It's Like This

It's Like This is a newsletter featuring creative writing and reflections about life as the caregiver, advocate, mom and ally of an autistic young adult. This is a "Read Aloud" narration of selected issues from itslikethis.substack.com.

It's Like This is a newsletter featuring creative writing and reflections about life as the caregiver, advocate, mom and ally of an autistic young adult. This is a "Read Aloud" narration of selected issues from itslikethis.substack.com.

It's Like This is a newsletter featuring creative writing and reflections about life as the caregiver, advocate, mom and ally of an autistic young adult. This is a "Read Aloud" narration of selected issues from itslikethis.substack.com.

It's Like This is a newsletter featuring creative writing and reflections about life as the caregiver, advocate, mom and ally of an autistic young adult. This is a "Read Aloud" narration of selected issues from itslikethis.substack.com.

It's Like This is a newsletter featuring creative writing and reflections about life as the caregiver, advocate, mom and ally of an autistic young adult. This is a "Read Aloud" narration of selected issues from itslikethis.substack.com.

It's Like This is a newsletter featuring creative writing and reflections about life as the caregiver, advocate, mom and ally of an autistic young adult. This is a "Read Aloud" narration of selected issues from itslikethis.substack.com.

Welcome to another issue of It’s Like This. If you have a chance, please take a listen to the recorded version by clicking play above - this one includes a snippet of my son’s beautiful voice. A rare treat! Thanks for being here.

I could hear my son singing from across the house. I recognized the song and couldn’t help but smile.

My twenty-two-year-old first heard this song well before he could speak or sing the words.

I picture him, just two years old, at our “Mommy and Me” Gymboree class, his face glowing and grinning as he scrambles with the other children under a huge brightly colored parachute. We parents form a circle and shake the parachute over the kids to simulate a storm. As the song ends, we raise the parachute up high and drop the sides quickly behind us, scooting under to sit on the edges, creating a bubble of safety and silliness with everyone underneath.

Come under my umbrella

Umbrella, umbrella

Come under my umbrella

It's going to storm.

There’s thunder and lightning

And wind and rain

Come under my umbrella

It's going to storm.

While my son was singing of thunder and lightning, I was in my office preparing for a rainy day of another sort.

That day most of us avoid thinking about, but for which planning is necessary – especially when you’ve got a special needs child. Yeah, I’ve been in that spooky territory of estate planning, re-grouping on all the paperwork we need to have in order – just in case.

Included in all the financial, legal, and healthcare-related documents, I’m tasked with updating a “Letter of Intent.” Essentially, this letter is an instruction manual for my kid. It should include everything his team needs to hold this umbrella over his head, to keep him secure and protected throughout his life.

The logistical parts of this are tedious but straight-forward. Pages and pages of names and phone numbers, member IDs, account numbers; which medications, what services, where to buy beads and earplugs in bulk.

This letter is also supposed to describe our hopes and expectations for our son’s future, where he’ll live and what will occupy his time, along with anything we know about him that someone else should know: his current likes and dislikes; the meals he’s eating (or not); his ways of communicating; and the patterns he expects around the house.

Now, I am notorious for leaving overly detailed instructions if my husband and I get away for even one night, writing down everything his providers might possibly need, as if I’m not also a phone call away.
But when someone reads this Letter of Intent there will be no option for a beyond-the-grave phone call. So, it feels pretty impossible to include everything I’d want his future caregivers to know.

Some things, they’ll just learn over time.

They’ll figure out that he won’t wear long pants or shirts with buttons.

They’ll see that he always keeps a cup of water in the center of his placemat, except if food is present.

They’ll find out that his amped-up, agitated state one moment doesn’t mean he won’t be in a great mood in another hour. And vice versa.

They’ll learn that if there are leftovers in the fridge (especially pizza), he’ll likely be up early the next morning to ask for them, first thing.

But there will be mysteries.

They won’t understand why he answers the question, “What does Cookie Monster say?” with a laughing growl of: “Eat your chicken!”

They won’t recognize the origins of the phrases he says on repeat, like “Give the dog your food!” or “Ernie! Turn the fan off!” or “There she is!” or “But he jumps off.”

They won’t possibly appreciate the true beauty of a nonsensical phrase cobbled together from picture books and food labels, like “Oreo Cookie doesn’t want to come inside and go to beach” (a very rare 11-word statement said very clearly, but only once, despite his mother’s repeated attempts to record him later).

I want our Letter of Intent to help his future providers see our son the way we do.

Not just so that they can better manage his day-to-day needs or be in on the jokes.

I want them to know him.

I want to tell them about the pre-teen who would roll up the passenger side window to stop his mother and aide from talking across him at school pick-up; and the boy who bounced on an exercise ball through the halls of his elementary school.

They’ll hear the few words he speaks with intention; but I wish they could hear his first “guh” (for “go”) at three-and-a-half years old, as we lifted one side of the comforter to roll our giggling kid across the bed and back, over and over.

I want to show them, even as they watch his stress build up, how much worse our son’s rage once was, and how far he’s come to pull himself together.

When a favorite song plays and they see him shuffle his feet in a hesitant dance, I want to remind them of the little guy who would boogie with his reflection in the sliding glass door.
And when my adult son sings of umbrellas and rain, I need them to picture that sweet boy, wide-eyed and laughing, under a parachute.

I hope his future providers can feel a connection and an intimacy with my child, understand his backstory, how he learns, what makes him panic or smile or sing.

I want to leave my son in the comfort of a circle of caregivers that know him enough to not only provide shelter over him but be willing to tuck in beside him under that umbrella, to ride out together whatever storms may come.

How do I communicate the heart of who he is in one Letter of Intent?

This letter is going to be the length of a book…

Welcome to another issue of It’s Like This. Today I’ve got a throwback for you, a slightly revised version of a piece I wrote 7 years ago, when my son was a young teenager. It’s still so reflective of our spoken (and unspoken) interactions today.

So, thanks for reading - and please click the play button above to listen, too!

(And for anyone who is keeping track of my every other week-ish schedule, I’ve decided to “officially” scale back to once a month going forward. So you’ll hear from me again at the beginning of November…. because, you know, life around here…well, it’s like this.)

He remembers the paths we walked the year before, along the beach and across the cliff-top fields toward the seal rookery. I let him lead. We never get lost.  

Each day, my teenaged son speeds down the beach, twirling two small rubber snakes in his hands. I stop trying to keep up, but hold back to see how far ahead he will get before he notices I’m not with him. He goes, and goes, and goes. Do I need to run? No, now he stops. He finds me with his eyes, far back along the beach. He turns around, never coming all the way to me, but just enough so that we are close again, walking on together in the same direction.

I spy a tiny speck of red and black crawling up the sand and I pick it up to show him. He labels it quickly –ladybug – apparently unimpressed, and moves on.

While he’s still close, I point out the dolphins who have arrived again, just offshore, their dorsal fins cresting the waves in twos and threes every few yards. I can’t tell if my son looks out long enough to spot them.

Two rubber snakes spin over every surface along the beach, the road, and back at our oceanside condo.

He declines to come near to the surf when I try to show him the huge crab claw washed ashore, looking unnatural, as if someone on a dinner cruise tossed the carcass overboard after dipping the meat in melted butter.

My child – who swam nonstop in the freezing water every spring vacation trip before this – won’t go near the waves this time. He is uncharacteristically hesitant and unsure at the water’s edge. He still loves to run on the beach, chase seagulls, walk and walk and walk – but he won’t get his feet wet.

I don’t understand his change of heart; no amount of coaxing is getting him back in the water. He says nothing until we are back home after our trip, looking at photos. Then, a song emerges quietly: People swimming in the water, people swimming in the water.... shark coming in the water, shark coming in the water...

Because of his autism, my son can’t always find the right words at the right time, if he can find them at all. He is often limited to body language and gestures to communicate with us, which we try to interpret the best we can. When verbal language does come, it is often coded and masked. I have to truly pay attention to hear what he’s wishing to say.

This vacation gave me time to practice this listening—to slow down, just be with my son, and see where he takes me. It helped me notice what I am often missing in our busy, hurried life—that he is throwing me little sparkling clues to what he is thinking.

Within his daily babble – streaming scenes from his favorite movies or books or computer games – I begin to notice small words that don’t fit in the script, but align perfectly to the situation at hand. When my mother joins us at our condo one morning, I hear the word “grandpa” sneak into my son’s rambling soundscape, and I guess that he is wondering where my father is. With his question acknowledged, my kid is visibly happy to have been understood.

This pattern repeats in other situations – I start to listen more closely to everything we believed was only “verbal stimming” before. Is his awareness and connection stronger this week? Is it the ocean air, the outdoor exercise, the absence of our usual routine? Or am I just now slowing down enough to hear him?

On the beach, I catch sight of a seal bobbing in the waves just beyond where some boogie boarders float. He disappears and reemerges several times before the swimmers notice he is there. When they finally see him, their attention is newly focused, their experience made brighter, more memorable. All they can do is watch and wait, let the seal choose to be near them – if they try to approach him, he’d be gone.

Each time I hear my child express what’s on his mind – in clips of song or a re- engineered phrase from a movie or book – I catch a fleeting glimpse of all that is just below the surface. In my eagerness, I tend to jump at it too soon, too forcefully, and his silence returns.

But if I stay still, listen – float – his words appear.

I returned from that vacation recharged to cultivate the patience I need to support my son’s still-emerging voice. As much as I yearn to know what he is thinking right now, to have a discussion with him (even about the most mundane things), to ensure that he has the skills to be safe and understood when he’s not with me, it is hard and treacherous work for him to find the words.

To support him, I have to slow down – channel my relaxed vacation mode mindset – to gain his trust in me as a communication partner, even if we never share anything approaching a “typical” conversation.

I will walk the beach with him, or hike the desert back home, following his lead. I will point out what I see, despite his lack of response, hoping he’s soaking in the language he can retrieve later.

When he’s ready to look back, I will be here, believing that he understands and that he wants to know more even if he can’t yet form the questions.

I will watch for the creative ways he is communicating – at that moment or in the hours or days later – and show him that I’m listening.

I will offer what he needs to build his voice and his confidence: more patience, more time, more assurances that someone will hear him.

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?”