How learning about Maura’s issues helped me define my own

30 May

A few years ago, Josh and I went out all by ourselves, as a couple of grown ups. Being grown ups, we went to Yo Sushi! – a place at the local shopping centre that served up sushi on a conveyor belt. I won’t lie – I’m not a foodie and I think conveyor-belt sushi is fun.

They had a special running – all you could eat for an hour for twenty euro. The catch was that you had to finish every plate you took. No big deal –  I didn’t stray from the things I loved, and I could also share with Josh.

Near the end of our meal, the little chocolate mochi things went by. Mochi is a Japanese rice cake made out of glutinous rice pounded into a paste and molded into a shape – usually a little flattish-roundish shape. Miriam had gotten some the previous visit and declared it the best food ever. And it was chocolate. What could go wrong?

I bit into it and immediately regretted my decision. If I hadn’t been a grown woman, I would have spat it out and rubbed my tongue clean like a 4 year old, while going “Ew!”

But I was a grown woman. So instead, I whined while trying to chew the bite of mochi. My husband laughed as I was all “Ew! OMG! It’s like chewing snot! Oh God!” while several different expressions of horror crossed my face I’m sure.

“You really don’t like certain textures.” he said, before finishing off the mochi for me without any drama.

Yes, my husband laughed during my horrifying food moment (which was fine, I was laughing at myself as well), but he also validated something I’d tried explaining my whole life.

“I mean, if you can’t eat something chocolate because of texture, it’s definitely a real issue.”


I didn’t actually learn about sensory issues until I had Maura.

And then I had to learn all the different sensory issues. How some seek, some avoid, some just can’t handle, some live for sensory experience, some both seek and avoid.

Maura is more of a seeker. Her avoidance issues have been few but memorable. Like how Maura would eat anything you put on her high chair tray…except kiwi. She’d pick it up…then put it right back down. It wasn’t a taste thing, I just think she didn’t like the slimy feel.

Or Play-Doh. We were sitting in OT, Maura in the short high chair seat with tray, and the therapist put Play-Doh on the tray. Maura physically recoiled from it. The OT took it off the tray, Maura sat back up again. The OT brought it back out, Maura leaned as far away from it as possible. It was the weirdest thing. Maura did eventually get over her aversion with Play-Doh and did learn to like it (not through force, just repeated offering and us playing with it). But to this day, we’re not sure why she recoiled from it.

And tunnels. Maura hated tunnels. They were just a big NOPE for her. If you tried to put her in one, she’d scream bloody murder – which we found out the hard way at IKEA. The other three kids went through the tall tunnel entrance to the IKEA kids section, and we assumed Maura, as usual, would want to do the same.

We were so very wrong.

But for the most part, Maura loves to seek out sensory stuff. She loves her floofy duvet. She likes a certain brand of pj’s because of the material. She enjoys swings and bikes and anything that causes the wind to hit her face. She adores the water.

It’s been a learning curve for certain, but in learning about her sensory issues, I’ve discovered mine.

For as long as I could remember, I was labeled the “picky eater” – so much so, I embraced that term for myself as well. But as I learned about Maura’s issues, I started looking at my own picky eating.

First on the list – oatmeal. I loathe oatmeal. Growing up, it was the main breakfast offering, but I wouldn’t eat it. When forced to put a spoonful in my mouth, I’d gag – and then be called overdramatic – which…okay…I was a dramatic kid…but the gagging was real. That sticky chunky texture just makes me want to hurl.

The weird thing was – I liked the smell of it. I loved oatmeal raisin cookies. But having to eat it was torture. I would have rather gone hungry.

And then there were mushrooms – my mom’s favorite. She loves mushrooms. I loathe them. I think having to choose between oatmeal and mushrooms, I’d choose neither. Mushrooms are so slimy and limp and gross and rubbery. I just can’t. At this point, the thought of a mushroom in something ruins the whole dish for me. That’s how much it’s taken over, the aversion.

Then there’s weird quirks, like creamy dressings and sauces. I eat pudding with the smallest spoon I own – big globs just aren’t manageable. Shredded chicken, as it turns out, is not my favorite thing either. I keep trying to like it then remember I don’t.

And mochi is definitely on my “Oh God no!” list now.

But I also learned it wasn’t just food. Any clothing that feels too snug starts to mess with my head until I have to change. Wind blowing hair into my face is like fingernails on a chalkboard. Go figure, I can handle fingernails on a chalkboard, but the sound of chalk scraping together? ugh.

I can’t handle an overload of noise. If you’ve got the tv on, play another video on your computer, and someone else decides to play music while you try to talk to me, you may not get a full answer from me. My brain is trying to pick up ALL the words everywhere, and it’s too much. It’s weird, because I can also tune out noises. Kids screaming? I can tune out. Baby crying but safe and being attended to? I can tune out. Neighbor using his drills for 7 hours straight? Well, then I have to kill someone.

Don’t get me started on chewing. Yeah, you’re with me on that one. <high five>

My husband likes blankets that are heavy. I feel like I’m getting crushed under them. Yet Maura leaning on me for 14 hours of the day I’ve gotten used to. Even if she’s actually smothering me.

No, it doesn’t make sense, but it is all sensory.

The good news is, I really understand Maura’s issues and quirks. So when she fusses about her one shoe, I know to check to make sure the sock is on right (those toe seams are annoying) and that it’s not tied too tight, without her having to explain why her shoe is bothering her. When she puts something in her mouth and takes it right back out? I’m ready to take the offensive item away. When she needs the wind in her face and a loud bass beat – well, she can go for a drive with Dad in the Jeep. But I do let her have her music “too loud” in my car.

Because while I don’t understand all of Maura’s issues, I get the sensory ones. I get that they don’t make sense. My husband gets that they don’t make sense.

That chocolate mochi made it all so clear.




6 Responses to “How learning about Maura’s issues helped me define my own”

  1. CF6 May 30, 2017 at 1:30 pm #

    Oh my gosh… I can so identify with the sensory needs/avoidance, and until you put it into words I just figured everyone had things they loved or couldn’t stand. Those flat metal signs (and pitchers and everything…apparently very in style) that are supposed to look like farmhouse chic? Just the sight of them, without even touching them, makes my nerves want to revolt. Macaroni and cheese? I can only eat the boxed type AND I can’t chew the noodles…can only straight-up swallow them.

    Isn’t it weirdly wonderful, somehow, the way we learn ourselves when we learn our children so well? With one daughter, I learned that my sensory and speech issues as a kid just might be genetic AND I learned how to manage them. With another, I learned about emotional health and anxiety and depression – while helping her, I learned about myself. Thank you for sharing Maura.

  2. Angel M Brookins May 30, 2017 at 2:01 pm #

    OMG, Phoebe, I am right with you on the sensory things. I have a nephew that has Asperger’s, and he has a thing about the textures of absolutely everything. I wasn’t until I was caring for him that I realized that I have my own list of texture do’s and don’t’s … for example, I love any material that is fluffy, but can’t stand the feel of denim on my skin. Thank you for sharing with us your journey.

  3. Eileen May 31, 2017 at 6:26 am #

    Oh man. This. I soooo get it. And I have been called over dramatic because of the uncontrollable reaction to certain things. I have said many times I wonder who has more sensory issues, Becca or I.

  4. TakingItAStepAtATime May 31, 2017 at 4:21 pm #

    I am sooooo with you on a lot of these points but the chewing….. I feel as if I will jump right out of my skin!

  5. Renee Anne May 31, 2017 at 9:42 pm #

    I think everyone has some sort of sensory issue. If you can fix or otherwise avoid said annoyance, everyone is happier. I can’t stand having hair in my face (meaning leaving my hair down). I’m not a fan of my wispy hairs but I’m used to them…leave my hair down and my hair blows around? Noooope! My blanket has to be a certain way at night (the “public” side needs to stay up because it’s scratchy and I hates it). Little Man has a similar thing with his blanket but he likes his “public side” down because it’s softer.

  6. reallifeautism September 11, 2017 at 8:47 pm #

    YES! I recently wrote something along the same lines. I was in a loud, overcrowded, flashy place trying to play trivia (the team is comprised of me (an autism mom), 2 autism dads, and our kids spec ed teacher. My head was going to burst. The more intense it became, the poorer we played. We talked about how this must be for our kids all. day. every. day. No wonder there are outbursts and meltdowns and emotional rollercoasters!

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