A Letter to My Body

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A few weeks ago, my client, Ethan, came in for his session very upset and agitated.  We began our lesson and tried working through his irritation to no avail. Ethan was becoming more and more distraught. So, we took a short detour from our lesson to discuss the issue. I am a big stickler for doing lessons in letterboard sessions – it is part of the process – engaging the brain and then body in cognitive lessons. However, sometimes the situation calls for a change in plan and this was one of those days!

Elizabeth:  Let’s break for a moment Ethan. I can see you are really upset. What’s going on?

Ethan:  I AM UPSET BECAUSE I AM NOT KIDDING AROUND AND I CAN NOT HELP IT WHEN MY BODY ACTS OUT.

Elizabeth: Let’s try writing a letter to your body.

DEAR BODY,

I DO NOT LIKE YOUR BEHAVIOR TODAY!  YOU ARE MAKING ME DO THINGS I DO NOT WANT TO DO AT ALL! DO NOT MAKE ME LOOK BAD ALL THE TIME.  I DO NOT WANT PEOPLE THINKING I BEHAVE LIKE THIS ON PURPOSE.  JUST LIKE A PUPPET MY BODY MAKES ME DO STUPID THINGS ALL THE TIME.  I WOULD NOT MAKE SUCH STUPID CHOICES IF I WERE IN CHARGE OF MY BODY.  NO ONE CAN UNDERSTAND HOW PAINFUL THIS IS TO ME.  I HATE NOT BEING IN CONTROL OF MYSELF.  IT SUCKS SO MUCH. ONE DAY I AM LIKE A WELL BEHAVED KID AND THEN I AM LIKE SOME SORT OF CRAZY PERSON.  I GUESS THIS IS WHY PEOPLE DOUBT THAT I AM SMART.  I REALLY CAN’T BLAME THEM. I WOULD PROBABLY THINK THE SAME THING IF I SAW SOMEONE ACTING LIKE I DO SOMETIMES.  IT IS A BUMMER TO BE STUCK IN THIS BODY THAT MAKES ME LOOK STUPID WHEN I AM ACTUALLY REALLY SMART.  THE END.

Elizabeth: Can I ask you an additional question?

Ethan:  YES

Elizabeth:  How do you want people to treat you when your body is going crazy?

Ethan: JUST IGNORE MY BODY AND TALK TO ME LIKE YOU WOULD IF MY BODY WAS NOT FREAKING OUT.  CALLING ATTENTION TO IT ONLY MAKES IT LAST LONGER.  KNOW TIME WILL MAKE IT BETTER.  I AM ALWAYS TRYING TO CONTROL MYSELF.  BE PATIENT WITH ME.

Elizabeth: Can I share this on my blog? I think other kids have this same issue and it may help them.

Ethan:  SO GREAT IF MY WORDS CAN HELP OTHERS.

I am so grateful to Ethan and his family for letting me share his letter to his body and his other thoughts with you. Motor control is HUGE issue for our clients.  I believe we need to be very careful about what we label as “behavior” (this word is rapidly becoming my least favorite) and what is truly a lack of motor control or the manifestation of another underlying issue.

Ethan’s irritation continued over subsequent sessions. His mom and caregiver reported that he has been similarly bothered at home. The cause of Ethan’s increased discomfort and motor activity and lack of body control started to come out during a creative writing about the scientific method. (Great information is often revealed “sideways” in cognitive lessons). Turns out that Ethan is very anxious about starting middle school in the next couple of weeks and “that is why my body is acting out.” Huh….imagine that! Not an intentional “behavior” but a very understandable anxiety about embarking on a new, exciting but completely unknown educational experience! How very like any other kid getting ready to head off to middle school! ~Elizabeth

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11 thoughts on “A Letter to My Body

  1. Could you please provide your contact info? I have some questions about RPM from an SLP perspective, and am unable to locate any others who practice RPM.

  2. Reblogged this on Restless Hands and commented:
    This is a really valuable reminder. It’s equally important to remember that 1) “behavior” isn’t always voluntary and 2) even involuntary actions have reasons and causes that need to be understood and respected.

  3. Thank you so much for sharing this. Even neurotypical people lose control of their actions at times, especially as children. It’s crucial that people who work with autistic children understand this.

    This also relates somewhat to an experience that I had with one of my clients the other day (I’m a respite care worker). She got upset and threw food on the floor and at me, then ran upstairs, slammed the door to her room, and lay down on her bed. I spent a while trying to determine if this qualified as a “meltdown” or a “tantrum,” and wasn’t satisfied with calling it either.

    Eventually I got my head around the fact that she simply lost her temper. I think it was in response to something that would ordinarily have been only a moderate annoyance (I didn’t let her watch a video while eating lunch). I’m not entirely sure why she had such an unusually vehement reaction– maybe a combination of factors including something as simple as just feeling cranky (she is a pre-teen girl, after all– mood swings aren’t out of the question!!).

    I’m a little embarrassed at myself for thinking of her actions at first in such “behavioral therapy” terms. (What caused her behavior? What’s an appropriate punishment? How do I prevent the same thing in the future?). It isn’t always that simple, and the main reason for an action isn’t always something that happened right before it.

    Everyone has bad days when they don’t feel, or act, “like themselves.” It must be far more frustrating to deal with these days in conjunction with diminished motor/impulse control and/or the inability to explain how one is feeling or why.

    • Your share is beautiful and highlights that we all have moments where we lack control! We all have so much learning (and unlearning to do!) – thank you reminding us that even when we have forget….we can reset our perspective and look at the situation with a new lens!

  4. Thank you Ethan for sharing your story…I LOVE hearing from kids…i love adult perspective too but since my Ethan is only 4 1/2 he goes through much different things than an adult so kids like you, and Emma, and Henry, and Ido and all the rest are an even bigger help. I cant wait until my E can write too. He has a talker (AAC) and can spell some, but still prefers to drag us around the house…I dont blame him I guess I imagine its much easier. There are no RPM therapists in my area, and I’m a terrible teacher so maybe when he gets old enough we can go see Soma since she is only a state away 🙂 and she can teach us both. Keep on writing even though it is hard work! All the writing of autistic ppl helps me understand and be a better parent to E 🙂

    • I am so glad the words of these thoughtful and smart kids encourage you! You are already a great teacher and example for you son! The spelling/writing is only one part (the expressive side) of RPM – the other part is receptive….you can work on this part with your Ethan now. Talk to him constantly – PRESUME COMPETENCE – assume that he understands everything you say to him. Point things out to him, explain what you are doing, how things work….every day events (cooking, the weather, a walk outside, observations during traffic) can be a learning opportunity! Read constantly – if he is in the room – assume that he is understanding what you are saying! We cannot talk about things that we don’t understand – so the more you teach him naturally during the course of your day, the more Ethan will have to talk about when he does start to spell through RPM! You are a much better teacher than you can imagine – you have all the tools you need…love for your son and a belief that all things are possible! ~Elizabeth

      • I consider us both very lucky i stumbled on Emma when he was only 2. And through her, the autistic community. My biggest fail is really in presuming competence…because I presume the competence of a 4 yo when daily im reminded hes much more advanced 🙂 i cannot find words enough to thank the autistic community of all ages for being brave enough to help us clueless allistic parents. You are being heard 🙂 and the next generation has a better life because of it. Some of it anyway.

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