This Week: We Aren't Crazy

But parenting a kid with sensory & hyperactivity challenges sure makes it feel like we are.

Welcome to the Chaos Palace is about coloring outside society's boring ol' lines. More specifically, it's about ADHD, parenting, queerness, and Judaism. Subscribe to get new ideas (big and small) about how to expand the boundaries of societal rules. Paying subscribers get updates from my own Chaos Palace, as well as conversations with folks who are whistling their own quirky tune for just $5 a month or $55 for the year. Let’s get messy (and chaotic) together!

Dear fam,

I keep checking the date to see if November is almost over, but it sure isn’t. How can this be? It feels as though I’ve lived about 20 lifetimes in the past few weeks. There are a few new subscribers here at the Chaos Palace (hi and welcome!), so I’ll give a quick recap of events.

My wife and I moved from Brooklyn to New Jersey this past summer, after nearly a decade in the city. Transitions are not our Big Kid’s forte, in general, but he took to this one pretty well. Jersey is quieter, he has more space to run around — all good changes for a hyperactive kid with sensory integration issues. During the last few weeks, though, things have taken a turn for the worse as Big Kid bumps up against the confines of his preschool’s rules. Or just stuff not going the way he wanted it to. Two weeks ago, the school asked us to begin picking him up two hours earlier each day. Now, they have asked us to find a one-on-one aide to be with him in class each day. We have to figure that out in the next ten days or find another school program.

“Can we even do this?” my wife asked me, after we got the email detailing this new development. “We have to,” I said, “He’s our kid. Besides, if anyone can do it, it’s us.” She nodded, then put her head on my shoulder. We both sat there, sad that things are so hard for our sweet four-year-old.

A lot of folks who’ve known my family for a long time will be surprised as they read this email. They may be wondering if the school is exaggerating, or if everyone has forgotten that four-year-olds have tantrums. That it’s normal. How on earth could this be such a problem that we are, once again, faced with the prospect of finding a new school mid-year?

I have heard a version of this question many times, always from well-meaning folks who are speaking truth. In fact, even the teacher at this school (who is lovely and doing her best!) told us last spring that she’d seen it all and could certainly handle Big Kid’s big feelings.

Kids have tantrums and meltdowns. Of course they do. But Big Kid is not having tantrums — he’s having sensory and emotional meltdowns. And, while externally similar, these are two distinct events.

This week, I finally realized why I’ve been feeling a little crazy.

The first thing that helped me get clarity was a session with a parent counselor, someone who’s helping us figure out how best to parent Big Kid. We were talking about my postpartum anxiety and insomnia, about the five days of pre-labor contractions and subsequent 20 hours in the delivery room. “You know,” she said, “Kids with sensory issues often have more difficult deliveries. It may be because the fetus itself has a sensory issue and isn’t responding to the birth process in a typical way¹.”

The second thing happened when my wife and I Zooming with the support group — Queer Parents of Neurodivergent Kids — we started last year. One of the other parents was sharing about her kid, who is about Big Kid’s age. His teachers are also always baffled when he has a meltdown at school. He was fine yesterday! And a minute ago! What the heck is different now?

It’s a trick question. Nothing is different. Our kids have sensory integration differences all the time. For Big Kid, this means he is receiving far more sensory information than the average bear at all times. You heard an ambulance go by? He heard it twice as loud and he probably heard a handful of other things you didn’t even notice. You felt the finger-paint on your hand? Imagine that, times a million, and it feels like it might never end. Now, imagine how it feels to keep your shit together and behave yourself while you’re incessantly receiving a million such signals from every direction at once.

In a recent interview, Dr. Andrew Kahn, PsyD, an ADHD expert for Understood.org, told me that the neurology of ADHD is like a sticky ball. “It doesn't do a great job in differentiating what's important for what's unimportant,” he said, “So, as a sensory being, imagine that you roll that ball around your house. It's going to be covered in all kinds of stuff at the end of that few minute period of time, because neurology that is sticky is going to pick up everything. The neurology of ADHD oftentimes grabs too much. Sensory processing, and how it can lead to people being irritable and and easily frustrated, that's an ADHD piece that we don't often talk a lot about.”

To me, this is crucial to my understanding of myself and Big Kid. It’s also what makes his different-ness so maddeningly invisible to so many people. He is a bright, sweet, curious, kind-hearted child. I’ve had friends say they can’t imagine it can be that bad when he has a meltdown.

To which I reply, in my head, “Not a tantrum.”

He is frustrated by the perpetual noise in his head. He is overwhelmed by the intensity of his emotions, which are also twice as big as those experienced by his peers. Not anger, but ANGER. Not joy, but JOY.

He is afraid of the suddenness of sounds, of the brightness of lights.

It’s not a tantrum. It’s a breakdown of the conscious mind. He is screaming like a banshee because he is outside his body, because his body is too much right now.

I don’t know how to explain this to people who haven’t experienced it themselves. But at least now I feel confident enough about this to know I’m not crazy. This is truly different. It’s truly hard to navigate. To live in the world as Big Kid’s parents is to live in a world of brighter colors, louder sounds, greater joy, more intensity. The saturation on the image is turned all the way up, all the time.

You know what, sometimes it’s fucking fabulous.

Like when we went for a nature walk last week. Big Kid was ecstatic — every crunch of leaves, every log to walk on, every hill to climb was a new adventure. His eyes shone. We got to roll around in leaf piles and shriek with delight as we threw them at each other.

Or when we went to pick up my wife at the bus stop. In the parked car, I unbuckled both kids and we had an impromptu dance party in the parking lot of a CVS. Both kids’ raucous laughter echoed across the otherwise dingy (and, frankly, kinda gross) blacktop.

Or when we play tag in the living room, giggling as we chase each other around and around, up onto couches and tables and chairs, collapsing at last into a pile of wheezing, grinning cuties.

We do have fun at the Chaos Palace.

My sister-in-law has been visiting us for a week or so. Two nights ago, after the relay-race that is bedtime, she looked at me and said, “I think I finally understand what you two have been going through.” That’s the third thing that gave me clarity on our invisible plight. It’s very real, and very hard to describe, and very unbelievable.

I felt affirmed by her words. When I asked what she’d seen, she said mostly that our parenting never stops. We are always on the job. Always defusing, negotiating, navigating. We’re not crazy, I thought.

Somehow, the simplicity of that understanding — that this is a very real situation — makes it easier to accept. Maybe it also makes it easier to lean into the happy moments. Maybe it makes it easy to go the distance.

I don’t know yet. But I promise to let you know if I find out.

Wishing you a weekend of inhabiting your truth!

Shabbat shalom,

Mikhal

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Welcome to the Chaos Palace is about coloring outside society's boring ol' lines. More specifically, it's about ADHD, parenting, queerness, and Judaism. Subscribe to get new ideas (big and small) about how to expand the boundaries of societal rules. Paying subscribers get updates from my own Chaos Palace, as well as conversations with folks who are whistling their own quirky tune for just $5 a month or $55 for the year. Let’s get messy (and chaotic) together!

Resources to Read and Listen to About Israel-Palestine

I usually have book, essay and listening recommendations here. The truth is, though, virtually all the media I’m consuming right now is about the war in my home country. As I wrote in last week’s newsletter, I’m dedicated to bringing you all interesting thoughts about what’s going on in Israel-Palestine. I think it’s crucial to read pieces that do not necessarily agree with each other but that, when superimposed on one another, provide a complex picture of the fighting and everything around it. To that end, here is a non-comprehensive collection of things to read and listen to that may bring us closer to growing through discomfort towards a fuller understanding.

Holly Whitaker

wrote an essay for

Recovering

called “ On collectively bottoming out,” which is about the way media (especially social media, but also the increasingly irresponsible phenomenon of ‘gotcha journalism’), is designed to make us reactive and jump to ill-gotten conclusions. While not specifically about the conflict, this feels very important in this moment, seeing as so much of the war has become about misinformation and losing trust in media.

Charlotte Clymer

wrote an essay for

Charlotte's Web Thoughts

called “When Both Silence and Statement Become Complicity” about the bizarre demand by modern cultural standards that we all have opinions completely baked and ready to go immediately, with little room for the idea that humans evolve and change and some situations are actually complicated and demand nuance.

Nicholas Kristof

wrote an Op-Ed for the New York Times wherein he attempts to disabuse us of several myths about the Middle East and posits that both sides must make concessions to end this tragedy.

Also in the Times, Jeffrey Gettleman wrote a piece about the complexities of Israeli-Palestinian relations in the West Bank.

Noha Beshir

wrote a beautiful, heart-rending poem about searching for meaning in the mundane.

NPR’s On the Media had two fascinating stories:

This one, about the modern need to make a statement about everything and how that impacts public opinion

and this one about the online media war about the on-the-ground war.

FINALLY, and this is important.

I listened to a critical conversation with Professor Hillel Cohen, of Hebrew University, this week. He has spent his career studying the conflict, speaking with Israelis and Palestinians of all backgrounds to understand the whole picture, insofar as that’s possible. It was the most clear-eyed, historical overview of the last 100-or-so years (actually, he goes back thousands of years, but mostly the last 100) in the region.

For my Hebrew-speaking readers: here is a link. I actually cannot suggest listening to this strongly enough.

For my English-speaking readers: Would you be interested in a translation of this episode? I would be happy to write a translated transcript, but only if enough folks are interested. Please answer this poll so I can gauge interest.

1. I looked this up and couldn’t find a super conclusive scientific study. That said, there are meta-studies like this one that suggest a correlation between sensory processing disorder and difficult birth, although it’s unclear if the birth challenges cause the SPD or vice versa (or, indeed, if causation exists at all). Nonetheless, it’s an interesting hypothesis.