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

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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.

Huan and Ian Chess PNG.png
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.

One for All PNG.png
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

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 the letterboards with their kids and a growing community of parents, grandparents, sibs, teachers, Floortimers, flexible ABA therapists, SLPs, OTs, and aides. This community is so great that my next blog will be all about them!  For the moment, I want to focus on the kids!

The last day of the workshop was on Monday, January 19, Martin Luther King Jr Day. So, of course, I had to do a lesson on MLK. Rather than some of the obvious choices of lessons on Martin Luther King, Jr., I decided to do a quote lesson. Quote lessons are easy to put together – pull up some quotes that fit your subject matter, lead with a few warm up questions (In this case I had the kids spell Martin Luther King; asked warm up questions about his profession; his leadership role; and cause.)  Then, choose from the quotes, read it to the kids and let them fly!  Quote lessons work best with fairly fluent kids. However, if you wanted to use this lesson with a student who is at the word level, you could modify by asking questions instead of eliciting open responses.

This lesson features the responses of Graciela, John, Reece, and Charles who all attended the last Atlanta workshop in November. Since then, they have been hard at work developing their skills with their families. Here are the words of these civil rights leaders from Atlanta!

“Life’s most persistent and urgent question is, ‘What are you doing for others?'”
THIS MEANS THAT WE SHOULD BE THINKING OF HOW WE CAN BE OF SERVICE TO OTHERS ~Charles

LIVING FULLY DOES NOT MEAN LIVING FOR YOURSELF.  IT MEANS LIVING A LIFE OF SERVICE ~Graciela

“Our lives begin to end the day we become silent about things that matter.”
TO REMAIN SILENT ON ISSUES THAT MATTER IS THE GREATEST COWARDICE! ~Reece

Reece 2

As soon as Reece could communicate through RPM, he has consistently expressed a desire to “help other kids like me”.

“Faith is taking the first step even when you don’t see the whole staircase.”
BELIEF SHOULD NOT REQUIRE PROOF! ~Charles

BELIEVE IN THINGS THAT YOU CANT SEE AND IT MAY HAPPEN ~John

“I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin, but by the content of their character.”
THIS IS KING’S FINEST WORDS.  NO ONE SHOULD BE JUDGED BY ANYTHING OTHER THAN THEIR MORAL CHARACTER AND VALUES. ~Charles

Charles, whom I have nicknamed, "The Cool", and his Mom show their skills on the boards! Two star pupils!

Charles, whom I have nicknamed, “The Cool”, and his Mom show their skills on the boards! Two star pupils!

“Love is the only force capable of transforming an enemy into friend.”
LOVE IS ALWAYS THE MOST EFFECTIVE WAY TO COMBAT HATE ~Graciela

LOVE IS SUCH A POWERFUL FORCE.  IT CAN CONQUER MANY THINGS INCLUDING HATE. YOU CAN FIGHT MANY WARS MORE EFFECTIVELY WITH LOVE RATHER THAN HATE AND WEAPONS. ~Reece

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”
ONLY WHEN REALLY HAVING FULLY SEEN A PERSON CHALLENGED DO YOU KNOW WHAT THEY ARE MADE OF ~Graciela

Graciela, a seasoned RPMer just starting on the keyboard is making sure her parents are checking out her work!

Graciela, a seasoned RPMer just starting on the keyboard is making sure her parents are checking out her work!

“The function of education is to teach one to think intensively and to think critically. Intelligence plus character – that is the goal of true education.”
EDUCATION SHOULD EMBRACE THEIR DIFFERENT LEARNERS AND EXPECT THAT EACH ARE EACH CAPABLE OF LEARNING. THIS PHILOSOPHY MUST BE ACCEPTED IF AUTISTICS HAVE ANY CHANCE FOR AN EDUCATION. ~Reece

I BELIEVE THAT SPECIAL EDUCATORS NEED TO RAISE THEIR STANDARDS AND EXPECTATIONS FOR AUTISTICS. INVEST IN OUR EDUCATION AND YOU MAY BE SURPRISED AT THE RESULTS. ~Charles

EDUCATION IS MORE THAN BOOKS.  IT IS REALLY ABOUT BUILDING INTELLIGENT RESPONSIBLE CITIZENS ~John

“I have decided to stick with love. Hate is too great a burden to bear.”
ALWAYS CHOOSE LOVE OVER HATE. ALWAYS CHOOSE TRUTH OVER DECEPTION. ~John

John is making sure I am accurately writing down all of his words!

John is pure happiness contained in a body. Here, he holds my hand as he make sure that I am accurately writing down all of his words!

“The time is always right to do what is right.”
RIGHT ACTION DEFY A TIME TABLE ~Graciela

“We must accept finite disappointment, but never lose infinite hope.”
I THINK DISAPPOINTMENT IS AN INEVITABLE PART OF LIFE.  HOWEVER IT IS NO MATCH FOR THE POWER OF HOPE! ~Charles

ACTING DISAPPOINTED WILL GET YOU NOWHERE.  HOPE WILL INSTANTLY MAKE YOU FEEL BETTER ~John

What a fantastic group of kids, families and community! Workshops are always a crazy, whirlwind of back-to-back sessions but with such an incredible community and their non-stop support, the days flew by!  How can I help but be inspired by their powerful words? What will these civil rights minded students bring to our country’s future? And, can any workshop have a better ending than this?

Reece gives the greatest bear hugs EVER!

Reece gives the greatest bear hugs EVER!

Thank you Graciela, John, Charles and Reece for sharing your beautiful thoughts and words! Thank you Atlanta for pulling together to form a strong network of learning and support!  Thank you Dr. Martin Luther King Jr. for your leadership in racial equality. These four leaders for neurodiverse equality, who are in league with many other young spellers and the growing global autism community who KNOW that non-speaking does not equal non-thinking, are creating a ripple effect of change that goes far beyond autism awareness to true equality for ALL!  Like my kids, I have infinite hope. Buckle up, we are in for quite a ride! ~Elizabeth