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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Tribe and UVA Part 2: Social Connections and Friendship

There are many reasons why I love being so involved with Tribe, but the UVa-Tribe exchanges are at the top. As a UVa alum, a friend of Vikram (who teaches the course), and as an educator at GKTC, it’s truly the case of my worlds colliding, and it’s the best thing ever.

GKTC Tribe and UVa undergraduates met on October 28, 2017 for their second exchange in The Science and Lived Experience of Autism collaboration. The theme of the year-long collaboration is Creating Welcoming Communities. 

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In Exchange 1, the students discussed what makes people feel welcome or unwelcome. Following the design thinking process from a separate collaboration with the University of Maryland over the summer, we discussed how to redesign the meet-and-greet experience, which tends to be pleasant small talk at best. In Exchange 2, the students discussed what comes next – “making meaningful social connections and developing friendships.” We welcomed Assistant Professor of Psychology, Matt Lerner, from Stony Brook University, who studies friendship in speaking ASD adolescents.

We kicked off the first round of discussions by comparing how neurotypical people express their interest in social situations:

Ian: I know that there are a lot of expectations during conversation, like eye contact.

Sam (UVA): Facial expression

Flo (UVA): Body language

Madison (UVA): Voice intonation

Ben: Getting a smile from a stranger

Katie (UVA): Asking questions and being active listener

Emma: Leaning in

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Tribe then shared their experiences, particularly not being able to control their body to show interest in a typical way even though they are very much interested and engaged. 

Ryan: How most people interpret my behaviors is very different than I intend.

Ben: I always mean to look interested in others but I do not always meet others’ expectations. Hard enough to make my speech understood, much less make my hardheaded body comply.

Tom: My mouth is always saying something. Please don’t mistake it as a sign of my intelligence.

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What Vikram said in his group summarized things well: “We expect socially interested people to behave in certain ways because that is how we behave – when we’re happy/sad we look like this, expect others to do the same. We all recognize that just because someone doesn’t behave in certain way, doesn’t mean they’re not interested.”

We also discussed social competence, which can be summarized as:

Flo (UVA): Being flexible in different contexts and having an awareness of social standards;

and

Madison (UVA): understanding the needs of your surroundings and needs of other people and matching the needs between them.

Tribe shared their thoughts and experiences as nonspeaking autistics regarding studies that say speaking autistics take more time to process social cues.

Emma: No, [processing social cues is] not difficult, Huan can explain.

Huan: I’m with Emma, having a body that’s uncooperative has its upsides, like being able to process information in our brains rapidly.

Ian: I am completely capable of reading people’s social cues and understanding in the moment. It’s not slow processing, it’s a non-reliable body. What you see is not always what I feel.

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Matt added to the part of the discussion where we discussed other factors that might affect how socially interested we look: “I think another reason for this is that a person can have competing intentions in the same situation and can resolve behavior into one overriding intention. I’m here and I want to be social or I’m here and don’t want to be social. Say you are at a party with your boss and you want to be social but you are afraid of approaching him. These variables are not static.”

Elizabeth made a good point in response: “We tend to love static variables. How you might socialize in this class environment is very different than how you would socialize at a party with friends or even a dinner party your parents are throwing.”

Given our discussions of social competency (the standards of which were created through an NT lens) and the stories Tribe has shared, we can begin to reset expectations and the NT’s understanding of nonspeaking individuals and their perceived sociability. 

After lunch, we came together as a large group and shared out what was discussed in the breakout discussions. While we were talking about the social standards that society has set for autistic people to achieve, the social skill competencies we’ve built into IEPS, I was reminded of a quote Lisa had shared almost a couple of years ago: “I would just say just treat me the way you want to be treated.” In the moment I didn’t think of it, but Matthew also shared something along the same lines: “To my peers, we are both people so just treat me like a person.” We’ve created these lists of skill sets that we emphasize as necessary to demonstrate social competence. There are standards that we push the neurodiverse to reach, but there is also another standard for the neurodiverse AND neurotypical alike: the human standard – to be treated and respected as a human being and to treat and respect others as human beings. Elizabeth added, “What power was vested in us as NT that makes us think we are the litmus of all things socially appropriate?”

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The remainder of the large group meeting was a Q&A panel with Tribe and Matt:

Ian: I was wondering if we broke any stereotypes about non-speakers than you may have believed

Matt: I have spent a lot of time with nonspeaking people so I try not to have stereotypes. One that stands out, that I’m sure you know, is that your bodies aren’t always doing what you want them to do. I think there is a stereotype that you aren’t paying attention. I think what you all show is that even if you are playing Angry Birds or making sounds it doesn’t mean you aren’t paying attention or listening. I think you broke the stereotype in a big way so thank you.

Huan: I want to know if Matt thinks we’re socially competent.

Matt: I have a confession. I have a lab called the social competence lab. I’m still not sure I know what social competence is. You guys tried to define it earlier today and I’ve read almost everything I can on the topic. I think that social competence is about meeting your own goals. I think it depends on what your goals are Huan, it depends on your standards and that’s what matters.

Huan: Absolutely, yes

Ryan: I’m curious to know if and how NTs are taught to interact with autistics

Matt: It doesn’t happen too much. I think the places it happens are very variable. I think the ones you are having is rare. I teach a class at Stony Brook with 200 undergraduates and they read the research. I make sure 1/3 of the class is autistic. Most of the ways people are taught to interact with autistics is through clinical training and speech pathology. I don’t think we have yet achieved a standardized way that that happens. Some fields do better than others. So Ryan, to answer your questions, not enough. This is why we need good science in order to come up with ways to make training more inclusive. 

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The students broke out into their project groups for the remaining time to discuss specific aspects of creating more welcoming and inclusive communities, communities in which nonspeaking autistic individuals can “be accepted as me and treated like you,” as Ryan shared. Look forward to their projects about preventing bullying/harassment, housing options, supporting transition to higher education and providing employment!

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Until next time!

~ Janine Abalos and The Tribe

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

DEEJ The Movie: Inclusion shouldn’t be a lottery

What a spectacular night at the Atlas Theater in Washington DC for the screening of Deej! Deej is the must-see documentary about DJ Savarese, a nonspeaking autistic and his journey to be included as a college student. The film is powerful and a story that we hope will become common for all of our students. GKTC’s Benjamin McGann participated in a post-screening panel.  Benjamin is a nonspeaking self-advocate and a board member of The Nonspeaking CommUnity Consortium.  Benjamin discussed his thoughts on the film with: Julia Bascom, Executive Director of ASAN; Erica Ginsberg, Executive Director of Docs in Progress; Jenn Lynn, Executive Director of Upcounty Resources; Elizabeth Vosseller, Director of Growing Kids Therapy Center; and Robert Rooy, the director of Deej. Benjamin brought his usual wisdom, insight, and eloquence to the discussion.

The Atlas Theater, Washington DC

Benjamin McGann shares his thoughts about Deej having editorial control in this documentary.

When asked what Ben thought about the film he responded,  LOTS TO ABSORB. I LOVED IT ALL THOUGH.
Ben introduced himself. HI, I’M AUTISTIC. I AM REALLY REALLY HAPPY TO COME TOGETHER TONIGHT.

The panel discussed the film and the fact that Deej was such an intrinsic part of the film and its production.  Ben added,  MY THOUGHTS ARE RACING. THIS IS THE STORY WE NEED TO TELL OTHERS AND SHARE. THANK YOU, ROB, FOR TELLING THIS STORY SO RESPECTFULLY.

“…I CAN THINK AND LEARN AND LOVE AND WORK”

Julia Bascom talked about autism and disability in adulthood and the support needed for adults with disabilities to be successful.  In response to Julia’s points, Ben elaborated, THANK YOU. I USUALLY INTERNALIZE THESE KINDS OF FEELING.  IT IS REFRESHING TO HEAR THIS KIND OF DISCUSSION. I AM AN ADULT, HOWEVER, MANY VIEW ME AS A CHILD BECAUSE I CANNOT SPEAK. BUT I CAN THINK AND LEARN AND LOVE AND WORK.

An audience member asked, “Ben, what gives you hope about the future?”
B: I HAVE HOPE COMING HERE TONIGHT AND SEEING THIS FILM AND HAVING THIS DISCUSSION WITH ALL OF YOU.

 Deej screenings are being held all over the United States and Canada, often with panel discussions following the film. Be sure to check the Deej Facebook page for a screening near you.
~Elizabeth and Benjamin

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

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.  

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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.”

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

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

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

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

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

 

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

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

~Karen

 

 

Unintentional Harm: Understanding the Out of Control Body

Recently, one of our parents asked what to do when her son become grabby and pinchy at home or school.  She recognizes that her son has motor control issues and knows that he is not trying to intentionally hurt her but is having trouble reconciling the difference between his intentions and actions. All of our clients have motor control difficulties, formally known as apraxia, but informally described as a “body-brain disconnect.” We have also written about it here and here. Since we believe the real experts we decided to pass this mom’s question along to “The Tribe”, our group of nonspeaking young adults who communicate through spelling.

Here’s some of the Tribe – Ben, Huan, Emma, Lisa, Ryan and Paul.

Huan: Explain that when something like that happens he does not wish to hurt anyone. He is most likely over stimulated and had no other outlet in that moment. It’s a really terrible feeling to experience and that’s the only way I can explain it. Just trust that he really doesn’t want to hurt anyone.

Emma: I definitely feel your pain. I am one of those who can’t control their body. I know it is not ok for me to shriek but I can’t stop myself even when it is affecting my friends. Try to be patient and know it is not his intention to hurt you.

Ben: It’s hard when teachers don’t understand you and some kids unknowingly provoke you and your body is vibrating and feels as if you might explode and you actually do and someone gets hurt. Your heart breaks, but now you’re in trouble and you can’t remember how you lost the control you worked so hard to maintain. If teachers can’t understand this impulse, how are we supposed to stop? How are we to progress? It’s like, not hard.

And some more of our Tribe – Tom, Ian and Ryan

Ian: Tell the teachers there are things going on in the environment that neurotypicals will never pick up on, and when they try to control your son they are getting in the way of his self-regulation process and he strikes.

Paul: Tell them he doesn’t want to do it. It’s his brain body disconnect. And he is intensely dysregulated.

Davis: One of the hardest things to explain is doing something horrible to someone you love. It is the last thing that you want to do and it makes you sick to accept that you did this. I wish I could give you a better answer. It is anxiety and constant dysregulation not your sweet child’s intentions at fault.
Another of our clients, Jordyn, has more to share on how he struggles when his unintentional actions hurt others. Thanks to the Tribe for your insight on this complicated and emotional issue.
~Elizabeth and The Tribe