A Sensory Story

It was spring of 2023.

I was 5 months postpartum and realized something was different about my firstborn—namely, that she was always, always, ALWAYS dysregulated.

At the time, I didn’t have that word in my repertoire, so I genuinely felt as though I was the world’s shittiest parent who just couldn’t crack my kid’s code.

Little did I know (or did I?), she was autistic, with intense sensory needs that I had no clue how to support.

Enter: sensory integrated occupational therapy, AKA, the tools that changed everything for us.

Let me tell you a little bit about what my daughter, who was 3.5 at the time, was experiencing.

2-3 meltdowns a day that lasted up to an hour, sometimes more.

Sleeping 3 hours MAX every night, in broken spurts.

Striking most foods from her already limited diet.

Withholding—one time for 10 days, through a doctor recommended Miralax protocol.

Biting herself.

Biting others—and feeling immediate remorse after, as though it was completely out of her control.

Her sensory system was in overdrive, and we had no idea how to help her.

To say I felt helpless was an understatement. It seemed as though every area of her life was being affected, and there was nothing I could do to help.

But then, we met H.

H was the first OT we ever met, and I consider us incredibly lucky to have met her when we did.

On a phone call she took from her son’s gymnastics class, she told me that it sounded like my daughter had some sensory needs that weren’t being met, and then assured me that we can find a way to support her.

So we took her in for a sensory assessment, and learned that she had something called a ‘mixed profile’—she was both sensory seeking and sensory avoidant. Suddenly, so much of what I had been struggling to understand made sense.

What worked for some kids wouldn’t necessarily work for her. And, as I would eventually learn, what she sought wasn’t necessarily what regulated her.

Every child is unique, and what one child finds calming, another finds excitatory—so we have to do the detective work to see how certain things affect our unique child.

One day, during what I call ‘the dark ages’ for our family, my sweet little dysregulated daughter bit her beloved Speech Therapist, and immediately felt remorse. It broke my heart on so many levels.

That very speech therapist, who became one of my closest friends, offered to do a session at the house to keep things in my daughter’s safe space.

When she arrived at the house, my daughter was doing something she had been doing for months—she was winding up her pod swing and spinning it out ferociously while hanging on it.

A teacups situation but on steroids.

She’s a sensory seeker, sensory seekers love to spin, right?

WRONG.

“Did you know that spinning can be super excitatory for some kids? Spinning is vestibular input, and for some kids, it can really rev up their nervous system. Sometimes proprioceptive input—things like jumping, pulling, or crashing, can help balance it out.” My bestie speech therapist said.

I had no idea.

But to test it out, I took the swing down altogether.

And, I kid you not, within 24 hours:

The biting stopped.

She slept more.

She ate more.

The meltdowns decreased.

We couldn’t know that the spinning was responsible for all of those changes, but the difference was impossible for us to ignore. The input that she had been seeking for months had been revving up her sensory system—and we had no idea how to bring it back down.

This is why I will forever preach the value of finding a sensory-informed OT who understands autistic kids—not because every autistic child has the same sensory needs, but precisely because they don’t.

Sensory support isn’t about finding a list of activities on Instagram and trying them on your kid. It’s about first understanding their unique nervous system: what they seek, what they avoid, what revs them up, what brings them down—and perhaps most importantly, recognizing that those things aren’t always as obvious as they seem.

Love,

Lei