I’m no longer embarrassed by my kid. I admit, there was a time, not too long ago, where I was embarrassed. Woefully. Painfully embarrassed. I think it stemmed from not understanding his behaviors and thinking that others would judge me as a mom when he was acting out.
And then there’s the stimming.
Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autism spectrum disorders. It is considered a way in which autistic people calm and stimulate themselves. Therapists view this behavior as a protective response to being overly sensitive to stimuli, with which the individual blocks less predictable environmental stimuli. Sensory processing disorder is also given as a reason by some therapists for the condition. Another theory is that stimming is a way to relieve anxiety, and other emotions.
Jackson stims with hand movements, visually with his eyes, and verbally with sounds. The verbal stim is usually an “eeeee” sound or a high-pitched “aaaahhhh”. They happen automatically. They happen often. They happen without warning.
Imagine if I had no idea what the heck he was doing? Imagine parents who aren’t educated about stims and these repetitive behaviors and how those kids are sometimes treated (mistreated).
It breaks my heart to think about it.
When he was a baby, I had no clue his rocking on all fours, his mouth noises, or his obsession with ceiling fans were clues into what was happening with him. I thought it was totally normal baby behavior.
My first clue into something amiss began with what I wryly refer to as, “The Bagel Incident”.
Jackson was about 15 months old, when we went to lunch at a deli in our neighborhood. We were a large group – my 4 nephews, my brother and sister-in-law, my parents, Jackson, and me.
It’s one of those restaurants where you order at the counter, grab a table number sign, and then find somewhere to sit. It was pretty busy since it was lunchtime. We ordered, found seats, and waited for our food.
The space has tall ceilings with ceiling fans and fluorescent lights. The floor is a linoleum tile. It’s a standard looking deli/restaurant.
Jackson looked up and was totally enthralled by the ceiling fans. He was hyper-focused and excited by them and started to verbally stim a high-pitched sound that was, yes, loud. But he was not crying. He was not even upset. He was excited and fascinated and his way of expressing it was through sound.
We were mostly finished with our meal when an older woman walked up to us. My mom was holding Jackson and I was still seated trying to finish my meal.
I heard the woman say, “It isn’t fair. You shouldn’t bring him.”
That’s when I snapped to attention.
I joined my mom and said, “I’m sorry, what was that?”
She looked at me and said, “Is this your child?”
I said, “Yes, he is.”
She then gets a sympathetic look on her face, PLACES HER HAND ON MY ARM (this is a freaking stranger so, you know, don’t touch me, lady), and tells me, “Honey, you cannot bring this child out. He ruined 50 people’s lunch today. You have to control him or leave him home. It’s unfair.”
I was shocked. Mortified. Furious. Incensed. Hurt.
I think I mumbled out, “What? Are you serious?”
She continued, “Honey, I’m sure you didn’t intend it but he ruined our lunch. He’s just not equipped to be in a public place like this.”
I sputtered, “Th-this is a DELI. This isn’t some nice restaurant with table cloths and…”
I trail off and my mom intervenes and says, “Ok! Thank you. Goodbye.”
But I’m feeling stifled and held back. I’m unsure how to address this. I feel my face get hot and tears stinging and I’m looking around and realizing I hadn’t noticed anything or anyone looking at us. I was just living in the moment with my kid and my family. I wasn’t aware that he might be causing issues.
And I felt crippling shame. Gut-wrenching awful shame.
At that moment I was both angry as hell at this woman and deeply ashamed at my parenting skills. Why was this so easy for others and just didn’t come naturally to me at all! What a horrible person I was to not notice my son was disrupting people. And what a wretched woman to come POINT THAT OUT TO ME and shame me as a mother.
I was chock full of emotions and I had nowhere to put it.
So I did 100% the wrong things:
-I stopped taking him to busy restaurants.
-I would immediately remove him from a place if he started verbally stimming (even though I didn’t know what it was and why it was happening) and apologize profusely for his behavior.
-I started getting frustrated with Jackson and telling him to stop this behavior (and not giving him anything else to DO).
It was messy.
Once we got the diagnosis and I learned about stimming and I learned that I was, essentially, asking him to stop something but not helping him REPLACE the stimming behavior with something more appropriate, thereby creating even MORE anxiety for him, I felt even more ashamed.
My poor kiddo.
I should have stood up for him more often. I should have advocated for his rights and who he is. Granted I didn’t know his diagnosis, but I still should not have let that woman say such shaming things to me about my kid (and my parenting skills).
That was, by far, the most awful run-in we’ve had. Though there have been others. Here’s a quick sampling:
- The Candy Store Clerk: we wheeled Jackson in with his stroller and he started to loudly stim, so Jon took him out of the store to wait for me. I begin looking at the boxes of chocolates. I am standing next to the cashier counter and the cashier says to a customer, "I don't know why they bring little kids in here while we are busy. All they ever do is scream."
It takes me a second to register what she's talking about.
I get indignant.
I think to myself, "You have no idea how hard it is to get things done with a toddler. Especially at a crowded mall during the holidays."
Then it hits me.
She's talking about *MY* kid.
I look at her.
She's rolling her eyes and laughing with the customer.
I take about a 3 second pause. Then I put the nice box of chocolates down and walk out.
- The Mariano’s Cashier:
Jon is paying for groceries. Jackson is in the cart.
Cashier: (noticing Jackson’s hand stims) “Is he playing the guitar?”
Jon: (matter of factly) “No, he’s autistic. He’s stimming.”
Cashier: “You should get him a guitar!”
- Office Max Cashier:
I have to buy printer ink. It’s back-to-school so there are a lot of folks in our local Office Max. Fine. Cool. Jackson does not do well in stores without being in a cart.
There are no carts.
I chance it with him since I know exactly what I need and where to get it.
Success! Get the printer ink and book it towards the checkout.
There is one long line and only two cashiers. I can see this is going to take some time. I’m nervous because Jackson without containment is a recipe for disaster. He is known to elope (run away) as a game and dart through a store (or out into the parking lot, lord help me!) just for fun. He doesn’t understand there are dangerous consequences.
I looked once more and saw one cart in the corral. I had to leave the line to grab it but I knew it would be worth it.
So I jumped out of the line, put my kid in the cart, tossed the printer ink in the cart basket and pulled us back into the long line (now even longer since we were at the back).
I entertained Jackson by singing songs with him and having him label and point out objects. I tried to keep him from getting too bored while we slogged through this slooooow line.
Finally we were at the front of the line.
The cashier further from me kept looking over at us. He said something to the woman he was checking out and she looked over at us too. I was confused but I didn’t say anything.
She finished and he waved us over.
Me: “Hi. How’s it going.”
Cashier: (eye roll) “Uh, I’m tired.”
Me: (looking around) “I bet. It’s busy.”
Cashier: (eyes wide, in a loud voice) “You needed a cart for one item!?”
I was totally taken aback.
Cashier: “I mean, this is back to school I figured if you grabbed a cart you’d have more than just printer ink. You could have carried that in your hand.”
Me: (taking a deep breath and in a measured tone) “I needed a place to put my kid. He needed to sit down.”
Cashier: “Oh. I mean, I guess that makes sense.”
I get it. I get it. It looks like privilege. It looks like I am not aware of other’s needs. Trust me. I am.
My kid is technically too big to ride in the carts at the grocery store. And I’m short so getting him in the cart is a feat. (Jon is tall so it’s not as difficult for him).
There are carts that are for multiple kids. They usually are those carts with the plastic car attachment.
I never use those. Though that would be much easier on all of us.
Because a mom once complained that she saw a mom with only one child in that cart and she has 2 kids and there’s nowhere for 2 kids to ride in a regular cart. So this was a selfish mom who doesn’t think about others.
I don’t want to be that mom.
But, honestly? NONE of these people walk in my shoes. Just as I, don’t walk in theirs.
Maybe the Mariano’s cashier thought it would help to get him a guitar since he naturally moves his hands like that.
Maybe the Candy Clerk was just trying to gain rapport with her customer at the desk.
Maybe the Office Max cashier was just over it and tired of getting yelled at for no carts available.
Maybe the Bagel Lady never sees her grandkids because she is so hyper obsessed with things being perfect all the time she lives in her own personal prison.
Maybe ALLLL of these things.
But, you know what? Maybe NONE of these things, too.
And just the fact that I took the time to consider alternatives to their actions/comments/attitudes, I am going to assume the same.
Judgey mom with the two kids who doesn’t think I deserve the car cart?
Bring it on.
I’ll attempt to explain but, in the end, I will absolutely go toe-to-toe to defend my actions for my kid’s safety and my choices.
Because I am no longer embarrassed or ashamed by my kid. He’s working his ass off. And so am I. And if you want to comment or judge me, expect a smile with a very pointed response.
Sure, there are some battles not worth fighting. But my kid deserves to see me stand up for him when he is being misunderstood, mocked, or mistreated. I will model standing up for him until he can do it for himself. And then, I’ll probably continue to do it.
Because being autistic is nothing to be ashamed of.
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