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

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.

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

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

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

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.

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