It's Like This: Recent Episodes
Robin LaVoie
Creative writing and reflections about life as the caregiver, advocate, mom and ally of an autistic young adult.
itslikethis.substack.com
Please visit itlikethis.substack.com for the full transcript of this issue.
Most importantly, please read and listen to this excellent article on the potential damage coming to home and community based services (HCBS) for people with disabilities in Arizona, and across the country, due to federal cuts to Medicaid.
Arizonans with disabilities depend on at-home services. Medicaid cuts could erode the program
KJZZ | By Amy Silverman, Athena Ankrah
“Asked about the expected impact of H.R. 1, Arizona’s Medicaid agency, the Arizona Health Care Cost Containment System, or AHCCCS, said the law ‘will impact all Arizonans and will likely create significant strain for individuals with developmental disabilities and their families.’
“’While AHCCCS is committed to renewing its HCBS waiver and continuing to serve this population, ultimately, decisions regarding whether and how to fund HCBS services are questions for Arizona’s policymakers,’ the agency wrote in an email to KJZZ.”
Our legislators and governor are hammering out budget negotiations as we speak. And, we all wait.
Other links in this post:
https://itslikethis.substack.com/p/picturethis
https://itslikethis.substack.com/p/on-fixing-and-fretting
https://itslikethis.substack.com/p/forever-after
https://itslikethis.substack.com/p/there-you-are
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
Hi.
The longer I go without writing here, the harder it seems to get back.
It’s not because I have too much to catch you up on. I could send you any of my posts over the past five years and they would still tell you where we are.
I’m probably, like my son, even wearing the same shirt.
...
Please go to the original post for the full transcript, here:
https://itslikethis.substack.com/p/there-you-are
Links referred to in this post:
Vance Joy’s “Fire and the Flood."
Atticus Books & Music's newsletter.
My Substack Notes.
My 2024 April Adventures post.
My son’s wonderful day program is having their annual fundraiser later this month. Here’s the event page, their donation page, and you can also get in on the 50/50 raffle here(need not be present to win!).
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
As a caregiver for my adult autistic and mostly non-speaking son, I have to speak for him. Here's an assortment of moments in our life.
Please go to https://itslikethis.substack.com/p/mind-reading for the full transcript and to access the links mentioned.
Thanks for listening!
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
Here's a braided essay about answering the "favorite" question. Below are a few excerpts, but please go to https://itslikethis.substack.com/p/favorites for the full transcript.
Thanks for being here, for reading and/or listening!
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My son often assigns colors to people.
These labels can change, and we are not sure what they mean, but he always has a response if you ask, “What color is Mommy?”
...
A few months back, actor Joaquin Phoenix took the “Colbert Questionnaire” on The Late Show with Stephen Colbert, a silly but sometimes revealing segment in which Colbert aims to get to know his guests on a “deeper” level. The questions range from naming their favorite sandwich to sharing their beliefs on “what happens when we die.”
Phoenix fretted so much on almost every question that the interview ran long. They had to shorten it for the broadcast and move the full 20-minute segment to YouTube.
Despite being assured that “there are no wrong answers,” Phoenix is charmingly indecisive, asking for clarifications before he’ll commit to any choice.
When Colbert throws him an “easy” one—Apples or Oranges?—Phoenix needs know who is eating the fruit he doesn’t pick.
“I like both,” he says. “I want you to be happy. Why not have half of each?”
...
For years, my son has said his favorite color is green.
Maybe it is. I think he likes the color green. But I’ve long held the suspicion that—when asked to give a quick response to a therapist during a speech therapy or ABA session—“green” was the first color his brain could access. He was rewarded for giving that answer and, from then on, “green” was the right response to that question.
...
My son’s “favorite” food fluctuates depending on what he’s hoping to eat right now.
If you ask, he’ll tell you it’s a burger or pizza or even brocolli, in the right context. But be aware—he’s expecting you to deliver that favorite pretty quickly.
...
Maybe my son has favorites or maybe he doesn’t. Maybe his answer would depend on the object in question or who he’s with or what day it is or if it’s raining. Maybe he wants to ask some clarifying questions.
...
If what you see or hold in your hand—in this present moment—is your “favorite”?
Wouldn’t that be a contented way to live?
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
I’ve been having fun writing the newsletter for my local indie bookshop, Atticus Books & Music. In the latest issue, I confessed to my love of the horror genre, as a lifelong Stephen King fan.
So in keeping with that theme, let’s start here…
I’m sitting at my kitchen table, a crisp new four-inch thick hard cover King novel open in front of me. My second grader is home after school and we are having one of those rare afternoons when we’re not running to one therapy or another.
Imagining myself a responsible parent, I had set my child up with an after-school snack before I disappeared into my book—into some mesmerizing world where sadistic clowns terrorize children or super-flus threaten to end the world.
Go then, there are other worlds than these.
– The Gunslinger, Stephen King
At some point, I have a vague sense that my son is no longer sitting at the table with me, but is pacing back and forth between the kitchen table and the living room. I’m doling out a pretzel each time he returns, not caring that he’s creating a nice little crumb trail to mark his route.
After a while, I glance up as I’m turning a page and my son is grinning at me, grabbing another pretzel. It takes me a moment to register that something is wrong.
His face is covered in blood. His shirt is streaked with it. Angry red smears coat his hands and arms.
I jump up to examine him. He’s not crying or screaming. There doesn’t seem to be broken bones or huge gashes calling for an emergency room visit.
As I usher my still-blood-spurting child into the bathroom, I pass evidence of the carnage that was going on while I was otherwise engaged: On the kitchen counter, a sticky, wadded-up dishtowel… Spatters of blood mixed with pretzel crumbs cover the floor… A grisly red handprint marks the edge of the coffee table.
Geez, how long was I out? One bloody nose and my house looks like…well, a Stephen King story brought to life!
Not one of my finer parenting moments, but I can get lost in a good book.
I had hoped my son would grow up to be a reader like me. When he was little, it certainly seemed like he was heading that direction. We had many books we loved reading together.
Right now, at 26, his favorite type of reading is looking over my shoulder in the kitchen, as I write him a note about what’s for dinner. 😆
In my son’s early pre-verbal days, I heard autistic adults describe how reading helped them learn to speak. One young man explained how text on a page “stays still” and gives him time to process the information. Verbal language flits by too quickly and is difficult to grasp. I also learned from creative educators who encouraged a focus on literacy, and their words held promise that my son could learn to read.
I have a strong memory of being in the lobby of a music therapy clinic when my son was about five. I looked up from my magazine as a lanky pre-teen boy came bounding into the lobby with his mom. He was excited about something, flapping his hands and bouncing on his feet, a happy-dance that had begun to look familiar to me even a mere two years into this autism-parent thing.
The boy’s mother sat down and pulled a notepad and pen out of her purse, and the boy stood at her shoulder, leaning over to get a clear view of what she was writing. She whispered each word as she wrote slowly. Her son flapped and laughed, clearly transfixed by the written words.
I flooded our son’s life with text. Traditional books, labeled picture cards, captioning on his “sing along” videos. I created “About Me” books to teach our son how to answer questions about his name, his age, our phone number and address. He memorized his biography at that point in time, and for years he would say he was six years old and offer our old landline phone number.
He enjoyed the phonics lessons in kindergarten and we read often at home. I would catch him sitting on the floor in our living room flipping through the pages of a favorite book, “reading” out loud with his mother’s tone and inflection.
He was a be-yooooou-ti-ful butterfly.
One dog WOOF. Two Dogs WOOF. Yap-Yap.
He played with the sounds, the patterns of the language, and even though comprehension was hard to measure, he sure seemed to have fun with books.
My son’s reading level hit a wall around 3rd grade when his typical classmates shifted from “learning to read” to “reading to learn.” But reading has made all the difference in his ability to understand language and to speak.
We’d often play with words and sentences on a whiteboard. I’d write out the phrases he was scripting from his favorite movies or songs. He’d laugh watching the words that fill his head translated into written text, the concrete formation of sounds into letters. The written words would clarify what he was hearing, and he would read the words and adjust his pronunciation.
Except he seemed surprised that Donkey’s question to Shrek when they come upon the ogre’s shack could be written as, “Can I stay with you?” He still preferred to pronounce it in exact Eddie Murphy style: “Cannah stah-wit chew?”
We rely on the written word to communicate with our son every day. I’m constantly reminding myself to stop talking and write it down, to give him concrete words that stay still and help him understand.
He reads aloud the signs we drive past on the street, so I get to hear his voice even if it’s just Open House or Do Not Enter or Starbucks Coffee.
He likes seeing his daily schedule on the table in the morning. I write “social stories” about what to expect for a doctor’s visit or haircut or social outing. And of course, “What’s for dinner.”
I still read books to my adult son.
Of course, books are part of his visual map of our house, so he prefers books to stay on the shelves exactly as they always look. But most days he’ll let me bring a book to him on the couch to read.
Even when he doesn’t seem to be paying attention, if I read something that interests him (like “cookie” or “giggle”), he’ll place his hand on the book to stop me, and scan the page to find the word.
It’s fun for me because I get to read books I wouldn’t take the time to read otherwise—young adult novels about all different kinds of people and places, as well as poetry, adapted classic novels, and non-fiction readers about cars and space and science.
Although we’ve branched out from picture books in recent years, sometimes he’ll indulge me. This new one, I had to read.
In this new version of Hansel & Gretel, my son didn’t catch the breadcrumb King dropped for Dark Tower fans like me (giving us an extra reason to rejoice when this particular witch ends up in the oven).
But guess who perked up at the mention of “gumdrops” and “gingerbread cakes”?
Nibble, nibble, little mouse…
Thanks for being here! Hope you’re reading something good. You can find It’s Like This issues related to communication, learning, visual supports and other stuff here:
And, you can listen to select issues of It’s Like This on your podcast player: Go here for Spotify and here for Apple podcastsand here for YouTube.
P.S. Thanks to any of you who participated in No Kings on Saturday. It was nice to be out there with others who understand the stakes. We have a lot of work to do.
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
If the following seems like a random assortment, welcome to my brain.
Please go to https://itslikethis.substack.com/p/right-now-its-like-this for the full transcript.
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
Thoughts on caregiving, the big brutal bill, and a call to save Medicaid, for all of us.
Please see the text edition of this newsletter for the full transcript and links, here: https://itslikethis.substack.com/p/waiting-game
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
I lost my composure during a guided meditation on equanimity. Yeah. Equanimity—that steadiness of mind and composure in response to any situation?
Well, I’m not a skilled meditator. But at least no one else on the call could see or hear me!
In this guided session we were prompted to bring to mind someone to whom we could offer phrases of balance and calm. I pictured my son.
But with the first prompt—
“May you accept things the way they are.”
I burst out laughing.
This, right here, is one of the top challenges in caring for my son lately.
His non-acceptance of the way things are—literally how objects are placed around our house—is a constant source of friction.
Take, for example, our kitchen.
Please see the text edition of this newsletter for the full transcript, here: https://itslikethis.substack.com/p/on-fixing-and-fretting
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
I wish this story was about an uneventful afternoon a few years ago when my then-teenaged son and I were home alone while my husband was out of town for the weekend. I wish I could tell you my son was watching one of his Pixar movies in the living room and I came down the carpeted stairs with absolutely nothing in my arms, holding the railing carefully, and not losing my footing in the slightest.
If I could, I would tell you I walked easily over to where my mostly non-verbal autistic son sat in his favorite cushy green chair with his feet up on the ottoman, and I did not cry when he told me, “Fix your hair,” in reaction to seeing that my long hair had fallen in front of my shoulders.
It would be nice if I could say I didn’t sob and send him to his room, but only shrugged and brushed my hair back, with nary a hurt feeling, telling myself that we taught him this three-word phrase to curb his habit of touching my hair (or random stranger’s ponytails) when he felt the impulse to fix it to his liking. Using these words reminded him to keep his hands to himself, and although I still didn’t know how to help him get past this obsession he’d developed over how other peoples’ hair looked, I can’t say I was thinking about that at all after coming down those stairs.
I can‘t tell it to you this way because that would be a boring story.
And, that’s not what happened.
Please see the text version of this newsletter at itslikethis.substack.com for the full transcript.
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
Please go to itslikethis.substack.com for a full transcript and links.
Back in the early days of the pandemic, someone said that one way to protect your mental health when the world outside is off the rails is to find a little corner of your life and control the heck out of it.
Straighten a junk drawer, clean out a closet, tend a garden, alphabetize those CDs you still have for some reason.
Based on the rate of crazy in the outside world right now, my little household should be immaculate. Not so much. But one project I am distracting myself with working on is arranging this Index of my previous writings about autism and caregiving.
This past week, I came across one that I didn’t expect to be so relevant right now—thanks, crazy outside world.
Alerts have been blaring across all of my groups regarding threats to the laws that protect individuals with disabilities from discrimination, and the federal and state funding that supports many of my son’s programs.
So, I’m sharing this piece with you today—it’s about how I learned about the disability rights movement back when my son was just a toddler, before that fight became personal.
Please see the end of this piece for ways that you can learn more and help protect individuals with disabilities whose rights are at risk.
itslikethis.substack.com/p/history-lessons
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
Annapolis, Maryland. 1975-ish. Just after a rain.
I was maybe four years old, riding my bike around our dirt driveway in the woods. My training wheels got stuck in the mud and I found myself on a stationary bike, my back wheel spinning an inch above the muck without moving me forward. I felt it begin to rain again, so I pedaled faster. The more I pedaled, the more I was stuck, the harder the rain fell.
It wasn’t until I got off and ran inside for help that I saw the truth (to my mother’s dismay, I’m sure): the “rain” I was racing to escape was a self-inflicted brown mud shower that my insistent, assured pedaling sprayed up my back and over my head.
This memory came to mind in the past week, as we watch a new and democratically elected administration bring a deluge of confusion, disruption and fear. We have work to do to get ourselves out of this mess.
In “What do we do now?” fellow Substacker Elizabeth Beggins echoed my thoughts of late —
Somehow it will have to be enough to go on caring for each other,
carrying each other, through it all.
This is what we do now.
When I drive my son to his program, we inevitably share the road with some version of a loud, hyper-masculine truck, belching smoke. Bumper sticker or not, I assume he is happy to have a “bro” in the White House. He bullies his way around the rest of us. I try not to breathe in his exhaust or take on his exhausting negative energy. The other commuters and I drive with extra care and consideration, let each other in— aiming to keep all of us safe as we go about our individual and equally valuable lives.
I try to have compassion even for monster truck guy, knowing that there are unseen causes and conditions that set him barreling down this road. Maybe he’s going to visit a sick friend in the hospital, maybe he just lost his job, maybe he is still mad about the price of eggs.
My middle fingers may discreetly lift off the steering wheel ever so slightly as he roars around me, but I (usually) remember to send a silent note of good will. May you reach your destination safely. May your mood improve before you kill someone.
I sometimes allow myself a serene, seemingly oblivious smile when my little hybrid coasts up beside his idling anger at the next light, hoping he might have a glimmer of awareness that, without endangering anyone or raising my blood pressure, I’ve made it here, too, in good time.
I’ve been reading more poetry lately, Mary Oliver and others who help me see the world in new ways (and remind me to pay attention). This one came to me from Beth Kempton during her “Winter Writing Sanctuary.”
Pain always teaches me
to make new things.
Less for what the things become
than for how the making
re-makes me
brave and grateful.
-- Excerpt from “Bury the Seed” by Brooke McNamara
Right after the election, I heard this advice fromDan Harris—and since the inauguration, I’ve decided to run with it—Action Absorbs Anxiety.
For me, taking action looks like this: I’ve started writing down (in a purposely small notebook to keep it simple) one action I take each day on behalf of the communities and people I care about. Some days, it’s signing a petition or writing a letter; other days it’s supporting an artist or writer, checking in with friends who are impacted or targeted, or simply offering extra kindnesses to family or neighbors.
Maybe I do these things anyway, but recording them specifically makes a difference, in the same way a gratitude journal does, I think. My tiny contributions won’t fix all (or maybe even any) of the problems I see, but when so many fires are sprouting up in all directions, and so much is out of my control, doing one small thing today—simply, the next right thing—reminds me of my agency and of the world I want to live in.
Long as I remember, the rain been comin' downClouds of mystery pourin' confusion on the groundGood men through the ages tryin' to find the sunAnd I wonder, still I wonder, who'll stop the rain?
--“Who’ll Stop the Rain?” by John Fogerty, Creedence Clearwater Revival
Here are a few Substacks I follow that help me choose the right actions for me:
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Chop Wood, Carry Water by Jessica Craven
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The Weekly List by Amy Siskind
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Playing with Fire by Shannon Watts
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CEBV Weekly by Melinda Merkel Iyer [for AZ state action]
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Letters from an American by Heather Cox Richardson
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Civil Discourse with Joyce Vance
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Constant Commoner by Ramona Grigg, who offers a great list of others, here.
A few other updates:
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I’ve heard that sometimes Substack sends my subscribers emails that I have no control over. If that’s bugging you, you can sign into your account settings and opt out of notifications or other things from there.
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You might remember that I teased a new “Finding Aid” piece in my December post. I got a little distracted by this months-long January. A February offering, perhaps?
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I’m also still working on this Index page for my autism-related writing—Another casualty of January, but more here soon…
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I’ve updated my personal “Support” page with a donation button for my son’s day program, a link to my husband’s art, a tip jar, and a Bookshop affiliate page. 🤗
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Join me on Substack Notes, or come find me on BlueSky (@robinklavoie.bsky.social) — I’ve just signed up over there, hoping to ditch or downgrade Meta social media soon. On socials, I have fun with posts like this :)
Thanks, as always, for being here. May all of our moods improve.
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
They say you can combat negative thoughts and anxiety by cultivating gratitude, so here goes…
It’s a good thing my non-verbal autistic son is not aware of politics so I don’t have to explain how we’ve allowed a man who is unfit for office to regain the presidency.
It’s a good thing my son can’t vote so he can’t be blamed for electing federal and state representatives who aim to dismantle the programs that we are pretty fond of around here.
It’s a good thing my son isn’t a typical young adult so he’s in no danger of being sucked into the lies swirling around right-wing platforms, so we won’t have more to argue about at Thanksgiving beyond how many rolls one should eat.
It’s a good thing my son has aged out of public school so I don’t have to worry he could lose the federal IDEA protections that gave him the right to an education.
It’s a good thing my son hasn’t heard that he’s supposed to fear the wonderfully diverse and compassionate staff that support him every day.
It’s a good thing my son isn’t married so I don’t have to pray that his wife or his partner has access to proper medical care.
It’s a good thing my son has been at risk of losing healthcare and disability services before so that I can pull up old contacts and dust off those bullet points to fight for his rights again.
It’s a good thing my son needs my help 24/7 so I have less time to perseverate on the impending chaos, and so I can remind myself—through the imperatives of daily caregiving and advocacy—that I am here “not to agonize but to organize” for the actions that will be needed to protect the communities I care about.
Oh, sure. I feel much better now.
Some minor changes are in the works here at It’s Like This—completely insignificant in the grand scheme of things but a creative project that is helping to keep me sane!
If you’re a regular subscriber, you’ll receive an email with an update soon.
If you’d like to be in the loop, please subscribe (for free) here:
Thank you for being here. I am genuinely grateful for that.
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
The other day, I was completing an online survey to give feedback on a company’s mindfulness and meditation content (in other words, I was ignoring most of their advice and mindlessly procrastinating on my writing and life goals).
I hadn’t even reached the actual survey when I hit a snag on the demographic questions leading into it.
Full transcript here: https://open.substack.com/pub/itslikethis/p/49-other
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
“Now I’ve been hangin’ around you for days
But when I lean in, you just turn your head away…
…I always have to steal my kisses from you
Always have to steal my kisses from you.”
—Ben Harper & The Innocent Criminals
This TikTok video came across my desk and I felt seen.
It’s a montage of a guy showering love and kisses on his cat. His cat is not having it.
A dozen years ago, when my son was a young teenager, I inadvertently described this cat’s objections to his adorer’s kisses in a piece called, “Tough Love.” It was published in the parenting anthology Monday Coffeeand featured on Sammiches & Psych Meds. It still rings true, so I’m sharing it in full below –
I’m not sure when it became clear to us that our son had an aversion to our kisses and hugs, but somewhere along the way, he made it known that physical affection was not his thing.
I wrote “Tough Love” to tease myself about his rejections, and to remind myself that “my needs and his don’t always match up.” This was written in jest, but just so it’s clear: I did, and do, respect his right to not be kissed or touched without consent more than “stealing kisses” implies.
Here, we live by this cat’s rules and try to lessen his need to show his fangs.
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Please go to https://itslikethis.substack.com/p/48-tough-love for the full transcript of this post! Thanks for being here...
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
My son came into my office early one morning and stood behind me at my desk, spinning his beads over my head. I swiveled around in my desk chair, placed my hand on his belly and scanned his face for his mood. He seemed content. His bed-head indicated a solid sleep.
“Good morning, buddy,” I said. “How are you?” Not expecting a response, I was in mid-swivel back to my computer to close out what I was doing when he volleyed a casual, “I’m good.”
I laughed in shock, hit with this splash of normalcy that means nothing to most people – a mundane piece of social nicety we typically gloss over.
I know that he’s most likely tossing out a learned script someone’s been practicing with him, and in the grand scheme of how he’s going to get along in life, a rote response may not seem to matter.
But this rare reciprocal gesture brightened my morning, at least.
I’m good, too, buddy. I’m great now, in fact.
-- Please go to https://itslikethis.substack.com/p/47-sweet-talk for the full transcript.
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
There was a guy at my high school who always dressed in the same blue sweatsuit. No matter the weather, I would see him across the quad, maybe pacing or talking to himself, always in blue. I don’t recall any conversations my friends and I had about him, but somebody dubbed him, “Blueberry.”
That’s all I knew about him. I didn’t give him another thought (self-absorbed teenager that I was)—until I found myself in daily negotiations over clean shirts and weather-appropriate clothes with the young man who lives with me.
Now I wonder, thirty-five-plus years later, if I might know something about that kid after all. And, his mother.
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Please go to https://itslikethis.substack.com/p/46-well-met for the full transcript.
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
We’ve seen a lot of Aprils since my son was diagnosed with autism in 2002 — and a lot of conflicting opinions about how best to promote autism awareness, acceptance, and action for Autistic individuals and for their families. I have joined campaigns to celebrate the “ausome” in autism, and to mourn the loss of Autistic children to wandering and drowning. Some years I marched for certain organizations, and in later years spoke out against them. I’ve helped raise money for biomedical research, for inclusion programs, and for private specialized placements. I’ve written letters in support of behavior therapy, and against exclusion and restraint in schools. I’ve decorated with puzzle pieces and ribbons, with blue lights and rainbows, and, in some years, with nothing at all.
For a parent like me, autism advocacy can be a roller coaster. In fact, the more I thought about it, I could see how extending that metaphor could be a playful (and a bit snarky) way to explain a few things, from this mom’s perspective, anyway.
The ways that this disability impacts my son and our family can be quite serious. And, sometimes, I also just need to laugh. If you’re up for it, hop on this ride with me.
Please keep your feet inside the vehicle at all times, but feel free to keep your hands flapping.
This is: If Autism Awareness/Acceptance Month was a Theme Park…
Please go to https://itslikethis.substack.com/p/45-april-adventures for the full transcript!
Audio recording: Sound Effects from Pixabay & Music by Mykhailo Kyryliuk from Pixabay and “It’s a Small World” via the Internet Archive.
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
The town where we’ve spent many spring vacations since my son was little (thanks, Mom & Dad) is overlaid with memories of my kid running on the beach, chasing gulls, splashing in the frigid water, and tossing a ball into the waves to play catch with the ocean.
At almost 25 years old, my son seems to have cooled to the idea of a beachside vacation.
I’m lucky that he lets me go anyway.
As we do on any family vacation, we transfer ourselves to a new locale but try to keep as much the same as possible. I pack some new clothes for me, and old familiar shirts for him. I bring my “work” with me, cramming my bags with packets of condiments, medications, beads and earplugs. (I was never allowed to be a Boy Scout, but I am always prepared.)
--
Please go to https://itslikethis.substack.com/p/44-snacks-by-the-sea to read the full transcript.
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
For the full transcript, head to the text version of this post at itslikethis.substack.com/p/43-a-place-at-the-table
I kept apologizing for my kid at a recent family gathering. They put their dogs away for him and we brought his own food and we scooted out early—and, his nervous pacing brought him repeatedly between conversations, and his broad body inadvertently blocked camera angles.
Our family kept saying, it’s fine, it’s fine, stop apologizing, he can be wherever he needs to be, he’s good, it’s okay. It was okay. He really did great, and we are lucky to have a family that accepts and loves our son as he is, as they have for going on 25 years.
After dinner my son circled the kitchen, then tentatively whispered to me, Birthday Party? I didn’t understand his confusion until I saw the fruit tart the birthday girl had requested. This did not look like an appropriate cake to him. But once we sang, “Happy Birthday,” he tried the dessert (and liked it)—after taking it upon himself to blow out her candles. Sorry!
I often play interference when my son is with me. It is my never-ending balancing act, to present him as belonging, worthy and welcome, to help others provide accommodations—and to make sure he understands some social rules, teach him to be respectful and aware and maybe just a little less obtrusive, if he is able.
I have felt this sense of scrambling after and around him, trying to help him fit in, all his life—really from his first invitation to join his same-age peers in a classroom...
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In this space, I try to find the words to explain what it’s like.
It can seem like such a tiny thing, really. Nothing to add to a Christmas Card.
A flash of knowing, a smiling pause.
What it’s like, for example, to watch my 24-year-old son easily accept the pulse oximeter on his index finger from a new nurse at a new doctor’s office but then watch him become confused when she steps away for too long.
What it’s like to see how he reaches out his hand to her, stretching from his chair, trying to get her attention to remind her that this thing is still clamped on his finger, and when she doesn’t see him, what it’s like to hear him speak a single word that he has remembered — a word he’s heard his parents or providers use when he needs a sensory reset and they squeeze the tips of his fingers.
I don’t always know how to explain how surprising and refreshing it can be to watch my son find the words.
The nurse didn’t hear him say, “Pressure!” but I did, and it was a gift.
--
Please go to https://itslikethis.substack.com/p/42-small-words for the full transcript.
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Four seemingly unrelated micro fragments that explore attitudes toward change. To resist, adapt, accept, embrace.
Please go to https://itslikethis.substack.com/p/41-flexibility for the full transcript.
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I’m not a poet (oh, I know it), but for this issue, I followed a prompt to write a “pantoum” style poem. This was interesting and fun, so I decided to share.
Please see https://itslikethis.substack.com/p/40-house-rules for the poem and full transcript of this post.
Thanks!
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“Run” was originally published by BarBar Literary Magazine.
I run down the deserted bike path, along the winding, manicured greenbelt behind the homes of our new neighborhood. Through wrought iron fences, I can see into my neighbors’ backyards, their pools and patio chairs empty on this weekday morning. Behind closed sliding glass doors, suburban housewives mind their own business, a few perhaps shaking their heads at the distant sound of a fellow mom losing her s**t.
...
Please go to https://itslikethis.substack.com/p/39-run for the full transcript.
Thanks for listening!
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I barely notice it anymore, the thousands of steps our son racks up every day, the miles he walks in our living room. In our home, it’s like this.
It’s not anything like the disembodied pitter-patter of our toddler’s feet coming down the hallway to interrupt our late-night TV, which was sweet (but also creepy in an evil Chucky doll kind of way).
Today, his footfalls are very much embodied, man-sized strides crossing the room again and again, bare feet slapping, beads spinning, and singing or scripting or beatboxing, too. It’s how he soothes his anxiety, entertains himself, satisfies his restless limbs.
We’re mostly immune to it—unless his route is taking him back and forth through a conversation we’re trying to have.
But it’s not like this, exactly, when we’re away from home. It’s like this, amplified.
Please see the text version of this post for the full transcript: itslikethis.substack.com/p/38-solid-ground
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A parody IEP (Individualized Education Plan) for a middle-aged mom with objectives for self-improvement in 5 skill areas.
Ten years ago, I wrote some self-improvement goals in a handy IEP-inspired format.
I am a decade older…and all my previous goals are unmet.
My Response to Intervention has been dismal.
So, in honor of the new school year and all those who will be wrangling those wonderfully fun Individualized Education Plans for their special needs students, here is my updated IEP for Me.
Please go to https://itslikethis.substack.com/p/37-iep-for-me-2023-24 for the full transcript.
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All I wanted was something official to document that my son has a medical condition that should be printed on his state ID card.
I suggested some simple wording to argue for an “Autism” label, like: “This developmental disability impedes his ability to communicate.”
The letter his doctor’s office sent made me wince.
I mean, I knew it wasn’t going to say: Watch out! This young man may come at you with an exuberant “Ah-Cha!!!” when he’s happy.
But their note went well beyond his non-speaking challenges...
Please go to https://itslikethis.substack.com/p/36-identification-please for the full transcript of this issue.
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Hi all! In celebration of It’s Like This hitting a new mark of 100 subscribers (oh sure, I’ve been writing on Substack for 2 years…but, slow and steady, right? 🐢), I’m pulling an essay from my “Before This” file today. This is the first piece I ever wrote about my son, and the first to be published—in a beautiful anthology of stories about mothering called Monday Coffee.
Thank you to all my new and old readers!! And if you know anyone who may want to read along, please spread the word!
Please go to https://itslikethis.substack.com/p/35-opening-doors to read this full issue/transcript.
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We take turns tapping our fingers on the couch cushions, copying each other’s rhythms. I shake my hand between his two. He lets me tousle his hair. It feels good to smile with him.
My heart insists I haven’t seen him in days, but it’s only been, what? Not even 12 hours? Just a chunk of time longer than the three or four hours I get a few days a week, those small breaks I fill with errands and quick gasps of writing or reading.
My son locks eyes with me and, for the millionth time, I wonder what he’s thinking. Maybe he missed my face, my presence, and not just me as provider of food and fidgets and fixes. He lets me share his space without telling me to stand up. Maybe my voice sounds less irritating to him after it’s been quiet for a while. I tell him about my day and confess that I missed him.
Whenever I have a full day or rare overnight away, I am not aware while I’m gone that I miss my 24-year-old who needs 24/7 support. I enjoy my solo time with friends or family, savoring activities he’d have no interest in, indulging in conversations not interrupted by perseverations about snacks or the arrangement of household items, remembering who I am when I’m not in charge of his care.
But returning is often an unexpected joy. A reaffirming, and genuine, good feeling.
Please go to the text version of this newsletter for the full transcript.
https://itslikethis.substack.com/p/34-returning
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This is a story about how weird I am. A slightly awkward encounter—absolutely made weirder by writing about it, but I just couldn’t get it out of my head until I did. So, here you go. :)
I tell myself to just ignore this guy—which is like telling myself to not picture a polar bear. I should’ve moved over when I had the chance. I still have that chance.
Yet, here I sit.
On the days I drive my son down to his day program, I can’t stay holed up in my home office. I’m forced to find someplace to be “alone” in public. This library usually has a better vibe for me than a noisy café, but today, it’s more people-y. Probably because it’s a bazillion degrees outside. We’re all dreaming about polar bears.
This four-seat table was the only empty one in the row of study tables along the windows. I snagged one quarter of it and hoped no one would need to share.
But within five minutes, a guy wearing a white face mask and lugging a couple of books came out of the stacks, glanced at the other full tables, and approached mine. I mumbled, “Oh, do you need to sit here?” and shifted my book bag and iPad closer.
Please go to https://itslikethis.substack.com/p/33-table-for-two for the full transcript.
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There’s a sticky note posted on the inside of my home office door with three words I heard in a recent meditation lesson — a mantra that helps me manage life on the other side of that door.
“Whatever happens in any moment…whether it’s beautiful or hard…you can always make it through to the other side.
Come what may.”
What comes, at 3:30 a.m. on the first morning of our vacation up north, is the sound of vomit splattering on the laminate floor in the hallway outside our VRBO’s master bedroom.
Full transcript here: https://open.substack.com/pub/itslikethis/p/32-come-what-may-but-please-not-that
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When my son was little and I was in a brief period between jobs, I introduced myself to someone as “just a stay-at-home mom.”
This woman corrected me in a kind, firm voice: “Don’t say just.”
“Oh, yeah,” I stammered. “I didn’t mean– You’re right, of course!”
I said just because I always expected to be doing something “more” with my life.
What exactly? I can’t even remember.
I have worked “outside the home” in some way for most of the years my son was growing up — thanks to super-flexible schedules, understanding bosses, and a tag-teaming husband.
But still today, after almost 24 years on the job, I tend to downplay my work as a mom and caregiver when someone asks what I do, even though that role has become more involved. I will usually lead with my other more interesting part-time gig, the one I keep up in addition to my 60-plus hour work week for my son.
Then I’ll add, with almost a shrug, “but I’m mostly a caregiver for my adult son who has a disability.”
Please go to the text version of this newsletter for the full transcript at itslikethis.substack.com/p/what-do-you-do
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I received a “God bless you” the other day from an elderly man who was in line behind me and my son at the pharmacy.
My prescription wasn’t ready, so I had to distract my son with reading labels on the shelves along the aisle, monitoring his patience, explaining and re-explaining that we needed to wait. On this day, he was doing fine – pacing, spinning beads, bouncing on his toes, leaning into my face with the question in his eyes, can we go, now? but not yet forcing the issue.
The man behind us got his meds and pushed his shopping cart past us. “God bless you,” he said, with sad eyes and a serious expression.
God bless you. People say this as shorthand for: Wow, you’ve got your hands full, or I see the hard work you’re doing or I’m praying for you because you really look like you need it.
Sometimes, in our special needs community, these kinds of comments from outsiders can rankle. We feel the need to educate, tell others that our children are not burdens, that we are parents much like other parents, just with some different issues and perhaps more complicated lives. Even when the comments are offered with kindness, I can still feel an urge to clap back and say, hey, that’s my child you’re imagining as less than. He is so much more than you are seeing....
For the complete transcript, please go to itslikethis.substack.com/p/29-awareness
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I won’t dress this up as anything other than what it is.
This group costume was not my son’s idea. He does not share my enthusiasm for Halloween.
He might like seeing the orange and purple lights and spooky decorations in our neighborhood, but he has no interest in helping me decorate our house with jack o’lanterns, window silhouettes, spiderwebs and skulls.
He definitely likes that candy gets handed out every place we go, and he notices other people’s costumes, but he doesn’t really care about dressing up himself.
He indulged me when he was younger – he let me dress him as Woody or Jack Skellington or Spongebob, a firefighter or a basketball player. Did he ever really like this tradition? Some years, it seemed so. Some years, clearly not (he is not smiling in that adorable dinosaur costume I made for him in Kindergarten).
As he got older, the chances of him willingly dressing up diminished, and that’s OK. Not everyone is into Halloween.
...
Please go to https://itslikethis.substack.com/p/zoinks for the full transcript.
Scooby Doo theme song: https://archive.org/details/tvtunes_7494
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Hi - Thanks for being here! This post is making me hungry….
Since my son’s diagnosis 20 years ago, when his first developmental pediatrician encouraged us to “clean up” his diet, I’ve been in the kitchen a lot.
Autism has shaped how I shop and cook and think about food.
Sure, I’m past the days when I would make my own gluten-free pretzels and cookies, even bending a metal cookie cutter into a goldfish so my preschooler could have the same-shaped snacks as his friends.
But I still spend a bulk of time planning and preparing his meals, my eye on the gut/brain connection and the overall benefits of whole, healthy food.
...
Please go to https://itslikethis.substack.com/p/inmykitchen for the full transcript.
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EGG! This is not a demand for breakfast. This is one of my son’s latest warning words – like banana, channel, or bug-bee – that give me a heads up that we’re heading into irritation-territory.
My son’s moods are hugely unpredictable.
From one day (or hour) to the next, I could be writing a different description of life within these walls.
Please go to the text version of this post for the full transcript:
https://open.substack.com/pub/itslikethis/p/hugsandeggs
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The spa’s “relaxation room” was bathed in soft blue light.
A wall of hanging glass beads, lit from below, simulated a cascading waterfall.
Calm instrumental music played as the scent of lavender essential oil wafted from a diffuser.
Two decanters offered cool ice water or hot water for tea.
As I sat there in a cushy robe on a cushy lounge chair, I took a deep breath and I thought:
Now this is a really well-done sensory room. I wonder how my son would react to this?
Yes, the strategies of autism-land are never far from my mind, even on a girls’ weekend getaway.
But then I thought, Wait, I need more of this....
Please go to https://itslikethis.substack.com/p/relax for the full transcript.
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We are caught in a slow-down on the freeway. There’s a bottleneck up ahead.
My son is in the passenger seat, his lunchbox at his feet. We are heading home from his day program through the heat of the late afternoon.
I’m feeling the pressure of cars on all sides of us and watching for an uptick of anxiety from the boy on my right, due to this blip in our expected routine. This is a scenario ripe for agitation, for both of us.
Our lane has got to be the slowest. We are an island with everyone else skirting around us, getting ahead while we never seem to move.
I smile when I recognize the metaphor.
Oh, this is the special needs life – sitting side by side with the person you’re caring for, moving at a different pace, bracing yourself for the inevitable bumps in the road, trying to fit in … if others will let you.
Instead of this idea sending me into road rage, I am surprised to hear my thoughts – for the briefest of moments – go in a different direction:
I can be OK with this.
Inside our car, in our bubble, we’re fine.
He and I are sitting together. His hands are spinning beads. My hands are at 10 and 2 (because that’s what my co-pilot prefers).
We have air conditioning to stave off the heat. We have snacks to curb any pre-dinner munchies. And we have music playing on the radio.
Right now, it’s like this. And, we’re OK.
I guess this is what those mindfulness meditation teachers have been talking about – the benefits of living in the present moment, no matter what that moment looks like.
Even when we’re stuck in traffic.
Yes, it can suck to be in the lane that doesn’t seem to be moving.
But I could really make this traffic jam worse – by worrying over what we’re missing out on in this delay or blaming myself for not taking a different route or thinking about how much I just spent on gas or becoming convinced that, this is it, we are going to be stuck here forever.
The simple reality of right now – stripped of all the stress about getting to some future place where things might be different – is usually easier to handle.
This doesn’t mean denying the suckiness of the current situation, it just means not compounding it with over-thinking and over-worrying.
This, too, shall pass, and all that.
The traffic squeezes us. My son changes the channel on the radio to a better song. My grip on the steering wheel loosens a bit.
Wow. If I can find a hint of serenity in the middle of rush hour on the 101 North, anything is possible.
In moments like this, I catch a glimmer of a new kind of hope – it’s not entirely clear to me yet, it’s still a wavery mirage over the distant pavement.
It’s different from the fear-fueled hope of my son’s early days, when I thought maybe we could still maneuver around this autism thing and race onto some clearer path.
This is a more grounded hope. Not that everything is going to be OK, but that we will be OK.
Even if we never get out of this lane.
This is the road we’re on.
It’s always stop-and-go, it can be sketchy, with crappy signage and endless detours.
Sometimes an opening appears, and our pace increases…until, inevitably, we slow to a crawl again.
But we will be OK. With time and practice, and a caravan of supports, we can build our capacity to navigate around the potholes that are surely on the horizon.
Right now, we are at least inching forward in the right direction.
And, hey, there’s a good song playing on the radio.
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I mostly ignored April this year.
Autism Awareness Month – or Autism Acceptance or Action Month – whatever color we’re wearing these days.
I know I should use any forums I have to promote awareness and encourage acceptance and demand action for those living with autism.
But autism is loud enough here already without that extra amplification.
There’s only so much I can handle.
The April theme around here seems to be irritability.
His, and mine.
I’m irritated with his health insurance company, who somehow forgot that I am his legal guardian and am, in fact, authorized to talk about his care (no, you can’t actually speak to the “member,” although, believe me, I would love it if you could).
I’m irritated with pharmacies and prior authorizations and potential drug interactions and doctor’s appointments that take forever to get scheduled.
I’m irritated that the notes from his dermatologists’ appointment say, “Patient was offered full body check and refused,” when they really should say, “Parent/Guardian requested a full body check, but patient was unwilling in the 30 seconds the doctor allotted to give him a chance to agree.”
I’m irritated for friends managing very challenging aspects of this disability that are not worthy of any April autism celebrations.
I’m irritated by the difficulty of describing my son to potential new providers – how to paint an inviting and positive picture that is also realistic about the ups and downs they might encounter on the job.
Because my son is irritable this month, too.
He has had some nice moments – time with our extended family, outings with his day program, even trying a few new foods (and he liked the broccoli calzones! Yes!)
But in between these glimpses of contentment, he’s agitated at things seen and unseen – and his irritation takes over his voice, his body, and our shared living quarters.
I’ve pulled out the blue tape again, to block his perseverations from the kitchen while I’m cooking.
I keep my office door closed more often.
I’ve added a “Do Not Touch” sign to the kitchen faucet to remind him that he and I are not in agreement about how the sink should look.
We argue over clothes and chores and cleanliness and carbs.
I try to choose my battles, still searching for the right balance between his autonomy and my necessary caregiving.
Some days, everything is a battle, and I’m waving the white flag over all of it.
Sorry I bought you new shoes, kid. How dare I? You just keep wearing your old worn-out ones while I figure out an appropriate “transition” plan…
My son often sleeps in late, and is usually agitated on waking, so I find myself in the mornings reciting a variation of this prayer that I’ve seen making the rounds:
When he is snippy, it’s hard not to take it personally.
I tell myself that I need to have thicker skin. He is allowed to b***h and stomp around if he wants to, and it’s not about me.
Well, sometimes it is about me. I’ve kept my hand in my pocket for too long, my hair is not the way he likes it, my sleeves are pushed up, I’m using the wrong pen.
My son takes a medication that is approved to treat “irritability associated with autism.”
I am associated with autism, and I am also irritable.
Is there a pill for that?
I worked with a Relationship Development Intervention (RDI) therapist for a few months who reminded me that my son needs opportunities to just be with us – no demands, no expectations, not even suggestions – to just have someone there, to be with him as he is.
He doesn’t always want that connection, but when I really stop trying to help or instruct or explain, the irritants fall away on both sides. He doesn’t have to hear my annoying requests or questions, and I feel a little less worried about his behavior and health and whatever I’m supposed to be doing for him next.
If he’s willing, we can just hang out and practice not getting on each other’s nerves.
I don’t always know what is beneath his agitation.
But I know what’s beneath mine. I am worried for this kid I love, frustrated that there are no easy solutions – and his agitated noises make it hard to think (or make the needed phone calls).
All I can do, some days, is step away – put in earplugs, go for extra walks, turn up the music – to try to get myself in a better place in order to help him.
And, hey, giving myself a break from him gives him the benefit of a break from me, too.
Almost daily, my kid will come close to me and abruptly turn his back – blocking my view of whatever I’m doing. It’s not a snub, though.
“Itchy!” he declares, demanding my assistance.
I can’t seem to relieve a lot of his other irritations lately.
But this one, I can do.
I scratch his back, and – at least for a short minute – we both feel a little less irritated.
Thanks for being here. See you in May (and Go Suns!)
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Listen now | March 22, 2022
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Listen now | February 31*, 2022
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Listen now | January 18, 2022
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Welcome to It’s Like This Issue #17. Thanks for reading (or listening to) my musings about life around here. I know I sound a bit grumpy on this one, but I shake it off by the end, I promise… :)
We tiptoe into the holiday season around here.
We decorate, just a little. We find a present or two, maybe. We socialize, in moderation. We bake, a lot.
When your only child dislikes change, could do without crowds and noise, and has no interest in gift giving or receiving, finding joy at Christmas can be a challenge.
In my Scroogiest moments, I say we’d do better to just fast forward to the New Year. Adding extra “to dos” to my everyday responsibilities, not to mention still living under this never-ending pandemic and feeling heavy-hearted for friends who are missing loved ones this year? Bah-humbug, indeed.
And it doesn’t help me get into the spirit that my son’s autism makes it difficult for him (and those around him) to enjoy many of the holiday traditions that once defined the season for me.
He has become less tolerant of Christmas decorating in recent years. Making too many changes in our home makes him uneasy. He’s much more likely to participate in the un-decorating in January, happy to restore order to the house.
When he was younger, my mom and I hoped to pass on our tradition of a special night out to see the Nutcracker ballet. He didn’t feel the magic as much; the first act was an exercise – literally – of holding my left leg askew, a barrier protecting the patron in front of us from my son’s jiggling feet. My boy opted not to return to his seat after intermission, content to leave Clara still in her dreamland, waiting forever outside the Sugar Plum Fairy’s castle.
The other hallmark of my childhood Christmases – a modest church hall transformed into beauty with fragrant pine wreaths, candles, and incense, and filled with the fellowship of strangers singing carols together – doesn’t hold the same mystery for a child who is hyper-sensitive to all those sights and sounds and smells.
Likewise, a boisterous family gathering – with many cooks in the kitchen, rearranged furniture, and loud conversations competing with the football game on TV – is less than merry for someone who wears earplugs to tolerate everyday noise levels. My son loves to see his family, but he flits in and out of the group, appearing briefly to snag a cookie or a grandpa tickle before retreating to turn down our volume.
Buying gifts for my son is both difficult and easy. He does not ask for anything and is rarely interested in receiving new things. He isn’t eager to participate in a Christmas morning gift exchange – my husband and I will open a few presents, and our son will hover to make sure we clean up the wrappings quickly. Any gift I still insist on wrapping up for my kid (it’s just a hard habit to break) will linger unwrapped into the New Year, or at least until he gets tired of me pleading, “What is it? Open your present!”
‘Tis the season. We make it what we can. Like most special needs families I know, we find ways to make joy accessible and drop the rest.
Each year, I’m hopeful my son might be interested in helping to decorate for the holiday. He will even begin to say things about Christmas as Thanksgiving arrives. Although he no longer plays with the toy nativity my Godmother gave him when he was a toddler, it’s sweet to hear him recite the names he learned: “Mary. Joseph. Baby Jesus. Sheep. Shepherd. Donkey. Camel. Wise Man. Wise Man. Wise Man.”
But when the bins of decorations come out, he’s not a willing participant, so I settle for a few hints of Christmas and leave most of it packed away. Ah, less is better, really, anyway…
We won’t take him to church, or to the ballet. Even the “special needs night” at the local train park that was our annual tradition for years has fallen out of favor.
His need for quiet reminds me that I also crave simplicity away from most of the hustle and bustle, especially as public spaces get noisier at this time of year.
We’ll take a drive together, or walk in our neighborhood, to see everyone’s light displays. We can “go” to concerts or see movies on our TV at home, and if he wanders in and out of the room, that’s OK.
We won’t ask him to pose in fancy holiday attire for family photos, but I can be assured of some level of “dressing up” when he agrees to wear a new-ish jacket or hoodie over his familiar t-shirts.
When we gather with family, I’ll be reminded that we have the most supportive, kind, accommodating family that we could ask for. They all accept him as he is, offer love in fidgets and food, and welcome him at whatever level he can attend. That’s such a gift to us, really.
And, I’ll fill the void of a mutual gift exchange with my son by indulging him in the one holiday tradition that he truly loves.
Here come the Christmas cookies.
In the spirit of the season, I will set aside my relentless quest to clean up our diets and encourage healthier eating.
I’ll play the Nutcracker Suite or other holiday music to set the mood while we follow our family recipes and make a mess of the kitchen. My son will help some, and supervise more, and taste-test every batch.
We will practice gift-giving by sharing cookies with our friends and neighbors, my boy always wary that we don’t give away too many.
We’ll gather in small doses with family, wear comfy clothes, and balance out the stress of the season with sugar.
We’ll head into the New Year fatter but happier.
There’s certainly some joy in that!
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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…
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Listen now | October 5, 2021
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
Listen now | September 14, 2021
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
Listen now | August 31, 2021
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
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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Listen now | July 6, 2021
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
Listen now | June 23, 2021
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