Tribe Honors the Mothers of the Spelling Community

In March, members of Growing Kid Therapy Center‘s Tribe began planning an art project honoring their mothers, and the mothers and motherly figures of the spelling community. They decided to focus on plants for the image that would be recreated with donated recycled materials, and the brainstorming began with coming up with words to describe their moms: protective, tireless, gentle, fierce, and vibrant. They researched different types of plants and what they represented, and settled on the yellow cactus flower, and wrote the following dedication.

They began by soliciting donations from the GKTC community for various recycled materials, and once the donation began pouring in (thank you parents and community members!), devoted time each week to painting and embellishing their individual canvasses. After months of hard work, they came up with ideas for a reception where the artwork would finally be revealed, including a photo booth complete with flower bouquets, bunting, tea, and cookies and other treats! Invitations were sent out, and on Monday the big reveal FINALLY took place!

To say the mom’s were delighted would be an understatement! If you find yourself at GKTC, make sure you have a stop in Phoenix to admire the hard work and amazing creativity that went into this collaborative art project.

Check out more photos of the mom’s and members of Tribe below!

Tribe Spreads Love

TRIBE CONTINUES TO GIVE! The Tribe are nonspeaking young adults who meet weekly at Growing Kids Therapy Center and who use spelling as a form of communication and are all highly fluent in their ability to communicate. Growing Kids Therapy Center is dedicated to teaching non-speaking, minimally speaking and unreliably speaking individuals how to Spell to Communicate (S2C). The staff at GKTC is a multidisciplinary team who meet the needs of our clients with motor and sensory differences. We believe that communication and motor control leads to autonomy, independence and inclusion.

Members of the Tribe with their completed Valentines!

Over the recent holidays, Tribe expressed an interest in doing a philanthropic project, and they made and sold holiday cards, as well as organized a toy drive. They partnered locally with The Barbera Foundation, whose mission is to promote positive change by inspiring others to engage in the community and help those less fortunate, and became one of their top donors by donating the majority of the money raised to their Bikes for Tykes program. In addition, they also donated toys to Cornerstones in Reston, and made a cash donation to a local family who lost everything in a house fire. These are individuals who desire greatly to make a positive impact in our community, and this drive was only the beginning!

Tribe is currently partnering with the Barbera Foundation for the 10,000 Valentine’s: Independent Initiative.  The goal is to deliver 10,000 Valentine’s Day cards to disabled vets, active duty military stationed overseas, children who are currently hospitalized, and homeless people living in DC.  

Tribe has been working for the past two weeks to design and prepare to make six different cards with members of the community (spellers and their communication partners, community members, friends and family!), who were invited to the GKTC office this Monday between 1:30pm and 4:00pm to assist them in this endeavor. Each member of the Tribe picked a design for a Valentine and made a prototype.  The room was divided into four stations, and members of the Tribe worked with our visitors to make the cards, come up with the greetings, and write them inside the cards. We had a wonderful turnout, and far exceeded our goal of making 50 cards.  Visitors included parents, siblings, friends of the community, and a representative of the Herndon Town Council. At last count over 120 cards had been made. These cards have been designated to be delivered to veterans at Walter Reed National Military Medical Center.

Happy Valentine’s Day!

The Tribe, Janine, Meghann, Kelly and Elizabeth


Tribe Gives Back

TRIBE GIVES BACK! This year, the Tribe, a group of GKTC’s nonspeaking young adults, decided they wanted to devote their time and work to community philanthropy. Their efforts have been impressive.

First, the Tribe held a toy drive at GKTC and collected over 3 boxes of toys which they delivered today to Cornerstones in Reston, Virginia. Cornerstones will provide gifts for more than 1400 children this year. The Tribe met with the Cornerstone staff who were hard at work, putting bundles of toys and presents for local families. 

The Tribe also made ornaments which they sold at GKTC, raising $225 which they are donating to Bikes for Tykes through the Barbera Foundation. Tribe is already planning on future collaborations with the Barbera Foundation. 


Finally, the Tribe heard about a local family who has recently lost their home to a fire. The Tribe unanimously voted to donate the proceeds from sales of their literary magazine, In Words We Trust, to the family. 

At Growing Kids Therapy Center, we are grateful to the Tribe for reminding us that the true spirit of the holidays comes from GIVING.  

Happy Holidays!

~The Tribe, Janine, Meghann and Elizabeth 


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

Innovation, Entrepreneurship and Summer Institute

Innovation + Inclusion Welcome

For our final week of Summer Institute, our guest lecturers were Meenu and Sarina from the University of Maryland. Meenu and Sarina work together at the Academy of Innovation and Entrepreneurship and teach students how to think outside of the box and bring new, interesting ideas to life!

After the “getting to know you” portion of the group, Meenu began to talk to us about the introduction experience. She had mentioned she was at a conference with a lot of new people, and noticed that all she was given, was a simple name tag to introduce herself. Yes, a name tag can be helpful…people will instantly know your name without having to ask. But that’s all they will know about you.

Your name.

Sarina mentioned how a conversation can open up if prompted in the right way. For example: Your doctor asks you how many times a week you go to the gym. You can easily and quickly respond by saying “3-4 times a week”. However, your doctor can get a much better answer with more detail, if he asks you to tell him about your last visit to the gym!  

Meenu then asked the students to pair up, and tell each other a few of their own introduction experiences, mostly the awkward ones! We had a small group of 4 students that day, so pairing was easy. Here are a few of their stories:

[Ben chose to ask Ian a prewritten question: Tell me about a time you had a ‘meeting new people’ horror story.]

Ian: Once I found I had all my strength in my arm. This is scary for both others and me.

Ben: I’ve been there as well my friend. Once I met someone who talked at me like I was a dog, and also got in my face like they wanted to give me a scratch

Ian: So humiliating. So rude. That is so hard for many of us to face time and time again.  

[Tom asked Emma the following question]:

Tom: Tell me about a time someone changed your opinion.

Emma: I think our discussion of autism with Tribe and UVA changed my opinion of NT’s acceptance of us.

Tom: The opinions that I have come from my personal experiences. I believe that there is no excuse for violence in protest. I have never participated in a rally where I have had to face off with haters in person. I saw the events in Charlottesville and I respect the restraint the peaceful protestors showed to not throw punches.

 

After hearing from each other, the group was then told to come up with two different products, services or experience ideas to help their partners have a better introduction experience. Meenu and Sarina also reminded us that with these ideas, the sky’s the limit! Go crazy! Get creative!

Challenge accepted.

Here’s what everyone came up with:

Tom’s ideas for Emma: Noise cancelling headphones that allow people to hear Emma’s true words even when she needs to scream. Technology that soothes Emma’s body like a blanket that Emma can upload  a playlist to. She can share her favorite songs. Music is a great conversation starter.

Emma’s ideas for Tom: First, I would create a window that would allow someone to see who you are inside so they see the real Tom. Then I think would create an empathy hat that lets the wearer feel what it is like to have body brain disconnect.

Ben’s ideas for Ian: The first idea I have for Ian is an automated pair of sunglasses that can sense when someone is attempting to engage Ian in conversation, that can read levels of skepticism as well as trust and comfort and/or fear in an individual. This next idea to help Ian is a little out there- What about a service that coaches people how to handle awkward introductions.

Ian’s ideas for Ben: Have a room for him to lay down in or relax before introducing himself to others. Regulation is key in high stress situations. This is true for neurotypicals too. Send in the techs for my next idea. How about a grand screen to show words as he pokes to letterboard. This is easy to do but helpful.

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Wow! We loved every single idea that these guys came up with, and definitely teared up only a little…

Then, with little time left in the group, Meenu and Sarina administered a quick test to students and communication partners!

We didn’t know much about this quiz, except that it felt like a personality test. All we knew was that we had to answer to the best of our ability. Meenu and Sarina did a quick calculation, and by the end of it, we were told to wear a specific color to Summer Institute the next day. Hmmmm, we wondered…

Tom had to wear yellow. Ben had to wear white. Emma had to wear green. Ian had to wear yellow. Janine had to wear yellow. EV, myself, Liz, and Roxy had to wear green.

We later found out that those colors represented what HATS we wore when thinking creatively in a group!

 

  • Green = Creativity, possibility, new ideas, seeking alternatives/concepts
  • Yellow = Brightness, optimism, values, benefits, feasibility
  • White = Information, facts, what’s known, objective, context

 

 

We all agreed with our hat colors!

 

The next day, we talked about a few different inventions made for several different reasons; The comfortable potato peeler, incubators for newborn babies in Nepal, surgical tools, a bowl that could be held several different ways, the waking up experience. We learned that when people hear the word innovation, they think Eureka! Or the moment when lightning strikes, but innovation is not a one time event. It’s a process to find creative solutions to various problems. The design thinking process is a methodical way to creatively solve problems!

 

Here is an example of the activity:

When babies are born with a low birth weight, they’re kept in an incubator. In Nepal, a team made easier, low maintenance incubators. When the team visited hospitals where incubators were being used, they found that the incubators in the hospitals were totally empty. But tt wasn’t that there weren’t any low weight babies… and the clinics had sufficient electricity. What was the problem?

The team interviewed the parents and learned that babies were usually born at home, NOT at clinics. The need wasn’t for cheaper, easier incubators, but the need was to keep babies warm. They also had insight that most mothers in labor didn’t have the means to make it to the clinic. So, the team created blue sleeping bags that were easy to clean and kept their babies warm ( we also learned that white in their culture is associated with death!). EMBRACE is now it’s own company! What does this tell you about the process?

 

Emma:  Had to create the right solution for the right problem

Ian: Seeing the direct problem and understanding the culture

DDK: I think there is an element of compassion to solve a completely new problem.

Tom: The process involves being educated about the community it’s supposed to serve.

Ben: Sensing the problem.

Nailed it!

The last day of Summer Institute, the group went to the University of Maryland to put all of our great ideas to the test! We all broke out into small groups, 1-2 students and a communication partner, to create a prototype for the inventions they created earlier in the week. We shared out the ideas afterward, and discussed how to give feedback using the phrase “I like…I wish…I wonder”.

For example, “I like the colors you used in your painting. I wish to see more of your personality in it. I wonder if people will understand what you are trying to say.”

 

This has been especially important to this group – learning how to give feedback!

 

Take a look at the pictures of our adventure at UMD and the Academy for Innovation and Entrepreneurship below!

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Tom hanging out in the “workshop”!

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Ben and Janine creating the prototype for his sunglasses.

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Ian and Roxy creating the prototype for his “grand screen” letterboard.

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Emma and Meghann creating the prototype for the “Empathy Hat”.

What an incredible experience for all who took part and an amazing way to wrap up our Summer Institute!

Until next time,

~Meghann and The Tribe