Letterboards, not just life changing.. life saving

I am so excited to introduce Diane Belnavis and Brent Sullivan as guest bloggers!  We formed an instant friendship when I met Brent, Diane and Dylan at the TASH Conference in Portland Oregon in November 2015. They have one of the most beautiful stories I have ever heard and it keeps getting better and better with time.  I am so grateful to Brent and Diane for their willingness to share their story.  Be sure to meet Brent at the Nonspeaking CommUnity Consortium’s Motormorphosis Conference July 21-23, 2017!

Diane’s story:
In the spring of 1984, six years before my son Dylan was born, Brent joined our family. He is a non-speaker with autism and is now 48 years old.

Dylan (left) and Brent (right)

While in graduate school in Oregon in the early 80’s, I worked as the night manager of a group home for children with disabilities (yes, children. really). Brent moved into the home with four other children in 1982. He was thirteen years old. When I finished my degree a few years later and left my job at the group home, Brent came with me. By that time, we were close friends and I knew that there was no way I could leave him behind.

My son Dylan was born six years later. They grew up as brothers and have always been close, even though there is a 20 year age difference. When Dylan was in elementary school, he wrote an amazing story titled ‘My very own Rain Man’. It is the story of his childhood with Brent. They have created their own holiday family traditions together, and Brent has been there with Dylan through every one of life’s milestones.

Dylan was living in Portland, Oregon when Brent began using the letterboard three years ago. Of course I kept him up to date on the progress Brent was making, but until he saw Brent do it for himself, the reality of Spelling to Communicate didn’t really sink in. He met Elizabeth and the GKTC tribe in 2015 when they presented in Portland at the TASH conference, and months later decided to move back to Pennsylvania to learn letterboard with Brent.

Brent and Dylan – brothers in every meaning of the word.

Dylan became Brent’s official staff person last year and they now work on letterboard a few times a week (in between farm chores and planting sunflowers!). Last fall, Brent spelled to Dylan ‘Stop I am in need of medical attention’. Since then, for the last six months, Brent has been guiding us with spelling… through medical appointments, surgery, ultrasounds, cat scans, blood work and XRays. We have practiced scenarios, watched YouTube videos to prepare, and Brent has instructed us, by letterboard, what to say to the doctor in order to lessen his anxiety and keep his body calm through exams. I go into each test and appointment first, and explain to the doctor or technician the requests Brent has made and the trigger words to avoid.

Dylan was dedicated to learning to use the letterboards with Brent.

He has been unbelievable. He has been completely successful in completing everything asked of him. He has guided Dylan and me through each day as far as how he wishes to change his diet and his daily routine to improve his overall health. He has spelled ‘Do not offer me any sugar’, ‘Take me to the Y for exercise’, and even ‘No, I don’t want ice cream, I want a fruit smoothie for dessert’!

In March, he spelled to Elizabeth ‘Letterboard has saved my life’.

“THE SAD REALITY IS THAT MANY HAVE GIVEN UP ON ADULTS. OUR LIVES MATTER.”

Brent’s story:
MY DESIRE IS TO ADVOCATE FOR COMMUNICATION SUPPORTS AND HOUSING FOR ADULT AUTISTICS. LIFE IS WORTH LIVING NOW THAT I HAVE COMMUNICATION. ELIZABETH, COMMUNICATION JUST SAVED MY LIFE. I FEEL GRATEFUL BECAUSE I TOLD MY DOCTORS WHAT WAS HAPPENING. I AM WORRIED BUT BELIEVE IN THE DOCTORS AND MEDICAL INTERVENTION.

ELIZABETH, I AM THE MOST LUCKY MAN EVER. BUT THE ONES IN SILENCE ARE NOT SO LUCKY. THEY MIGHT NOT EVER BE ABLE TO TELL SOMEONE THEY ARE SICK. THEY MAY NEVER SAY I LOVE YOU. THEY NEED TO LEARN HOW TO SPELL ON THE STENCIL BOARDS AND LETTERBOARD TOO. TEACH THEM LIKE YOU TAUGHT ME.

ELIZABETH, I WAS THINKING ABOUT MY LIFE. I NEED TO MAKE SOMETHING OF MY TIME ON EARTH. THE WORST THING IS TO BE A VISITOR TO LIFE INSTEAD OF A PARTICIPANT. I WANT TO ADVOCATE FOR OTHER INDIVIDUALS WHO ARE TRAPPED IN THEIR OWN BODIES. THEY MUST FEEL THE SAME LONELINESS I DID. TIME TO JOIN THE CONVERSATION INSTEAD OF BEING THE CONVERSATION.

THE SAD REALITY IS THAT MANY HAVE GIVEN UP ON ADULTS. OUR LIVES MATTER. ELIZABETH, THIS IS MY MISSION NOW. THE ADULTS HAVE GONE SILENT TOO LONG. MY QUALITY OF LIFE HAS CHANGED DRAMATICALLY SINCE I STARTED SPELLING WITH DIANE AND ELIZABETH AND DYLAN.

ELIZABETH, NOT WITHOUT SPELLING WOULD I HAVE BEEN ABLE TO GET THE MEDICAL HELP I NEEDED. JUST HOW MANY HAVE DIED OR SUFFERED JUST BECAUSE THEIR OWN BROKEN BODIES CONDEMN THEM TO SILENCE?

ELIZABETH, THERE IS MUCH WE NEED TO DO. LET’S REACH OUT TO SILENT ADULTS AND TEACH THEM TO SPELL ON THE LETTERBOARDS. TEACH PARENTS, CAREGIVERS AND THOSE WHO WORK WITH MENTAL EDUCATION THAT ONE IS NEVER TOO OLD TO LEARN.

 

Elizabeth and Brent hamming it up!

Thank you to Brent and Diane for sharing their beautiful story, dreams and hopes with us. I am truly grateful to have you all in my life!  ~Elizabeth

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

We have a dream… celebrating MLK weekend in Atlanta

In celebration of Martin Luther King Day, we are reposting this blog from MLK weekend in Atlanta 2 years ago!  Wow!  It is amazing to see how far along these fantastic spellers and self advocates have come since then! The fight for communication rights is stronger than ever! ~Elizabeth

I returned from my second workshop in Atlanta on Martin Luther King Day, January 19, 2015. What a great workshop – 9 funny, smart, hard-working and thoughtful kids, great parents eager to use…

Source: We have a dream… celebrating MLK weekend in Atlanta

Inclusion ~ Evan, Shine Your Light!

I wanted to finish off 2016 with one of our favorite moments of the year. Prepare for some guaranteed happiness as you witness what happened when one of our clients was given the opportunity to conduct his school choir. Evan is one feisty, adorable guy who never fails to make me laugh during our sessions together. His communication through spelling is strong – but Evan has a way of getting his point across with or without the letterboards! Evan’s video of his conducting debut went viral but when his mother told me the entire story,  I knew you all needed to hear it too!  Evan’s mom, Elizabeth Zielinski, agreed to share Evan’s story with us as today’s guest blogger.  Enjoy and kick off the New Year by sharing this story of joy!!  ~Elizabeth, Elizabeth & Evan 

My son, Evan, is 11 years old, autistic, and unreliably verbal. He is in fifth grade in public school, placed in a self-contained classroom, with various opportunities throughout the day where he is included with his neurotypical peers in the general education setting.

Some of Evan’s behaviors prevent him from being fully mainstreamed into general education classes for safety reasons. But with our insistence and with our school’s cooperation, he is included in many experiential learning opportunities and also in extracurricular events. One of those events was the recent fifth grade winter chorus.

His dad and I were told he would be included last Fall, and we hesitated to give permission because we didn’t know how well he would do with the sensory stimulation. But we had a lot of faith in our school’s remarkable music teacher, Mr. Charlie Ring, and trusted that he would ensure Evan’s experience was a good one.

Leading up to the event Evan grew excited and told us that he was going to be a guest conductor of one song. He showed us his plan for approaching the front and leading the chorus.  We were naturally entertained and thrilled to expect this.

When the afternoon school assembly performance arrived, I waited expectantly to see Evan’s debut as conductor. To my disappointment, it didn’t happen. I approached Mr. Ring to ask why, only to learn that it was never part of the program, but a way that Mr. Ring was helping Evan to participate in rehearsals. Evan didn’t seem to realize that it wasn’t going to happen for the actual performance, or if he did, his unreliable speech meant we didn’t know what he expected or hoped to have happen.

And that’s when the magic started. After I asked my question of Mr. Ring and we realized the misunderstanding, Mr. Ring only asked if I thought Evan would be able to do it without a formal rehearsal. I said I thought he would. Right then and there, Mr. Ring starting planning the changes to include Evan as guest conductor in the evening performance for the community.

Prior to the second and last performance, Mr. Ring explained to the rest of the fifth graders what the change to the evening program would include:

Missing from that video was the round of applause Evan got from his classmates before the announcement that he would be conducting, proving that acceptance comes naturally to kids when given the opportunity.

Evan waited patiently backstage, but you can see the anticipation on his face.

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And then, show time. It was the second performance of the day, he had been wearing his uncomfortable show clothes for hours, and he had to stand on risers and pay attention; even though singing along was not an option for him. Anyone who knows him would tell you, all of that alone was a lot to ask. But toward the end of the show, this happened:

No one had seen him do this before, but he showed us that it was worth the wait. As of this writing, the video has been viewed over 50,000 times on Facebook and another 1,300 times on YouTube; and has been shared hundreds of times worldwide. Based on the comments I’ve received; it has touched a lot of people.

What I love about this is not just that my son had a moment of joy and celebration. It’s also that everyone else shared in that with him. It wasn’t just the joy on his face in the video that touches me, it was the appreciation of his fellow fifth graders and the audience when they watched him have his starring moment. There are some chuckles, but not at Evan’s expense.  They are just seeing him have an entertaining experience.

The most important thing we have learned about inclusion through this experience is that it doesn’t mean building events around Evan’s needs, oversimplifying his experience, or putting him into a fully neurotypical environment and seeing how long he can last before extracting him. What it does mean is being open to and creative about those moments that allow him to learn and grow like any student wants to do. That requires seeing him with the best of expectations about what he can do, and trusting that no matter what happens, everyone will grow from it.

Finally, the awesome Mr. Ring sent Evan a celebratory gift after the fact: he now owns the conductor’s baton he used that evening as a reminder of his starring moment.

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Creating Social and Communication Opportunities

We are often inspired by the creative strategies our families find to make education and communication on the letter boards interesting and meaningful. During a Skype consult, Jasmin explained how she created social and communication opportunities between her son, who spells to communicate, and her nephew. Jasmin graciously agreed to share her fantastic strategies as today’s guest blogger!

Guest blogger bio: Jasmin Dutton is one of our GKTC moms from Quebec, Canada. She has been an avid homeschooler to both her sons for the past 7 years. After months of attempting to teach her son to point on her own, Jasmin and Wyatt took off on the boards after observing a GKTC workshop in March 2016. Jasmin enjoys gardening, and the outdoors in all seasons. She likes to emphasize a love of nature, curiosity and social contribution in her teachings.

Beyond the Boards

What has always attracted me most to Growing Kids Therapy Center is the emphasis Elizabeth and her team places on community building and collaboration amongst their students. This is something I’ve always wanted for my son but due to so many challenges, have struggled to create.

This past summer I have been determined to make it happen. So I took everything I have learned from coaching my son on the boards and put it into helping him connect socially.

Tolerance – for socializing: not outside the house, zero with strangers, tricky with same aged peers, and requiring structure and support. So it would have to be at home, someone older and familiar and well planned. There was also no way Wyatt would tolerate being left alone with anyone. This was not going to be respite. I would have to be present and directing the engagement.  Luckily, my 17 year old nephew lives nearby so I got in touch with him and made arrangements for him to come by for an hour a week to “hang out” with Wyatt and me.

Skill Goal – the challenge here was socializing so it would be over the top to work simultaneously on learning new physical skills. We’ve stuck to familiar activities that Wyatt excels at, such as cooking and swimming and have participated in them as a team, with me coaching both guys in the activity and creating opportunity for them to work together.  I was able to model for my nephew how to interact with Wyatt

Cognitive Goal – having always homeschooled my son, conversation can get pretty stale around here. I wanted my nephew to bring in conversation that would expose Wyatt to what teens are up to; the music, hobbies, and interests. Conversations were started around where my nephew was going to college in the fall, what his course load looked like and what he had to accomplish to be accepted into his program.

Response Level – well, response level wasn’t something I had thought too much of in the beginning, hoping really, that Wyatt would just stick around, but it was something that developed organically over time.  During one occasion, I came up with an activity Wyatt and his cousin could do together.  I would ask his cousin questions regarding his interests, he would then write his answer in invisible ink and Wyatt would use a developer pen to reveal the answer (we have linked two cool options if you want to try this at home!). Wyatt was pretty enthusiastic about the activity and I asked if he wanted me to ask him questions as well, and he agreed. So I quickly ran to get his board and took turns asking the guys each a personal interest question, trying my darndest not to cry at what I was witnessing.

This has been such a huge success for Wyatt that I have recently hired another teen (still familiar but less so) to come by during the week, and am using the same goals with her as I do with my nephew. I still need to remain present and help guide the interactions but my son now has the opportunity to collaborate. This fall, I will definitely be planning out more ways to use the boards during their times together. The experience has given me a burst of confidence and motivation to look closely at the opportunities I want for my son, envision what that could look like for him and make it happen.

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Jasmin, thank you for sharing your fantastic ideas for developing new relationships for your son! For many of our kids, building in opportunities for peer communication requires creativity, I know so many families will benefit from these great strategies!

~Elizabeth and Jasmin

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

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