Why Don’t YOU Get Off?

“You’ve got to think about the big things while you’re doing small things, so that all the small things go in the right direction.”
- Alvin Toffler

Soothing Lullaby

Did you know that Twinkle Twinkle Little Star has 5 verses? Yup, and I learned them all. On the bus home from the food coop that day, I was humming them softly, under my breath.

I continued to hum the same tune the entire bus ride. I was hoping my high strung baby would stay relatively soothed in his carrier as I navigated groceries and the unsettling gaze of our fellow riders. The humming was monotonous, but it kept us both calm. For everyone on that bus, I sang under my breath again and again, all the way home. 

I knew from experience that it sounded better than the alternative — his screams.

It wasn’t really the incoming meltdown I feared, and tried to postpone. I knew he would recover from overwhelm, and sometimes errands have to get done. It was the judgmental scowls, “advice” and crooked eyebrows as a result of the meltdown that I dreaded. They all came anyway, eventually, but that day on the bus, I got lucky. It was 10 years ago and I still remember the feeling of being more concerned about what strangers would think of me and my baby than I was concerned about his happiness. Maybe I remember that particular day because it was one of the few when he didn’t cry until we got home.

Judgment can be crushing. Dealing with intolerance and ableism, on top of loud noises and flickering lights, can wipe out my own nervous system. I can’t imagine what it does to the nervous system of a neurodivergent child. It’s no wonder my son feels relieved when he comes home to our quiet little sanctuary. I do too.

If you’ve never had a child with sensory processing issues or developmental delays, you might not understand why that parent you see in public, the one with the deer-in-the-headlights expression, can’t “control” their kid. It isn’t my job to explain it to you. Just know we are all doing our best. Our internalized ableism is enough to grapple with, we won't benefit in any way from your disapproval.

Public Display of Ableism

Over the years, I’ve grown a thicker skin, and a sharper tongue. I’m pissed off by public displays of ableism, which can get exhausting because they are happening all the time. Recently, I witnessed a mom having a challenging situation with her child on the same bus route I used to travel home with my son from food shopping, all those years ago. Her kid was screaming and his pitch was shrill. It was physically painful to hear. This mom was trying, frantically, to soothe her child. I had flashbacks.

I heard the various mutterings from around the bus, and saw her cower under the impossible demands coming from both her child and the other riders. My heart melted for her. I felt compassion, but didn’t know what to do with it.

It is already so much pressure to try to deal with a public meltdown in a confined space. Then there are those who think they know how to do it better. No one knows. Why is it so easy to point fingers?

Someone, irritated by the noise, suggested to the mom that she vacate the bus with her child, before her stop. Before I could stop, I heard myself snapping:

 

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No one ended up getting off, except for me, when it was my stop. I was shaking. Yes, I know there is a better way to change opinions than to shout. Still, I hope that mom felt a little less isolated. I hope her kid ended up being okay. That’s actually supposed to be the important thing.

Our culture excludes people with disabilities, including sensory sensitivities, ruthlessly. Ableism won’t be undone easily. I don’t feel I have a choice but to work towards creating a more inclusive, equitable and empathetic world for my kid and for all atypical kids to grow up into.

I’m sure there’s a better way to do that than snapping at ignorant strangers. Please, help me find it. ;)

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In case you or your child needs soothing, here are all 5 verses of the classic lullaby I sang my son on repeat for a year, because it stalled his meltdowns:

Twinkle, twinkle, little star,
How I wonder what you are!
Up above the world so high,
Like a diamond in the sky.
Twinkle, twinkle, little star,
How I wonder what you are!

When the blazing sun is gone,
When he nothing shines upon,
Then you show your little light,
Twinkle, twinkle, all the night.
Twinkle, twinkle, little star,
How I wonder what you are!

Then the traveller in the dark,
Thanks you for your tiny spark,
He could not see which way to go,
If you did not twinkle so.
Twinkle, twinkle, little star,
How I wonder what you are!

In the dark blue sky you keep,
And through my curtains often peep,
For you never shut your eye,
Till the sun is in the sky.
Twinkle, twinkle, little star,
How I wonder what you are!

As your bright and tiny spark,
Lights the traveller in the dark,
Though I know not what you are,
Twinkle, twinkle, little star.
Twinkle, twinkle, little star,
How I wonder what you are!

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Kate Lynch (she/her): Parent of an amazing atypical kid, inclusive yoga and mindfulness coach, and author. Her little neurodiverse family lives in a magical land called Brooklyn.

 

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My kid needs to grow up in a more inclusive world. How about you?

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