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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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

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!

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.

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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

 

 

Diagnosis Disruption: Debunking the Myths of Non-verbal Autism

Autistic individuals are the true autism experts. Matthew Lager’s TASH Talk debunking the myths of non-verbal autism is a must read for anyone who has an autistic child or works with autistic individuals. Matthew uses a letterboard and keyboard to spell to communicate. He prepared this presentation for the 2016 TASH conference with his mother over a several weeks. Due to the 10 minute time limit of the TASH Talk, Matthew’s speech was read aloud for the presentation with spelling closing remarks live. Matthew’s goal is to challenge people to rethink autism and understand the capabilities of people who have been labeled as “low functioning”.  ~Elizabeth & Matthew  

Matthew

Thanks for letting me speak today. Thanks to TASH for including me and for your commitment to advocating for an easily dismissed segment of society.

I am going to share my experience of being erroneously mislabeled as low functioning and of low intelligence. My story is representative of thousands of others labeled as low functioning. My life changed in ways most can not comprehend the summer of 2014 when my parents took me to Herndon, Virginia to see Elizabeth Vosseller. My hero, Elizabeth, introduced me to the letterboards. Through a letterboard and now keyboard I am able to communicate my true thoughts by spelling them one finger at a time.  I wrote this presentation on a key board tapping the letters one at a time.

The topic of my talk is:  Diagnosis Disruption: Debunking the myths of non-verbal autism.

Many people view me as being stupid, emotionless and without the ability to understand other people’s feelings. It is not a surprise because scientists describe autistics so inaccurately. I am here to tell you we are much more complex than you believe and also more ordinary than you realize. We are confusing and difficult to understand because our exterior doesn’t match our fully intact brain.  We have sensory problems that make us look out of control. Some of us have voices that don’t say what we mean. Others have motor planning impulse control issues that make us do things we didn’t mean to do.  In spite of the tremendous challenges we are all just like you with complex thoughts and feelings.

Scientists typically look at three key areas when determining whether someone fits the criteria for further screening for autism spectrum disorder.  The three areas are impaired social interaction, impaired communication and restricted or repetitive behavior.  They often assume that functional problems of speech, social interaction and unusual behavior are indicative of low intelligence and poor cognitive function. They create checklists to define the behavior we do that is not typical without understanding that many of these behaviors are in fact motor based rather than a cognitive deficit.

At my previous school, I was not allowed to spell to communicate and therefore was unable to change their incorrect assumptions of me.  They were unable to see beyond my atypical behavior. As a result, I was taught at the first grade level last year.  My new school was open to seeing me differently and allowing me to use the letterboard all day.  I am now taught at grade level which is eight grades higher than instruction at my previous schools. I wish they could see me today and perhaps treat others with so called low functioning autism differently.  This school move only occurred when a group of experts in the school system were willing to suspend their preconceived ideas about autism. I hope you are willing to do this also by hearing what my friends who are here and I have to say.

I am going to ask you to look at a few more examples from my perspective.

While on the surface these scientific descriptions seem accurate, I am going to describe how what you see in many autistics is not the full or true picture.

1)  Wild erratic movements without purpose: When I look most dysregulated I am reacting to overstimulation and sensory overflow. It is impossible for anyone to evaluate my internal state when just looking at my out of control body. For example I become very dysregulated, cover my ears and make an odd sounding noise when people sing happy birthday.  The out of tune singing, especially my mom’s voice (just kidding mom), makes me feel anxious and covering my ears and making noise muffles the sound. When people see my reaction they assume I don’t want to be part of the celebration and stop including me when in fact I love birthdays and just need a coping mechanism to participate.  When I appear totally out of control, I am internally trying to focus and calm myself during an overly sensory stimulated situation.

2) Inability to initiate or sustain a conversation: Experts claim low functioning autistics are unable to hold a conversation. It is true that I am unable to do it verbally. However I can have full and meaningful conversations with my friends and others if I am able to type my part of the discussion.  I have three friends in the room today who communicate the same way I do.  I wish scientists or disbelievers would watch our interactions and see firsthand the complexity of our discussions, the way we support each other and how emotionally connected we are to each other and the world.  One of my friends dreams of being a writer. Another really wants a girlfriend.  All are interested in a full life with the same opportunities for education, living arrangements, jobs and community that any other person wants.

3) Odd, repetitive behavior: My behavior that experts describe as repetitive and without purpose is actually very useful in calming a highly stressful situation. For example, I often ask repetitive questions when I am nervous about a transition or don’t know how to get the words I want to say out of my mouth.  I understand why experts think these behaviors are odd but understanding the reason we do them is crucial to understanding us.  A good example of this is my obsession with the Wiggles. I talk about them all the time but can’t stand them. As annoying as it is to be 15 and talking about a preschool music group, reciting their lyrics does calm me down when I am stressed.

4) Poorly developed imaginary play: I have been told those with autism have no imaginary play skills. If only someone could get inside my brain you would see how I am always creating stories to pass the time when I am being ignored. I create stories about people traveling around the world and meeting famous historical figures. One of my favorites is of my friends going to meet Abraham Lincoln and talking to him about emancipation of those in society who are disenfranchised. So, I will continue to fail the tests researchers use, like putting plastic figures in front of me and asking me to pretend some contrived story.  However, when I see the figures I’ll pretend in my mind the figures are Lincoln’s soldiers who may have lost this one battle but can still win the war.

5) No or limited interest in social interaction: I understand why someone thinks I’m a loner and prefer isolation. However this could not be further from the truth. In social situations I sometimes leave the room when others are trying to interact with me because i am so excited and my body experiences a rush of such intense happiness that I launch like a rocket out of the room.  When I come back unfortunately the social interaction is lost and even worse than losing that one opportunity I likely pushed the person away for good.  This is one of many examples of how my outward behavior doesn’t match my strong insatiable need to be with others and how researchers don’t understand me. I want friends more than anything. I am lucky that now for the first time I have a group of people who I feel close to and who I feel understand this.

Every time someone with autism is allowed to share what goes on in his mind it gives experts more information and insight into the complicated inner workings of those of us who are so misunderstood. Hearing from Autistic individuals is integral to scientists understanding us and our critical and empathetic thoughts. By doing so, they can study the huge gap between the vast amount of intelligent, intricate, and inventive thoughts that we have in our minds and our difficulty sharing them in a typical way.

In closing so called experts need to start by assuming that their patients with autism are truly thoughtful and intelligent. Entering the patient/clinician relationship with this shift in thinking is the most important first step. Allowing us alternative forms of communication combined with researchers commitment, dedication and hard work we can actually make changes to research protocols that will make a difference in my life and others like me.

So, death to the idea of the empty headed autistic. I hope that people will see me and my friends beyond our exterior and see us for the people we really are.

**Note: we had blue tooth connection issues with the keyboard during the presentation resulting in repeated letters.  We edited the additional letters below for readability. 

I am happy to be here and have a chance to tell our story. Please spread the word and let others know.