Saturday, February 7, 2015

You're A Good Mama

I used to think love—deep, radical, boundless love—was a family thing. Maybe a close friend thing. But I was wrong.

I started to notice it after Baby Bee was born, before we had the ASD diagnosis. We had doctor appointments and specialist consults and hours of crying and screaming and not knowing what was “wrong.” We suddenly had people at our door with food. People coming to clean the kitchen and take out the trash. People running to the store to pick up prescriptions. People stopping by to offer a listening ear. We hardly knew most of them.

Fast forward a few months and we experienced the daily kindness of receptionists and support workers from private occupational therapy to public Early Intervention offices. Folks that worked hard to get us connected to services, said comforting things and never forgot to ask how we, the parents, were holding up.

Then there was the kind mama from our local Buy-Nothing group who responded to my desperate plea for an infant swing (for my 25 pound toddler) because our old one broke and Baby Bee doesn't sleep without it. (We've tested this theory.) That very day, she drove out to my house, with her own kids in tow, to drop off a replacement swing. On my porch. While I was at a doctor appointment with Baby Bee. I wasn't even home to thank her. I didn't know her.

Did I mention my town raised money to install a swing at our local park for kids and adults with disabilities? And what the community didn't raise, the local government covered? I felt the entire community’s support as they created a space my son and others would someday feel comfortable exploring.

I felt that deep love again when I met up for our first play-date with a new friend that just moved to town a few weeks back. “You’re a good mama,” she said as I was silently wondering if I’d done the right thing by bringing my son to someone’s house and awaiting his inevitable meltdown. She meant it.

We live in a small town where love abounds. I've come to expect a high level of support from neighbors, organizations, moms, and yes, even the local government. We’re incredibly lucky. 

Consequently, we’re nervous to venture beyond our community’s cocoon.

But yesterday, love showed up silently, in a city that’s not my own. We went to one of those big box stores to stock up on groceries (and thus reduce our need to venture out again anytime soon). The decision to bring Baby Bee grocery shopping is usually more out of necessity than true choice. We got out of the car.

“Cart. Cart. Cart."

I knew we were in for it. We approached the red shopping carts stacked up against the building. It was busy. People rushing. Cars pulling in and out. “Cart! Cart! Cart!” His chanting increased to a frantic level.

Deep breaths. “Alright Baby Bee, we’re going to put you in the cart so Mama can get groceries.” I held my breath waiting for what I knew was coming next. The screaming started; I was grateful we were outside. I wheeled us over to a less busy area, partly for him and mostly, for me.  Something happens when your child gets a diagnosis or acts differently than other kids. You start to pay more attention to what people say and do. You start to listen every time some stranger—who is still developing their own skill set of appropriate social commentary—demonstrates that they have room to grow.

And it’s always at the grocery store because it’s just about the only public place you bring your kid anyhow.

I whispered our next steps, hoping it would soothe him. “Now, I’ll buckle you up so you stay safe in the cart. Here’s the buckle. Click. Click”

“Cart. Cart. Cart. Ouch! Ouch! Ouch! Cart. Cart. Cart. LOUD! LOUD! LOUD!”

He was yelling now. “It IS loud, isn't it Baby Bee? I hear lots of people and cars and carts. Listen? Do you hear that?  Woosh, woosh.” I did my best imitation of the electric doors we had to enter sooner or later. “That’s the sound of the doors opening and shutting. In a moment we are going to go through those doors, and walk up and down the aisles to get the food we need.”

“LOUD! LOUD! LOUD!” and then suddenly, “Bike. Big. Bike. Bike. Bike. Bike.” I knew what he was thinking. Our local grocery store has red carts too—and full-sized bikes around the perimeter as decoration. I guess it’s a small town thing.

“ The bikes aren't at this store, Baby Bee.”

“BIKE! BIG BIKE! BIKE!” He was fixated. He’d spend the rest of our trip intermixing “Bike!” and “Loud!” and “Cart!” If that was all that happened we’d consider it a success.

But then someone bumped the cart. He was crying now, the full on meltdown crying that seems to have no end when you’re in the middle of it. Occasional bursts of “Loud!” and “Ouch!” came through with a fair number of “No! No! No!’s” thrown in for  good measure.

People were staring and avoiding in turn. Shaking their heads.  As a parent, you wonder if people will blame your parenting. Your genetics. Your decision to reproduce.

 Or the fact that you went back to work at two months postpartum instead of three.

I digress.

When I looked up, I saw her. A mom with a preschooler stood to the side watching. I whispered into Baby Bee’s ear to drown out the sensory chaos. She leaned in to hear what I was saying. She watched the way I pressed the sides of my hands on either side of his body to provide some deep pressure and used my body as a shield from the visual stimulation around us. Her daughter stood, watching us too.

Several minutes later, Baby Bee had calmed and picked up his “bike, bike, bike” chant again, which I took as a positive sign. I gathered my courage and faced the ever “wooshing” doors.

She was still there. Not staring. Not rudely prying into our difficult situation. But standing respectfully off to the side seemingly observing, educating herself, and maybe rehearsing the conversation she’d have with her daughter about how everyone has different challenges in life. Her look was compassionate and encouraging.

And then she caught my eye and smiled at me with a smile that conveyed it all:

“There’s more of us out here, you know. We’re here if you need us. If you've got too much going on, we’ll bring you dinner and clean your kitchen. And I noticed that your kiddo has a lot going on, are you doing okay yourself? We’ll drop the infant swing or whatever else on your porch, if you can’t pick it up. I don’t mind at all. Oh, and please, don’t worry, we already made a donation for accessible play structures at our park—your child is welcome any time he likes. Remember, you've got allies all over the place, not just at home.

And you know what else?”

 She nodded toward my little guy, chanting away, and smiled again.

“You’re a good mama.

A really good one.

I mean it.”

“Thanks, Mama,” I silently smiled back. “So are you.”


  1. Dear Mrs Bee
    Thank you for having the energy to share your story.
    I have lived it, and am just further on in the story.
    My πŸ’—is now almost 20. Same diagnose as your boy.
    Just now on a plane to China with his dad! A dream come true for him, one of his very special interests. I look forward to reading more. We live in the UK 😊

  2. @unknown, Thank you for going before us in this journey. I sometimes can't even think about 20 years from now, but I will always remember that others have done this before me. :) How exciting your son and your family--I hope his trip to China is everything he hopes for!

  3. He won't wear noise canceling headphones?

    1. I wish he would/could tolerate them! Having something on his head is just too much for him right now. We will keep trying though. I imagine it would help a ton!

  4. I do PCA work and we could never get the little guy (he's 15 now) to wear them either at first. We thought that we should "practice" with them when it was calm but he couldn't tolerate them on his head. However, we tried (out of desperation) in a noisy environment and he seemed to realize what the stupid things were good for and seemed to be able to make the trade off. They make some nicer ones now that aren't so heavy. Your son sound very smart. This boy I know sounds similar when he was little to your son. I don't know if that is helpful or annoying to hear. He still struggles with some things but the tantrums have lessened with age. He goes to regular grade level math (with a para) and passes state tests with flying colors. He is a bit too literal to always "get" the reading state tests but is a very good reader and reads (non-fiction) books for pleasure. He tells jokes and has relationships. He has started to be able to empathize. He goes to summer camp for a month each summer. He now takes anti-anxiety/OCD meds but may trial cannabis oil. ADHD meds made his behavior worse.

    1. @Anonymous: Thank you for sharing your experiences. I love hearing about other similar kids that are older and what they are doing now. Who knows what the future will look like for Baby Bee but I do have hope that it will be one where he finds his own joys and has the skills to get by in many situations. (And thank you for the tip about the headphones. We might try them again in a chaotic environment!!)


Have your own experience to share? We are all on some sort of journey, and we'd love to hear yours!