Sensory issues – they’re not just for Maura!

24 Nov

Being Maura’s mom has meant a lot of self-discovery for me. Like, oh wow, I can totally be confrontational when someone’s giving Maura the short end of the stick. Or how hey, I can be quite good in a stressful situation, despite my anxiety.

Or – hey! Maybe I wasn’t a magnificently picky eater…tell me more about sensory issues!

Now Maura tends to be a sensory seeker – as in, she loves to touch stuff. As a preschooler, she enjoyed going to the fabric store because she could pet all the different fabrics. And I realized…I do that too.  Of course, she was also the only kid her one therapist ever saw physically recoil from Play-doh. Seriously. The therapist placed the brightly colored non-toxic ball of doh on the tray, and Maura leaned so far back away from it she nearly toppled the chair over.

It was a bit ridiculous, and we laughed. Because what kid hates Play-doh?

My kid.

Then I noticed something else – while Maura would eat just about any kind of food out there, including dog food, she refused to eat kiwi. She wouldn’t touch it after the first time going to pick it up.

“I wonder if it’s because it’s a little slimy?” I asked the therapist.

That’s when I started learning about textures and sensory seekers versus sensory avoiders.

It seems the common sensory issue are those of avoidance – the kid who won’t eat food that touches other food, the kid who feels like a clothing tag is akin to a razor blade, the kid who has to have socks on just right or else you might as well chop off his feet because it’s less torture than a misaligned sock.

These are things I was only vaguely familiar with. Mainly because I always made sure my socks were put on perfectly aligned, and I never could manage turtlenecks. Actually, most people in my family hate turtlenecks. I also can’t wear chokers, or necklaces that end at the edge of my neck, because otherwise, well, it’s all I can feel, slowly choking the life out of me while cutting off my jugular.

Not that I have an overactive imagination or anything.

I also hate heavy blankets, have to have my feet covered at night, can’t wear anything too snug without going crazy, and so on and so forth.

We won’t discuss my hatred of oatmeal, even though I like the smell of it and love oatmeal cookies. Or creamy dressings. Forget mushrooms.

No, none of that meant anything to me except I was weird and a picky eater.

Then Maura recoiled at Play-doh and refused kiwi.

And I learned more about sensory issues.

And I realized that maybe…maybe I had some too.

I still tried to write it off as my own quirkiness. That my food aversions were due to picky eating. Then one day, Josh and I went to a sushi place, and they had those little blobs of chocolate things. I wasn’t sure what they were, except they were chocolate and last time I got sushi, my daughter Miriam got the little chocolate blob things and proclaimed them the best thing she’d ever eaten while humming a happy tune.

Surely they were delightful!

Surely they were actually a form of hell that I placed inside my mouth. Gooey slimy hell disguised as chocolate.

Satan's dessert

Satan’s dessert

“OMG it’s awful!” I cried while making a ridiculous “EW!” face. I know it was ridiculous because my dear husband started laughing at me.

“Oh God!” I cried some more, trying to chew the gelatinous blob of badly textured chocolate quickly. “It’s like snot! I’m eating chocolate snot!”

What I really wanted to do was spit it out and rub my tongue with a napkin while making icky noises…but I also like to pretend I’m good at being an adult. So I found a way to swallow the offensive chocolate thing, and then gulped water down as my husband kept laughing.

And that’s when I embraced the fact that I have texture issues when it comes to food. Because I love chocolate. I love chocolate in any form, or so I thought. But not in soft gelatinous mochi snot form.

Maura did overcome her fear of Play-doh. But she also still won’t touch kiwi. I’m okay with that. And when she wants to pet all the fabrics, I’m right there behind her, petting the fabrics as well, with our socks aligned just right, and our shoes tied not too tightly.

No one is on fire right now

16 Nov

As I stand in the kitchen, the teen boy glides by on his sister’s scooter. The teen girl clomps by on roller skates, in time for her brother to playfully clothesline her, dropping her to the floor.

“I’m on the ground again.” she announces as the tiny dog skitters by in a tiny Chewbacca costume. Maura’s being the calm one, sitting on the couch, listening to U2’s “Songs of Innocence” on her iPod, her head bopping in time to the music.

Tiny dog doesn't care to be Chewbacca btw

Tiny dog doesn’t care to be Chewbacca btw

This is my life. My crazy absurd ridiculous life.

“You guys have such a great sense of humor.” we’ve been told. Usually preceded or followed by “despite all your challenges”.

What can I say? It’s a coping skill I’ve developed my entire life and have passed down to my kids. Life can be ridiculous and stupid, but it can be ridiculous and great as well. I mean, when one of your hilarious family tales is the time you all sat on the side of the very narrow road on the west coast of Ireland for three hours because someone (me) hit a rock and ripped apart both tires on one side? Oh yeah, good times. We had Twizzlers. It didn’t rain on us. We had a nice view of the Aran Islands. It wasn’t all bad.

I think this coping skill is either genetic, or learned through my grandfather. Probably the latter. The man would tell the funniest stories of WWII, never letting us kids know the horrors he saw, just the funny or the human sides of things, and the good of every day people. After the war he became a cop, and there were more hilarious tales from his police time. Tales that honestly, we kids probably shouldn’t have repeated – like the one where the old lady died on the toilet, and my grandfather and his partner had to remove the body from the apartment but weren’t allowed to bend the body flat, so they moved the body onto a kitchen chair, covered it with a sheet and took her down the elevator…only to have it stop on a floor, and another resident eyed them leaning on the sheet covered corpse chair, and saying “I’ll wait.”

Seriously people, this is how I grew up, listening to stories like that and more. And it wasn’t just Grandpa’s side – Grandma’s parents were undertakers, so there were stories of corpses sitting up in coffins, roller skating in the (empty) morgue on hot days, and my favorite – how Grandma as a teen smashed her finger in a door, and the nail turned black and fell off, so Grandma then kept the blackened shriveled up nail in  her coin purse to every so often bring out and scare her friends with.

Yes, humor is our coping skill.

It was never “Suck it up kid, people have it worse, how dare you complain!”. It was more “Okay, this is dumb, but hey, at least we’re not on fire, so that’s something!”

And that’s kind of how I live my life.

Yes, Maura has special needs. She is cognitively disabled. She will be dependent on people her entire life. But hey, she’s actually fun most of the time, and she’s actually quite healthy, so you know, it’s not that bad.

Sure, I have anxiety. Sometimes, I find it hard to drive in the rain (which really sucks considering I live in the Pacific North Wet, pun intended) but at least I live in a time where there’s medication for such things, so that most days, I can drive in the rain! And sleep at night! And think about my daughter’s future without a panic attack! Hooray for happy pills!

Yeah, our lifestyle is a bit of a crazy one, but hey, at this moment everyone seems happy enough, and no one is on fire this week, so we’re doing good!

Maybe it’s a form of denial – I don’t think so. I’m not denying that life can be hard, and full of hard work. I make it a point to acknowledge some of the suckier aspects, accept them, and then put them in a corner. And then I find something to smile about. Because I know that it could always be worse. I know that in many ways, we’re lucky. I know that sometimes, you have to find the funny in a situation in order to survive it. Remember the good times and know there will always be more. Because in this circus of a family, we will definitely have more fun times, even if we don’t mean to.






Anxiety Scenario #928 – Maura and I are going to end up in our own version of “Grey Gardens”

13 Nov I still find the time to annoy the tiny one.

I have anxiety and an overactive imagination. Which means the stuff I worry about? Well, it gets embellished to the nth degree.

Case in point – the horrible daydream I had of how Maura and I could end up in our own version of “Grey Gardens”. You know, “Grey Gardens”, the 1970’s documentary about Jackie Kennedy Onassis’s aunt and cousin, who lived in a dilapidated old grand home in one of the Hamptons. Mother and daughter were both…eccentric…and had gone from being very wealthy to very not. They collected cats and trash, and ended up catching the eye of documentary film makers, who proceeded to capture these two very individuals on film. They sort of lived in their own world – bickering, feeding cats, ignoring the heaps of trash in rooms below, and dreaming of stage careers that might have been.

And you’re wondering, “How did we get to talking about two formerly wealthy women living in squalor in the Hamptons?”

Follow my lead –

Everyone else was gone for the evening, and it was just Maura and me at home. As we watched Spongebob for the 397th time, Maura was on her scooter, going back and forth down the hallway as I had a one sided conversation with the tiny dog.

And it hit me.

I needed to get out more.

And then it also hit me – this is what life would be like if it was just the two of us. Just Maura and myself, hanging out evening after evening, day after day, watching cartoons and talking to dogs. And “Grey Gardens” flashed through my head.

Now, we won’t take in a bunch of feral cats – because I’m certain that cats are inherently evil and they would try to kill us in our sleep. But we might have a herd of small ridiculous dogs, which, in a way, would be worse. Because then I’d be going around making little sweaters for Princess Fluffybutt and her litter of offspring as Sir Barksalot and Lady Muffins hide in the sea of dolls Maura has lined up all over the room. I will have also given up on all fashion, so would probably be wearing one of those wearable sleeping bags, because I’ll always be cold, but I’ll need my arms free to knit tiny sweaters for ridiculous dogs. Maura will be in her My Little Pony costume. We will be the house the pizza delivery people all talk about. We will become Urban Legends.

And then I blinked and realized my overactive imagination had led me down yet another path and I hurried back to reality.

Ten to one, Maura and I won’t become a Grey Gardens scenario.


I think.

I still find the time to annoy the tiny one.

Tiny one feels our odds are higher



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