Ask the Experts – an RPM Panel Discussion

Whew!  It has been a busy Spring and Summer.  I need to get you caught up on all the good happenings that we have had going on! In May, I went to Atlanta for a workshop. We have a thriving RPM community in Atlanta.  A group of families who get together for social outings, learning together and monthly community meetings where RPM providers or other speakers talk to the community about topics of interest. For May’s community meeting, we enlisted the Atlanta “Core Four” – Graciela, Reece, Charles, and John to discuss their views on questions that had been previously submitted and culled together. In the interest of time, one of the “kids” (ranging in age from 11 – 20) responded on the boards with me while the others simultaneously responded with their parents for each question. For some questions, I got follow up responses from the kids.  It was a powerful evening – we had about 70 folks in the audience – parents, educators, therapists and friends, hanging on every letter!

It should be noted that this group of kids have been working on the letter boards daily with their parents and RPM providers for the last year-ish and are quite fluent on the boards. Our gang of RPMers are very involved in the Atlanta RPM community and were the original kids who attended the first workshop and charged all of us to build a community!  (My kids are never shy about community their expectations of me and others!!!) Here is what our panel of autism experts had to say!  (Responses from the letter boards are presented in all capitals.)

Why do you think RPM works for you?

Reece: RPM WORKS FOR ME BECAUSE I CANNOT SPEAK WITH MY MOUTH. MY BODY IS OUT OF MY CONTROL

Charles: SAME FOR ME. I DO NOT TALK RELIABLY. SO I SPELL INSTEAD.

John: I THINK IT WORKS FOR ME BECAUSE IT IS ALWAYS PRESUMING COMPETENCE.

Graciela: BECAUSE I CANNOT TALK. I’VE TRIED SO MANY OTHER THINGS. LEARNED RPM ONE YEAR AGO IT HAS BEEN SAVING ME FROM LIFE IN PRISON.

The audience was captivated by our panel!

The audience was captivated by our panel!

Can you talk to us about the body mind disconnect?

Charles: YES I AM NOT IN CONTROL OF MY BODY. I AM ABLE TO THINK BUT I AM NOT ABLE TO DO WHAT MY BODY AND BRAIN PLAN.

Reece: TELL THEM I PROMISE I WOULD NOT ACT LIKE THIS IF I COULD CONTROL IT.

John: I CAN’T CONTROL MY BODY BUT I CAN CONTROL MY MIND.

Graciela: MY MIND DOES NOT ALWAYS CONNECT VERY WELL WITH MY CARELESS GORGEOUS BODY.

Do you have any recommendations for what should happen when your body doesn’t have control and you are disregulated?

John: I WOULD LIKE TO SAY THAT I AM ALMOST ALWAYS DISREGULATED AND IF YOU WANT TO TEACH ME GET USED TO THAT.

Charles: NOT A PROBLEM FOR ME.  (Charles is a super mellow guy!) 

Reece: REALLY I HAVE VERY PHYSICAL REACTIONS WHEN I TRY TO MAKE MY BODY FOLLOW MY MIND.

John: LUCKY CHARLES.

Graciela: MANAGE THIS WITH RESPECT USE A LOT OF BEAUTIFUL HOMEWORK TO KEEP THE MIND ENGAGED. GETTING THE OPPORTUNITY TO GET A REAL EDUCATION IS SO MEANINGFUL TO MASTER THE CARELESS AND GORGEOUS BODY.

Why do you have to start with the letter boards? Why do you need RPM vs typing/handwriting?

Graciela: RPM LETS ME AND MY AWFUL BODY GET ALONG.

Charles: SO HARD TO EXPLAIN AND YET I KNOW THAT I CANT WRITE OR TYPE LIKE THIS.

John: IT WORKS BETTER THAN ANYTHING I HAVE TRIED AND I HAVE TRIED EVERYTHING.

Reece: RPM AND THE AMAZING LETTER BOARDS HARNESS MY DEVILISH BODY BY CONCENTRATING ON GROSS MOTOR SKILLS AND INTELLIGENCE.

Why are lessons important?

John: THEY HELP ME FOCUS.

Charles: YES I AGREE THEY ALSO TEACH ME WHICH I NEED.

Graciela: BECAUSE THEY HELP MY MIND AND BODY GET CONNECTED.

What is your favorite topic?

Graciela: REAL HARD MATH.

Charles: YOU TEACH ME SO WELL I LOVE IT ALL.

John: OF ALL THINGS I LOVE SCIENCE AND HISTORY

Reece: YES ONLY THING I ENJOY IS ALL OF IT

What do you wish you had in your education?

Reece: YES, I WISH HAD AN EDUCATION… PERIOD. MY EDUCATION CAME TO SOME END WITH MY DIAGNOSIS OF AUTISM.

Charles: MY EDUCATION BEGAN WITH RPM AND I LOVE IT!

John: I WISH I COULD GO BACK TO MICHIGAN AND GO TO SCHOOL WITH MY FRIENDS.

Graciela: TAKE THIS TO ALL TEACHERS. HAVE TO BELIEVE IN OUR INTELLIGENCE.

I heard about RPM from a friend. I don’t know if my kid is smart enough or ___________ (Fill in the blank) enough. What is your advice to them?

Graciela: I THINK THAT IS CRAP. YOUR KID CAN DO THIS TOO. I AM NO DIFFERENT.

Charles: SAME. ROPE YOUR KID INTO THIS. THEY WILL THANK YOU LATER

John: I WOULD TELL THEM ITS BULLSHIT. THEIR KID CAN DO THIS

Reece: NEVER UNDERESTIMATE AN AUTISTIC. YOUR KID CAN AND WILL RISE TO THE CHALLENGE. IN FACT YOUR KID IS HOPING FOR THIS.

What is an obstacle to getting started?

John: FEAR OF FAILURE.

Charles: YOU NEED TO BELIEVE IN YOUR KID.

Graciela: WAY SO MANY REALLY LAME REASONS.

How come my kid can RPM with ___ but not me?

John: IT IS HARDER THAN IT LOOKS. IT TOOK MY MOM A LONG TIME TO GET IT. I HAD TO BE PATIENT.

Reece: ITS ALL ABOUT CONFIDENCE COMFORT CONSISTENCY AND CONNECTION.

Charles: SOME PEOPLE ARE BETTER THAN OTHERS AND WE KNOW IF YOU DONT BELIEVE IN US.

Graciela: BECAUSE YOU ARE NOT DOING IT RIGHT. YOU REALLY NEED TO PRACTICE. GET MANY KIND COACHES TO HELP YOU UNDERSTAND ITS A PROCESS.

John: THAT IS THE TRUTH.

My child eats everything. Whats up with that?

John: I DONT KNOW. NOT MY THING.

Charles: SAME HERE. I DONT EAT STUFF THAT IS NOT FOOD.

Graciela: GETTING A LOT OF FEEDBACK IN THE MOUTH IS ORGANIZING FOR ME. What suggestions would you make for oral seekers? LET THEM HAVE SOMETHING TO CHEW ON.

Reece: STRONG INPUT ORALLY. MAKE SURE TO PROVIDE APPROPRIATE ALTERNATE ORAL STIMULATION. GUM SOMETIMES WORKS FOR ME.

What would you say RPM has contributed to your life?

Graciela: RPM HAS MADE MY LIFE MEANINGFUL.

Charles: YOU WILL NEVER UNDERSTAND THE GIFT OF COMMUNICATION IF YOU ALWAYS HAVE HAD IT.

John: RPM HAS MADE ME VERY HAPPY TO SEE THAT I CAN TALK.

Reece: RPM HAS PROVIDED ME WITH FRIENDS TO SHARE SOCIAL AND EDUCATIONAL OPPORTUNITIES. RPM HAS IMPROVED ALMOST EVERY ASPECT OF MY LIFE!

What is your advice as parents/teachers start RPM?

Reece: MY ADVICE TO PARENTS IS TO LEARN HOW TO RPM. YOU NEED TO HAVE THE ABILITY TO TALK TO YOUR KIDS.

John: I THINK THAT THEY SHOULD DO IT EVERYDAY. THEY SHOULD ALSO BELIEVE IN THEIR KID.

Graciela: ALWAYS BELIEVE IN YOUR CHILD AND TRUST YOUR INSTINCTS.

Charles: ONLY YOU CAN BE THERE ALL THE TIME. NO ONE ELSE IS MORE IMPORTANT THAN YOU TO YOUR KIDS.

John: YES

In terms of looking towards the future, where do you see this next year taking you?

Reece:  THAT IS A GREAT QUESTION, I DONT THINK THERE ARE LIMITS NOW. TODAY I AM MORE FREE THAN I HAVE EVER BEEN. I WANT TO AUDIT SOME COLLEGE CLASSES SOON AND CONTINUE TO MOVE FORWARD WITH MY EDUCATION.

Charles: YOU NEVER KNOW HOW LONG YOU HAVE TO LIVE. GO OUT AND MAKE A DIFFERENCE IN THIS WORLD.

John:THE ONLY THING I WANT IS INDEPENDENCE…

Graciela: GETTING INTO MIT.  ALWAYS LIKE LEARNING ABOUT PHYSICS. FEELING SO READY TO FLY AND SHOW THE WORLD WHAT I HAVE TO OFFER.

What do you our audience to tell their kids/students?

Charle: SOMETHING I WANT TO SAY IS THAT YOU MUST ACT ON YOUR OWN BELIEF IN YOURSELF. For kid or parent? KID.

John: AUTISM IS NOT A HORRIBLE THING. IT IS WHAT IT IS. For kid or parent? KID. STOP ACTING LIKE YOU ARE DAMAGED. I EMBRACE WHO I AM.

Charles: SO TRUE JOHN.

Graciela: YOU MUST GO AND TELL THEM THAT YOU WILL WORK SO HARD TO REACH THEM.

Reece: TELL YOUR KIDS EVERYTHING. SHARE ALL THAT YOU ARE INTERESTED IN. PLEASE KNOW THAT THEY UNDERSTAND. GO JOHN! PROUD TO BE AUTISTIC! YES!

Graciela: MY AUTISTIC FRIENDS ARE RIGHT AND I LOVE THEM.

Our panelists celebrate a job well done!

Our panelists celebrate a job well done!

As you can see, these experts don’t candy coat their message!  RPM is a powerful tool for communication and education and is changing lives all over the world. Our nonspeaking and limited speaking autistic youth have been ignored for too long and are so very eager to learn!  Do you know other RPMers? Get together and learn cooperatively.  Learning is more fun with your friends!

~Elizabeth, Graciela, Reece, Charles and John

 

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6 thoughts on “Ask the Experts – an RPM Panel Discussion

    • The “kids” are the best advocates I know ~ advocating for their right to a meaningful education, for other nonspeaking autistics and for RPM, their means of communication! What a joy it is to accompany them on this journey!

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