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.

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

Silencing the Silent

Huan

Huan Vuong started advocating for communication and education rights for himself and other nonspeaking individuals as soon as he got on the letterboards. This was his second year presenting at the TASH conference. Due to Huan’s strong advocacy, his school system has recently responded to his requests to meet his communication needs and will provide him with a trained partner so that he can meaningfully participate in general education classes! He will also begin taking classes at a local community college! Huan is the embodiment of determination and self advocacy.  Enjoy his TASH Talk. ~Elizabeth & Huan 

Hello everyone. My name is Huan Vuong and I am happy to talk to you today. Perhaps you notice that I spell instead of speak.

This is the best way for me to communicate. My speech is limited and unreliable. But I can communicate very reliably when I type and spell. Learning to communicate this way changed my life. I finally had a way to express my thoughts. You would think that this new expression would open new educational doors for me. I did too.

The problem is that I have to have a communication partner who knows how to coach my body when I get stuck or too stimmy. I am still autistic even though I can communicate. This means I have motor and sensory issues. My school has been resistant to the idea of my need for support. This has been incredibly frustrating to me.

For the past three years, I have been fighting for my right to be included in general education classes. Completing high school with a real degree seems to be an impossible task. You might think that would be easy, but you would be wrong. This should be a no brainer.  I am a smart guy, I can learn, I want to learn but I need a trained communication partner.

This is why I am here today. TASH is devoted to supporting people with disabilities. Communication is no longer my disability. Motor and sensory will continue to challenge me. But right now the disability I face is access. This is not acceptable to me. I request your help to open access to education, to opportunity and to real inclusion into the neurotypical world by supporting communication rights for all nonspeakers.

Thank you for listening. Now I need to ask you for a favor, I need your voice. I need you to speak up and advocate for me and my friends. Don’t worry we will tell you what to say. Say that we are smart. Say that we want to learn. Say that education is for all. Say that communication is a human right. Thank you. —