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.

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

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 from Dan 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:

* Chop Wood, Carry Water by Jessica Craven

* The Weekly List by Amy Siskind

* Playing with Fire by Shannon Watts

* CEBV Weekly by Melinda Merkel Iyer [for AZ state action]

* Letters from an American by Heather Cox Richardson

* Civil Discourse with Joyce Vance

* Constant Commoner by Ramona Grigg, who offers a great list of others, here.

A few other updates:

* 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.

* 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?

* I’m also still working on this Index page for my autism-related writing—Another casualty of January, but more here soon…

* 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. 🤗

* 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.

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.

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

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...

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

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

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

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