Chess Friends Forever

Hi everyone!  My name is Karen Dorula and I’m an occupational therapist at GKTC.  Elizabeth has challenged us all to jump onto the blog.  I’m very excited to be able to share all of the wonderful chess that has been happening here!

I started teaching chess in January 2016 after one of my letterboard clients, William, asked me to teach him “something hard.”  I thought of many different challenging topics, such as the periodic table of elements or the physics of outer space, but when I thought of chess, a quote from one of my favorite movies popped into my head: “Knight to e4.”  (Yes, it’s a Harry Potter quote!)

Harry Potter Ron

I went online and immediately started learning everything there was to know about something called “Algebraic Chess Notation” (ACN).  ACN is a system of letters and numbers that correspond to moves on a chessboard.  Most players use ACN to record their moves in a game so they can review it later.  I thought it would be a perfect way for William to communicate the move he wanted to make and since I’m an occupational therapist, I saw this as a great opportunity for him to practice his motor skills as well.  

ACN Board

There was one slight problem.  I didn’t really know how to play chess.  I had a basic understanding of how the pieces move, but that was it.  I reviewed the fundamentals of chess by myself, and then started teaching it to William.  We practiced simply moving the pieces to a targeted location.  He would spell out the ACN on a letterboard and then I provided him with the least amount of assistance to move the piece.  I continued to teach him more advanced concepts by staying only one step ahead at any given moment.  This became a problem as I realized just how quickly he was learning.  Something that would take me an hour to learn took him only a few minutes.  For example, when capturing, you spell out the symbol for the piece you want to move, the file it’s currently on, an x to indicate the capture, and the square you want it to move to.  So, if you want to capture a piece using your rook, it might look something like, Raxg5.  This took me a longer to learn than I care to admit, but after a few minutes of practice, William spelled, “MAKES SENSE TO ME.”  

William loved learning chess so I dove in head first.  I spent hours a day playing chess on my phone and watching videos online that I later turned into lessons.  After a few weeks, he sat down to play a game with his dad.  His parents noted how regulated he was during the game.  His body was able to stay extremely calm because his brain was so engaged.  As I teach more people to play, regulation is a common result of chess.

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William’s first time playing against his dad.
(From left to right: William, George, Karen)

I have now taught dozens of students how to play.  At first, I didn’t realize just how perfect chess can be for people who spell to communicate (thank you to Elizabeth for seeing the potential!).  Chess is a hobby that can be played throughout a lifetime and you can always learn something new.  Since there are small “mini games” you can play, you can practice even if you only have 10 minutes.  It’s a fun way to get on the letterboards with family members and practice skills.

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Huan and Ian playing a Knight Game, with Huan’s brother and Ian’s dad holding the letterboards.
(From left to right: Thuy, Huan, Ian, Eric)

Chess is also the best equalizer.  It doesn’t matter your age, gender, race, language, socioeconomic status, or diagnosis.  During a discussion about chess as an equalizer, Dustin wrote: “THAT WAS WHY I WANTED TO LEARN HOW TO PLAY WITH THE LETTERBOARD.  PLAYING WITH THE LETTERBOARD IS A WAY TO PLAY WITH YOUR MIND INSTEAD OF YOUR BODY.”

Dustin chess PNG.jpgDustin playing against a friend.

Chess provides the perfect opportunity to meet new friends.  Here’s a conversation from a chess sessions with Ethan and Dominic:

E: HI, MY NAME IS ETHAN.  KAREN HAS TOLD ME SO MUCH ABOUT YOU.  MAY GO PROFESSIONAL WITH CHESS.  KIDDING.

D: THAT WAS FUNNY.  MY NAME IS DOMINIC.  I JUST STARTED PLAYING THIS WEEK.  I AM REALLY EXCITED TO PLAY.

E: THANK YOU.  MAKES ME HAPPY TO MAKE A NEW FRIEND.

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William, Ethan, and Dominic play against each other in pairs or have “Chess Club,” which they have named One For All, so they can learn and practice drills together.  
(From left to right: Rabun, William, Ethan, Karen, Dominic)

 

I’m grateful to William for challenging me to learn something hard.  Chess didn’t turn out to be very hard for him, but it has become a hobby that he loves.  Chess combines motor, communication, and friendship, which is an OTs dream.  My absolute favorite part of chess is the CFF – Chess Friends Forever – that have been formed! These friendships are what push me to stay up to speed with my students and continue to improve with every session.

I will become more active on the blogs to share information and other activities that we’ve been doing at GKTC.  Until next time!

~Karen

 

 

Diagnosis Disruption: Debunking the Myths of Non-verbal Autism

Autistic individuals are the true autism experts. Matthew Lager’s TASH Talk debunking the myths of non-verbal autism is a must read for anyone who has an autistic child or works with autistic individuals. Matthew uses a letterboard and keyboard to spell to communicate. He prepared this presentation for the 2016 TASH conference with his mother over a several weeks. Due to the 10 minute time limit of the TASH Talk, Matthew’s speech was read aloud for the presentation with spelling closing remarks live. Matthew’s goal is to challenge people to rethink autism and understand the capabilities of people who have been labeled as “low functioning”.  ~Elizabeth & Matthew  

Matthew

Thanks for letting me speak today. Thanks to TASH for including me and for your commitment to advocating for an easily dismissed segment of society.

I am going to share my experience of being erroneously mislabeled as low functioning and of low intelligence. My story is representative of thousands of others labeled as low functioning. My life changed in ways most can not comprehend the summer of 2014 when my parents took me to Herndon, Virginia to see Elizabeth Vosseller. My hero, Elizabeth, introduced me to the letterboards. Through a letterboard and now keyboard I am able to communicate my true thoughts by spelling them one finger at a time.  I wrote this presentation on a key board tapping the letters one at a time.

The topic of my talk is:  Diagnosis Disruption: Debunking the myths of non-verbal autism.

Many people view me as being stupid, emotionless and without the ability to understand other people’s feelings. It is not a surprise because scientists describe autistics so inaccurately. I am here to tell you we are much more complex than you believe and also more ordinary than you realize. We are confusing and difficult to understand because our exterior doesn’t match our fully intact brain.  We have sensory problems that make us look out of control. Some of us have voices that don’t say what we mean. Others have motor planning impulse control issues that make us do things we didn’t mean to do.  In spite of the tremendous challenges we are all just like you with complex thoughts and feelings.

Scientists typically look at three key areas when determining whether someone fits the criteria for further screening for autism spectrum disorder.  The three areas are impaired social interaction, impaired communication and restricted or repetitive behavior.  They often assume that functional problems of speech, social interaction and unusual behavior are indicative of low intelligence and poor cognitive function. They create checklists to define the behavior we do that is not typical without understanding that many of these behaviors are in fact motor based rather than a cognitive deficit.

At my previous school, I was not allowed to spell to communicate and therefore was unable to change their incorrect assumptions of me.  They were unable to see beyond my atypical behavior. As a result, I was taught at the first grade level last year.  My new school was open to seeing me differently and allowing me to use the letterboard all day.  I am now taught at grade level which is eight grades higher than instruction at my previous schools. I wish they could see me today and perhaps treat others with so called low functioning autism differently.  This school move only occurred when a group of experts in the school system were willing to suspend their preconceived ideas about autism. I hope you are willing to do this also by hearing what my friends who are here and I have to say.

I am going to ask you to look at a few more examples from my perspective.

While on the surface these scientific descriptions seem accurate, I am going to describe how what you see in many autistics is not the full or true picture.

1)  Wild erratic movements without purpose: When I look most dysregulated I am reacting to overstimulation and sensory overflow. It is impossible for anyone to evaluate my internal state when just looking at my out of control body. For example I become very dysregulated, cover my ears and make an odd sounding noise when people sing happy birthday.  The out of tune singing, especially my mom’s voice (just kidding mom), makes me feel anxious and covering my ears and making noise muffles the sound. When people see my reaction they assume I don’t want to be part of the celebration and stop including me when in fact I love birthdays and just need a coping mechanism to participate.  When I appear totally out of control, I am internally trying to focus and calm myself during an overly sensory stimulated situation.

2) Inability to initiate or sustain a conversation: Experts claim low functioning autistics are unable to hold a conversation. It is true that I am unable to do it verbally. However I can have full and meaningful conversations with my friends and others if I am able to type my part of the discussion.  I have three friends in the room today who communicate the same way I do.  I wish scientists or disbelievers would watch our interactions and see firsthand the complexity of our discussions, the way we support each other and how emotionally connected we are to each other and the world.  One of my friends dreams of being a writer. Another really wants a girlfriend.  All are interested in a full life with the same opportunities for education, living arrangements, jobs and community that any other person wants.

3) Odd, repetitive behavior: My behavior that experts describe as repetitive and without purpose is actually very useful in calming a highly stressful situation. For example, I often ask repetitive questions when I am nervous about a transition or don’t know how to get the words I want to say out of my mouth.  I understand why experts think these behaviors are odd but understanding the reason we do them is crucial to understanding us.  A good example of this is my obsession with the Wiggles. I talk about them all the time but can’t stand them. As annoying as it is to be 15 and talking about a preschool music group, reciting their lyrics does calm me down when I am stressed.

4) Poorly developed imaginary play: I have been told those with autism have no imaginary play skills. If only someone could get inside my brain you would see how I am always creating stories to pass the time when I am being ignored. I create stories about people traveling around the world and meeting famous historical figures. One of my favorites is of my friends going to meet Abraham Lincoln and talking to him about emancipation of those in society who are disenfranchised. So, I will continue to fail the tests researchers use, like putting plastic figures in front of me and asking me to pretend some contrived story.  However, when I see the figures I’ll pretend in my mind the figures are Lincoln’s soldiers who may have lost this one battle but can still win the war.

5) No or limited interest in social interaction: I understand why someone thinks I’m a loner and prefer isolation. However this could not be further from the truth. In social situations I sometimes leave the room when others are trying to interact with me because i am so excited and my body experiences a rush of such intense happiness that I launch like a rocket out of the room.  When I come back unfortunately the social interaction is lost and even worse than losing that one opportunity I likely pushed the person away for good.  This is one of many examples of how my outward behavior doesn’t match my strong insatiable need to be with others and how researchers don’t understand me. I want friends more than anything. I am lucky that now for the first time I have a group of people who I feel close to and who I feel understand this.

Every time someone with autism is allowed to share what goes on in his mind it gives experts more information and insight into the complicated inner workings of those of us who are so misunderstood. Hearing from Autistic individuals is integral to scientists understanding us and our critical and empathetic thoughts. By doing so, they can study the huge gap between the vast amount of intelligent, intricate, and inventive thoughts that we have in our minds and our difficulty sharing them in a typical way.

In closing so called experts need to start by assuming that their patients with autism are truly thoughtful and intelligent. Entering the patient/clinician relationship with this shift in thinking is the most important first step. Allowing us alternative forms of communication combined with researchers commitment, dedication and hard work we can actually make changes to research protocols that will make a difference in my life and others like me.

So, death to the idea of the empty headed autistic. I hope that people will see me and my friends beyond our exterior and see us for the people we really are.

**Note: we had blue tooth connection issues with the keyboard during the presentation resulting in repeated letters.  We edited the additional letters below for readability. 

I am happy to be here and have a chance to tell our story. Please spread the word and let others know.

The Value of Communication

Last week we promised more presentations by our students at the 2016 TASH Conference in St. Louis.  Ian Nordling is our next self advocate presenting his thoughts on the importance of communication in his TASH Talk.  Ian has been spelling on the letterboards and keyboards for over 2 years and is now beginning to type independently. He is a tenacious advocate for access to communication.  We are sure Ian’s message will resonate you just as they with the audience at TASH. ~Elizabeth

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Ian (center) poses with his cousin Kelsey Aughey (left), one of the fantastic ACTS Professionals in the GKTC Professional Network serving kids at the Hirsch Academy in Atlanta.  Ian and Elizabeth Vosseller (right) have worked together since 2001.

Thank you for being here today. I am Ian Nordling. I am here today to talk about the beauty of communication. I am uniquely qualified to talk about this because I did not have a way to talk until three years ago.

This might sound impossible but it is true. I could not communicate more than a few words. Then I learned to control my arm so I could spell my thoughts on a letterboard. These words took the world for me. I could finally express myself after all of these years. You cannot imagine a greater triumph! The world opened up for me through those words.

I have been pleased to gain entry to the world through the words that had been stuck in my head but are now free. Unless you have been without communication you have no idea how important it is. I really can’t tell you every way that it has changed my life but I can say that it has changed everything.

I now live in Virginia because I was able to tell my parents I wanted to move there so I could be close to GKTC and others like me who spell. I now have phenomenal friends like me who talk with letters. I am finally learning and my intellectual curiosity is satisfied at last. I am incredibly happy today because I can communicate.

*TASH Talks are limited to 8 minutes, so Ian wrote the beginning of his speech (above) prior to the conference and completed the part below live.  

Thank you for being here today. I want to echo Elizabeth, don’t judge me based on my motor. You can clap more for that. I am hungry to learn. I hunger for friends. This hunger can only be satisfied through communication, understanding and acceptance. Time to change beliefs.

Stop making assumptions of Ignorance – TASH 2016

This year, four of Growing Kids’ nonspeaking or unreliably speaking clients presented at the TASH 2016 conference in St. Louis! Each of our students gave a TASH Talk (in the style of a TED Talk) and participated together for a panel discussion on inclusion. We will be sharing their presentations with you over the next few weeks. First up is Tom Pruyn! Only 8 minutes are allotted for the TASH Talks, so Tom typed the first part of his speech (below in regular font) before the conference and then Tom typed the conclusion (presented in bold) live.  Enjoy! ~Elizabeth

I am so delighted to be here today. I am 18 and I love music, cute girls, technology and having friends. I am also autistic and have poor motor control. I am able to talk more than most of my autistic friends but this is not my best asset. My real thoughts are best expressed when I type. Really most of what comes out of my mouth is nonsense.

I talk almost nonstop silliness. Songs, lines from cartoons, credits from movies, and the same things over and over. This is not what I want to say but is what I am good at saying because I have said it over and over. This is incredibly frustrating for me because I know that I sound ridiculous. I don’t want to be judged by the words spewing from my mouth but instead I want to be valued for my true capabilities and the words that I can write.

This might disturb some of you who thought that speech is the ultimate goal. For me, speech has been my downfall. My teachers and many others have assumed that my speech reflects my purposeful thinking. The truth is that my speech reflects the random trash going through my brain. What I spell is what I think. However, I have not been allowed to communicate this way in school so no one was able to ever see my real capabilities. This is why I am talking to you today so you can spread my desire to rethink what you believe about autistics.

*Note: This portion below was typed live at the TASH presentation. We had technical issues with the blue tooth keyboard at the conference.  You can see the typing on the screen in the video.  We have corrected the stuck or repeated letters here for readability.

This is my request to you. Stop thinking that speech is a reflection of intelligence. The ability to learn does not depend on speech. The ability to learn depends on being given a chance to learn. Don’t limit those chances to those who speak reliably. Please give me and my friends a chance to learn. Thank you for listening.

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 Letterboard 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 written up in the Washington Post and 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!
~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

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