Unintentional Harm: Understanding the Out of Control Body

Recently, one of our parents asked what to do when her son become grabby and pinchy at home or school.  She recognizes that her son has motor control issues and knows that he is not trying to intentionally hurt her but is having trouble reconciling the difference between his intentions and actions. All of our clients have motor control difficulties, formally known as apraxia, but informally described as a “body-brain disconnect.” We have also written about it here and here. Since we believe the real experts we decided to pass this mom’s question along to “The Tribe”, our group of nonspeaking young adults who communicate through spelling.

Here’s some of the Tribe – Ben, Huan, Emma, Lisa, Ryan and Paul.

Huan: Explain that when something like that happens he does not wish to hurt anyone. He is most likely over stimulated and had no other outlet in that moment. It’s a really terrible feeling to experience and that’s the only way I can explain it. Just trust that he really doesn’t want to hurt anyone.

Emma: I definitely feel your pain. I am one of those who can’t control their body. I know it is not ok for me to shriek but I can’t stop myself even when it is affecting my friends. Try to be patient and know it is not his intention to hurt you.

Ben: It’s hard when teachers don’t understand you and some kids unknowingly provoke you and your body is vibrating and feels as if you might explode and you actually do and someone gets hurt. Your heart breaks, but now you’re in trouble and you can’t remember how you lost the control you worked so hard to maintain. If teachers can’t understand this impulse, how are we supposed to stop? How are we to progress? It’s like, not hard.

And some more of our Tribe – Tom, Ian and Ryan

Ian: Tell the teachers there are things going on in the environment that neurotypicals will never pick up on, and when they try to control your son they are getting in the way of his self-regulation process and he strikes.

Paul: Tell them he doesn’t want to do it. It’s his brain body disconnect. And he is intensely dysregulated.

Davis: One of the hardest things to explain is doing something horrible to someone you love. It is the last thing that you want to do and it makes you sick to accept that you did this. I wish I could give you a better answer. It is anxiety and constant dysregulation not your sweet child’s intentions at fault.
Another of our clients, Jordyn, has more to share on how he struggles when his unintentional actions hurt others. Thanks to the Tribe for your insight on this complicated and emotional issue.
~Elizabeth and The Tribe
Advertisements

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