-typical kid has value, too.

They might even realize — as I am in this moment — that if we say it enough, it really does begin to ring true:

We are doing OK.

As we head back to the afternoon sessions, I give these younger parents genuine assurances that many of these interventions they are hearing about will make a difference and I wish them good luck. 

(I don’t add “you’re going to need it.”) 

One dad shrugs as he shakes my hand and says, “Well, you seem to have a great attitude about it.” 

I laugh. 

“Well, yeah,” I shrug in return. “What else am I going to do?”

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. 

My boy had been completely non-verbal when he received his autism diagnosis a couple months shy of his 3rd birthday. But within six months, following an intense dive into therapies and nutritional interventions, we heard his first consistent word approximations. By the following year, we were overjoyed to hear him singing pre-school songs and finally calling us Mommy and Daddy. 

I could see the growth in him, and I was throwing everything at him to pull out more. I was eager to follow what the experts were saying at every autism conference I could get to.

And I really wished that this woman next to me would stop talking so I could hear them. As the next speaker stepped up to the podium, my seatmate leaned in and whispered in my ear:

“Just love him.”

She said more, I think, in her soft, condescending tone. Something about not driving myself crazy with all this “unnecessary” stuff. Enjoy him. Just. Love him.

I bristled at her implication that I was not loving my child enough, or in the right way. Wasn’t love the whole reason I was sitting through these confusing lectures full of educational acronyms and medical theories?

I dismissed her as crazy and tuned her out.

“Just love him.”

As if love was all there was to it.

As if love would be enough.

That lapful of scribbled conference notes would grow into a mountain of data sheets, logbooks, school communications, assessments, re-assessments, lab results, IEPs, quarterly therapy reports, and team meeting notes—and yes, I’ve kept them all.

I didn’t follow her advice to “just” love him. I poured my heart into interventions that consumed his childhood and clogged my filing cabinets.

Now, as I sift through all this paperwork I’ve hoarded (um, archived?) over the years, I can see how my son might have felt more pressure than love through all the phases of special education, in-home ABA programs, weekly therapies in clinic and “natural environment” training, not to mention doctor’s visits, medication and diet trials, and a parade of teachers, therapists, and aides.

I guess understand a little more that woman’s motivation to pass on her unsolicited advice. She probably saw an earlier version of herself in me, or perhaps saw herself in my child.

Her whispered words have been amplified in recent years—in the autism community today, people take sides over whether autism is a neurological difference to be celebrated or a profound disability with devastating impacts. Some autistic adults who have found their voices argue with young parents over which approaches they should or shouldn’t use, making things even more confusing for new families. 

The spectrum is wide and there is not one autism, but we still fight over how to treat it and even how to talk about treating it.

This recent Today article describes one front in these “autism wars”—the language we use to describe our families in public forums, which may help us find support but can also shape how we (and others) view our autistic kids. (I’m in the Carrie Cariello camp on this one—parents can find ways to speak honestly about our challenges without publicly degrading our kids or over-sharing intimate details.)

For many of us, “acceptance” vs. “action” is not an either/or decision. We can appreciate our kids’ “quirks” and give them space to be themselves, but you can bet we’re also going to do everything we can to alleviate their pain. 

It’s an easier calculus for those of us who witness the more debilitating aspects of this diagnosis—the self-injury, punishing meltdowns, aggression, communication struggles, and inability to live independently. 

Supporting someone through all that takes more than “just love.”

But I know that my son’s experiences in special education shaped his self-esteem in ways that are not all positive. My support probably hasn’t always felt supportive to him. 

Could some of his current anxieties have been sidestepped if we’d done this therapy and not that one? If I’d listened to different experts? If I’d always spoken to him and about him with ease and acceptance? Perhaps. 

Now I hear “just love him” as a reminder to simplify. Not to ignore what needs to be done, or fret over the paths we’ve taken, but to pay more attention to his mental health and my own as we choose goals and strategies and programs.

When I see the questions from new autism parents at conferences and in online forums today, I recognize their fear and urgency. And, I do have the impulse to tell them to take a breath. 

To stress a little less about potential outcomes, and to simply love a bit more.

They would think I was crazy, I know.

(Which reminds me of another story…that I’ll tell you…next time!)

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Welcome to another issue of It’s Like This. Thanks for reading! And now you’ve got the option to listen - just click the audio link above! 

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?

The year I turned 22, the movie Groundhog Day came out – that film which has now become short-hand for being stuck in a loop of the same thing happening again and again.

That seems right, since that movie is a fitting metaphor for our life at my son’s 22nd birthday.

But unlike Bill Murray, my kid feels comfort in sameness. He chooses to watch the same movies and wear the same shirts. He prefers the same routines and the same meals. It’s Groundhog Day here on many days, and he’d like it to stay that way.

My son watches his “shows” from his favorite spot in the cozy corner of his L-shaped sofa. Despite the fact that this cushion has been steadily sagging from overuse, that’s where he sits, mostly ignoring the rest of the couch. 

But in a moment of agitation a couple weeks ago, he slammed himself down hard in that corner, and I heard (and he felt) a spring snap. He was not happy with how much his spot was sinking after that. In the week it took to get someone out to look at it, my son added the words “Couch” “Fix it” and “Broke it” to his daily repertoire.

Generally, when furniture is moved around, for cleaning or rearranging or God forbid decorating, our son is flustered until things are returned to their proper positions. But when the repair man took his couch apart, my kid was merely curious. 

He knew, of course, that it needed fixing. And, he happily helped put the room back in order when the repair was done — so we could return to his regularly scheduled programming.

A couple weeks ago, I took advantage of my son’s preference for sameness and enlisted his help to clean up the backyard. 

He donned work gloves and spent a few minutes with me sweeping up dirt, moving pots, and taking down the low “fence” that I had installed in an attempt to save our baby quail (see issue #8).

The fence that mostly worked.

It was a dramatic weekend when those eggs finally hatched, involving tiny chicks trapped in my tall geranium pot; two frantic, chirping quail parents running around our patio; failed attempts to give them better ramps that further terrorized them; one – then two – chicks boosting themselves up on the plants to escape; and, an overturned pot releasing the remaining birdies and one unhatched egg.

The day continued into the evening with a family of quail stuck in the corner of our yard (the parents repeatedly leaving over the block wall or pool-safety fencing then returning to their stubby-winged babies who couldn’t fly to follow them), and a worried adoptive parent of the human kind keeping the dog away, pleading with the birds from the windows, and putting out birdseed and water to lure them in the right direction.

Finally, the next morning, I saw the quail family leave under our back gate. But later that day, we made the sad discovery of one baby bird in the pool’s filter basket. I have no idea how he got over my barriers, but it had been a chaotic birthday. Poor thing.

My son and I were both relieved to restore the backyard to its pre-quail-nesting days, and I’m glad most of them made it out of our yard alive. 

I am hoping to catch a glimpse of them, or what’s left of the brood by now, when the chicks learn to fly and they can follow their parents to walk across our block fence.

This is the closest I’ll come to feeling like an empty-nester.

It’d be nice if they’d stop by to say, “Hi.”

We had a quiet celebration for my son’s birthday this past weekend, mostly revolving around baking and eating and baking and eating. Groundhog Day on sugar.

On the 4th, our neighbors set off ground-level fireworks in the street out front, and we watched the larger community display in the distance from our 2nd-floor balcony. The kid was only mildly interested, and mostly stayed inside. 

Just like 22 years ago, when my husband and I saw the fireworks from our baby’s hospital room window on the night after his birth, we’re still watching fireworks from afar with our son close by. Still hoping to build a life of safety and happiness for our little one. Our “little one” just happens to be a big guy now. 

So our kid may not be doing many of the things that we were doing when we were his age.

That’s OK. We’ll do our best.

Besides, there is one really fun thing that my son and I will have in common this summer.

When I was 22, in the summer of 1993, my new husband and I were living in Flagstaff, Arizona. I was the production stage manager for a summer repertory theatre, managing an ensemble of actors and tech crews putting up three shows in rotation. 

Such fun work. But I do remember being distracted on a few of those rehearsal nights by the excitement of basketball – running out to my car on breaks to catch bits of the NBA playoff games on the radio. There were no cell phones at the ready to check the scores. But even back then, we had Al McCoy to give us the play-by-play for our Phoenix Suns.

And now, in 2021, the Suns have made it to the NBA Finals again, for the first time since I was 22.

So, here’s hoping that my son will get to see a more triumphant outcome for our hometown team this time around. 

Go Suns!

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Welcome to another issue of It’s Like This. Thanks for reading – and hey, here’s something new – if you want me to read this to you, click the audio link above! And, let me know what you think (still figuring out how to record, so it’s probably pretty rough!)

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.

You know, we have the technology to tap our devices together to transfer data or “air drop” files at a short distance. My son and I could use a little bit of that – a Vulcan mind meld trick to eliminate the need for those pesky spoken words.

Some magic can happen, though, if I focus. 

No, my thoughts are not going to reach out and move my son to empty the dishwasher without an argument, although that’d be convenient.

And, our minds are often not connecting at all.

But I’m learning that there’s a certain power in being still; in dropping the multi-tasking, in being present to whatever is happening right now. Not giving in to the temptations of my emails or my unending to-do lists or the worries swirling around in my head.

As the Zen joke goes – “Don’t just do something, sit there.”

Especially when my son is in the mood to be with me.

Part of this effort involves something my kid asked of me years ago when he was a pre-teen. 

In a school-morning flurry to get out the door, he once told his mother to “Stop the talking.”

For the record, I’m not very good at this yet. It’s a hard habit to break – giving instructions, asking questions, coaching responses, filling the silences. I’m describing an ideal here that I am aspiring to – and like eating better and exercising, I’m really good at ignoring my own advice. 

But, if I can slow down and give him time to process his thoughts on his own,

if I don’t jump in right away when it looks like my kid has something to say,

if I don’t “helpfully” guess his thoughts all the time,

if I can remember to simply sit still and “stop the talking”,

I’ll leave space to hear him.

My quiet presence opens up the opportunity for him to share his words with me, when he’s ready, on his own. Or, perhaps better yet, create a space that says it’s perfectly fine if we don’t talk at all.

When he smiles in that way that I just know he’s got something on his mind, I try to remember not to immediately ask “What do you want?” 

I might say, “Oh! You’re happy today, it’s nice to see you smiling.” 

Or I might simply grin, too, and adopt a reassuring stance that says go ahead, ask, I’m open, I’m listening.

Chances are, he won’t say anything.

Or he’ll laugh and shout, “Cookie!” which will prove I’m a skilled mind reader after all.

But sometimes, if I can be quiet, he’ll come over to lean in and rest his head on mine.

Maybe that physical contact is not going to result in telepathic thought-transference.

But if I’m lucky, I’ll get that rare instant when he chooses to be close to me.

When he offers to touch me.

When he is content to look me in the eye. 

A moment like that says a lot.

And, that’s really just the kind of magic I need.

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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

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“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

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com