The Body and Brain Disconnect

I am part of a wonderful community of people who serve the nonspeaking community. We chat, compare notes, commiserate, laugh, motivate, and learn from each other. Most of us have never met face to face (yet!). We have come together via the internet to blog, Facebook (is this now a verb?), skype, and email not only to learn but to share the words of individuals using spelling as a form of communication and encourage others to try this method. One of my favorite blogging duos is Lisa Reyes and her son, Philip, who write Faith, Hope and Love…With Autism. It has been a pleasure to get to know Lisa through her blog and our correspondence. Lisa is a great example of a parent who has worked patiently and persistently to support her son’s journey while guiding other parents! I could fill pages with the names, stories and leadership of other remarkable parents (and I will!). That’s the beauty of this community – parents and practioners are just as dedicated to the success of others as they are to the success of their own children or clients.

Several months ago, I read Philip and Lisa’s blog entry, “The Difficulty of Self-Control“. Philip described his struggles with control of his body and the disconnect between his body and brain so eloquently. Through his words, I gleaned a better understanding of my kids who have similar struggles. So, I wrote a lesson featuring Philip’s blog! This has been one of my favorite lessons and as you will see, I have used it many times with clients of varying ages. (These responses are from clients ages 8-23. I do find it is best used with individuals who are consistently responding at the sentence level, but I have used it with kids who are at the multi word level too.) *To access this entire lesson (and please try it out with your own child!) see the comments section of this post. Here are the responses from my panel of experts!

disconnected2

“MY BODY HAS A MIND OF ITS OWN WHICH IS VERY DIFFERENT THAN MY OWN. “

Can you relate to Philip’s statement that his body does not obey his brain?

I GET OVERWHELMED WITH TRYING TO CONTROL MY BODY.  I HAVE TO WORK SO HARD TO GET THROUGH MY DAY.  I AM JUST TRYING TO LIMIT MY MOVEMENTS SO I CAN FUNCTION AT ALL.  ~Luke (8)

I CAN SO RELATE TO PHILIP.  I CANNOT CONTROL MY MOVEMENTS BECAUSE MY BODY FUNCTIONS SEPARATELY FROM MY BRAIN.  TOTALLY SEPARATE.  MY BODY TAKES OVER AND I AM LEFT OUT OF THE DECISIONS.  IT IS NOT PRETTY TO BE LIKE THIS.  I DO NOT LIKE THE THINGS THAT MY BODY MAKES ME DO. Can you give me an example?  GOING CRAZY WITH NOISES AND MOVEMENTS.   ~Paul (23)

MY BODY DOES NOT OBEY MY BRAIN EITHER.  I DON’T KNOW WHY MY BODY WON’T LISTEN TO MY BRAIN.  YOU CAN NEVER KNOW HOW FRUSTRATING IT IS TO LACK CONTROL OF YOUR BODY.  ~Huan (17)

YES.  MY BODY AND BRAIN ARE DISCONNECTED.  JUST LIKE PICKING MY FINGERS. THESE URGES COME OVER ME AND I HAVE TO DO IT.  ~Ian (16)

I DO NOT HAVE CONTROL OF MY BODY.  IT DOES NOT LISTEN TO ME.  MY BODY DOES WHAT IT WANTS.  ONLY MY BODY KNOWS WHAT IT IS GOING TO DO.  Can you give me and example?  SOMETIMES IT IS NAUGHTY WHEN I TELL IT NOT TO BE. OTHER TIMES I AM SURPRISED BY WHAT IT DOES.  ~Emma (17)

SO VERY MUCH.  I CANNOT CONTROL MY BODY.  MY BRAIN AND BODY ARE DISCONNECTED.  SO I USE MY BRAIN TO THINK.  VERY OFTEN MY BODY BETRAYS ME.  IT WONT LISTEN TO MY BRAIN.  MY BODY HAS A MIND OF ITS OWN WHICH IS VERY DIFFERENT THAN MY OWN.  ~Ben (18)

Philip talks about his impulses.  What is your experience with impulses? 

I CANNOT STOP MYSELF WHEN I START TO DO SOMETHING.  I FEEL BAD AFTER BUT I CAN’T HELP IT. ~Luke

I HAVE IMPULSES ALL THE TIME.  MY BODY IS ALWAYS GETTING ME IN TROUBLE.  IT IS UNCONTROLLABLE AND I HAVE SPENT MY ENTIRE LIFE FIGHTING FOR CONTROL. IT HAS BEEN A CONSTANT BATTLE.  ~Paul

MY BODY TAKES OVER MY BRAIN AND I AM LEFT OUT IN THE COLD. WHEN THIS HAPPENS  I AM TOTALLY SURPRISED.  IT IS LIKE A STRANGER HAS TAKEN OVER MY BODY.  ~Huan

I AM ALWAYS MEETING CHALLENGES FROM IMPULSES.  MY BODY IS OUT OF CONTROL. OFTEN MY BODY REVOLTS AND TAKES OVER AND KICKS MY BRAIN OUT. FIRST I NOTICE SOMETHING.  MY BRAIN REGISTERS SOMETHING AND I KNOW WHAT TO DO BUT MY BODY DOES NOT LISTEN TO MY BRAIN.  I CAN NOT EVEN TELL YOU HOW FRUSTRATING IT IS.  MY BODY NEEDS TO GO IN TIME OUT.  SOMETIMES I GET SO ANGRY WITH MY BODY.  OTHER TIMES I THINK I AM REALLY MAKING PROGRESS. ~Ian

IMPULSES HAPPEN ALL THE TIME.  I SEE SOMETHING AND I CANNOT HELP HOW MY BODY RESPONDS TO IT.  Can you give me an example?  WHEN I SEE THE COMPUTER I GET OBSESSED WITH THE NEED TO GO ON IT.  ~Emma

USUALLY IMPULSES FOR ME HAVE TO WITH MY NEED TO STRAIGHTEN UP ALL THINGS OUT OF PLACE.  I TRY NOT TO BUT MY BODY TAKES OVER.  USUALLY I LOSE THAT BATTLE SO I HAVE QUIT THAT WRESTLING MATCH.  ~Ben

Philip talks about being tired.  What makes you tired?  

I AM TIRED OF FIGHTING MY BODY ALL OF THE TIME.  IT IS A NEVER ENDING JOB FOR ME. I AM SO WIPED OUT PUTTING UP WITH MYSELF AND MY CRAZY BODY.  I WISH I COULD STOP FIGHTING ~Luke

I AM TIRED OF CONSTANT STRUGGLE WITH MY BODY.  I DON’T WANT TO CONTINUALLY STRUGGLE WITH MY BODY.  I DON’T WANT TO CONTINUALLY HAVE TO WORK HARD JUST TO GET THROUGH THE DAY.  BUT I HAVE NO OTHER CHOICE. I ACCEPTED THIS LONG AGO.  ~Paul

JUST GETTING THROUGH MY DAY IS EXHAUSTING.  TRYING TO CONTROL MY ACTIONS EACH TIME MY BODY TAKES OVER WIPES ME OUT.  THIS HAPPENS ALL DAY LONG.  I NEED A VACATION FROM MY BODY.  YOU LAUGH, BUT IT IS TRUE. ~Huan

TRYING TO EDIT MY BODY’S ACTIONS NEVER STOPS.  IT SUCKS THE LIFE OUT.  THE BODY IS THE ENEMY.  I WISH FOR REST PARTICULARLY AT NIGHT WHEN I WANT TO SLEEP.  THE CONTRARY BODY WONT LET ME.  ~Ian

I AM TIRED OF MY BODY BEING NAUGHTY.  IT NEEDS TO LEARN TO LISTEN TO MY BRAIN AND BEHAVE LIKE A TEENAGER.  I AM SO TIRED OF MY BODY GETTING ME IN TROUBLE.  ~Emma

I AM TIRED OF FIGHTING THIS DISOBEDIENT BODY.  EACH DAY IS AN EPIC BATTLE BETWEEN MY BRAIN AND BODY.  I AM EXHAUSTED BUT REFUSE TO SURRENDER THE WAR. ~Ben

Philip mentions trying to control stims, what can you tell me about stims?  (Note: my lessons have a way of evolving over time.  I have added these last two questions over the months that I have used this lesson.)

STIMS HELP ME TO FOCUS. DO NOT THINK THAT WHEN I AM STIMMING THAT I HAVE STOPPED LISTENING. I AM STILL WITH YOU BUT MY BODY HAS CHECKED OUT. ~Luke

STIMS ARE A REST FROM MYSELF.  THEY LIGHTEN UP MY BURDENS BY LETTING ME ESCAPE.  STIMS ARE LIKE NOTHING I CAN DESCRIBE.  I BET IT IS LIKE BEING ON DRUGS.  STOPPING MY STIMS IS VERY DIFFICULT FOR ME.  I KNOW I CAN’T STIM ALL THE TIME BECAUSE I WOULD NOT GET ANYTHING HARDLY THOUGHTS OUT.  THE BAD THING ABOUT STIMS IS THAT THEY KEEP ME FROM BEING ABLE TO THINK.  ~Ian

Is there anything that we can do to help? What gives you hope?  

I NEED TO BE BROUGHT BACK FROM THE HOSTILE TAKE OVER OF MY BODY.  IT HELPS TO TALK TO ME SO MY BRAIN IS INVOLVED. THAT WAY MY BODY HAS TO TAKE A BREAK. ~Luke

I AM STILL HOPEFUL.  EACH DAY I GET TO HAVE A CHANCE TO LIVE MY LIFE TO THE FULLEST.  I AM GRATEFUL. ~Paul

I NEED HELP PATROLLING FOR UNSAFE TERRITORY, PLACES THAT MIGHT TRIGGER A MELT DOWN.  STOP YOURSELF AND THINK ABOUT WHAT MIGHT SET YOU OFF. THINK ABOUT THAT HAPPENING TO ME DAILY, SEVERAL TIMES A DAY.  NOW YOU CAN UNDERSTAND WHAT IT IS LIKE TO BE ME. ~Ian

My thanks to Lisa and Philip for their leadership and kicking off this discussion on the brain and body! Another huge thank you to my clients and their families who teach us something new every day! ~Elizabeth

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7 thoughts on “The Body and Brain Disconnect

  1. Here’s the lesson…..try it out! I would love to hear what your kid (or adult) has to teach us!
    Body Control

    Today we are going to talk about a boy named Philip who is non-speaking and uses RPM and a letter board to communicate. He is 11 years old and writes a blog with his Mom.

    What is the name of the boy we are talking about?  

    How old is Philip?  

    How old are you?  

    How much older (or younger) are you than Philip?  

    What is a blog? 

    Here is what Philip wrote in his blog

    “A month ago I asked Philip, “What is the essential feature of your autism?”  Philip replied by spelling on his board, “I CANNOT MAKE MY BODY OBEY MY BRAIN.”  This sentiment has been repeated over and over by autistic people, especially by those who are non-speaking but have found a way to communicate alternatively by spelling on a letterboard or typing. Yesterday Ariane Zurcher, mother and author of Emma’s Hope Book, wrote a terrific post entitled “When the Body Does not Obey the Mind”  The post quotes several young people about their experiences living in a body that does not listen to its mind.”

    Can you relate to Philip’s statement? 

    Philip goes on to say,
    “I read the post to Philip this afternoon.  I wanted him to know there are many others like him and that he is not alone.  Then I asked if he wanted to share his experiences.  “Y,” he pointed.
    I am in a body that does not obey my brain.  I am open minded but my actions are each day searching the peace of mind.  Tons of each day I am so tired from making my body obey my brain.  I am always estimating to overcome an impulse.  Impulses come in many different forms.  I may see food and out of the blue it makes me wholly tuned into it.  I am really too slow in my thinking to stop myself from taking the food.  I feel bad after.  I think I really need to readdress understanding real need to control my body.  I am most in control when I take some words and try to get me to follow it.  I understand a lot of verses from the Bible.  They help me touch mountains of depression and tossed wind of seeking out help.  (“What do you mean by tossed wind?” I inquired).  It means help is like tossed wind because it is hard to grasp.  The adamant art of each day is addressing my self-control by praying to God. Each day I am eager to accept myself more.  I’m each day seeking others to friend me to let me be myself and not let me accept loneliness. One day I want to dare myself to be friends with normal kids.”   

    Philip talks about his impulses. What is your experience with impulses?  

    Philip tells his mom,
    “Each day I am totally stressed about teaching myself to stop impulses.  Impulse to tear teachers apart is the worst.  I get that impulse when I am tired.  Tiredness each day to eat neatly in the cafeteria.  I am tired from noise.  Tired from accepting hard teaching. I need rest and a break when I get in a meltdown.  I am letting God help me more.  I pray to Him when I am getting tired.  He answers me with a teaching.  It is an understanding of a token verse. I had the impulse to tear at Dad because I was tired from trying to type on the iPad.  In a rage I do not know how to stop.  One thing to keep in mind each day is to leave me alone when my body is lashing out so I can pattern my solace to keep calm.  (“What do you mean by ‘pattern my solace’?” I asked).  Ask on bended knee for God’s help.”

    “I am tired from each day telling myself to stop stims.  It is too onerous to analyze right behavior.  It is hard to coordinate all the things I need to do.  I need to listen.  Then I need to plan my action.  I am tons of work to move appropriately.  I need help to stay on task.  Tired and stressed all the time.  Someone makes leaps to have to reach me.  To better help me one should keep topping me.  (“Can you clarify?”)  They should interest me doing new things.  They should accept no excuses from me, except if I am sensory overloaded.”       

    Philip talks about being tired.  What makes you tired?  

    Philip also mentions trying to control stims, what can you tell me about this?

    Is there anything that we can do to help? What gives you hope?

  2. Understanding what my son goes through every day and night helps me be more patient. Helping others to understand gives greater insight to his struggles. For many years people would ask me why he behaves as he does, now he can tell us instead of me just guessing!

    • I used to be in such a quandary about what to DO about the things the kids were sharing. I have come to realize that often, understanding is often what they are really seeking! Thank you for sharing your beautiful Ian with us! ~Elizabeth

  3. elizabeth, i am eager to tell you that i loved your body brain disconnect blogpost. understanding how we feel really helps us learn to each day patiently accept ourselves being challenged. you made my service worth undertaking. i am really pleased to make patient understanding of autistics. from, philip

    • Philip! Thank you so much for your comments! Look at what you and your mom have inspired! I completely agree with you that understanding goes a long way toward acceptance. I think more than anything, most of us just want to be understood! Your words and the words of people like you who use RPM are teaching us how to understand you better. Please keep up your great leadership and service! Remember, that Washington DC is a great place to visit, if you and your mom come down this way, I will throw a big party so you can meet these kids that you have inspired! xo, Elizabeth

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