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.

William Chess
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

 

 

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

Silencing the Silent

Huan

Huan Vuong started advocating for communication and education rights for himself and other nonspeaking individuals as soon as he got on the letterboards. This was his second year presenting at the TASH conference. Due to Huan’s strong advocacy, his school system has recently responded to his requests to meet his communication needs and will provide him with a trained partner so that he can meaningfully participate in general education classes! He will also begin taking classes at a local community college! Huan is the embodiment of determination and self advocacy.  Enjoy his TASH Talk. ~Elizabeth & Huan 

Hello everyone. My name is Huan Vuong and I am happy to talk to you today. Perhaps you notice that I spell instead of speak.

This is the best way for me to communicate. My speech is limited and unreliable. But I can communicate very reliably when I type and spell. Learning to communicate this way changed my life. I finally had a way to express my thoughts. You would think that this new expression would open new educational doors for me. I did too.

The problem is that I have to have a communication partner who knows how to coach my body when I get stuck or too stimmy. I am still autistic even though I can communicate. This means I have motor and sensory issues. My school has been resistant to the idea of my need for support. This has been incredibly frustrating to me.

For the past three years, I have been fighting for my right to be included in general education classes. Completing high school with a real degree seems to be an impossible task. You might think that would be easy, but you would be wrong. This should be a no brainer.  I am a smart guy, I can learn, I want to learn but I need a trained communication partner.

This is why I am here today. TASH is devoted to supporting people with disabilities. Communication is no longer my disability. Motor and sensory will continue to challenge me. But right now the disability I face is access. This is not acceptable to me. I request your help to open access to education, to opportunity and to real inclusion into the neurotypical world by supporting communication rights for all nonspeakers.

Thank you for listening. Now I need to ask you for a favor, I need your voice. I need you to speak up and advocate for me and my friends. Don’t worry we will tell you what to say. Say that we are smart. Say that we want to learn. Say that education is for all. Say that communication is a human right. Thank you. —

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.

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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Santa doesn’t need speech to understand

This holiday, our families from New Zealand decided to have holiday lesson swap. Each of the ten families contributed one holiday themed lesson and walked away with TEN LESSONS! Since I am no fool, I jumped right on this swap. All of the lessons have been fantastic but I have particularly enjoyed the lesson about Tinsel and the Christmas Spider, written by Kiwi mum, Jo Lussey.  In the spirit of the holidays, Jo has offered to share her lesson with all of you! I particularly enjoyed lesson because I had never heard this story before.  At the end of this lesson, I challenged my students to create a brand new Christmas story. My kids have come up with all kinds of fantastic stories but this one by friend Alex stole my heart!  ~Merry Christmas! Elizabeth & The GKTC Team

Alex decided to ride my style - tucking his pencil behind his ear!

Alex decided to ride my style – tucking his pencil behind his ear!

So many Christmases ago, there was a boy who did not have real communication. Realizing that he could not talk the way he wanted to, he could not ask Santa for communication. The boy was absolutely devastated.  However, Santa does not need speech to understand. He landed on the boy’s rooftop and slid down the chimney.  He placed a letter board in the boy’s stocking.  Wonder of wonders, the boy who could not communicate could spell. He loved to spell and share his words with the world.  This was the merriest Christmas in his life.

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