The Brilliant Way This Teen Explained Her Cerebral Palsy to Her Classmates

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Tegan Vincent-Cooke was looking for a way to connect with the other students at her school. The 14-year-old from Bristol, England, has cerebral palsy, and she constantly noticed her classmates avoiding her and staring at her in the halls at school, The Bristol Post reported.

It was a bit hard to make friends,” Tegan told BBC News. “It was quite upsetting and lonely. Maybe because they didn’t know what to say or how to approach me when I’m walking.”

To help the other students better understand her, Tegan created a simple Power Point presentation revealing that she has cerebral palsy. She showed it to her classmates and encouraged them to ask questions. The feedback she received was so positive that Tegan’s mom, Sylvia Vincent, encouraged her to turn the presentation into a short animation, The Huffington Post UK reported.

With help from professionals, Tegan wrote and helped produce “Tegan’s Story: My Life With Cerebral Palsy.” The short video (above) stars an animated rendition of herself, who explains what life with cerebral palsy is like for her.

The engaging animation explains Tegan’s medical condition and how it affects her abilities.

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Doctor
Photo courtesy of Charlie Swan Pullin

It outlines some of the most difficult parts, like the stares she gets at school.

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But the video also makes clear that she leads a happy, fulfilling life doing things she loves.

Horse Ballet
Photo courtesy of Charlie Swan Pullin
Swimming
Photo courtesy of Charlie Swan Pullin

“To the able-bodied world, I’m disabled. But I don’t like the word ‘disabled,’ because it reminds me of when your phone is disabled and it’s useless,” Tegan wrote on her website. “So I like to say ‘dif-abled,’ which stands for ‘differently-abled.’”

Walk in the Park
Photo courtesy of Charlie Swan Pullin

In the animation, Tegan playfully reminds viewers that she’s really not that different from them after all. She goes to school, has hobbies and loves her family, just like people who are able-bodied.

“I say that everyone is unique and therefore different in their own way,” the animation’s voiceover says at the end of the video.

Family Shot
Photo courtesy of Charlie Swan Pullin
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What I Realized About My Disability and Life at 13,000 Feet in the Air

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This time last year, I was in the middle of a semester as an exchange student at AUT University in Auckland on New Zealand’s North Island. I’ve wanted to travel ever since I watched my aunt stuff rolled-up socks into her boots to make room in the suitcase she was taking to England. As cliché as it may sound, I wanted go everywhere and see as much as possible. I have cerebral palsy, and I’m physically unable to carry a backpack large enough to accommodate a trip longer than two weeks. So taking part in a school exchange program to New Zealand gave me the perfect opportunity to travel light within my host country.

My time in New Zealand was a turning point. I left some of the most challenging aspects of my life behind in Toronto, leaving me free to be a happier, more authentic version of myself. I don’t pretend to think that this is unique; who wouldn’t feel this way in a new place with new people and fewer responsibilities?

Despite the years I had previously spent living in student housing, it wasn’t until I was at AUT that I had a more conventional social student experience: bonding with roommates over food and TV, attending parties, dinners, movie nights and study sessions with friends in the building. Having a large support system of fellow exchange and international students around me at AUT was one of the best experiences I have ever had. For the first time in a long time, I didn’t feel misunderstood and alone.

Often, groups of us would get together on weekends and days off from classes to sightsee and travel around the fairly small country. As such, the two-week mid-semester break was our opportunity to take the bus to the South Island, particularly Queenstown: the adventure capital of New Zealand and the birthplace of bungee jumping.

Bungee jumping was a dream of mine. But after making inquires, I was told I would need a doctor’s note, saying it was safe for me to jump, even with a waist harness, given my cerebral palsy. But when the bus driver announced skydiving as one of the available activities, I thought, why not tick this off my bucket list and see the sights from the air?

All things considered, I gave jumping out of a plane the least amount of thought and preparation of all my New Zealand adventures. I figured that as long as I was strapped to an expert and landed on my butt, all would be well. They assured me when arrived that my disability was not a problem. In fact, they had a monthly repeat jumper who was a paraplegic, so someone as light and able as me would me a piece of cake.

The only seemingly intentional accommodation they made was to ensure that I was the last to get onto the plane, which meant I would be the first to jump out. A cameraman helped me get my legs over the edge of the plane before jumping himself to videotape my fall.

woman skydiving

During the first 15 seconds of jump, I was a bit disoriented and had to remind myself to breathe. But in the moments after that, I realized I could do just about anything. If I could move to the other side of the world, travel around one of the most inaccessible countries alone and jump out of a plane, then everything else was at least manageable.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When I Saw My Daughter’s Disability Through Her Brother’s Eyes

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One day I sat down with my son, Jake, to do homework, and he told me, “Mommy, some kids just don’t get it.” I could tell he was unusually frustrated and wanted to get something off his chest. As he began to tell me about the day’s events, I quickly figure out this had something to do with his youngest sister, who has a disability.

Jake is a proud big brother and is happy to see his sister at school. She uses a wheelchair or a walker in the hallways, and whenever his class passes by, he gets out of line and gives his sister a quick hug or a high-five.

brother and sister

On this day, his class was lined up in front of the restrooms and his friends saw his sister walking by. They wondered what was wrong with her, why she needed a walker and why she made strange noises. The questions quickly turned into mean comments.

Jake quickly stepped in and told them to stop. This was his sister, and she walked differently because she has cerebral palsy. It wasn’t her fault that she was born with a body that worked differently, and she works very hard to learn to walk like everyone else.

I assured my sweet little boy that he did the right thing, and as I hugged him, I made sure he knew I was proud of him. It’s not easy to speak up and a take a stand when others may not understand.

Then he told me something that changed the way I looked at my daughter’s disability: “Mommy, when Eve gets older, I hope she marries someone nice.” While I was busy preparing my heart for the fact that she would never be able to do many typical things, Jake saw her future without limits. My worries of her disability were too present, and I should have traded them for big dreams. He opened my eyes to a world where I can dream of anything for Eve, even a nice husband.

And while only a fraction of our dreams may become reality, Jake’s outlook has been a beautiful gift. We talk about a future where she may live with us in adulthood, but we give room for her siblings to envision a typical life for her as well. It’s a beautiful balance, all thanks to her caring big brother.

The Mighty is asking the following: What’s one moment you saw your own or a loved one’s disability or disease through someone else’s eyes? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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This Is What I Wish I Could Tell My Son's Caregivers

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My son, BJ, has cerebral palsy and is a happy, energetic teen. We have had some amazing people working with BJ, but there have been times that I’ve struggled and felt misunderstood as a parent. Sometimes it’s hard to have other people involved in your goals when you have a family member with a disability.

I understand staff have time constraints, funding issues and other obstacles in their day, which means it’s hard, despite their best efforts, to meet parent’s requests at times. I just would’ve liked some of them to stop and think about the greater picture we’re trying to achieve with our requests.

I wish I had written this to some of the people who worked with BJ throughout the years.

Dear Carer, Teacher, Support Worker,

I wanted to write to you because I feel there has been a misunderstanding. You see, as the mother of a son with a disability, I want the best for him. This is often mistaken for being demanding and I am sure, on occasion, difficult. If you have a son, daughter, parent or loved one, I imagine you want the best for them. It is what we all want for the people we love. We are protective and sensitive about the people we care for. It is what loving someone is all about.

It may seem I expect a lot of you, but what you don’t know is how hard I am on myself. As a parent, I never feel I am doing enough. We have spent a long time helping our son gain the skills he now has. Milestones have taken lots of work on his part and lots of determination from everyone involved in his life. He sat just before his second birthday, learned to bottom shuffle at 3 and spent his first five years doing intensive therapy. I know that we are lucky. Not everyone has the progress that he has experienced and we celebrate every one of these achievements.

The things I ask you to do are usually to help him maintain the skills we have spent years helping him learn. These often give him independence or mobility, which ultimately will benefit everyone – including you, his carer. Being able to bare weight, take steps and shift his weight will make transfers easier for you and give him a sense of accomplishment. Using his communication book at meal times allows him the opportunity to learn he has choices and can give you information. Using his walking frame will build muscle, keep him healthy and maintain mobility. It gives him a break from sitting in the same position all day in a chair. I am sure you enjoy moving and changing position throughout the day, too.

As a parent, I crave communication with my child, to know what he has done during the day. But because he is nonverbal, I am often dependent on you to share information to bridge the void. This is something I highly value. As humans, so much of our relationships with partners, family and friends is dependent on communication. I just ask you to remember this and realize that the snippets about his day you provide are a window into his life when he isn’t with me.

I often agonize over whether to say something or to keep quiet. I hope that you remember the praise and compliments I give in between and don’t focus on the times I say I’d like things to be done differently. I am so appreciative of the many people who care for my son. Over the years, so many of you have made his days happier, more fulfilling by being a part of his life, and I thank you for your dedication. You have contributed to his gains and shown patience and kindness. You’ve made my day by sharing a new skill he has learned, a funny story or a touching moment.

I want my son to be an active participant in this great big world, to feel valued, be well cared for and to continue to learn and grow. It isn’t about just filling his days or passing the time.

Everyone wants to be a contributing member of society and my son has a great desire to be in on everything going.

Thank you for all that you do and remember that I just want the best for my loved one.

Signed,

A loving mother

A version of this post originally appeared on Have Wheelchair Will Travel.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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He's 23, Blind, Nonverbal. And He Started His Own Successful Business.

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Patrick Lewis has an affinity for specialty foods and beverages. The 23-year-old also has cerebral palsy, is unable to verbally communicate and is completely blind, but that hasn’t stopped him from doing something that would be extraordinary for any 23-year-old — he has his own business doing something he loves.

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Lewis, who lives in Stowe, Vermont, with his family, is the creator behind “Purely Patrick,” a small local business that creates and sells specialty food and drink items “with a splash of country flare and a taste of Vermont.” He creates mixes for soups, cookies, dog and bird treats, hot cocoa, chai tea and many other goodies. Using a switch-activated device specifically designed for pouring ingredients, he layers them into decorative bags and jars.

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Patrick using his pouring device to make a layered candy jar.
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Some of his finished products.

My hands ‘see’ what my eyes cannot,” Lewis writes on his website.

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Lewis’s mom, Mary Anne Lewis, said her concern for her son’s long-term happiness prompted her to help him find a fulfilling job. “‘What was Patrick going to do when he grew up?’ was always a very sad thought for me,” she told The Mighty in an email. “So I just kept thinking — what are Patrick’s strengths and what does he enjoy, and how can we turn that into a business?”

Patrick Lewis already knew how to use a pouring device, and he enjoys working with his hands. “Purely Patrick” was born when he started working with a teacher three mornings a week. When he was 19, his teacher referred him to an employment specialist at Lamoille County Mental Health Services, who helped him receive funding to work with a job coach 25 hours a week.

Four years later, Lewis’s business is still going strong. He has two job coaches who, along with his family members, help him select and purchase weekly ingredients from grocery and hardware stores. They work together to determine which ingredients he needs for which recipes and to measure the correct amounts for each. Together, they sell his products at local farmers markets, craft fairs and other events.

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“Purely Patrick” generates enough income for Lewis to maintain his business and have some spending money on the side. But that’s not the most important part.

“Patrick’s job provides him with a feeling of self-worth and dignity, which is priceless,” Mary Anne Lewis told The Mighty. “With creativity and optimism, we have been able to build a successful working life for Patrick in spite of his multiple disabilities.”

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Patrick and Mary Anne Lewis

Watch The Patrick Lewis Story:

Video music by Dalton.

For more information about “Purely Patrick” and to see a complete list of products for sale, head here.

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The Secret I'm No Longer Keeping About My Medically Fragile Daughter

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I have a secret. We all have them. Sometimes they get discovered, and sometimes they stay secrets. I’ve never been good at keeping them. Yet, there are aspects of my child’s life and diagnosis that people aren’t always comfortable discussing. 

I don’t blame them. When I think about our secret I always cringe a bit myself. Squirm and change the topic fast. But when you live day in and day out with a medically fragile kid, you come to a point where you can’t ignore the elephant that shares the same house with you.  

Our secret? My daughter has a shortened lifespan. By the estimations of the medical community at large, she will not make it to adulthood. When she was born to her birth mother at 24 weeks, she endured a stage three brain bleed, which left her with a long list of medical conditions.  

baby girl laying in a hospital bed next to a teddy bear

When we started the adoption process, we knew our daughter had a lot of strikes against her. We knew there were issues. Three days after we brought her home, we ended up in the hospital.

It was here that I heard big, scary words. Talking to people about her multiple issues was hard. When we came to the delicate topic of her longevity, people wouldn’t know what to say or do. Death is uncomfortable. We’re all going to die, but it’s usually not the general topic of discussion around our coffee tables and water coolers. So we hid it, and it became our secret.

It was painful to keep and grew harder to hide. Every sickness, every hospital visit, people would ask questions, and I would say it was fine when really it wasn’t. 

Then, slowly things began to change. I met an amazing group of women — women who were going through the same roller coaster I’d stepped onto. No subject was off limits, and nothing was too hard to discuss. I let my secret go. Support and unconditional love surrounded me. 

I learned not to look out the window for the grim reaper. We celebrate life and live every day to the fullest. Because we don’t know what the future holds. No one does. Every day is precious, and every second is a chance to make a memory. My family and I will live and celebrate every moment and embrace what life brings our way.

young girl in a wheelchair laughing

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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