Shelby’s Blog

We have been so grateful to spend the last 6 weeks with Shelby Watson, our fabulous Australian intern! Shelby was so eager to learn how to teach nonspeaking individuals to Spell to Communicate (S2C) that she packed up her bags, hopped a plane and embraced American life and clinical skills as a participant in our Accessing Community Through Spelling (ACTS) Professional training and an extended internship.  Shelby’s internship has come to an end but she has left a lasting impression on our hearts! We are excited for the lucky Aussie kids who will get to work with Shelby! Enjoy Shelby’s write up about her experiences at GKTC and with American culture. ~Elizabeth

From missing home, to eating crickets on my first day, to getting abs and a sore throat from screaming so much in my first ever haunted house to working with children and adults alike who have taught me more than I’ve ever learned before, it seems impossible to condense the last six weeks into one blog post. And yet, I’m going to give it a red hot go.

So, where do I begin… Well, let’s start at the start. I decided a while ago to embrace every opportunity and run with it. Needless to say, when I was offered the opportunity to partake in the ACTS Professional Cohort and internship over in America at Growing Kids Therapy Center, I could not resist. No matter what, I just had to make it work and so I did – 4 weeks later and I found myself on a 26-hour adventure… From car to plane to plane to plane to car to finally arriving in Herndon, Virginia safe and sound. I had made it, phewf!!

I think it would be a little bit too much to explain every adventure that came to follow throughout my little journey. One thing I will mention though is that I got the chance to experience a full-fledged Halloween with carving pumpkins and a ghost tour through Old Town Alexandria, which was kind of spooky and kind of weird but interesting all the same and I also got to explore through the scariest haunted house ever, which frightened the heeby jeebies out of me. And last but certainly not least, I got to see 407 trick-or-treating children knocking on the door eager to receive full-size ‘candy’ bars on the night of Halloween.

And believe it or not, there were many more things that I saw even more incredible than this. I spent day after day in the clinic at GKTC mostly 9am – 6pm days, 5 days a week; observing and learning, regulating and designing, as well as taking one-on-one sessions and leading the way in a couple of groups. In any other setting such a day could be considered boring or long, but not these ones. I would describe them in much a different manner like incredible or mind opening or just WOW. The most amazing thing about it was that every hour was different and every day I got the chance to observe and learn a little more. Many of the days left me speechless and lost for words.

The thing is, as much as society tries and tries, we cannot and should not try to define each and every human with a label for this and a label for that; so often these labels misrepresent people into something they are not. Simply put we are all human and whether we agree or not, we all deserve a voice and we all deserve the right to be heard. I have always had such a mindset but seeing the intelligence and the looks of determination and gratitude in each of the kids’ eyes made me begin to understand that there are no limits to what is possible.

As Ian concisely put it – “EVERYTHING IS POSSIBLE.”

In the past six weeks the insights I’ve gained are abundant and incomparable to anything else I’ve ever experienced but I think the most important thing that I have come to really truly realise is that this world is totally upside down, but all it takes is a different perspective to turn a situation around. Think of it this way, when the world seems doomed and seems to be coming crashing and tumbling down, remember when we see a shooting star we make a wish. As it soars through the sky on practically a collision course, we see a spark of hope, we see light and we simply wish.

Ryan –

“MY THREE WORD MOTTO WOULD BE
HAVE FAITH ALWAYS.”

 

 

~Shelby

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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.

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

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