GKTC Tribe and UVA: Creating Welcoming Communities, a kickoff exchange!

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GKTC’s Tribe has kicked off the fall schedule with an exchange between The University of Virginia students and Tribe members. The University of Virginia students are taking the undergrad psychology course, The Science and Lived Experience of Autism along with the young adults of Growing Kids Therapy Center’s “Tribe”.  Last year, the Tribe completed the coursework for this class along with the UVA students.  This year, the Tribe will be collaborators working with the UVA students to deepen their understanding of autism, inclusion, and neurodiversity.  The Tribe and UVA students interact and collaborate through shared blogs, discussion and project groups and several in-person exchanges. The objective of our first exchange on Saturday, September 16, was to begin discussing ideas of what makes a welcoming community and the kinds of ways that we can contribute to making our community and other communities more welcoming.  

GKTC staff present: Elizabeth Vosseller, Meghann Parkinson, Janine Caguicla, Roxy Cuadra.  UVa staff present: Dr. Vikram Jaswal, Allison 

Group A: Tribe participants in Room A (EV): Ryan, Dustin, T
Group B: Tribe participants in Room B (Janine, Roxy): Ben, Tom
Group C: Tribe participants in Room C (Meghann, Vikram): Huan, Lisa

UVa students rotated in different rooms across two rotations; participated in the large group discussion; and then in the small group project discussions. Take a look at some of our discussions:

Group A kicked off their time together by discussing the intricacies of introductions. Take a look at what they said! 

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Introduction and a secret:

Claire: I have played piano for 10 years

Katie: One of my jobs was to be the Yogi bear mascot

Dustin: My name is Dustin I have unique sense of humor

Haley: I work training giant African rats to sniff out bombs for the DOD

Annie: When I was 10, I worked in a singing ice cream shop. The employees would sing

Ryan: I’m Ryan. I have an obsession with music.

Morgan: I have torn my ACL twice. The second time I tore it, I fell down the stairs.

T: You guys are cool. I’m Tristan. Definitely, my secret is that I’m a science nerd.

Bobby: Unlike most people when they get stressed who nap or relax, I build things. I built a robot and a 3D printer.

Elizabeth: I am director of Growing Kids Therapy Center. I have a deathly fear of Frogs

Sam: I’m from Herndon

Let’s build a better introduction: What questions could we ask each other?

Sam: What is your experience of home?

Morgan: Recruitment chair for sorority — open-ended questions about family, friends, what you want to do in the future and what do you do for fun. Not quantitative, but “How do you interact with your siblings?” Instead of “How many siblings do you have”

Elizabeth: As a speech pathologist, we want a language sample so we ask open-ended questions.

Dustin: I would like to know what someone is passionate about.

Katie: I think that is a great way to get to know someone and their personality

Annie: I was gonna say “what are you passionate about too” Asking to find similarities to find common ground

Elizabeth: How do you ask that in a question?

Annie: Bring up something you are passionate about, and then ask for someone else’s thoughts

Elizabeth: Even if someone says they hate music, that is an interesting conversation-starter

T: Making differences less noticeable by finding common ground like Annie said.

Ryan: I like to know what kind of music someone likes.

If you were going to invent something and money’s no object, what would you create to make the introduction easier

Bobby(UVa): Hitchhikers guide to the galaxy — device which allows you to hear what people want to say vs what they actually say.

Dustin: I echo what Bobby said

Annie(UVa): Invent something that would take the awkwardness out of the situation. Like an “awkward dehumidifier”

Ryan: Such a great idea.

T: Something that reveals truth not everyone’s eyewash

Group B kicked off their time together by discussing a video and what it takes to create a welcoming community.  Take a look at what they said! 

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If we don’t have means to communicate and join the discussion, a lot of conversation happens about and around you. Why was Shelbyville assigned for today’s discussion about creating welcoming communities? What did you get from the film?

Brittany – showed stereotypes, example of unwelcoming community

Natalie – refusing to accept culture, reluctant to change because not something they were used to

Ben – keeping a closed mind about others. To me this is too familiar, most see us in a segregated manner.

Tom – there were some members of the community who tried to be more accommodating

The language of “us” and “them”. Us – the Shelbyville community, even those that a diverse community. Them – the immigrants. Tom brought up that some members were trying to be accommodating – what are some examples?

Natalie – the one church, although their overall goal was to convert, wanted to host dinners

Motivation was questionable. Woman was trying to teach them to pass citizen test.

Tom – there are examples of community members who are from a different country, (who) remember the transition (to Shelbyville), there was a guy who worked in general motors.

Ben – life is funny in that there is always going to be two sides to every story. In the story the church included, but not in the fashion needed by those ostracized by the masses.

The church was trying to include but with questionable intentions. In hosting dinners, what were they doing that was supposed to be welcoming but may have been not so welcoming?

Natalie – when one of the women at the dinner where they cooked and tried to show their culture, asked if they were going to bomb the town based on rumors she had heard. Even though sampling their culture is a step in the right direction, being asked that about a refugee trying to escape a situation was pretty awful.

Ben – while things were supposed to be getting to know each other, the questions were one-sided. The Shelbyville people asked all the questions.

Tom – The religious leaders who met were all white men.

Natalie – thought it was interesting the only time I got a sense of someone acknowledging their privilege in Shelbyville was when four heads of different churches were talking – what can we do because this is threatening our way of life – but one said well it’s easy for us to say because it’s coming from us/we’re privileged. The other time when someone said I have people approaching me saying how am I supposed to get rid of this attitude that have been ingrained in me my whole life.

Roxy – what do you think a person could do, after you recognize that privilege, how do you shift that thought? What step would come next out of that realization?

Lily – finding things you have in common, how you’re more similar than different

Hunter – recognizing places in your behavior which may have been influenced by whatever privilege you might have and then making a conscious effort to change

Natalie – leading from example

Ben – Attention community: you can be part of the civil right movement by noticing and speaking to minority groups.

Tom – Dialogue is key, but also dive into the communities.

Group C had a similar discussion as Group B: 

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Vikram: so, the meat of our conversation in this breakout group is focused on the Shelbyville documentary and reading about Charlottesville. I have some guiding questions but i would love for this conversation to grow organically. Any thoughts about why this documentary was chosen?

Raquel: I thought the Shelbyville documentary had a lot of examples of the more effective ways of how to make a welcoming community. Some groups did reach out and others did not

Carolynn: I thought it was really interesting how when they brought the reporter in, he was saying he wrote the [negative] articles and had been trying to report the truth and wanted to talk to the Somalis – interesting excuse he provided

Izzy: they always referred to the people as their racial group, not just as the person. Salon worker said ‘When the hispanics come in to get their haircut’ – trying to sound not like she’s looking at their race, but by saying that, she is. This correlates to people with autism – referring to people within their group, and not as people.

Huan: I think ignorance is poison to society and no matter what, it’s not going to be solved without honest difficult discussion.

Vikram: what kind of things have to be discussed?

Huan: Oh Vikram. Where to start? Maybe we start with stereotypes.

Lisa: I think having a straight discussion can only educate those willing to listen

Vikram: so what do we do about people who aren’t willing to listen? How do we change?

Lisa: we share mindsets. We try to understand them too.

Xara: Going back to what Izzy said, people assume by not interfering (they are creating welcoming community), but they’re actually being apathetic.

Meghann: there’s a man who goes out who meets members of the KKK and white supremacists, to try to understand them.

Vikram: one of the things that I heard from a philosopher when communities get together to discuss the hard stuff, he says we should start by talking about soccer and movies before moving to the hard stuff.

Flo: there were protesters on both ends (in Cville), but by being there you’re not being productive – the Vice documentary interviewing the white supremacists would’ve been interesting to be a part of from the other side

Meghann: just showing up is like buying a brand name, you want people to know you’re there and you’re not doing anything

Vikram: what should happen – how do you grapple to try and solve this problem given the history of marginalized groups?

Xara: on tuesday, there were some student protesters [who shrouded] the TJ statue with a #BLM banner. An email was sent that gave a narrative and counter-protest statement from the students that said this was a wider thing than just a student CIO voice. Where is the line – if you remove the Jefferson statue does it end there? Where do you draw that line in terms of change and what is productive/progressive?

Huan: I think the statues would be better suited for museums for educational purposes because let’s face it, history cannot be changed

Xara: what do you think about university statutes? Would the rotunda count as a museum?

Huan: well it’s tough to say, but how important is the statue?

Lisa: I think it’s incredibly old fashioned to honor historical figures with statues. They’re not Gods. they’re taught in schools so their memory’s honored.
After the discussions, all the students enjoyed eating lunch together outside! 

 

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We had a wonderful, inclusive experience! Until next time, Roxy and the Tribe!

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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!)

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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.

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

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