A Myth of Giant Proportions

When I first started working at Growing Kids, I worked with students who were brand new to Spelling to Communicate, as well as some who started with Elizabeth beforehand. Over that time, skills began to build, goals were being met, and fluency was increasing. For the students and for myself, as well! Doing a regular, ol’ lesson was getting too easy. We ALL needed a new challenge!

Mythology has always been one of my favorite topics, and I found that it also was a great way to get students to be creative in their own writing. There is always an interesting explanation of natural phenomena, like the changing of the seasons or how fire was created for man. Most importantly though, there is a moral to every story, a lesson to be learned. I was not quite prepared for the lessons my students taught me with their very own “mythology”. You’ll see what I mean.

With every lesson we do, there is always a “creative writing” question at the end. It’s a chance for the speller to express his/her thoughts on the topic. It’s a chance to be creative. This is always my favorite part of the lesson – personalities really start to shine! One of those personalities, is that of my dear friend, Alex.

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Alex is 17 years old and types on a held keyboard. He had been typing pretty smoothly on the keyboard for a while, and I decided it was a good time to practice typing longer chunks at a time. But I wanted to keep it fun! We were doing a lesson on spirit bears (the white bears that live in Canada) and in it, I included the mythology of the spirit bear. This led to the following creative writing prompt:  Write a myth/story about Spirit Alex! 

The story you are about to read, written by Alex, took several weeks to finish. We started out every session with a lesson to warm-up his arm, and we ended every session with his myth. The result is a beautiful, funny, heartwarming story that teaches a very valuable lesson. Check it out below, and feel all the feels!
Thanks for reading,
-Meghann

The Myth of Spirit Alex:

There once was a time when the earth was ruled by blond haired, gentle giants. However, these giants were not very smart. They often found themselves outsmarted at every village trivia night. They were always very good about losing, very kind and congratulatory to the winners. But inside all they wanted was to win. They decided to consult with their ancestors about what to do. The ancestors told the giants they would help. They told the giants to make bread dough, and to sprinkle it with lemon zest. The giants were to then sing to the dough ball.After their delightful serenading, the giants were to place the dough on the front step and go right to bed.

The next day, the giant named dad woke to crying and went to see what was up.
Lo and behold the crying was coming from the big baby now laying where the dough ball was. Dad yelped with glee and shouted for his wife, named mom, to come right away and see what the ancestors had done. Once mom saw what all the commotion was about she knew this baby was a gift from the ancestors. So, she called him Alexander.
Pinned under Alex was a note and it said:

This baby will teach you many things. First you should know that this baby is unlike any other baby. He does not communicate  like other people and he will say things he does not mean to say. It is up to you mom and dad to make this baby feel loved unconditionally and in return he will teach you both things you never thought were possible. P.s. He is super smart and will definitely help you win village trivia night.
Mom and dad were floored but they were up to the challenge. They scooped Alex up and brought him indoors.

Over the next few years Alex proved to be quite a handful.Dishes were broken, hair was pulled, tantrums were thrown and big messes followed Alex like a shadow. But no matter how infuriated mom and dad were at times, they cherished Alex and continued to let him be his own person.

One day, when Alex was big but not fully grown, he met a wise woman and her sidekick, sensei Elizabeth and master Meghann. They were the diamonds in the rough that was Alex’s and mom and dads life. First sensei E showed the trio the Alex that was trapped inside his giant and rude body. Then master Meg continued to push Alex to be stronger. Before you know it, mom could communicate with her boy at last, and he even made a few good pals.
But no matter how big the progress was Alex still was not ready for trivia night. He was swearing like a sailor, drawing on walls and pulling hair. The people of the village could not understand Alex and therefore did not like him very much. 

The people who adored him, however, never gave up on their doughy boy. Cue eye of the tiger, because they all went rocky style on those disbelievers butts. Days turned into weeks, weeks turned into months. Mom knew she needed to take matters into her own hands.
And that is exactly what she did. Gone were the days of trying to fit a square peg in a round hole. Alex was being hurt more than he was being helped by the people in the village who were trying to mold him into one of them, one of the normies. Mom was reminded of the letter left by the ancestors. This baby is unlike any other baby. Of course he was not going to be or learn like other kids, Alex was not like other kids. This was a huge turning point for the whole family.

Alex was inspired now more than ever. No stopping him now. Days and nights passed as Alex and mom worked tirelessly on his social skills. So when the day finally came, Alex was ready to compete in the event. He was on a team with mom, dad, sensei E and master Meghann. They were not at all nervous looking at their competition. Then the bell rang, it was time to start. The first ten questions were too easy for Alex. The next ten were a little less easy but not too hard for Alex. The last round, however, had Alex and the team sweating. He did not know if he knew the answer to the last question. What did Egyptian medics believe was the cure for flatulence? Wait a second, Meghann talked about this. Just then Alex spelled the answer. Leeches. The bell rang, the winner was announced. It was team giant. The crowd cheered and chanted his name. Alex did it.  The end.

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Tribe and UVA Part 2: Social Connections and Friendship

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

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

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

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

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

Sam (UVA): Facial expression

Flo (UVA): Body language

Madison (UVA): Voice intonation

Ben: Getting a smile from a stranger

Katie (UVA): Asking questions and being active listener

Emma: Leaning in

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

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

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

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

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

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

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

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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

Stop making assumptions of Ignorance – TASH 2016

This year, four of Growing Kids’ nonspeaking or unreliably speaking clients presented at the TASH 2016 conference in St. Louis! Each of our students gave a TASH Talk (in the style of a TED Talk) and participated together for a panel discussion on inclusion. We will be sharing their presentations with you over the next few weeks. First up is Tom Pruyn! Only 8 minutes are allotted for the TASH Talks, so Tom typed the first part of his speech (below in regular font) before the conference and then Tom typed the conclusion (presented in bold) live.  Enjoy! ~Elizabeth

I am so delighted to be here today. I am 18 and I love music, cute girls, technology and having friends. I am also autistic and have poor motor control. I am able to talk more than most of my autistic friends but this is not my best asset. My real thoughts are best expressed when I type. Really most of what comes out of my mouth is nonsense.

I talk almost nonstop silliness. Songs, lines from cartoons, credits from movies, and the same things over and over. This is not what I want to say but is what I am good at saying because I have said it over and over. This is incredibly frustrating for me because I know that I sound ridiculous. I don’t want to be judged by the words spewing from my mouth but instead I want to be valued for my true capabilities and the words that I can write.

This might disturb some of you who thought that speech is the ultimate goal. For me, speech has been my downfall. My teachers and many others have assumed that my speech reflects my purposeful thinking. The truth is that my speech reflects the random trash going through my brain. What I spell is what I think. However, I have not been allowed to communicate this way in school so no one was able to ever see my real capabilities. This is why I am talking to you today so you can spread my desire to rethink what you believe about autistics.

*Note: This portion below was typed live at the TASH presentation. We had technical issues with the blue tooth keyboard at the conference.  You can see the typing on the screen in the video.  We have corrected the stuck or repeated letters here for readability.

This is my request to you. Stop thinking that speech is a reflection of intelligence. The ability to learn does not depend on speech. The ability to learn depends on being given a chance to learn. Don’t limit those chances to those who speak reliably. Please give me and my friends a chance to learn. Thank you for listening.

Dispatches from the Roller Coaster

I AM BENJAMIN MCGANN. TODAY MY FRIENDS AND I ARE TAKING OVER THE BLOG TO TALK ABOUT THE PLAY (Dispatches from the Roller Coaster)  WE WROTE WITH STUDENTS FROM STONE BRIDGE HIGH SCHOOL.

Matthew: THE PLAY FOCUSES ON A GROUP OF NON-SPEAKING AUTISTICS THROUGH THEIR DIAGNOSIS AND LIFE IN GENERAL.
Huan: YOU WILL FINALLY UNDERSTAND THE BODY BRAIN DISCONNECT AS WE EXPERIENCE IT.
Ryan: YOU MIGHT WITNESS THE MIRACLE THAT SPELLING BRINGS TO THEIR FUTURES.

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GKTC got a sneak preview of the play! Lucky us!

What did you think of Dispatches from the Roller Coaster?
Ryan: THE PLAY WAS INCREDIBLE.  THE STUDENTS TOLD OUR STORIES IN A WAY THAT WAS CAPTIVATING AND EDUCATING.  IT WAS THE BEST EXPERIENCE OF MY LIFE.

Ryan with his Body and Mind and the cast!

Ryan with his Body and Mind and the cast!

Lisa: THE ONE ACT WAS SO PERFECTLY PUT TOGETHER.  THOSE KIDS PORTRAYED AUTISM IN A RESPECTFUL, TASTEFUL MANNER.  THEY LOOKED LIKE THEY FELT WHAT WE FELT.

Paul with the talented actors played mother and his body & mind (in yellow) !

Paul with the talented actors played his mother and his Body & Mind (in yellow)!

Huan: CAN YOU SAY BLOWN AWAY?  I WAS STRUCK BY THE POWERFUL EMOTIONS THAT WERE PRACTICALLY OOZING OUT OF THE RUNNING DOGS. GLEN HOCHKEPPEL (the Director of the play and drama teacher at Stone Bridge High School), YOU HAVE A BEAUTIFUL MIND. THANK YOU FOR HEARING OUR STORIES.

Matthew: THE PLAY WAS AMAZING. THE SBHS KIDS PLAYED US WELL. I WANT TO SEE IT AGAIN.

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Ben, Tom and Elizabeth have a photo opp with the cast!

Ben: I AM VERY IMPRESSED BY THIS PLAY. WHAT A DREAM TO SEE OUR STORY ON STAGE. I WOULD HAVE BEEN HAPPY TO HAVE WRITTEN THEY PLAY TOGETHER. TO SEE IT GO TO PRODUCTION WAS BEYOND BELIEF. SO CRAZY HOW OUR LIVES HAVE CHANGED. TO LIVE LIKE THIS NOW IS BEYOND BELIEF!

Tom: SIMPLE YET COMPLEX, LIKE US. I DON’T THINK IT COULD’VE BEEN ANY BETTER. WE’RE ALL BADASS, AND YOU SAW THAT AND YOU HELPED US PORTRAY THAT, SO NOW YOU ARE TOO. AMAZING JOB H AND COMPANY.

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GKTC is so lucky to have such strong actors playing our students.  These actors were portraying Tom’s Body & Mind and his mother.

Describe how you worked with the SBHS students to create this play:
Huan: THE SBHS STUDENTS CAME OUT TO WORK WITH US IN THE SUMMER. IT IS THE FIRST TIME I HAVE EVER WORKED WITH TYPICAL STUDENTS AS AN EQUAL. THAT ALONE MADE THIS EXPERIENCE SO INCREDIBLE. I FEEL LIKE OUR TIME TOGETHER LED TO A DEEPER UNDERSTANDING OF EACH OTHER AS WELL AS NEW FRIENDSHIPS.

Ryan: HUAN NAILED IT. THE STUDENTS DID NOT COME OUT AND TELL US WHAT THEY WANTED TO DO. THEY ASKED US WHAT WE WANTED TO ACCOMPLISH IN THIS PLAY. THAT WAS SOMETHING I HAVE NEVER EXPERIENCED. WHAT GREAT INSIGHT COMES FROM COLLABORATION LIKE THIS. WHY ISN’T THIS STANDARD PRACTICE?

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What a ladies man! Ryan had two beautiful ladies to play his Mind and Body!

Ben: AS MY FRIENDS PUT THIS, THE COLLABORATION WAS THE HIGHLIGHT OF THIS EXPERIENCE. TO HAVE OUR WORDS, OUR POETRY, AND OUR MESSAGE PRESENTED THROUGH COLLABORATIVE WRITING WAS LIFE CHANGING FOR ME AND, I HOPE, FOR THE SBHS STUDENTS TOO. SO PROUD TO BE PART OF THIS PLAY.

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The beautiful Emma.

Emma: DITTO WHAT MY FRIENDS SAID. I THOUGHT THE EXPERIENCE OF PUTTING THIS PLAY TOGETHER WAS THE BEST LEARNING EXPERIENCE I’VE EVER HAD. THE STUDENTS VALUED US.

Elizabeth: The actors brought the students’ poems to life!  Here is one of Emma’s poems entitled, Tell Me About It. 

Tom: THE ENTIRE EXPERIENCE WAS EPIC. NOT ONLY DID WE COLLABORATE WITH THE SBHS STUDENTS, WE INCLUDED OUR PARENTS VOICES AND MEGHANN AND ELIZABETH TOO. TRUE COMMUNITY EFFORT.

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Tom after taking in the show!

What are your thoughts on seeing yourself and your parents portrayed on stage?
Ben: IT WAS INSANE! I HAVE TO BE HONEST, I LOVED GETTING TO KNOW THOSE STUDENTS, BUT I WAS NERVOUS TO SEE HOW MY BODY WAS GOING TO COME ACROSS TO THOSE WHO DO NOT UNDERSTAND AUTISM. HOWEVER, IT WAS PURE, IT WAS RESPECTFUL AND IT WAS SO ME! MY MIND ACTRESS IS POWERFUL LIKE ME, WE SHOULD BE FRIENDS. ABBY, MY BODY ACTRESS, WAS SO EXCELLENT!

Elizabeth: This Poem for Poe was collectively written by our GKTC students during poetry week. Inspired by Edgar Alan Poe, each student took a turn adding a line to the poem.

Huan: TO PIGGYBACK OFF BEN, THAT WAS HUGE SOURCE OF WORRY. NO ONE WANTS TO LOOK BAD, BUT THAT’S THE LAST THING THAT HAPPENED. I WANT A PERSONALITY LIKE MY MIND-ACTOR, CALEB PORTRAYED ME HAVING. I ACTUALLY THINK I DO, BUT IT’S HARD FOR ME TO SHOW, BUT I FEEL PRETTY SILLY SOMETIMES. MY BODY ACTRESS GOT ALL MY LITTLE THINGS DOWN PAT, EVEN MY SCRUNCHY SMILE! I’M AMAZED BY ALL THE RESPECT FOR OUR FAMILIES, I FEEL TRULY APPRECIATED FOR THE FIRST TIME.

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Huan hangin’ out with the unbelieveable students and actors who portrayed his Mind and Body.

Lisa: IT MADE ME SO HAPPY TO SEE THE SBHS KIDS PLAY MY FRIENDS. THEY MADE SOUNDS SO WELL, I THOUGHT IT WAS MY FRIENDS! THE PORTRAYAL OF PARENTS WAS MOVING AS WELL.

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Donna meets “Donna”.  Our parents were also included in this play – interviewed and portrayed on stage.

Ryan: THE GIRLS DID A GREAT JOB PORTRAYING ME. I’M PRETTY EASY GOING AS THEY SHOWED. I LOVED THE BLUNT HONESTY OF THE PARENTS, THAT’S OUR LIFE IN A NUTSHELL.

Matthew: THE OPPORTUNITY TO SEE NEUROTYPICALS PLAY AUTISTICS WAS ONE I DIDN’T WANT TO MISS. IT WAS FUN TO FIGURE OUT WHO WAS WHO, WHICH WASN’T HARD. THEY ALL DID SUCH A GOOD JOB, ESPECIALLY THE EMMA-BODY CHARACTER.

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Elizabeth: What a phenomenal experience this was for all involved!  THIS is what inclusive education can produce!  **Local families, there will be an opportunity to see this play one more time as it goes to a drama competition on February 6, 2016.  Watch the Growing Kids Facebook page for details about time and location!!!**
~Ben, Emma, Huan, Ryan, Paul, Tom, Matthew, Lisa