It's Like This Podcast

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...

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.

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Please go to https://itslikethis.substack.com/p/42-small-words for the full transcript.

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.

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!

“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!

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

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.

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.

Thanks!

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.

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