Dispatches from the Roller Coaster

I AM BENJAMIN MCGANN. TODAY MY FRIENDS AND I ARE TAKING OVER THE BLOG TO TALK ABOUT THE PLAY (Dispatches from the Roller Coaster)  WE WROTE WITH STUDENTS FROM STONE BRIDGE HIGH SCHOOL.

Matthew: THE PLAY FOCUSES ON A GROUP OF NON-SPEAKING AUTISTICS THROUGH THEIR DIAGNOSIS AND LIFE IN GENERAL.
Huan: YOU WILL FINALLY UNDERSTAND THE BODY BRAIN DISCONNECT AS WE EXPERIENCE IT.
Ryan: YOU MIGHT WITNESS THE MIRACLE THAT RPM BRINGS TO THEIR FUTURES.

IMG_6031

GKTC got a sneak preview of the play! Lucky us!

What did you think of Dispatches from the Roller Coaster?
Ryan: THE PLAY WAS INCREDIBLE.  THE STUDENTS TOLD OUR STORIES IN A WAY THAT WAS CAPTIVATING AND EDUCATING.  IT WAS THE BEST EXPERIENCE OF MY LIFE.

Ryan with his Body and Mind and the cast!

Ryan with his Body and Mind and the cast!

Lisa: THE ONE ACT WAS SO PERFECTLY PUT TOGETHER.  THOSE KIDS PORTRAYED AUTISM IN A RESPECTFUL, TASTEFUL MANNER.  THEY LOOKED LIKE THEY FELT WHAT WE FELT.

Paul with the talented actors played mother and his body & mind (in yellow) !

Paul with the talented actors played his mother and his Body & Mind (in yellow)!

Huan: CAN YOU SAY BLOWN AWAY?  I WAS STRUCK BY THE POWERFUL EMOTIONS THAT WERE PRACTICALLY OOZING OUT OF THE RUNNING DOGS. GLEN HOCHKEPPEL (the Director of the play and drama teacher at Stone Bridge High School), YOU HAVE A BEAUTIFUL MIND. THANK YOU FOR HEARING OUR STORIES.

Matthew: THE PLAY WAS AMAZING. THE SBHS KIDS PLAYED US WELL. I WANT TO SEE IT AGAIN.

IMG_6088.JPG

Ben, Tom and Elizabeth have a photo opp with the cast!

Ben: I AM VERY IMPRESSED BY THIS PLAY. WHAT A DREAM TO SEE OUR STORY ON STAGE. I WOULD HAVE BEEN HAPPY TO HAVE WRITTEN THEY PLAY TOGETHER. TO SEE IT GO TO PRODUCTION WAS BEYOND BELIEF. SO CRAZY HOW OUR LIVES HAVE CHANGED. TO LIVE LIKE THIS NOW IS BEYOND BELIEF!

Tom: SIMPLE YET COMPLEX, LIKE US. I DON’T THINK IT COULD’VE BEEN ANY BETTER. WE’RE ALL BADASS, AND YOU SAW THAT AND YOU HELPED US PORTRAY THAT, SO NOW YOU ARE TOO. AMAZING JOB H AND COMPANY.

IMG_6038

GKTC is so lucky to have such strong actors playing our students.  These actors were portraying Tom’s Body & Mind and his mother.

Describe how you worked with the SBHS students to create this play:
Huan: THE SBHS STUDENTS CAME OUT TO WORK WITH US IN THE SUMMER. IT IS THE FIRST TIME I HAVE EVER WORKED WITH TYPICAL STUDENTS AS AN EQUAL. THAT ALONE MADE THIS EXPERIENCE SO INCREDIBLE. I FEEL LIKE OUR TIME TOGETHER LED TO A DEEPER UNDERSTANDING OF EACH OTHER AS WELL AS NEW FRIENDSHIPS.

Ryan: HUAN NAILED IT. THE STUDENTS DID NOT COME OUT AND TELL US WHAT THEY WANTED TO DO. THEY ASKED US WHAT WE WANTED TO ACCOMPLISH IN THIS PLAY. THAT WAS SOMETHING I HAVE NEVER EXPERIENCED. WHAT GREAT INSIGHT COMES FROM COLLABORATION LIKE THIS. WHY ISN’T THIS STANDARD PRACTICE?

IMG_6055

What a ladies man! Ryan had two beautiful ladies to play his Mind and Body!

Ben: AS MY FRIENDS PUT THIS, THE COLLABORATION WAS THE HIGHLIGHT OF THIS EXPERIENCE. TO HAVE OUR WORDS, OUR POETRY, AND OUR MESSAGE PRESENTED THROUGH COLLABORATIVE WRITING WAS LIFE CHANGING FOR ME AND, I HOPE, FOR THE SBHS STUDENTS TOO. SO PROUD TO BE PART OF THIS PLAY.

image (2)

The beautiful Emma.

Emma: DITTO WHAT MY FRIENDS SAID. I THOUGHT THE EXPERIENCE OF PUTTING THIS PLAY TOGETHER WAS THE BEST LEARNING EXPERIENCE I’VE EVER HAD. THE STUDENTS VALUED US.

Elizabeth: The actors brought the students’ poems to life!  Here is one of Emma’s poems entitled, Tell Me About It. 

Tom: THE ENTIRE EXPERIENCE WAS EPIC. NOT ONLY DID WE COLLABORATE WITH THE SBHS STUDENTS, WE INCLUDED OUR PARENTS VOICES AND MEGHANN AND ELIZABETH TOO. TRUE COMMUNITY EFFORT.

IMG_6144.JPG

Tom after taking in the show!

What are your thoughts on seeing yourself and your parents portrayed on stage?
Ben: IT WAS INSANE! I HAVE TO BE HONEST, I LOVED GETTING TO KNOW THOSE STUDENTS, BUT I WAS NERVOUS TO SEE HOW MY BODY WAS GOING TO COME ACROSS TO THOSE WHO DO NOT UNDERSTAND AUTISM. HOWEVER, IT WAS PURE, IT WAS RESPECTFUL AND IT WAS SO ME! MY MIND ACTRESS IS POWERFUL LIKE ME, WE SHOULD BE FRIENDS. ABBY, MY BODY ACTRESS, WAS SO EXCELLENT!

Elizabeth: This Poem for Poe was collectively written by our GKTC students during poetry week. Inspired by Edgar Alan Poe, each student took a turn adding a line to the poem.

Huan: TO PIGGYBACK OFF BEN, THAT WAS HUGE SOURCE OF WORRY. NO ONE WANTS TO LOOK BAD, BUT THAT’S THE LAST THING THAT HAPPENED. I WANT A PERSONALITY LIKE MY MIND-ACTOR, CALEB PORTRAYED ME HAVING. I ACTUALLY THINK I DO, BUT IT’S HARD FOR ME TO SHOW, BUT I FEEL PRETTY SILLY SOMETIMES. MY BODY ACTRESS GOT ALL MY LITTLE THINGS DOWN PAT, EVEN MY SCRUNCHY SMILE! I’M AMAZED BY ALL THE RESPECT FOR OUR FAMILIES, I FEEL TRULY APPRECIATED FOR THE FIRST TIME.

IMG_6050

Huan hangin’ out with the unbelieveable students and actors who portrayed his Mind and Body.

Lisa: IT MADE ME SO HAPPY TO SEE THE SBHS KIDS PLAY MY FRIENDS. THEY MADE SOUNDS SO WELL, I THOUGHT IT WAS MY FRIENDS! THE PORTRAYAL OF PARENTS WAS MOVING AS WELL.

IMG_6132

Donna meets “Donna”.  Our parents were also included in this play – interviewed and portrayed on stage.

Ryan: THE GIRLS DID A GREAT JOB PORTRAYING ME. I’M PRETTY EASY GOING AS THEY SHOWED. I LOVED THE BLUNT HONESTY OF THE PARENTS, THAT’S OUR LIFE IN A NUTSHELL.

Matthew: THE OPPORTUNITY TO SEE NEUROTYPICALS PLAY AUTISTICS WAS ONE I DIDN’T WANT TO MISS. IT WAS FUN TO FIGURE OUT WHO WAS WHO, WHICH WASN’T HARD. THEY ALL DID SUCH A GOOD JOB, ESPECIALLY THE EMMA-BODY CHARACTER.

IMG_6161

Elizabeth: What a phenomenal experience this was for all involved!  THIS is what inclusive education can produce!  **Local families, there will be an opportunity to see this play one more time as it goes to a drama competition on February 6, 2016.  Watch the Growing Kids Facebook page for details about time and location!!!**
~Ben, Emma, Huan, Ryan, Paul, Tom, Matthew, Lisa

A Modern Day Christmas Carol

I have been working on a hefty RPM lesson on Charles Dickens with some of my clients this week.  From this lesson, a couple have written brilliant Dickens inspired satires which I will share soon.  In the spirit of the holidays, my friend Paul wrote a modern day version of Dickens’ Christmas Carol.  His story is so timely, on point and simply too good not to share!

11181685_10153369132079174_8452716875247477595_n

THE CHRISTMAS GHOSTS NEED TO VISIT THE LEADERS OF OUR WORLD.  THE GHOST OF CHRISTMAS PAST SHOW A WORLD THAT IS NOT TOXIC WITH POLLUTION.  THE WORLD WAS STILL ABUNDANT WITH NATURAL RESOURCES.  THE WORLD HAS NOT LEARNED SUFFICIENTLY FROM THE PAST.

ENTER THE GHOST OF CHRISTMAS PRESENT.  THE GHOST OF CHRISTMAS PRESENT PLUGS IN HIS IPAD AND RUNS A POWER POINT OF SLIDES SHOWING OUR CURRENT STATUS.  SYRIAN REFUGEES….CLICK….TERRORISM….CLICK….SCHOOL SHOOTINGS….CLICK.  HOW ARE WE TO MOVE FORWARD?

CHRISTMAS FUTURE MAKES AN APPEARANCE.  IN HIS HANDS HE HOLDS TWO CHOICES FOR OUR FUTURE WORLD.  IN ONE HAND IS A WORLD OF HATE, GREED, INTOLERANCE, AND WAR.  IN THE OTHER IS A WORLD WHERE RESOURCES ARE PROTECTED.  PEOPLE ARE VALUED.  TOLERANCE AND ACCEPTANCE ARE THE NORM AND LOVES REPLACES GREED.  CHOOSE WISELY.

Paul asks a great question, “how are we to move forward?”  His solution sums it up….”choose wisely”! Our world leaders and policy makers could learn a thing or two from our RPM students. Wishing you Christmas Ghost free dreams this season!
~Elizabeth & Paul

Learning from Each Other During the Holidays

Today marks the last day of Channukah.  To all who celebrate, Hanukkah Sameach! I had the opportunity to learn more about Channukah from one of my clients, Dustin. Dustin came in for our weekly session and I gave him a choice of lessons, which included a lesson on the traditions of Christmas.  Although Dustin and his family are Jewish, he chose to do the Christmas lesson. Dustin was kind enough to share some of his thoughts on Channukah with me so that I was able to learn too! Like Dustin, I think it is important to learn about the religions and cultures of the world.  Perhaps if we all learned more about each other’s religions, cultures, customs, abilities, and lives we might all contribute to create a more accepting world.

IMG_0081

Here are a few questions from our lesson and Dustin’s fantastic creative writing.  My questions are in italics and Dustin’s responses are in all caps.

How do you think Christmas and Channukah may be similar or different?
SIMILAR BECAUSE THEY ARE BOTH HAPPY CELEBRATIONS WITH FAMILIES. DIFFERENT BECAUSE THEY ARE FOR DIFFERENT RELIGIONS.

 

 

What are two theories behind Christmas gift giving?
EYES ON HISTORY WILL RECOGNIZE THE STORY OF SANTA IN THE STORY OF ST. NICHOLAS. I THINK WHAT MATTERS IS THE SPIRIT OF THE GIFT NOT THE GIFT.

Tell me about gift giving in Channukah.
THERE ARE EIGHT NIGHTS OF PRESENTS IN CHANNUKAH.  THEY ARE STRICTLY SYMBOLIC. IT IS NOT REALLY ABOUT THE PRESENTS LIKE CHRISTMAS.  YOU HAVE SO MUCH GIFT GIVING AND GETTING ON CHRISTMAS.

What are your thoughts on gift giving/getting?
THE REAL GIFTS ARE THE ONES YOU CAN’T WRAP. STUFF IS NOT A GIFT. STUFF IS NOT VERY PERSONAL. REAL GIFTS ARE YOUR FAMLIY AND FRIENDS.  REAL GIFTS ARE YOUR WORDS AND TIME TOGETHER. TIME SPENT WITH LOVED ONES IS THE CHRISTMAS GIFT I WISH FOR ALL.
Do you have more to add? ONLY THAT IT IS NOT IMPORTANT TO SHOW LOVE WITH GIFTS.

Let’s do a creative writing of your choice. A poem, story, anything…
I WOULD LIKE TO WRITE A LETTER TO SANTA. (This came as quite a surprise to his mom and me! We could not wait to hear what Dustin was going to tell us.

DEAR SANTA,
NOT SURE YOU GET MANY LETTERS FROM AUTISTIC JEWS.  HERE I AM ANYWAY.  I DON’T WANT TO MAKE ANY REQUESTS FOR STUFF.  I ONLY WANT TO ASK THAT YOU TAKE CARE OF MY FELLOW AUTISTICS.  THEY MIGHT BORE MANY PEOPLE BUT TRUST ME THEY HAVE THE BEST IMAGINATIONS.  TOO BAD YOU CAN’T WRAP UP EVERYTHING AUTISTICS NEED.  YOU CAN’T WRAP UP LOVE, MY FAMILY AND ACCEPTANCE.  YOU CAN’T PUT A BOW ON EDUCATION AND WORDS.  YOU DO A SUPER JOB SO DON’T FEEL BAD.
LOVE,
DUSTIN

Wow! Dustin’s message is on point for any holiday that you may be celebrating this season!  Wishing you a great joy for all holidays that you celebrate.
~Elizabeth and Dustin

Nonspeaking Youth Advocate at TASH Conference 2015

An international leader in disability advocacy, TASH is dedicated to equity, opportunity
and inclusion for all. They work to ensure everyone has an opportunity to learn, work and enjoy life amongst a diverse community of family, friends and colleagues. This December, in Portland, Oregon TASH celebrated 40 years of generating change within the disability community. Five students from Growing Kids Therapy Center attended to advocate for their desire for an inclusive education. Benjamin McGann, Emma Budway and Huan Vuong are RPM students from Arlington Virginia who flew out to Portland to present. They each gave a TASH Talk (a 10 minute talk in the style of a TED Talk) and presented on a 50 minute panel discussion along with GKTC’s Portland RPMers, Liam Paquin and Niko Boskovic. Huan was also an invited panelist on a panel titled Sound the Alarm: Addressing the Ongoing Crisis in Communication Services and Supports. Finally, Ben, Huan and Emma represented the short film they created, The Power of Words, in a poster session. In each and every session, the students were quite simply AMAZING! These five students were confident, insightful, witty and brilliant!  They had the audience hanging on their every letter as they used the letter boards to spell out their powerful messages of advocacy, inclusion and acceptance. Read on to hear what they had to say!

Huan, Elizabeth, Emma and Ben ready to take on their TASH Talks!

Huan, Elizabeth, Emma and Ben ready to take on their TASH Talks!

TASH Talks
Ben, Emma and Huan each gave a TASH Talk.  Each talk was limited to 10 minutes, since it takes a bit of time to spell, the students prepared an introduction ahead of time (in italics) and completed the remainder of their talk on the letter boards (in all caps).

Hello. My name is Benjamin McGann. My talk today is about advocacy and leadership. You might ask, what does this guy know about advocacy and leadership? Well, it turns out I am an expert in advocacy and leadership. My expertise comes from years of being left out. Left out of education. Left out of conversations. Left out of decisions. Left out of everything. Because I don’t talk, I have been presumed incompetent and worse insufficient to matter. This must stop. Stop thinking people with disabilities don’t matter. I am here to tell you that everyone matters. We must provide our  young people with opportunities. These opportunities exist through education. I can tell you I did not learn through school. I have acquired my knowledge through listening and thinking about everything I hear. I challenge you to listen to me and think about what I am telling you.

THANK YOU FOR BEING HERE.  I AM IN MY LAST YEAR OF HIGH SCHOOL.  I HAVE BEEN IN AUTISM CLASSROOMS ALL MY YEARS OF SCHOOL.  I HAVE NEVER BEEN INSTRUCTED BEYOND A SECOND GRADE LEVEL.  STOP TREATING AUTISTICS LIKE THEY CAN’T LEARN (video).  SPEECH IS NOT A SIGN OF INTELLIGENCE.  EVERYONE NEEDS TO BE EDUCATED.  THIS IS MY CHALLENGE TO YOU – FIND A WAY TO INCLUDE NONSPEAKING AUTISTICS.
Emma presents her TASH Talk before a packed room.

Emma presents her TASH Talk before a packed room.

Hi. My name is Emma Budway. I am happy to be hear and tell you my story. I will do the majority of my presentation on powerpoint because I have trouble controlling my body. It takes me a while to spell however spelling is the communication method I use best. I am able to express my thoughts and knowledge through RPM. My mouth is not reliable. Most of what I show with my body is ridiculously inappropriate or at best unreliable. So if you see or hear me do something stupid it is not me it is my body. Now that I have explained about the disconnect between my brain and body can you understand when I have been denied a meaningful education? I am sympathetic to teachers who had to deal with my outbursts but that does not mean that I should not have been shut away in special education. Kept away from normal classes and denied the chance to learn with peers. One thing I want you to know is there are so many out there like me. Nonspeaking autistics like me that want you to know how much they want to learn. I am asking on behalf of those who do not have a voice to hear our plea to teach us. Respect our brains as tough as it may be please accept our lack of motor control. Stop trying to make us like you. That is a losing proposition.

THANK YOU.  I HAVE SO MUCH TO SAY.  I WANT TO TELL YOU THAT DESPITE MY MOUTH I AM SO EAGER TO LEARN.  TALKING IS NOT THE ONLY WAY.  I HAVE SO MUCH TO SAY.  I WANT TO LEARN.  EQUAL RIGHTS FOR ALL LEARNERS.

Emma closed her presentation with a poem she wrote in July, 2015.

TELL ME NO MORE!
QUIET THEY SAY
ONLY WISH I COULD.
HANDS TO SELF
ONLY WISH THEY WOULD.
NOT TIME FOR SINGING
WHEN IS?
IT HURTS MY EARS
TELL ME ABOUT IT!

My name is Huan Vuong. I am eighteen years old. I live in Arlington, Virginia. I have been excluded from regular education my entire life. The reason is because I cannot control my body. This is a problem when no one will take into consideration my motor planning problems. My brain is mighty buy my body is weak. I can listen to and understand everything. However if you are asking me to show you what I know via speaking or writing or typing independently I can’t guarantee that my body will cooperate. How do you support kids like me in the classroom? Acceptance is the answer(video).

I VERY MUCH WANT THE SAME OPPORTUNITIES THAT ARE EXTENDED TO TYPICAL KIDS.  NOT HAVING RELIABLE SPEECH SHOULD NOT REMOVE MY RIGHT TO LEARN. I AM A CITIZEN, AN AMERICAN AND AN EAGER LEARNER.  I WANT THE SAME ACCESS TO EDUCATION AS EVERY OTHER PUBLIC SCHOOL STUDENT.  PLEASE STOP FOCUSING ON A CURE.  THE CURE IS ACCEPTANCE.  THE CURE IS MEANINGFUL EDUCATION.  THE CURE IS TO PRESUME COMPETENCE.  I KNOW THAT THIS REPRESENTS A NEW WAY OF THINKING BUT I HAVE FAITH IN YOU AND YOUR ABILITY TO LEARN NEW THINGS.  THANK YOU.

Huan’s invited speech for the panel, Sound the Alarm: Addressing the Ongoing Crisis in Communication Services and Supports.  The members of this panel invited Huan to join their presentation. The stated intention of this panel was:  “Current evidence suggests that many persons with significant support needs are not receiving the supports and services they require to communicate successfully across environments. In schools, individuals are being denied access to successful supports because they are not deemed “evidence based” while other individuals are denied access because they are required to demonstrate competence before given an opportunity to learn. In this session, panel members will review the existing evidence, describe existing legislation and guidance related to the crisis, and call participants to action in continuing 40 years of progressive leadership by joining a work group to address the crisis.”

GOOD MORNING (video). (crowd responds, “good morning!”). MY NAME IS HUAN VUONG.  I AM NONSPEAKING AND AUTISTIC.  I COMMUNICATE VIA SPELLING ON A LETTER BOARD.  MY SCHOOL DOES NOT ACCEPT MY METHOD OF COMMUNICATION.  I AM THEREFORE DENIED A MEANINGFUL EDUCATION.  MY ONGOING FIGHT WITH THE SCHOOL IS YIELDING NO RESULTS.  I AM CLEARLY CAPABLE OF LEARNING YET NO SCHOOL WILL TEACH ME.  THIS MUST STOP.  I AM NOT ALONE.  THERE ARE SO MANY LIKE ME WHO DO NOT SPEAK WHO ARE BEING ROBBED OF AN EDUCATION.  THIS IS AN ATROCITY THAT OUR EDUCATION SYSTEM MUST STOP. THANK YOU FOR LISTENING.

Emma, Niko, Huan, Ben and Liam present in a panel discussion, Voices of Exclusion: Nonspeaking Youth Advocate for Inclusive Education.

Would you like to welcome our audience?

Emma: HI EVERYONE
Niko: HELLO
Huan: HI THERE SO GLAD YOU ARE HERE
Ben: I AM DELIGHTED TO BE HERE
Liam: HI WELCOME TO PORTLAND

Can you address the difference between speech and understanding?

Emma: I CAN NOT SPEAK BUT I CAN THINK.
Niko: MY COMPREHENSION IS PERFECT.  I JUST CANT GET THE WORDS OUT OF MY MOUTH.
Huan: MY CONTROL OF MY BODY IS LIMITED.  HOWEVER I CAN THINK JUST FINE.
Ben: GETTING THE WORDS OUT OF MY MOUTH IS IMPOSSIBLE BUT THIS IS NOT A REFLECTION OF MY THINKING.
Liam: MY STUPID MOUTH BETRAYS ME. I AM SO MUCH SMARTER THAN I SHOW.


What can you tell our audience about your motor system?

Ben: MY MOTOR SYSTEM IS UNRELIABLE AT BEST. AT WORST MY MOTOR IS A DISASTER. I CANT CONTROL MY SELF AT TIMES. SO I VERY MUCH GET EMBARRASSED BY MY BODY.
Huan: I AGREE COMPLETELY WITH BEN! I HAVE MORE CONTROL OF MYSELF AT TIMES THEN FOR NO REASON I DON’T.
Niko: DITTO. I CANT SAY IT ANY BETTER.
Emma: SAME HERE.
Liam: I AGREE WITH MY LOVELY FRIENDS!

Liam, can you please explain the difference between the words that come out of your mouth versus what you spell on the letter boards?

L: WORDS LOVE TO TRICK ME.  THEY GIVE LIES TO MY THOUGHTS.

How does your lack of speech affect your education?
Emma: NO ONE TEACHES US BECAUSE WE DON’T SPEAK.
Niko: MY SCHOOL IS ALLOWING ME TO RPM. THIS HAS BEEN LIFE CHANGING.  I FINALLY AM GETTING AN EDUCATION.(Video)
Huan: LUCKY NIKO! THIS NEEDS TO BE THE NORM NOT THE EXCEPTION.
Ben: CANT AGREE MORE.  WHAT POSSIBLE HARM COULD COME FROM TEACHING US?
Emma: I AGREE WITH BEN.
Liam: SO WHAT ARE YOU IN THIS ROOM GOING TO DO TO CHANGE THINGS?

Do you have suggestions for educators? 
Liam: YES. START HAVING A LITTLE FAITH IN US!
Emma: TEACH US LIKE WE WANT TO LEARN.
Niko: I THINK YOU NEED TO CHANGE YOUR ATTITUDE.  STOP DOUBTING AND START TEACHING.
Huan: HAVE FAITH IN OUR ABILITY TO LEARN.  UNDER THIS UNCOOPERATIVE BODY IS AN EAGER STUDENT.
Ben: GETTING TO KNOW YOUR STUDENTS ABILITIES WILL ASTOUND YOU.  VERY SMART, HEARTS OF GOLD, AND WILLING TO GO TO ANY LENGTH TO LEARN.

Rapid fire!  Can you briefly tell us what you have to offer and inclusive classroom?  
Ben: MENTAL AGILITY
Huan: MY LEADERSHIP
Niko: MY FRIENDSHIP
Emma: HUMOR
Liam: REALLY GREAT DANCE MOVES

Last thoughts for our audience?
Emma: PLEASE OPEN YOUR MINDS
Niko: HAVE A NEW RESPECT FOR AUTISTICS
Huan: MAKE ACCOMMODATIONS FOR YOUR LEARNERS.
Ben: STOP EXCLUDING NONSPEAKING AUTISTICS.
Liam: RESPECT YOUR LEARNERS.  WE WILL NOT DISAPPOINT YOU.

It was a busy day of presentations but we were not done yet! Finally, we had a poster presentation on The Power of Words, a short film that Ben, Huan and Emma wrote, produced, starred in and premiered in the Summer of 2014 with two other RPMers, Paul Park and James Potthast.

Thank you to the members of TASH who were a supportive and attentive audience. Thank you to the families who supported their student’s desires to present at this conference. Most of all, thank you to Ben, Emma, Huan, Niko and Liam for your courage, your insights, your advocacy and your words.  We could not be more impressed and proud of you!

~Elizabeth, Ben, Emma, Huan, Niko and Liam

 

Neurotribes: A Novice Review…

neurotribes Jeffrey Fisher

When I graduated from college I was presented with a beautiful quilt. Three layers: a solid bottom layer, a middle layer to provide warmth and a top layer that stitched together hundreds of pieces of unique,worn fabric. Worn fabric? Carefully curated scraps from clothing that several generations of family produced in the Great Appalachian Valley of Eastern Tennessee. The scraps were rich and no piece was more important than the next. The craftsmanship was essentially crowdsourced. Quilting remains an open source environment in which artistic impression, decoration or commemoration benefits from community.

When it comes to Autism, I am a novice; freshly minted as advocate and supporter of those who are non or limited speaking. My heart is closest to subject matter experts that I learn with and from daily… Emma, Julia, Ian, Graciela, Liam,  Anna, and Charlie. I am blessed that the list is seemingly endless; nearly hundreds that I have met over the past two years.

My subject matter experts cannot articulate the quilt of knowledge that Steve Silberman has expertly stitched together. Once enriched through meaningful education and empowered with communication they are simply individuals at various stages of anger, acceptance or pride; generally emerging from ages of educational marginalization.

I am not certain what I was expecting from “Neurotribes” but I got way more than I could have imagined. We pre-ordered it months ago based on TEDTalk I caught on twitter. My hope was to glean some fantastic nuggets to employ alongside my non/limited speaking friends who are just now finding their voice and embarking on their own Civil Rights platform. The legacy I expected was one of forward progress.

Silberman has stitched together a literary scientific quilt of the young field of autism. The pieces are intricate, but not the community, open source craftsmanship of the Great Appalachian Valley quilters. Proud practitioners unwilling to yield or integrate new insight carried their torches to a dead end in the maze at every turn. Parents and/or female practitioners pushed innovation, matured diagnosis and insisted on creating a platform and voice for those who were marginalized or worse, institutionalized. I was so happy to meet Lorna Wing… “When I read Kanner’s late papers, I thought they were bloody stupid. I knew I wasn’t a refrigerator mother.” Wing did not always get it right, but she went on do some amazing things… I will not go on and spoil the book here.

Read. The. Book. That is my review. If you are an Autism novice, it reads like any page turner you would pick up on the NYT Best Sellers list. If you are an educator or medical practitioner with a background in Autism, read this and critically game the “what if” moments. What could have/should have been done differently? What can we do differently as educators/practitioners going forward? If you are looking for depth on the NeurodivCalvinersity movement – well, this is slim… a few chapters. Why? We are the next chapter; the future! The subject matter experts… the Calvins, Bellas, Bens, Nikos and Huans; they are the future of Neurodiversity acceptance and celebration. When you are finished with this book, share it with a friend.

I share this review on the eve of a HUGE week in our metro DC community!  On Monday I will join several of our local subject matter experts at Ivymount, a local private school where Steve Silberman will be speaking.  On Tuesday I will attend the ASAN Annual Gala at the National Press Club where Nuerotribes will receive a book of the year honor.  Silberman was recently awarded the 2015 Samuel Johnson Prize for Non-Fiction, the first work of popular science to win the British award. Looking forward to a fantastic week with my #ActuallyAutistic friends as Ms. Elizabeth and Ms. Meghann Travel abroad to support #RapidPromptingMethod!

<3 Christie Vosseller

Photo credits: Self-Portrait, Christine Vosseller 2015; Neurotribes, Jeffrey Fisher NYT Sunday Book Review, 8/17/15; Calvin at Connections, Christine Vosseller 2015

The Voice….A RPM Halloween Tale

One of the most rewarding things about working with RPM clients is witnessing the process of students developing their “voice”. Each RPMer has a different voice that emerges loud and clear through spelling their thoughts and ideas on the letter boards. Although this voice is not necessarily audible – it is distinct and powerful. It has been a great privilege to watch Katerina find her voice. I first met Katerina and her parents in November 2014 when they came the GKTC offices for an out of town visit. After those first sessions, Katerina and her parents returned home and began daily practice on the letter boards. In subsequent quarterly visits, Katerina’s skills grew by leaps and bounds as a result of diligent practice! Each visit, Katerina comes ready to take on new skills. She is now communicating on both the laminated boards and keyboard. Her voice grows stronger every day. During her last visit, Katerina expressed her desire to advocate for other autistics.

Katerina, August 2015

Katerina, August 2015

Last week, Katerina sent me an early Halloween treat – an original Halloween story that she wrote for a school assignment. She currently receives home bound educational services.  Katerina has graciously allowed me to share her story with you.

The Voice
by Katerina Gogal

Once upon a time there lived a girl named Katerina. She was very beautiful and so sad, no one could communicate with her because she had no speech.  Katerina’s voice was trapped inside her head. She was brilliant but everyone treated her like she was stupid. Not having speech was harmful, she was perceived as not having any language, oh how wrong they all were.  Language and speech are not the same! Katerina developed such anger, so many insensitive cruel people said such horrible things about the girl in front of her, thinking she did not understand.  People who were suppose to educate the girl did not believe she had any potential.  Such a sad life the girl had and oh how lonely. Imagine a world where you have no one but yourself to connect with,  how many people could survive? Katerina did. Katerina learned to communicate her thoughts through RPM. Some people still doubted her, fools.

RPM gave Katerina the strength and drive to find a voice.  She yearned to find a way to show the world how smart she was. She needed speech to show them. On Halloween night, Katerina woke up with a brilliant plan, she was going to make a magic potion that would allow all the words in her head to spill out of her mouth. She jumped out of bed, lite a candle for some light and scrambled around her bedroom frantically for her book on magic potions. Where did she last see it? Yes, under her bed! Katerina pulled out the book and turned to the drink some speech potion page.

Katerina carefully read the directions, this recipe looked yummy. She quietly went downstairs and gathered her ingredients, sugar, water, fresh lemons and food coloring.  She ran up to her room, mixed the ingredients together while saying the magic words     ” talk! speech, turn on” , she said the magic words in her head three times and then gulped down the drink that looked like pink lemonade and smelled like sour lemons. The potion was wet and smooth and even more delicious then Katerina could ever imagine. Puffs of steam came out of her mouth and ears. Did it work? Katerina was not sure at first but then all of a sudden she felt different. Katerina opened her mouth and out spilled such beautiful words! Ecstatic to hear speech come out of her mouth, Katerina frantically began labeling everything in her room. She was so excited and wanted her parents to hear her speech too.

Her parents were in a deep sleep, she gently nudged her mom and waited for her mom to wake up. When mom woke up, she looked at Katerina and asked “what’s wrong Katerina?” Katerina smiled and said “nothing is wrong mom, things couldn’t be better!”  Mom jumped out of bed and turned on the lights. She hugged Katerina and burst into tears. Dad woke up and said “what is going on?” Katerina began talking and now dad was speechless. The world seemed perfect and no one doubted Katerina’s intellect.

Katerina made it her life’s mission to give voices to all non speaking kids, she never wanted any child to be treated as cruelly as she had been. Non speaking kids are underestimated by the world! Going to bed that night Katerina realized advocating for non speaking kids was necessary and could be accomplished with speech, a letterboard or a keyboard. To say speech is better then a letterboard is wrong, a letterboard is a voice! Katerina undid her potion, she realized she loved herself the way she was. It was not her that needed to change, people need to accept and learn RPM and teach non speaking kids like they do regular kids. Now is the time for change, watch out world Katerina has found her voice!”  KG

Look out world indeed! Katerina is currently using her voice in self advocacy efforts asking to be included in regular education, in school, with her peers. Thank you to Katerina and her parents for sharing this story. Your message is loud and clear and we are listening!
~Elizabeth and Katerina

Liam on Desegregation – Lessons learned from Ruby Bridges

Our last blog post featured Angie Paquin as our guest blogger, describing her work with her son, Liam, on the letter boards.  In today’s post, we present some of Liam’s work with his mom!  I have often looked at this picture of Ruby Bridges and thought of the courage it took for her and her family to fight for equality and inclusion and how it is analogous to the recurring plea I hear from my autistic RPM students to be included in general education. Clearly, Angie and Liam were thinking along the same lines so Angie created a a lesson Ruby Bridges and her story for Liam.

US Marshals with young Ruby Bridges on school steps.

US Marshals with young Ruby Bridges on school steps.

Here is Liam’s essay on Ruby Bridges and school desegregation in the South.

INJUSTICE WAS ROBBING AFRICAN AMERICANS OF EQUAL EDUCATION.  AFRICAN AMERICANS WERE SEGREGATED IN SCHOOL.  MIGHTY EFFORT HELPED TO BRING ABOUT CHANGE.  ONE PRINCIPAL TURNING POINT WAS FRIGHTENING, HARD TO BELIEVE, BUT TRUE.  RUBY BRIDGES WAS A LITTLE GIRL WHO STOOD UP FOR DESEGREGATION IN SCHOOLS.  SHE ATTENDED WILLIAM FRANTZ ELEMENTARY, A FORMERLY WHITE SCHOOL, AS THE ONLY AFRICAN AMERICAN STUDENT.  ALL OF THE WHITE STUDENTS WERE REMOVED FROM THE SCHOOL BY THEIR PARENTS IN PROTEST.  ONLY ONE TEACHER WAS WILLING TO TEACH HER AND RUBY LEARNED FROM THIS TEACHER ALL THROUGH HER INTERESTING FIRST YEAR IN THE SCHOOL.  

RUBY UNDERSTOOD INJUSTICE.  MASTERING SUCH A DIFFICULT REALITY MUST NOT HAVE BEEN EASY.  ONLY SOMEONE WHO HAS EXPERIENCED DIFFERENCE HAS AN UNDERSTANDING OF REALLY HARD LIFE.  HAVING TO PROVE THAT YOU DESERVE EQUAL EDUCATION ILLICITS FEELINGS OF LINGERING SORROW NO ONE CAN TRULY UNDERSTAND.  MY INTEREST IN HAVING EQUAL EDUCATION IS SIMILAR TO RUBY.  I HAVE TO SHOW MY COMPETENCE IN ORDER TO BE INCLUDED IN REAL EDUCATION.  THIS IS INJUSTICE.  I SOMETIMES FEEL UNDERESTIMATED.  I LIVE WITH A REALLY HARD SITUATION.  I HAVE NO OPPORTUNITY.  MY NORMAL PEERS HAVE OPPORTUNITY HANDED TO THEM.  I FEEL THIS IS DISCRIMINATION. HUNDREDS OF AUTISTIC PEOPLE ARE BEING DISCRIMINATED AGAINST.  I WANT RACISM TO END.  I WANT DISCRIMINATION TO END.  LIFE NEEDS TO BE VALUED REGARDLESS OF THE HUNDREDS OF EXAMPLES OF INDIVIDUAL DIFFERENCE.  I NOT ONLY AM MARGINALIZED, I IMAGINE I AM LIVING IN A PRISON. GIVE LIFE TO COUNTLESS OTHERS LIKE ME.  I LIVE WITH INJUSTICE LIKE RUBY DID. I MATTER TOO.  MALIGN INJUSTICE FOR ME PLEASE.

To cap off her unit on Ruby Bridges and school desegregation, Angie presented Liam with a lesson on ekphrasis as illustrated by this painting by Normal Rockwell titled “The Trouble We All Live With.” Do you know what ekphrasis means?  Well, you are about to find out! 

The-problem-we-all-live-with-norman-rockwell

The Problem We All Live With

To start her lesson, Angie asked Liam if he knew what ekphrasis meant. To her surprise, he said “yes”! She asked him to define it and he spelled IT IS GIVING VISION TO REALLY GREAT ART.  Surprised by this fantastic answer, Angie asked Liam how he knew what ekphrasis meant. He responded,  I READ IT ON YOUR PHONE RECENTLY WHEN YOU WERE MAKING BREAKFAST. Wow! (Note to readers and self! Watch what is on your phone!) It turns out, Angie did have an article on ekphrasis on her phone which she used to create his lesson! For those of us who may need further definition of  ekphrasis, it is one art form expressing the meaning or spirit of another art form. For example, a sculpture depicting some element of a film or vise versa. (One of the best part of creating RPM lessons is how much you will learn in the process! Thanks Angie and Liam, I did not know about ekphrasis but will be creating my own lesson on it soon!)  After further teaching about ekphrasis, Angie challenged Liam to create an ekphrastic poem.   

Here is Liam’s ekphrastic poem.

INJUSTICE HAS IMMEASURABLE HATE
WHEN LIFE MAKES MAN HATE
HIS INTIMIDATION MAKES LIFE IMMEASURABLY SUFFER IN UNTHINKABLE WAYS.
IMMEASURABLE SUFFERING FILLS MAN WITH HATE SO STRONG THAT NO ONE IS SAFE.
NOT EVEN A LITTLE CHILD.
REMEMBER MAN HAS LIMITS IRRESPECTIVE OF HIS CIRCUMSTANCES.
CIRCUMSTANCES HAVE LIFE LIMITS.
NORMAL HARDSHIPS GIVE MAN CIRCUMSTANCES IRRESPECTIVE OF HIS ABILITY.
LIFE CAN MAKE PEOPLE HATE.
INJUSTICE IS MANS TROUBLE.
REMEMBER, NO ONE IS SAFE WHEN INJUSTICE IS SERVED.
HATE MAKES IMMEASURABLE SUFFERING NO ONE SHOULD ENDURE.
GIVE LIFE TO MAN SO THAT MAN IS MOSTLY MIRRORED IN HIS LIFE STRONG.
GIVE MAN LIFE OF EQUALITY.
UNDERSTAND LIFE HAS IMMEASURABLE INJUSTICE,
MAN HAS IMMEASURABLE STRENGTH.

Cognitive lessons are essential in RPM.Parents sometimes tell me that they don’t understand why it is so important to use lessons. They tell me they just want to know what their child is thinking and feeling. These two lessons are a perfect example of why they are so critical to RPM. Not only are they a means of education, which our kids intensely crave, they provide the framework for communication. Through this history lesson on Ruby Bridges, Liam learned about discrimination, segregation, the value of education and the courage that individuals have displayed to fight for their right to receive an education. This lesson gave Liam information about these issues and an opportunity to freely express his opinions about these issues; opinions that we would not necessarily have ever known had the topic not been presented! Angie took it a step further in a second lesson, introducing ekphrasis: presenting Ruby Bridges’ struggle through the lens of art, teaching Liam about Rockwell, ekphrasis, and giving Liam a means to further express himself through an ekphrastic poem. I don’t know about you, but I certainly learned a lot about how Liam thinks and feels!

Once again, we are so grateful to Liam and Angie for sharing their experience, their words, and inspiring all of us to continue learning and communicating through RPM!
~Elizabeth, Liam and Angie

11694897_10153398055474174_5965758735753535736_n