It is Not About What She Doesn’t Want to Do.

It is about what she wants to do. The experts always say that “overwhelming sensory input” (over-stimulation) is the problem that leads to tantrums and meltdowns on outings. But for us, Beth’s extreme attraction to certain sensory input (which I think of now as part of her host of stims*) are the bigger problem, because her stims out-compete the activities that I want her to enjoy during an outing.

It is a simple idea, that what she enjoys is not what I enjoy and that her fascinations are beyond my comprehension, but it is hard to remember since I do not experience the world the same way that she does. The idea just kept slipping from my mind and it was replaced with me constantly saying to myself “Why won’t she just…” in frustration. But we are at a point now that outings are often peaceful and without “issues” thanks to mutual understanding and compromise. And maybe mostly because I finally accept and respect her wonder of car rides, motion, patterns, and sounds.

It’s the Car Ride Stupid

Here is Beth, on her way to an outing:

When I look at this video I wonder why it took me so long to accept that a big problem with community outings is they are competing with her beloved car ride, which is a combined auditory stim (hearing the music, often sames songs repeated) and visual stim (seeing the things outside the car fly by). Why the hell would she ever care about the outing when she could have so much more fun going back in the car?! Now that we understand each other, and we have some back and forth communication, this is how an outing often goes:

  • Beth doesn’t want to get out of the car. I have prepped her for the outing before we left the house and on the ride there. I say, “I know that you want to stay in the car. But first <insert restaurant, store, or activity>, then we will ride in the car again,” She gets out without much protest, partially because I validated her desire to stay in the car and she understands my validation, partially because she has learned that sometimes she has to do what she doesn’t want to do, and partially because she is changing her interests and is learning to enjoy certain aspects of outings. Also, maybe the draw of riding in the car and listening to music has gone down just enough from a sensory aspect that she is able to accept doing other things.
  • Beth sometimes seems anxious at first on the outing and intermittently during an outing. I ask her what she wants. Sometimes she says to go back in the car, but I repeat that we will first do the outing, then the car. I ask her if she wants something else. She usually asks for an edible (food, a drink, ice to munch on, peppermint, etc.).
  • I always keep in mind now how much she loves riding in the car and listening to music, and I try to stay a reasonable amount of time (for Beth, not for me) and end on a high note. When I sense she is done with the outing, I ask if she is ready to leave. I might do one last negotiation to have her do a couple more things on the outing before we leave.

It took us years to get to this point, but we are in a good place now with going places. And when we do a series of back to back stores in a strip mall without her screaming, or when we stay 2+ hours somewhere without Beth getting desperate to go back in the car, I am still shocked. I look around during the outing and think, people, look at this, isn’t it amazing? But what is more amazing is no one seems to notice us at all.

Stims on Outings

I had a lot of trouble getting Beth to answer questions on outings and she would have great difficulty looking at what I wanted her to see. Then one day I simply starting playing a “What do you see?” game with her and her answers were, “the lights,” “the flag,” “the trees.” That opened my eyes to what was important to Beth.  So far, I have learned that Beth is attracted to repeated patterns (e.g. lines of lights, ceiling tiles, windows with subdivisions), movement (e.g. trees and flags moving outside that she can see through windows, moving and blinking lights on vending machines and video games), and a variety of sounds. She is not really overwhelmed by sensory input, she is just really attracted to certain sensory input (stims) and it is simply out-competing what I want to share with her. The “tell me what you see” game is a great starting point for having her take note of her surroundings. It gives me an opening to validate what she sees and likes, then I can take a turn and add to her thoughts or share with her my observations. Give and take, not take and give.

Another stim hurdle on outings is that Beth does a lot of running while looking straight down at the floor. She seems to have no idea where she is when she does this, but she rarely runs into things or people (anymore). Lots of therapists have taken a shot at describing the running and looking down at the floor behavior with labels like proprioception problems, pacing, over-stimulation, impaired self-regulation, or motor planning issues. One day I realized that watching the floor or the ground move under her feet was probably a lot like looking at things going by when she is riding in a car. Now I tell her to just stop running around sometimes and then tell her to look around. Look at the people, look at the things, and “tell me what you see.” And she does. Again, looking at the floor moving by was out-competing everything in the environment. Have you ever noticed the variety of patterns on the ground and floor and how unique they all are, and how interesting they are when you are running?  I never did either, until Beth opened my eyes.

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*A definition of stims: http://autism.wikia.com/wiki/Stimming

 

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5 thoughts on “It is Not About What She Doesn’t Want to Do.

  1. I found this fascinating, and so well thought out. My little guy doesn’t necessarily do this, but it such a refreshing reminder of how there are different ways that I can reach him, and the different way he sees the world.

    This definitely lights some inspiration under me.

    • grahamta says:

      Thanks for the comment! It is so hard to remember how different they might see things when we are just trying to get through and make goals and progress. I needed to make it more solid and remind myself of it…writing helps.

  2. Janet says:

    Love your perspective and reflections. Thanks for sharing. I think these thoughts will make all of us better parents, therapists and friends to our sensory craving kiddos

  3. Lisa says:

    This is excellent! Thank you so much for including a video too – I can see my Princess triplet in your Beth. It definitely gives me another perspective to see what might be going on for her. My challenge with anything on the autism journey is trying to figure out how to meet the needs and desires of all my children (2 neurotypical and 2 on spectrum). But then, I guess that’s no different than any mom, is it? Every mom of more than one has to balance the needs & desires of all the children, doing what is best for all, individually & collectively, to the best of her ability at all times. Thanks again for the quick look into your world, it helps me with mine.

  4. nani says:

    Very interesting . My son also likes running and looking at straight edges. He has decreased this stimming behavior significantly..I think when our children get bored or do not have a specific activity at hand they recur to stimming it seems normal and fun for them

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