Inclusion ~ Evan, Shine Your Light!

I wanted to finish off 2016 with one of our favorite moments of the year. Prepare for some guaranteed happiness as you witness what happened when one of our clients was given the opportunity to conduct his school choir. Evan is one feisty, adorable guy who never fails to make me laugh during our sessions together. His communication through spelling is strong – but Evan has a way of getting his point across with or without the letterboards! Evan’s video of his conducting debut went viral but when his mother told me the entire story,  I knew you all needed to hear it too!  Evan’s mom, Elizabeth Zielinski, agreed to share Evan’s story with us as today’s guest blogger.  Enjoy and kick off the New Year by sharing this story of joy!!  ~Elizabeth, Elizabeth & Evan 

My son, Evan, is 11 years old, autistic, and unreliably verbal. He is in fifth grade in public school, placed in a self-contained classroom, with various opportunities throughout the day where he is included with his neurotypical peers in the general education setting.

Some of Evan’s behaviors prevent him from being fully mainstreamed into general education classes for safety reasons. But with our insistence and with our school’s cooperation, he is included in many experiential learning opportunities and also in extracurricular events. One of those events was the recent fifth grade winter chorus.

His dad and I were told he would be included last Fall, and we hesitated to give permission because we didn’t know how well he would do with the sensory stimulation. But we had a lot of faith in our school’s remarkable music teacher, Mr. Charlie Ring, and trusted that he would ensure Evan’s experience was a good one.

Leading up to the event Evan grew excited and told us that he was going to be a guest conductor of one song. He showed us his plan for approaching the front and leading the chorus.  We were naturally entertained and thrilled to expect this.

When the afternoon school assembly performance arrived, I waited expectantly to see Evan’s debut as conductor. To my disappointment, it didn’t happen. I approached Mr. Ring to ask why, only to learn that it was never part of the program, but a way that Mr. Ring was helping Evan to participate in rehearsals. Evan didn’t seem to realize that it wasn’t going to happen for the actual performance, or if he did, his unreliable speech meant we didn’t know what he expected or hoped to have happen.

And that’s when the magic started. After I asked my question of Mr. Ring and we realized the misunderstanding, Mr. Ring only asked if I thought Evan would be able to do it without a formal rehearsal. I said I thought he would. Right then and there, Mr. Ring starting planning the changes to include Evan as guest conductor in the evening performance for the community.

Prior to the second and last performance, Mr. Ring explained to the rest of the fifth graders what the change to the evening program would include:

Missing from that video was the round of applause Evan got from his classmates before the announcement that he would be conducting, proving that acceptance comes naturally to kids when given the opportunity.

Evan waited patiently backstage, but you can see the anticipation on his face.

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And then, show time. It was the second performance of the day, he had been wearing his uncomfortable show clothes for hours, and he had to stand on risers and pay attention; even though singing along was not an option for him. Anyone who knows him would tell you, all of that alone was a lot to ask. But toward the end of the show, this happened:

No one had seen him do this before, but he showed us that it was worth the wait. As of this writing, the video has been viewed over 50,000 times on Facebook and another 1,300 times on YouTube; and has been shared hundreds of times worldwide. Based on the comments I’ve received; it has touched a lot of people.

What I love about this is not just that my son had a moment of joy and celebration. It’s also that everyone else shared in that with him. It wasn’t just the joy on his face in the video that touches me, it was the appreciation of his fellow fifth graders and the audience when they watched him have his starring moment. There are some chuckles, but not at Evan’s expense.  They are just seeing him have an entertaining experience.

The most important thing we have learned about inclusion through this experience is that it doesn’t mean building events around Evan’s needs, oversimplifying his experience, or putting him into a fully neurotypical environment and seeing how long he can last before extracting him. What it does mean is being open to and creative about those moments that allow him to learn and grow like any student wants to do. That requires seeing him with the best of expectations about what he can do, and trusting that no matter what happens, everyone will grow from it.

Finally, the awesome Mr. Ring sent Evan a celebratory gift after the fact: he now owns the conductor’s baton he used that evening as a reminder of his starring moment.

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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

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