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Candid Conversation With Simon From the UK!


When we launched this blog in February 2021, I voiced to our team a strong desire to reach beyond my comfort zone and learn more about how parents and individuals with disabilities in other countries live a life unexpected. But, unless one has the time to spend hours researching individual disabilities in other countries, connecting can be very difficult—especially while you are caring for a loved one. (Trust me, I have spent many more days researching diseases, syndromes and disabilities related to epilepsy than you want to know about. It can turn your stomach into a volcano very quickly. Take care when you need to know.)


Additionally, this kind of exploration requires strong fortitude and a sincere heart for others. While I do not always embody these qualities, I wanted to hear the stories of families benefitting from research in their respective countries. How or when it would happen was a mystery, but I could dream and plan for it! And so, our dream team at Haute in Texas began strategizing and creating the plan.


Meanwhile, I just kept writing with an ever-broadening worldview of the many families caring for a family member with a disability. Remember that my husband is the physician in the family, not me! I approach every new challenge from the heart of a parent, only desiring to know more.


Last month, my hope of sharing our journey with an individual from another country became a reality. Our team connected with a young man far from my state of Texas—an individual with a disability new to me, but with similar appearances as Robert’s and so many young adults I know. This new friend is Mr. Simon Wilson from Sussex in the United Kingdom (UK).


When I had the privilege of speaking with Simon via Zoom, it was life changing for me. Simon has Athetoid Cerebral Palsy and, as we shared life stories and laughed very loudly, our spoken words were deep and transparent, but different. They were different because I can vocalize my words, and Simon can only communicate his words through an advanced Tobi Eye Tracking Communication Device. He has no speech without this assistive technology.


I will be the first to admit that I stared through the Zoom link on my laptop right into Simon’s eyes on the other side of that link in the UK. When we would say to our kids when they were younger, “Don’t stare,” I knew it was a good instruction to give them, as most people do not like eyes glaring at them! However, as I watched Simon use his eyes to type on his device each word to make a sentence, to make a conversation happen over the internet, I stared! You bet I did. I stared as his personal assistant, Rachel, instructed me that Simon’s eye movement upward would indicate a “Yes” answer. So, I stared into his eyes and looked for that answer.


As we dove into our conversation and I shared with him the similarities between himself and my Robert, it became clear to me that we were going to communicate on a deep level. His verbal tones when he laughed and rocked his wheelchair back and forth were very similar to Robert’s sounds and movements. Simon even loves to dance from his wheelchair like Robert did! Simon made me feel very comfortable with the entire new experience for me and graciously allowed me the freedom to ask questions about everything. I know our talk only scratched the surface of his journey, but I felt like I knew him instantly. I waited for his typed thoughts that then turned into electronically generated verbalizations as Rachel assisted me in understanding how some aspects of Simon’s life were carried out.


One thing very evident to me in our meeting was that Simon oversaw what he wanted to say to me, and I was interviewing him. He was clear about wanting to share his incredible story, and I was eager to listen and learn. Since that day, I have started to read his book, “No Challenge Too Big,” and have gleaned additional information which is helping me to understand Simon’s journey and his intelligence. He is focused on communicating clearly with purpose and focus.


I asked Simon two questions during our Zoom call:

  1. What is the hardest part of your life currently?

  2. What is the best part of your life currently?


Simon’s answers were so direct and enlightening. He gave me exactly what was on his mind. His answers were his thoughts and ideas. And as he moved his eyes ever so slightly to instruct his speech device to type his answers, it was obvious to me that he has complete control over his thoughts. I leaned forward and waited for his answers as his eyes moved from side to side. I was really in awe staring into his eyes, knowing he was about to answer me. And so, he did….


Simon’s response to Question #1:


— Attitudes of people towards people with disabilities

— Professionals who don’t respect his abilities

— Durable Medical Equipment (DME) professionals not thinking outside the box

— Developing a skill set for communicating in a kind way

— COVID ISOLATION


Simon’s response to Question #2:


— Having this interview

— Connecting with like-minded people

— Loves face-to-face communication and having that connection


I told you he was direct! He and Rachel gave me specific examples of how a few of these actions by others had hurt him and made him fight for what he needed. It was a pleasure speaking with Simon and understanding his disability and what he has overcome. He is perfectly capable of communicating so much joy and happiness through is contagious laughter, and intelligent and passionate ideas through his speech device. He didn’t miss a beat! I was blown away.


You know how you think you have seen something in a television show, movie or a documentary and you think you understand it? Well, that’s how I felt about eye tracking communication devices until I met Simon. I literally watched his eyes speak! I will never forget my realization that seeing him fully engage in our conversation was like nothing I had ever seen before.


There are probably many families in my local community who use eye tracking communication devices. I would like to meet some of you one day. I want to know who you are and hear your story. Hopefully, Simon and I will continue sharing our journeys through Zoom, and he will permit me to interview him again. May Simon stay strong as he has much to teach naive new friends like me!


Let’s keep our conversations across all abilities open and meaningful, whether in your neighborhood, on the other side of your state, or across the waters to a different country. Let’s find the like-minded people fighting for understanding and inclusion and get to the business of making it happen!


Thank you, Simon, my friend.


Listening Library: Gift Of A Friend (Demi Lovato)

https://youtu.be/CZtUA9_ID0U


“Some friends play at friendship, but a true friend sticks closer than one’s nearest kin.”

(Proverbs 18:24 NRSV)



Gift Of A Friend


Sometimes you think you'll be fine by yourself Cause a dream is a wish that you make all alone It's easy to feel like you don't need help But it's harder to walk on your own

You'll change inside When you realize

The world comes to life And everything's right

From beginning to end When you have a friend By your side That helps you to find The beauty you are

When you open your heart and Believe in The gift of a friend

The gift of a friend

Someone who knows when your lost and your scared There through the highs and the lows

Someone to count on, someone who cares Beside you wherever you go

You'll change inside When you realize

The world comes to life And everything's right From beginning to end When you have a friend By your side That helps you to find The beauty you are

When you'll open your heart and Believe in The gift of a friend

And when your hope crashes down Shattering to the ground

You, you feel all alone When you don't know which way to go And there're no signs leading you home You're not alone

The world comes to life And everything's bright From beginning to end When you have a friend By your side That helps you to find The beauty you are When you open your heart and Believe in When you believe in When you believe in

the gift of a friend Ohhhhhh

Songwriters: Dodd Andrew Creighton / Lovato Demitria

Gift of a Friend lyrics © Walt Disney Music Company


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