Posted in Autism, Behavior/ ABA

Blog #27~ Everything in its Place

Blog #27~ Everything in its Place

Confession…… I admit that I like things orderly in my home.  When the piles of papers start stacking up to avalanche levels it makes me antsy.  I have a few quirks that might make me borderline OCD.  The labels of every can in the pantry are turned perfectly straight and all of the towels have to hang neatly on the rack.   I can’t stand it when someone moves a piece of furniture and creates a new divot in the carpet. Yes, I have a thing about the carpet marks (more on that and the need to feel in control in Blog #1.) Okay maybe the CD collection is in alphabetical order (hey, it’s easier to find them that way.) And don’t even get me started on the autumn leaves that keep trickling into the house every time someone opens the door.

I don’t consider myself a neat freak.  I have no problem letting the folded laundry sit in the basket for several days.  I have to be in the mood to put it away or someone is about to run out of underwear or socks. 🙂  So I suppose my son, Nick comes by some of these traits naturally.  Though often I wonder how much of that is from my gene pool or autism.

Last week the monthly cleaning people were here and inevitably I have to readjust the angles of all the picture frames and knick-knacks to my liking.  Nick follows suit when he gets home from school in his bedroom.

The cleaning people’s arrangement…..

Nick’s arrangement…..

It’s not just when the house gets cleaned.  Recently I bought a new rug for the bathroom. Sometimes Nick’s “aim” is a bit off and I wanted to protect the wood floor.

Nick will have nothing to do with that rug.  There has never been a rug in the before.  Every single time he goes in there he takes it and throws it down in the laundry room.

“Hey mom, this is what I think of the new rug”……

Where I put Nick’s backpack….

Nick says “No way it goes here”……

Sometimes I try to shake things a bit just to get him to loosen up and stop being so rigid.  For instance yesterday, I couldn’t face eating Taco Bell for lunch.  I decided to make a visual to show a change in the schedule.  I really wanted a fresh sandwich and an iced green tea at Panera bread.  Okay maybe I wanted a pumpkin cookie too 🙂

The cookie was not as good as I thought it would be. I took a few bites and threw the rest away.

I prepped him by looking over the visual a few times before we went to the mall.  We came into a different door on the end of the mall where Panera is located.  I pointed saying, “First getting Mom a sandwich, then Taco Bell- yay!”

By the way why is the Board maker icon for the mall always pink?

Nick and I entered Panera Bread.  He was hesitant but tolerant as I placed my order.  We proceeded through of the restaurant.  That’s when he began to dig his heels in. I pointed to the visual task strip and reviewed the plan.  He trudged as I lead him down to the counter full of heaving bowls of hot soup in bread bowls.  Nick was noticeably agitated. His hand took ahold of my left jaw and clung on. I pulled myself into him to release the grasp while acting as if nothing was wrong. “Nick it’s okay, Mom’s sandwich, then Taco Bell.”  He pinched his cheeks really hard and let out a few expletives. I shifted him away from the counter hugging him and praying they could make that sandwich as fast as Jimmy Johns.

It was no use. Nick was beyond reason as he clawed at my cheek gouging into my skin.  I could feel a sting as I pulled him closer to me trying to give him a deep pressure hug. It was a last ditch effort to calm him. Finally the order was ready and I said, “Nick look, Mom’s sandwich….all done, Taco Bell.”  While I made no eye contact, I could feel the patrons glaring at us as we walked out. Outside in the atrium I grabbed my sore jaw that had been sucker punched.  I took my hand away I saw that it was covered in blood.  No wonder they seemed to be staring more than usual.

There it is a snapshot of autism.  Not a pretty picture is it?

In a perfect universe Nick’s world would run the way he sees fit and everything would be in its rightful place. He needs to feel in control and the order and sameness gives him that.  But that’s not how the world works.  I have to prepare him for things to be different.  Yesterday didn’t work out so well.  He perceived the walk into the bowels of Panera to mean that we were staying there. So I will have to go back to the drawing board and rethink how I want to approach it next time…..or just eat Taco Bell 🙂  It’s a complex puzzle and sometimes the pieces just don’t fit.

That’s what is in my noggin. Cheers to a smooth week ahead.  Until next Monday may all of your *knick-knacks stay in a row to your liking!

~Teresa

*Knick-knack According to the Phrase Finder means a dainty little trinket or ornament.  Knick doesn’t mean anything in itself in this term; it is merely a reduplication of knack. We now use knack as meaning ‘a dexterous facility’, but in the 16th century it was used to mean ‘an ingenious contrivance; a toy or trinket’, and that’s the sense that was used in knick-knack.

Shakespeare also used it in The Taming of the Shrew, 1596~ “Why ’tis a cockle or a walnut-shell, a knacke, a toy, a tricke, a baby’s cap: Away

Author:

Teresa is the Author of "A New Course: A Mother's Journey Navigating Down Syndrome and Autism" and the mother of two boys. Her youngest son, Nick is 29 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Teresa's passion is helping others understand and navigate co-occurring Down syndrome and autism. She is a DS-ASD consultant, advocate, speaker, and author. Follow Nick's world on Facebook, Instagram & Pinterest @Down Syndrome With A Slice of Autism and on Twitter @tjunnerstall. For more information and media links, visit https://www.teresaunnerstall.com

6 thoughts on “Blog #27~ Everything in its Place

  1. Perseverate comes to mind! Good try at Panera, I say you keep on trying it…. and he will soon learn it’s an okay place to visit! Is there anything he would eat there?

  2. TJ Really engaging story. I could feel the pain in my cheek at the end. I wanted to be thee to pick up your Panera order and. Ring it to Taco bell for you. I am any thing but a neat freak, I seem to thrive in chaos;)

    Sent from my iPhone

  3. Just read your blog for the first time.. I want photos of the blood streaked cheek! Lol. A day in your life is like looking in the mirror!! Thanks for shedding light on our kids/our world for all to see.!!

    I had a dream last night you and I were leaving for a girls trip in the bahamas next week!! Was that forshadowing or fantasy??? Lol

    Lets do it!!! You are my hero 🙂

    1. Shelly, I think there are many of these stories that echo your life with Kenny. Our bizzarro world of the dual diagnosis. I like your dream and wish that was foreshadowing (at least not next week but someday that sounds like heaven.) Hope to catch up with you soon, maybe at the NADS Retreat? All the best my friend xoxo 🙂

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