We have a dream… celebrating MLK weekend in Atlanta

In celebration of Martin Luther King Day, we are reposting this blog from MLK weekend in Atlanta 2 years ago!  Wow!  It is amazing to see how far along these fantastic spellers and self advocates have come since then! The fight for communication rights is stronger than ever! ~Elizabeth

I returned from my second workshop in Atlanta on Martin Luther King Day, January 19, 2015. What a great workshop – 9 funny, smart, hard-working and thoughtful kids, great parents eager to use…

Source: We have a dream… celebrating MLK weekend in Atlanta

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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.

Creating Social and Communication Opportunities

We are often inspired by the creative strategies our families find to make education and communication on the letter boards interesting and meaningful. During a Skype consult, Jasmin explained how she created social and communication opportunities between her son, who spells to communicate, and her nephew. Jasmin graciously agreed to share her fantastic strategies as today’s guest blogger!

Guest blogger bio: Jasmin Dutton is one of our GKTC moms from Quebec, Canada. She has been an avid homeschooler to both her sons for the past 7 years. After months of attempting to teach her son to point on her own, Jasmin and Wyatt took off on the boards after observing a GKTC workshop in March 2016. Jasmin enjoys gardening, and the outdoors in all seasons. She likes to emphasize a love of nature, curiosity and social contribution in her teachings.

Beyond the Boards

What has always attracted me most to Growing Kids Therapy Center is the emphasis Elizabeth and her team places on community building and collaboration amongst their students. This is something I’ve always wanted for my son but due to so many challenges, have struggled to create.

This past summer I have been determined to make it happen. So I took everything I have learned from coaching my son on the boards and put it into helping him connect socially.

Tolerance – for socializing: not outside the house, zero with strangers, tricky with same aged peers, and requiring structure and support. So it would have to be at home, someone older and familiar and well planned. There was also no way Wyatt would tolerate being left alone with anyone. This was not going to be respite. I would have to be present and directing the engagement.  Luckily, my 17 year old nephew lives nearby so I got in touch with him and made arrangements for him to come by for an hour a week to “hang out” with Wyatt and me.

Skill Goal – the challenge here was socializing so it would be over the top to work simultaneously on learning new physical skills. We’ve stuck to familiar activities that Wyatt excels at, such as cooking and swimming and have participated in them as a team, with me coaching both guys in the activity and creating opportunity for them to work together.  I was able to model for my nephew how to interact with Wyatt

Cognitive Goal – having always homeschooled my son, conversation can get pretty stale around here. I wanted my nephew to bring in conversation that would expose Wyatt to what teens are up to; the music, hobbies, and interests. Conversations were started around where my nephew was going to college in the fall, what his course load looked like and what he had to accomplish to be accepted into his program.

Response Level – well, response level wasn’t something I had thought too much of in the beginning, hoping really, that Wyatt would just stick around, but it was something that developed organically over time.  During one occasion, I came up with an activity Wyatt and his cousin could do together.  I would ask his cousin questions regarding his interests, he would then write his answer in invisible ink and Wyatt would use a developer pen to reveal the answer (we have linked two cool options if you want to try this at home!). Wyatt was pretty enthusiastic about the activity and I asked if he wanted me to ask him questions as well, and he agreed. So I quickly ran to get his board and took turns asking the guys each a personal interest question, trying my darndest not to cry at what I was witnessing.

This has been such a huge success for Wyatt that I have recently hired another teen (still familiar but less so) to come by during the week, and am using the same goals with her as I do with my nephew. I still need to remain present and help guide the interactions but my son now has the opportunity to collaborate. This fall, I will definitely be planning out more ways to use the boards during their times together. The experience has given me a burst of confidence and motivation to look closely at the opportunities I want for my son, envision what that could look like for him and make it happen.

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Jasmin, thank you for sharing your fantastic ideas for developing new relationships for your son! For many of our kids, building in opportunities for peer communication requires creativity, I know so many families will benefit from these great strategies!

~Elizabeth and Jasmin

Nonspeaking Youth Advocate at TASH Conference 2015

An international leader in disability advocacy, TASH is dedicated to equity, opportunity
and inclusion for all. They work to ensure everyone has an opportunity to learn, work and enjoy life amongst a diverse community of family, friends and colleagues. This December, in Portland, Oregon TASH celebrated 40 years of generating change within the disability community. Five students from Growing Kids Therapy Center attended to advocate for their desire for an inclusive education. Benjamin McGann, Emma Budway and Huan Vuong are students from Arlington Virginia who flew out to Portland to present. They each gave a TASH Talk (a 10 minute talk in the style of a TED Talk) and presented on a 50 minute panel discussion along with GKTC’s Portland spellers, Liam Paquin and Niko Boskovic. Huan was also an invited panelist on a panel titled Sound the Alarm: Addressing the Ongoing Crisis in Communication Services and Supports. These five students were confident, insightful, witty and brilliant!  They had the audience hanging on their every letter as they used the letter boards to spell out their powerful messages of advocacy, inclusion and acceptance. Read on to hear what they had to say!

Huan, Elizabeth, Emma and Ben ready to take on their TASH Talks!

Huan, Elizabeth, Emma and Ben ready to take on their TASH Talks!

TASH Talks
Ben, Emma and Huan each gave a TASH Talk.  Each talk was limited to 10 minutes, since it takes a bit of time to spell, the students prepared an introduction ahead of time (in italics) and completed the remainder of their talk on the letter boards (in all caps).

Hello. My name is Benjamin McGann. My talk today is about advocacy and leadership. You might ask, what does this guy know about advocacy and leadership? Well, it turns out I am an expert in advocacy and leadership. My expertise comes from years of being left out. Left out of education. Left out of conversations. Left out of decisions. Left out of everything. Because I don’t talk, I have been presumed incompetent and worse insufficient to matter. This must stop. Stop thinking people with disabilities don’t matter. I am here to tell you that everyone matters. We must provide our  young people with opportunities. These opportunities exist through education. I can tell you I did not learn through school. I have acquired my knowledge through listening and thinking about everything I hear. I challenge you to listen to me and think about what I am telling you.

THANK YOU FOR BEING HERE.  I AM IN MY LAST YEAR OF HIGH SCHOOL.  I HAVE BEEN IN AUTISM CLASSROOMS ALL MY YEARS OF SCHOOL.  I HAVE NEVER BEEN INSTRUCTED BEYOND A SECOND GRADE LEVEL.  STOP TREATING AUTISTICS LIKE THEY CAN’T LEARN (video).  SPEECH IS NOT A SIGN OF INTELLIGENCE.  EVERYONE NEEDS TO BE EDUCATED.  THIS IS MY CHALLENGE TO YOU – FIND A WAY TO INCLUDE NONSPEAKING AUTISTICS.
Emma presents her TASH Talk before a packed room.

Emma presents her TASH Talk before a packed room.

Hi. My name is Emma Budway. I am happy to be hear and tell you my story. I will do the majority of my presentation on powerpoint because I have trouble controlling my body. It takes me a while to spell however spelling is the communication method I use best. I am able to express my thoughts and knowledge through spelling on the letterboards. My mouth is not reliable. Most of what I show with my body is ridiculously inappropriate or at best unreliable. So if you see or hear me do something stupid it is not me it is my body. Now that I have explained about the disconnect between my brain and body can you understand when I have been denied a meaningful education? I am sympathetic to teachers who had to deal with my outbursts but that does not mean that I should not have been shut away in special education. Kept away from normal classes and denied the chance to learn with peers. One thing I want you to know is there are so many out there like me. Nonspeaking autistics like me that want you to know how much they want to learn. I am asking on behalf of those who do not have a voice to hear our plea to teach us. Respect our brains as tough as it may be please accept our lack of motor control. Stop trying to make us like you. That is a losing proposition.

THANK YOU.  I HAVE SO MUCH TO SAY.  I WANT TO TELL YOU THAT DESPITE MY MOUTH I AM SO EAGER TO LEARN.  TALKING IS NOT THE ONLY WAY.  I HAVE SO MUCH TO SAY.  I WANT TO LEARN.  EQUAL RIGHTS FOR ALL LEARNERS.

Emma closed her presentation with a poem she wrote in July, 2015.

TELL ME NO MORE!
QUIET THEY SAY
ONLY WISH I COULD.
HANDS TO SELF
ONLY WISH THEY WOULD.
NOT TIME FOR SINGING
WHEN IS?
IT HURTS MY EARS
TELL ME ABOUT IT!

My name is Huan Vuong. I am eighteen years old. I live in Arlington, Virginia. I have been excluded from regular education my entire life. The reason is because I cannot control my body. This is a problem when no one will take into consideration my motor planning problems. My brain is mighty buy my body is weak. I can listen to and understand everything. However if you are asking me to show you what I know via speaking or writing or typing independently I can’t guarantee that my body will cooperate. How do you support kids like me in the classroom? Acceptance is the answer(video).

I VERY MUCH WANT THE SAME OPPORTUNITIES THAT ARE EXTENDED TO TYPICAL KIDS.  NOT HAVING RELIABLE SPEECH SHOULD NOT REMOVE MY RIGHT TO LEARN. I AM A CITIZEN, AN AMERICAN AND AN EAGER LEARNER.  I WANT THE SAME ACCESS TO EDUCATION AS EVERY OTHER PUBLIC SCHOOL STUDENT.  PLEASE STOP FOCUSING ON A CURE.  THE CURE IS ACCEPTANCE.  THE CURE IS MEANINGFUL EDUCATION.  THE CURE IS TO PRESUME COMPETENCE.  I KNOW THAT THIS REPRESENTS A NEW WAY OF THINKING BUT I HAVE FAITH IN YOU AND YOUR ABILITY TO LEARN NEW THINGS.  THANK YOU.

Huan’s invited speech for the panel, Sound the Alarm: Addressing the Ongoing Crisis in Communication Services and Supports.  The members of this panel invited Huan to join their presentation. The stated intention of this panel was:  “Current evidence suggests that many persons with significant support needs are not receiving the supports and services they require to communicate successfully across environments. In schools, individuals are being denied access to successful supports because they are not deemed “evidence based” while other individuals are denied access because they are required to demonstrate competence before given an opportunity to learn. In this session, panel members will review the existing evidence, describe existing legislation and guidance related to the crisis, and call participants to action in continuing 40 years of progressive leadership by joining a work group to address the crisis.”

GOOD MORNING (video). (crowd responds, “good morning!”). MY NAME IS HUAN VUONG.  I AM NONSPEAKING AND AUTISTIC.  I COMMUNICATE VIA SPELLING ON A LETTER BOARD.  MY SCHOOL DOES NOT ACCEPT MY METHOD OF COMMUNICATION.  I AM THEREFORE DENIED A MEANINGFUL EDUCATION.  MY ONGOING FIGHT WITH THE SCHOOL IS YIELDING NO RESULTS.  I AM CLEARLY CAPABLE OF LEARNING YET NO SCHOOL WILL TEACH ME.  THIS MUST STOP.  I AM NOT ALONE.  THERE ARE SO MANY LIKE ME WHO DO NOT SPEAK WHO ARE BEING ROBBED OF AN EDUCATION.  THIS IS AN ATROCITY THAT OUR EDUCATION SYSTEM MUST STOP. THANK YOU FOR LISTENING.

Emma, Niko, Huan, Ben and Liam present in a panel discussion, Voices of Exclusion: Nonspeaking Youth Advocate for Inclusive Education.

Would you like to welcome our audience?

Emma: HI EVERYONE
Niko: HELLO
Huan: HI THERE SO GLAD YOU ARE HERE
Ben: I AM DELIGHTED TO BE HERE
Liam: HI WELCOME TO PORTLAND

Can you address the difference between speech and understanding?

Emma: I CAN NOT SPEAK BUT I CAN THINK.
Niko: MY COMPREHENSION IS PERFECT.  I JUST CANT GET THE WORDS OUT OF MY MOUTH.
Huan: MY CONTROL OF MY BODY IS LIMITED.  HOWEVER I CAN THINK JUST FINE.
Ben: GETTING THE WORDS OUT OF MY MOUTH IS IMPOSSIBLE BUT THIS IS NOT A REFLECTION OF MY THINKING.
Liam: MY STUPID MOUTH BETRAYS ME. I AM SO MUCH SMARTER THAN I SHOW.


What can you tell our audience about your motor system?

Ben: MY MOTOR SYSTEM IS UNRELIABLE AT BEST. AT WORST MY MOTOR IS A DISASTER. I CANT CONTROL MY SELF AT TIMES. SO I VERY MUCH GET EMBARRASSED BY MY BODY.
Huan: I AGREE COMPLETELY WITH BEN! I HAVE MORE CONTROL OF MYSELF AT TIMES THEN FOR NO REASON I DON’T.
Niko: DITTO. I CANT SAY IT ANY BETTER.
Emma: SAME HERE.
Liam: I AGREE WITH MY LOVELY FRIENDS!

Liam, can you please explain the difference between the words that come out of your mouth versus what you spell on the letter boards?

L: WORDS LOVE TO TRICK ME.  THEY GIVE LIES TO MY THOUGHTS.

How does your lack of speech affect your education?
Emma: NO ONE TEACHES US BECAUSE WE DON’T SPEAK.
Niko: MY SCHOOL IS ALLOWING ME TO RPM. THIS HAS BEEN LIFE CHANGING.  I FINALLY AM GETTING AN EDUCATION.(Video)
Huan: LUCKY NIKO! THIS NEEDS TO BE THE NORM NOT THE EXCEPTION.
Ben: CANT AGREE MORE.  WHAT POSSIBLE HARM COULD COME FROM TEACHING US?
Emma: I AGREE WITH BEN.
Liam: SO WHAT ARE YOU IN THIS ROOM GOING TO DO TO CHANGE THINGS?

Do you have suggestions for educators? 
Liam: YES. START HAVING A LITTLE FAITH IN US!
Emma: TEACH US LIKE WE WANT TO LEARN.
Niko: I THINK YOU NEED TO CHANGE YOUR ATTITUDE.  STOP DOUBTING AND START TEACHING.
Huan: HAVE FAITH IN OUR ABILITY TO LEARN.  UNDER THIS UNCOOPERATIVE BODY IS AN EAGER STUDENT.
Ben: GETTING TO KNOW YOUR STUDENTS ABILITIES WILL ASTOUND YOU.  VERY SMART, HEARTS OF GOLD, AND WILLING TO GO TO ANY LENGTH TO LEARN.

Rapid fire!  Can you briefly tell us what you have to offer and inclusive classroom?  
Ben: MENTAL AGILITY
Huan: MY LEADERSHIP
Niko: MY FRIENDSHIP
Emma: HUMOR
Liam: REALLY GREAT DANCE MOVES

Last thoughts for our audience?
Emma: PLEASE OPEN YOUR MINDS
Niko: HAVE A NEW RESPECT FOR AUTISTICS
Huan: MAKE ACCOMMODATIONS FOR YOUR LEARNERS.
Ben: STOP EXCLUDING NONSPEAKING AUTISTICS.
Liam: RESPECT YOUR LEARNERS.  WE WILL NOT DISAPPOINT YOU.

Thank you to the members of TASH who were a supportive and attentive audience. Thank you to the families who supported their student’s desires to present at this conference. Most of all, thank you to Ben, Emma, Huan, Niko and Liam for your courage, your insights, your advocacy and your words.  We could not be more impressed and proud of you!

~Elizabeth, Ben, Emma, Huan, Niko and Liam

 

A Letter to My Body

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A few weeks ago, my client, Ethan, came in for his session very upset and agitated.  We began our lesson and tried working through his irritation to no avail. Ethan was becoming more and more distraught. So, we took a short detour from our lesson to discuss the issue. I am a big stickler for doing lessons in letterboard sessions – it is part of the process – engaging the brain and then body in cognitive lessons. However, sometimes the situation calls for a change in plan and this was one of those days!

Elizabeth:  Let’s break for a moment Ethan. I can see you are really upset. What’s going on?

Ethan:  I AM UPSET BECAUSE I AM NOT KIDDING AROUND AND I CAN NOT HELP IT WHEN MY BODY ACTS OUT.

Elizabeth: Let’s try writing a letter to your body.

DEAR BODY,

I DO NOT LIKE YOUR BEHAVIOR TODAY!  YOU ARE MAKING ME DO THINGS I DO NOT WANT TO DO AT ALL! DO NOT MAKE ME LOOK BAD ALL THE TIME.  I DO NOT WANT PEOPLE THINKING I BEHAVE LIKE THIS ON PURPOSE.  JUST LIKE A PUPPET MY BODY MAKES ME DO STUPID THINGS ALL THE TIME.  I WOULD NOT MAKE SUCH STUPID CHOICES IF I WERE IN CHARGE OF MY BODY.  NO ONE CAN UNDERSTAND HOW PAINFUL THIS IS TO ME.  I HATE NOT BEING IN CONTROL OF MYSELF.  IT SUCKS SO MUCH. ONE DAY I AM LIKE A WELL BEHAVED KID AND THEN I AM LIKE SOME SORT OF CRAZY PERSON.  I GUESS THIS IS WHY PEOPLE DOUBT THAT I AM SMART.  I REALLY CAN’T BLAME THEM. I WOULD PROBABLY THINK THE SAME THING IF I SAW SOMEONE ACTING LIKE I DO SOMETIMES.  IT IS A BUMMER TO BE STUCK IN THIS BODY THAT MAKES ME LOOK STUPID WHEN I AM ACTUALLY REALLY SMART.  THE END.

Elizabeth:  How do you want people to treat you when your body is going crazy?

Ethan: JUST IGNORE MY BODY AND TALK TO ME LIKE YOU WOULD IF MY BODY WAS NOT FREAKING OUT.  CALLING ATTENTION TO IT ONLY MAKES IT LAST LONGER.  KNOW TIME WILL MAKE IT BETTER.  I AM ALWAYS TRYING TO CONTROL MYSELF.  BE PATIENT WITH ME.

Elizabeth: Can I share this on my blog? I think other kids have this same issue and it may help them.

Ethan:  SO GREAT IF MY WORDS CAN HELP OTHERS.

I am so grateful to Ethan and his family for letting me share his letter to his body and his other thoughts with you. Motor control is HUGE issue for our clients.  I believe we need to be very careful about what we label as “behavior” (this word is rapidly becoming my least favorite) and what is truly a lack of motor control or the manifestation of another underlying issue.

Ethan’s irritation continued over subsequent sessions. His mom and caregiver reported that he has been similarly bothered at home. The cause of Ethan’s increased discomfort and motor activity and lack of body control started to come out during a creative writing about the scientific method. (Great information is often revealed “sideways” in cognitive lessons). Turns out that Ethan is very anxious about starting middle school in the next couple of weeks and “that is why my body is acting out.” Huh….imagine that! Not an intentional “behavior” but a very understandable anxiety about embarking on a new, exciting but completely unknown educational experience! How very like any other kid getting ready to head off to middle school! ~Elizabeth