A Myth of Giant Proportions

When I first started working at Growing Kids, I worked with students who were brand new to Spelling to Communicate, as well as some who started with Elizabeth beforehand. Over that time, skills began to build, goals were being met, and fluency was increasing. For the students and for myself, as well! Doing a regular, ol’ lesson was getting too easy. We ALL needed a new challenge!

Mythology has always been one of my favorite topics, and I found that it also was a great way to get students to be creative in their own writing. There is always an interesting explanation of natural phenomena, like the changing of the seasons or how fire was created for man. Most importantly though, there is a moral to every story, a lesson to be learned. I was not quite prepared for the lessons my students taught me with their very own “mythology”. You’ll see what I mean.

With every lesson we do, there is always a “creative writing” question at the end. It’s a chance for the speller to express his/her thoughts on the topic. It’s a chance to be creative. This is always my favorite part of the lesson – personalities really start to shine! One of those personalities, is that of my dear friend, Alex.

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Alex is 17 years old and types on a held keyboard. He had been typing pretty smoothly on the keyboard for a while, and I decided it was a good time to practice typing longer chunks at a time. But I wanted to keep it fun! We were doing a lesson on spirit bears (the white bears that live in Canada) and in it, I included the mythology of the spirit bear. This led to the following creative writing prompt:  Write a myth/story about Spirit Alex! 

The story you are about to read, written by Alex, took several weeks to finish. We started out every session with a lesson to warm-up his arm, and we ended every session with his myth. The result is a beautiful, funny, heartwarming story that teaches a very valuable lesson. Check it out below, and feel all the feels!
Thanks for reading,
-Meghann

The Myth of Spirit Alex:

There once was a time when the earth was ruled by blond haired, gentle giants. However, these giants were not very smart. They often found themselves outsmarted at every village trivia night. They were always very good about losing, very kind and congratulatory to the winners. But inside all they wanted was to win. They decided to consult with their ancestors about what to do. The ancestors told the giants they would help. They told the giants to make bread dough, and to sprinkle it with lemon zest. The giants were to then sing to the dough ball.After their delightful serenading, the giants were to place the dough on the front step and go right to bed.

The next day, the giant named dad woke to crying and went to see what was up.
Lo and behold the crying was coming from the big baby now laying where the dough ball was. Dad yelped with glee and shouted for his wife, named mom, to come right away and see what the ancestors had done. Once mom saw what all the commotion was about she knew this baby was a gift from the ancestors. So, she called him Alexander.
Pinned under Alex was a note and it said:

This baby will teach you many things. First you should know that this baby is unlike any other baby. He does not communicate  like other people and he will say things he does not mean to say. It is up to you mom and dad to make this baby feel loved unconditionally and in return he will teach you both things you never thought were possible. P.s. He is super smart and will definitely help you win village trivia night.
Mom and dad were floored but they were up to the challenge. They scooped Alex up and brought him indoors.

Over the next few years Alex proved to be quite a handful.Dishes were broken, hair was pulled, tantrums were thrown and big messes followed Alex like a shadow. But no matter how infuriated mom and dad were at times, they cherished Alex and continued to let him be his own person.

One day, when Alex was big but not fully grown, he met a wise woman and her sidekick, sensei Elizabeth and master Meghann. They were the diamonds in the rough that was Alex’s and mom and dads life. First sensei E showed the trio the Alex that was trapped inside his giant and rude body. Then master Meg continued to push Alex to be stronger. Before you know it, mom could communicate with her boy at last, and he even made a few good pals.
But no matter how big the progress was Alex still was not ready for trivia night. He was swearing like a sailor, drawing on walls and pulling hair. The people of the village could not understand Alex and therefore did not like him very much. 

The people who adored him, however, never gave up on their doughy boy. Cue eye of the tiger, because they all went rocky style on those disbelievers butts. Days turned into weeks, weeks turned into months. Mom knew she needed to take matters into her own hands.
And that is exactly what she did. Gone were the days of trying to fit a square peg in a round hole. Alex was being hurt more than he was being helped by the people in the village who were trying to mold him into one of them, one of the normies. Mom was reminded of the letter left by the ancestors. This baby is unlike any other baby. Of course he was not going to be or learn like other kids, Alex was not like other kids. This was a huge turning point for the whole family.

Alex was inspired now more than ever. No stopping him now. Days and nights passed as Alex and mom worked tirelessly on his social skills. So when the day finally came, Alex was ready to compete in the event. He was on a team with mom, dad, sensei E and master Meghann. They were not at all nervous looking at their competition. Then the bell rang, it was time to start. The first ten questions were too easy for Alex. The next ten were a little less easy but not too hard for Alex. The last round, however, had Alex and the team sweating. He did not know if he knew the answer to the last question. What did Egyptian medics believe was the cure for flatulence? Wait a second, Meghann talked about this. Just then Alex spelled the answer. Leeches. The bell rang, the winner was announced. It was team giant. The crowd cheered and chanted his name. Alex did it.  The end.

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Mindful Inclusion at the Connections School of Atlanta

Today we welcome guest blogger, Michele Kukler, one of our ACTS (Accessing Community Through Spelling) professional practitioners and teacher extraordinare of the Connections School of Atlanta. Michele and the incredibly dedicated teachers and staff at Connections are leaders in education as they include nonspeaking students along side speaking peers inside and outside the classroom through meaningful learning and engagement. Thank you Michele and Connections for your model of inclusive practice! ~EV

Before Connections School of Atlanta came to life and we were only dreaming of possibilities, my mind was already churning with ideas for bringing other high school students into our community of learners. As a conscientious teacher, thoughts of logistics (how can we pull kids out of their own schools during the day?) and potential risks circulated through my brain, but my gut told me that it was a challenge worth pursuing. While Connections offers an incredibly progressive and individualized approach to education, our challenge as a young school lies with creating opportunities for inclusion for our deserving students. Fortunately, a junior at the nearby Paideia School, Sophie Green, was an early supporter of our start-up program and also dreaming up opportunities for inclusive experiences between us. Sophie’s drive and determination, fueled by the enthusiasm of Paideia’s Director of Service Learning, Natalie Rogovin, proved to be the perfect match for a partnership with Connections.

A few energetic meetings and encouraging email threads were all it took, and the two schools were set to begin a first-of-its-kind program in January of 2017. The game would be four square, but the goal would be friendship and understanding. A select number of Paideia students would spend two weeks learning about our students- their hopes, strengths, and their differences- and figuring out how to teach the rules and skills of a movement-based game to teenagers with sensory movement challenges. They would then travel to our school for the last block of each day and spend time leading, learning, and laughing with us. Whether or not the students mastered the game of four square didn’t matter; we could hardly wait for the fun and relationship-building to begin!

On their first visit to Connections, the neurotypicals arrived with vibrant posters, every color chalk you can imagine, a variety of different sized and weighted balls, and open hearts and minds. Both groups of students were challenged to step outside their comfort zones and enter unfamiliar territory. But the differences between them, so obvious at first, seemed to disappear within days and what emerged was a group of teenagers who were free to be themselves together. The Paideia students taught us how to return a ball in stride with a forward motion, rather than pausing to catch it, how to aim for the corners but stay within the lines, and how to advance to the highly sought after “king” position on the four square court. We taught them how to listen to people who don’t speak, how to believe when society tells you not to, and how to break down stereotypes and connect with those who simply experience the world differently.

Our students were so thankful and thrilled about hanging out with their new friends that they each wrote a letter to their designated four square partners. One Connections student’s words seem to sum up the beautiful reality of the experience: “SO MUCH FUN GETTING TO HANG OUT WITH YOU. TRYING TO MAKE MY FACE SHOW MY HAPPINESS IS REALLY HARD. I HAD SUCH AN AMAZING TIME. THANK YOU FOR HAVING FAITH IN US.” Since the success of the first short-term program left both schools wanting more, it was a no-brainer that we would replicate the experience in May, and students lined up at Paideia to sign up for round two. The spring program was another huge success and brought more “off-the-court” experiences, like a neighborhood walk to buy doughnuts and an impromptu talent show complete with tap dancing, poetry reading, and karaoke. We are counting down the days until we meet our friends again this school year!

Ask any good educator, and they will tell you that our deepest hopes for our students stretch far beyond the academic content that we teach. We want our students to grow up understanding how to think, how to relate, and how to communicate in a world that is constantly evolving and growing. Four square offered an opportunity for critical thinking, perspective taking, and most importantly, shared joy. These students were able to find their common ground through a simple game, and each one left with more empathy, imagination, and respect for differences than they had before. What once seemed like an impossible dream, became a life-changing reality, and every single student mastered the game of four square.

~Michele Kukler and the Connections School of Atlanta

Michele Kukler is the Instructional Coordinator and Lead Teacher at Connections School of Atlanta. Contact Michele at mkukler@connectionsschool.org and learn more about their innovative program at www.connectionsschool.org. Keep up with their adventures by following the students on Instagram @Connections_Class and Twitter @CSA_ATL.

Puppy Love

When people meet Buddy, our OT dog, they often ask me how I became interested in animal assisted occupational therapy.  While this picture says 1,000 words, I will still write a few more!

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Well, the journey began when I was born.  No, really!  My family adopted a golden retriever puppy a few months before I was born and I grew up with him.  His name was Jake, as most golden retrievers were named at the time, and he always wanted to be close to me.  I read to him, shared my music, and styled his “hair” on a regular basis.  He was fun and gentle, and the #1 reason why my family and I became such big dog lovers.

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Karen and Jake.

When I was 12-years-old, my mom started raising puppies for Guiding Eyes for the Blind.  It was hard for all of us to love and help raise a puppy, only to say goodbye after 16 months.  We kept raising though, because we saw what a tremendous impact these dogs have on the life of a blind person.  When I was a senior in high school, I decided I wanted to be the primary raiser of a puppy.  Her name was Julie and I took her to training, I took her out in the community so she could be comfortable in any setting, and I watched her grow from an 8-week-old puppy to a certified Guide Dog.  It was hard to say goodbye, but I couldn’t be prouder of the work that she has done.

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Karen and Julie, a puppy she raised for Guiding Eyes for the Blind.

When I went to college I realized that I needed a dog for myself.  I brought my family dog, Ink, with me when my sophomore year started and he made a tremendous difference in my overall well-being.  He was my “doggie soulmate” and followed me to graduate school.  I can honestly say that Ink deserves every bit as much credit for my diplomas as I do.  He was a constant ray of sunshine and encouraged me to exercise more, laugh more, and take time to play around.

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Photos by Shelley Castle Photography.

Needless to say, from the moment I decided to be an occupational therapist, I knew I wanted to have a dog to help my clients.  There has been an explosion in the types of jobs dogs are now doing.  Just to name a few, dogs lead the blind, sniff out bombs and bed bugs, alert people with diabetes and seizures, and detect cancer.  They are being used more and more to reduce stress and anxiety.  Because dogs are very attuned to humans after living with us for thousands of years, they are especially suited for therapy work.

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Karen with Prince, a service dog her family raised for Veteran’s Moving Forward.

My goal is for Buddy to aid in regulation and provide a new, fun way to practice purposeful movements.  My mom is Buddy’s primary trainer.  It takes a long time to train a service dog and a long time for a puppy to mature enough to be a working dog.  They also have to want to be a working dog.  We are having Buddy visit the office for socialization and becoming familiar with the environment.  He is interacting with clients on a very limited basis so we can gain some insight into what tasks he could be trained to do and how they might need to be modified for our clients.  For example, it is much easier for a student to give Buddy a treat in a bowl rather than directly by hand.

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GKTC staff and interns working with Buddy.

He is only eight months old, but I am very excited by the potential I see in “the Bud.” Some of the tasks I foresee Buddy doing with students are:

  • retrieving a ball that’s been thrown
  • responding to commands given with only hand signals
  • coming to the sound of a clicker
  • copying a client as he or she sits, lies down, crawls, or rolls (Doggie Yoga anyone??)
  • solving a food puzzle the client has loaded
  • finding things a client has hidden
  • navigating an obstacle course with a client doing various tasks at stations

I am excited my Therapy Dog Thursday Facebook posts are being enjoyed by so many people.  It is a nice way for people to watch Buddy grow up and see what he is doing for training (follow #BuddyTheOTDog).  I will be writing a series of Buddy lessons that describe his journey, challenges, and what he learns as he grows up. One of Buddy’s current challenges is to stay calm wherever he goes.  He loves people and is highly motivated to work with them, but he needs to calmly approach a new friend and not give them as many kisses!

Growing Kids clients are our best autism experts.  So, I want to ask the experts, “What would you like to be able to do with Buddy?  What would you like to learn about Buddy?”  Please let me know in the comments here or in the comments on Facebook!

 

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Buddy at 4-months-old.

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Karen and Buddy snuggling after a long day.

Until next time!
~Karen

Innovation, Entrepreneurship and Summer Institute

Innovation + Inclusion Welcome

For our final week of Summer Institute, our guest lecturers were Meenu and Sarina from the University of Maryland. Meenu and Sarina work together at the Academy of Innovation and Entrepreneurship and teach students how to think outside of the box and bring new, interesting ideas to life!

After the “getting to know you” portion of the group, Meenu began to talk to us about the introduction experience. She had mentioned she was at a conference with a lot of new people, and noticed that all she was given, was a simple name tag to introduce herself. Yes, a name tag can be helpful…people will instantly know your name without having to ask. But that’s all they will know about you.

Your name.

Sarina mentioned how a conversation can open up if prompted in the right way. For example: Your doctor asks you how many times a week you go to the gym. You can easily and quickly respond by saying “3-4 times a week”. However, your doctor can get a much better answer with more detail, if he asks you to tell him about your last visit to the gym!  

Meenu then asked the students to pair up, and tell each other a few of their own introduction experiences, mostly the awkward ones! We had a small group of 4 students that day, so pairing was easy. Here are a few of their stories:

[Ben chose to ask Ian a prewritten question: Tell me about a time you had a ‘meeting new people’ horror story.]

Ian: Once I found I had all my strength in my arm. This is scary for both others and me.

Ben: I’ve been there as well my friend. Once I met someone who talked at me like I was a dog, and also got in my face like they wanted to give me a scratch

Ian: So humiliating. So rude. That is so hard for many of us to face time and time again.  

[Tom asked Emma the following question]:

Tom: Tell me about a time someone changed your opinion.

Emma: I think our discussion of autism with Tribe and UVA changed my opinion of NT’s acceptance of us.

Tom: The opinions that I have come from my personal experiences. I believe that there is no excuse for violence in protest. I have never participated in a rally where I have had to face off with haters in person. I saw the events in Charlottesville and I respect the restraint the peaceful protestors showed to not throw punches.

 

After hearing from each other, the group was then told to come up with two different products, services or experience ideas to help their partners have a better introduction experience. Meenu and Sarina also reminded us that with these ideas, the sky’s the limit! Go crazy! Get creative!

Challenge accepted.

Here’s what everyone came up with:

Tom’s ideas for Emma: Noise cancelling headphones that allow people to hear Emma’s true words even when she needs to scream. Technology that soothes Emma’s body like a blanket that Emma can upload  a playlist to. She can share her favorite songs. Music is a great conversation starter.

Emma’s ideas for Tom: First, I would create a window that would allow someone to see who you are inside so they see the real Tom. Then I think would create an empathy hat that lets the wearer feel what it is like to have body brain disconnect.

Ben’s ideas for Ian: The first idea I have for Ian is an automated pair of sunglasses that can sense when someone is attempting to engage Ian in conversation, that can read levels of skepticism as well as trust and comfort and/or fear in an individual. This next idea to help Ian is a little out there- What about a service that coaches people how to handle awkward introductions.

Ian’s ideas for Ben: Have a room for him to lay down in or relax before introducing himself to others. Regulation is key in high stress situations. This is true for neurotypicals too. Send in the techs for my next idea. How about a grand screen to show words as he pokes to letterboard. This is easy to do but helpful.

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Wow! We loved every single idea that these guys came up with, and definitely teared up only a little…

Then, with little time left in the group, Meenu and Sarina administered a quick test to students and communication partners!

We didn’t know much about this quiz, except that it felt like a personality test. All we knew was that we had to answer to the best of our ability. Meenu and Sarina did a quick calculation, and by the end of it, we were told to wear a specific color to Summer Institute the next day. Hmmmm, we wondered…

Tom had to wear yellow. Ben had to wear white. Emma had to wear green. Ian had to wear yellow. Janine had to wear yellow. EV, myself, Liz, and Roxy had to wear green.

We later found out that those colors represented what HATS we wore when thinking creatively in a group!

 

  • Green = Creativity, possibility, new ideas, seeking alternatives/concepts
  • Yellow = Brightness, optimism, values, benefits, feasibility
  • White = Information, facts, what’s known, objective, context

 

 

We all agreed with our hat colors!

 

The next day, we talked about a few different inventions made for several different reasons; The comfortable potato peeler, incubators for newborn babies in Nepal, surgical tools, a bowl that could be held several different ways, the waking up experience. We learned that when people hear the word innovation, they think Eureka! Or the moment when lightning strikes, but innovation is not a one time event. It’s a process to find creative solutions to various problems. The design thinking process is a methodical way to creatively solve problems!

 

Here is an example of the activity:

When babies are born with a low birth weight, they’re kept in an incubator. In Nepal, a team made easier, low maintenance incubators. When the team visited hospitals where incubators were being used, they found that the incubators in the hospitals were totally empty. But tt wasn’t that there weren’t any low weight babies… and the clinics had sufficient electricity. What was the problem?

The team interviewed the parents and learned that babies were usually born at home, NOT at clinics. The need wasn’t for cheaper, easier incubators, but the need was to keep babies warm. They also had insight that most mothers in labor didn’t have the means to make it to the clinic. So, the team created blue sleeping bags that were easy to clean and kept their babies warm ( we also learned that white in their culture is associated with death!). EMBRACE is now it’s own company! What does this tell you about the process?

 

Emma:  Had to create the right solution for the right problem

Ian: Seeing the direct problem and understanding the culture

DDK: I think there is an element of compassion to solve a completely new problem.

Tom: The process involves being educated about the community it’s supposed to serve.

Ben: Sensing the problem.

Nailed it!

The last day of Summer Institute, the group went to the University of Maryland to put all of our great ideas to the test! We all broke out into small groups, 1-2 students and a communication partner, to create a prototype for the inventions they created earlier in the week. We shared out the ideas afterward, and discussed how to give feedback using the phrase “I like…I wish…I wonder”.

For example, “I like the colors you used in your painting. I wish to see more of your personality in it. I wonder if people will understand what you are trying to say.”

 

This has been especially important to this group – learning how to give feedback!

 

Take a look at the pictures of our adventure at UMD and the Academy for Innovation and Entrepreneurship below!

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Tom hanging out in the “workshop”!

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Ben and Janine creating the prototype for his sunglasses.

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Ian and Roxy creating the prototype for his “grand screen” letterboard.

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Emma and Meghann creating the prototype for the “Empathy Hat”.

What an incredible experience for all who took part and an amazing way to wrap up our Summer Institute!

Until next time,

~Meghann and The Tribe

Art as Social Protest: Let Us Show You The Wei!

GKTC Summer Institute kicked off the summer exploring multimedia journalism: photography, videography, television, and radio. The past two weeks in Summer Institute was all about media in a different context… A R T!

Liz Michaels, GKTC’s longterm intern, is also an art instructor and led us in a discussion about types of art: fine art and conceptual art. We learned that in fine art, more value is placed on the aesthetic aspect of the final work while in conceptual art, the thoughtful idea or concept behind the work takes precedence. One particular type of conceptual art we focused on was social practice art. For those who don’t know what social practice art is, Tribe member Ian explains, “We are focusing on social practice art which is a type of art that is interactive, engages the audience, and conveys a message.”

We looked at examples of social practice art that inspired collaboration and interaction in environments outside the usual gallery or museum walls. Check out this short documentary about a work by Thomas Hirschhorn entitled Gramsci Monument.

Feeling inspired, Tribe tossed around ideas for their own social practice art piece. After some collaborative brainstorming, Tribe decided that they wanted to use their conceptual art piece to convey that “We are more alike than different,” an idea that Ian came up with. They wanted their final message to include:

Matthew: “We all have the same basic needs like love and acceptance.”

Anna: “We all have loved ones.”

Huan: “We are all our own person and have choices to make.”

Ian: “We are human beings with feelings.”

Tom: “We all have high expectations for ourselves.”

Another artist’s work we delved into was Ai Weiwei. His work prompted a mix of reactions. One in particular, entitled Dropping a Han Dynastry Urn, features Weiwei dropping and smashing a 2000-year old urn. The urn was valuable not only financially, but also symbolically and culturally.

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Source: https://www.royalacademy.org.uk/article/ai-weiwei-beginners-guide

Huan:  “Holy moly, I can’t believe he did that in the name of art. If you wanted a reaction that was a way to get a big one.”

Matthew:  “I think it was badass but intense.”

Ian:  “I think it’s a shame to destroy history for the sake of attention.”

While there’s some debate in Tribe over what should and shouldn’t be considered art, everyone agrees that art is about pushing boundaries.

To end the unit, we took a trip to Smithsonian’s Hirsshorn Museum to see Ai Weiwei’s work up close.

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A trip to Washington, D.C. isn’t complete unless you take some tourist-y pictures with the Capitol and the Washington Monument!

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Waiting for the museum to open. Laura S. DeThorne, an SLP from the University of Illinois-Urbana, and her colleague, Henry, joined the outing!

The first part of the Ai Weiwei exhibit showcased a wallpaper installation entitled The Plain Version of the Animal That Looks Like a Llama but Is Really an Alpaca. After a closer inspection of the wallpaper, the Tribe found images of “technology” (Ian), “Twitter bird” (Huan), and “handcuffs” (Ben). Emma and Tom offered up their interpretations of the piece: “It says something about corruption” (Emma) and “The golden age of policing” (Tom).

The exhibit also featured the debut of Trace, an installation of Lego portraits. From the Hirshhorn website: The portraits are of free speech advocates and activists who “have been detained, exiled, or have sought political asylum because of their actions, beliefs, or affiliations.” In Emma’s words, “They were all revolutionaries.”

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Checking out Trace. Navigating past the wall art and the floor installation took a lot of motor control! Huan reflects on the experience: “It took a lot to be aware of everything. The hardest part was not to touch the walls.”

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Reading about the revolutionaries featured in Trace.

When asked how the portraits were a form of social protest, Huan shared: “It is recognizing their sacrifices.” Ian also shared, “Well plastering their infamous images on the floor calls attention to their names.”

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Posing like Ai Weiwei!

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Sharing their final reflections on Ai Weiwei’s work:

Ian: “The openness of the space makes such a difference. I get what Liz was saying about the space being part of the experience.” “It was powerful to see protest in art while browsing through each level of the Hirshhorn. The Ai Weiwei exhibit with the Legos was by far my favorite. It featured images of revolutionaries accused and charged as terrorists in Legos on the floor. It’s so crazy to think of being punished for standing up against evil.”

Tom: “I think it was a good way to call attention to those persecuted for social advocacy.” “It was so intense. I got every piece and I felt the oppression the artist wanted me to. I felt empowered to share my own oppressions.”

Huan: “The trip to the Hirshhorn was powerful I was terribly impressed with the art and how it can communicate the artist’s message. I thought the Ai Weiwei exhibit was incredible. The pictures of individuals who have lost their freedom for standing up for their beliefs was so amazing. I can’t believe that he was able to do this in Legos!

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Until next time, D.C.!

~Janine Caguicla and The Tribe

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

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