The ABC’s of Inclusion

Last month we were delighted to participate in the Institute of Communication and Inclusion held in Columbia, Maryland. We presented to a great audience of people who are dedicated to serving nonspeaking and minimally speaking individuals. We got to collaborate with so many progressive thinkers and meet some of our inclusion super heroes, Cheryl Jorgeson and Paula Kluth! Our own Meghann Parkinson and skilled Atlanta practitioner, Kelsey Aughey joined me as we held daily skill building workshops for 20 plus spellers and their communication partners to help practice new skills. Since the focus of the conference was on inclusion, we decided to put our groups of subject matter experts to work!

Practicing independent typing with Philip!

Practicing independent typing with Philip!

One of our groups focused on typing skills. This group was challenged to come up with the ABC’s of inclusion!  Each student, Philip, Mike, Camille and Matthew took turns writing a sentence for each letter with the keyboard held for them.  After typing their sentence, each practiced typing one or more of the words independently. All made fantastic progress!  Our friend, Philip Reyes, reported that this was one of his favorite parts of the conference and wrote about his experience in his blog, Faith, Hope, Love and Autism.  

Actual inclusion opens doors.
Be patient with us.
Caring people make it successful.
Don’t give up.
Excellent expectations.
Friends, need I say more?
Give us lots of patient encouragement.
Hear us when we spell.
In day, talking to friends opens my world.
Just like typically functioning,need support.
Keep believing in us.
Learn challenging subjects.
Must be proud.
No baby talk.
Open hearts please us.
Praise our achievements as they are yours as well.
Question your assumptions.
Remember we are just like you.
Spelling is our way out.
Treat us with respect.
Understand totally intelligent and eager to learn.
Voices must be heard.
Wait for us to finish our thoughts.
Xylophone can’t make open words and it still is in the orchestra.
You are needed for our success.

Zero tolerance for non believers.

One of our other groups was tasked with giving advising educators on inclusive practice. Not only did the come up with some great tips, they also collaborated on an acrostic poem!

Huan: INCLUSION IS LIKE ACCESSING ALL FACILITIES AVAILABLE TO EVERYONE. THERE IS A NEED FOR SPACE WHERE EVERYONE FEELS PROTECTED. CAN I SHARE MY SPACE WITH EVERYONE? YES. LEARNING TO SHARE MEANS KEEPING TALKERS ENGAGED IN MY TYPING.

Nadia: BE ALL CARING, DO NOT YELL

Harry:  BE OPEN TO RECREATE INDIVIDUAL EXPERIENCES…SOME NEED CERTAIN ACCOMMODATION.

I think everyone should be included.
No one should miss each opportunity.
Children all deserve a good start.
Learn to share with all others.
Understand strengths.
See the intelligence underneath.
Instead of treating me like not smart, treat me like smart.
Obstacles may come, they make us stronger.

No child left behind!

Finally, we finished our third day of skill practice by creating a Pokemon Go inspired game to take our skills out in the community in our own game of Communication Go! The object was to “capture” (by snapping a picture) an introduction, a conversation, sensory aids, a story ~ any form of communication or comfort! The more you communicate, the more “experience points” you gain!  We all had a blast meeting folks all over the conference center and loved sharing our finds!
Lucas and his mom capture a sensory soft t-shirt AND an introduction! Bonus Points!

Lucas and his mom capture a sensory soft t-shirt AND an introduction! Bonus Points!

Once again, we find our students are our very best educators! So inspired by their messages of inclusion and we can’t wait to put them into practice. Feel free to share their great tips for inclusion – just in time for back to school!
~Elizabeth, Meghann, Kelsey and our friends at the ICI

Advocacy in Action – Explaining NonSpeaking Autism to the Police

We are continually impressed with the fantastic accomplishments of our kids who learn and communicate by spelling on the letter boards!  A few weeks ago Meghann Parkinson, one of our fabulous GKTC RPM Providers, was working with Gordy Baylinson, discussing the Autism Safety Fair for Montgomery County, Maryland, to be held Friday, May 20, 2016. Meghann asked Gordy if he would like to write a letter to the police officer in charge of this event. Gordy jumped on this opportunity and typed this letter below over two sessions with Meghann. Not only is this a phenomenal letter, it is also informative and offers insightful guidance for those who are not familiar with nonspeaking autistics.

Dear Officer Reyes,

My name is Gordy, and I am a teenager with nonspeaking autism. I prefer this term rather than low functioning, because if I am typing you this letter, which I am, I am clearly functioning. I felt very strongly about writing you today, to give a little extra insight on
the disconnected links that were supposed to make my brain and body work together in harmony. But, they don’t and that’s okay. You see, life for me and others like me is a daily game, except not fun, of tug-of-war. My brain, which is much like yours, knows what it wants and how to make that clear. My body, which is much like a drunken, almost six foot toddler, resists.

This letter is not a cry for pity, pity is not what I’m looking for. I love myself just the way I am, drunken toddler body and all. This letter is, however, a cry for attention, recognition and acceptance. With your attention, I can help you recognize the signs of nonspeaking autism. If you can recognize the signs, then you will be able to recognize our differences which then leads to the understanding of those differences, which brings us to the wonders of acceptance. With these simple ingredients, together we can create a safe, welcoming and happy environment for both autistics and neurotypicals alike.

The physical signs to look for are flapping hands or some other socially unacceptable movement, words, noises or behavior in general. That’s uncontrollable. With a mind and feelings much like everyone else’s, do you truly believe we like acting that way? I don’t, that’s for sure.

If one becomes aggressive, with biting or hitting for example, obviously protect yourself but there is no reason to use aggression in return. Remember, this aggression, is an uncontrollable reaction, most likely triggered by fear. Nothing means more to people like us, than respect. I can tell you with almost one hundred percent certainty the situation will go down a lot easier with this knowledge.

I have nothing but respect for you all and everything you do. If it weren’t for you, I would never have had this opportunity to advocate for myself and other autistics. I look forward to meeting you.
Sincerely,
Gordy

Gordy’s note has since been shared widely on the web!  Officer Reyes was so moved she sent this response back to Gordy and his family. Here is (an abridged version) of her response.

Evan/Dara/Gordy,
Thanks for reaching out to me. I loved reading the letter!! I would love to meet all of you. I would love to have the letter read and Gordy be present for my recruits instruction.

In the past year we incorporated our MCPD Autism Ambassador Jake to speak directly to the recruits about his experience with law enforcement as well as his behavior and how it’s important for law enforcement to be aware and understanding. I think the recruits would benefit from Gordy’s letter and Gordy as as well. I instruct the recruits and current officers alike that Autism is a spectrum.

love the non-speaking vs. low functioning. I will remember that from here on out, it’s more than just semantics. I always share with the officers I teach to “never underestimate” a person with Autism. I also teach them to not associate non-verbal with a lack of intelligence. I continuously stress those two thoughts to my officers. Gordy will help to reinforce this idea yet again. I am the fortunate one, in that I am the one that has the opportunity to see first hand to never underestimate persons with Autism/IDD. This is yet another example.

It’s my job to showcase those individuals with the hopes of sending the message home to the officers that will have the interactions in the community. I would love for Gordy to join Jake in our recruit instruction. I do stress that Jake speaks for those that can not speak. However, like I mentioned, I really stress that those that can not speak, also have so much to offer and should also not be underestimated.

I would love for you to attend Autism Night Out and have you and Gordy meet Jake and vice versa. Plus, I would love to meet Gordy in person and have our officers meet Gordy as well. Thank you for sharing this with me. I would be so proud for you and your family to see the faces of our recruits when they receive the Autism/IDD instruction.

Reach out to me anytime. I would love to see more from Gordy!
Thanks for making my night.
Officer Laurie Reyes
Special Operations Division

This is autism advocacy at it’s best – education and advocacy by the experts – autistic individuals!  Stay tuned, this is just the beginning of this story with Gordy, more to come soon!
~Elizabeth, Meghann and Gordy

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.

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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.

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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.

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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?

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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.

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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.

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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.

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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.

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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.

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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!

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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.

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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!

❤ 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