Annie performing.

What I've Learned From Being a Performer With Cerebral Palsy

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I started dancing at age 6, mostly because my mom saw I loved to sing and jump around along with my “Annie” and various Disney VHS tapes in our family room. If only we knew at the time how many lessons would come my way in the years to follow. I wish I could say every person I’ve ever encountered was fully supportive of the fact that I danced as a person with cerebral palsy, but that wasn’t always the case.

I also wish I didn’t feel different sometimes. It’s hard to think back to myself at 8 years old and remember how I felt watching myself in the mirror. When all the girls around you can leap gracefully across the room or tap their feet faster, it’s a tough pill to swallow at first. I also had to accept that there were some things my body would physically not be able to accomplish. Despite all this, I was determined. Quitting dance wasn’t something I could bring myself to do. Most importantly, come recital time, I’ll never forget how happy I was when I got up on the stage.

I came to realize ballet wasn’t the best fit for me, but tap was something I began to have fun with. When the moments of doubt watching myself in the mirror were replaced with moments of accomplishment, I knew in my heart that I still loved to dance, despite my left leg. It was also a huge blessing to have a supportive choreographer. It made all the difference in the world when I knew someone cared about me regardless of how fast I could tap my feet. Shout out to “Miss Donna” for encouraging me every step of the way (no pun intended!)

I didn’t have many doubts about transitioning into high school theater — I still wanted to perform. I was lucky I had a positive support system to help me along the way. But those years gave me some heavy doses of perspective. Those who know me well know that my cerebral palsy is something I like to have complete control over (after all, no one knows my body better than me!) I went through a time of intense self-criticism, afraid someone would notice how my leg was “different” on stage, and somehow justify that this made me less of a performer. Between those moments of feeling weak in ballet as a little girl, and unkind comments from people over the years, I carried a lot of self-doubt with me. I strived to be as perfect as possible and became very hard on myself. But as time went on, I realized that every moment I wasted worrying about my CP was a moment I could’ve been spending fully invested in the happiness of stepping on the stage.

As I went into my senior year of high school, embracing my CP and finding my confidence was nothing short of exhausting. I made a promise to myself that I would stay positive — my script was even covered with motivational quotes! Not every day was easy, and I spent a lot of rehearsal time with ice packs. But looking back on it, those days taught me how to accept my tight, sore, tired muscles in their entirety. Having the ability to perform with cerebral palsy taught me so many lessons about myself and what’s truly important in life. Without them, I would never have had the chance to grow and change my outlook. To quote one of my favorite lines from Miss Donna, “It’s not about your physical body… it’s about the heart and soul you put into what you do!”

I would be lying if I said I still didn’t look longingly at the Rockettes and their beautiful high kicks. And if the opportunity ever arises, I’ve always dreamed of knowing what it felt like to leap and twirl across a big stage. But for now, I have my left leg as a reminder of how much I’ve grown — because cerebral palsy has forever shared the stage with me.

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To Children With Cerebral Palsy: You Are Not Alone

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Dear Children With Cerebral Palsy,

I know how you feel. The stares, the points, the laughs. I wish I could tell you it gets better as you grow up, but it probably won’t. However, one day you will be strong enough to be OK with it. You will start understanding that it’s just how kids process your way of living. Even then, you may have days where you absolutely hate it. You are not weird. You are absolutely perfect.

People will tell you (or at least think) four words throughout your life, “You can’t accomplish that.” When you hear these words, it will be hard, I know. But do not believe it. No matter what anyone says, you can do anything you want, and you will. It takes a lot of work, patience, and time. In the end, it will be worth it. There is no greater feeling than doing something people say you can’t do. Trust me, I know.

When you have a disability, not everyone is going to naturally understand you. You’re going to have to teach them; you’ll probably always be teaching someone. It gets old and annoying, but think of it this way, you’re making someone else’s life a little easier. Not everyone is the same, but you’re giving them some idea how to work with someone else with a disability.

You are never alone. There might be times when you feel lonely and unloved. But there’s someone else out there who is like you. Someone is going through the same things you are. You are loved so much.

— A Young Adult With Cerebral Palsy

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Little Ballerina: Finding a Dance Class for My Daughter With Cerebral Palsy

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When we were about 20 weeks pregnant we decided we wanted to know if it was a boy or girl. I couldn’t wait to find out! I had a feeling we would be having a little girl, and sure enough… we did! When we first heard the news of a girl, I immediately starting seeing the entire world in pink… filled with unicorns, ruffles, pink polka dots, pigtails, ponies, and of course tutus! It seems all moms probably dream of their little girls up on stage in their little pink tutus, a big grand recital in front of the whole family… dancing, twirling, or just standing still looking adorable.

When Bailee was diagnosed with cerebral palsy, it was a moment that came and went by so fast, but at the same time was a moment in slow motion. For some reason, when you hear your child has a disability and might never walk, you begin thinking so fast about so many things….What do you mean she might not walk? Maybe she will walk. If she doesn’t will she get to go to prom? Will she go to the daddy-daughter dances? Will she get to walk down the aisle and get married? Even though she wasn’t even a month old yet, I found these thoughts entering my mind.

The pink polka dots, unicorns, ruffles, pigtails and ponies were still strong in my picture of the future. We started hippotherapy with Bailee a few years ago, and she loved it! She loves riding her horses, and it has been wonderful therapy. And of course, we can’t forget… her favorite color is pink. The tutus, however, and the dancing on stage was something I let slip away to the back of my mind, thinking girls with cerebral palsy don’t usually have an opportunity to dance like all the other little girls.

One day at the therapy clinic I noticed a flyer from our local dance school, Floyd Ward, for a dance class for children with special needs. What!? Did I read it right? My heart fluttered a bit at the idea of Bailee getting to be in a dance class. I jotted down the number and went on my way. The next day, after a wave of emotions of pure excitement of the possibilities this could bring, I gave the school a call. It was a brand new class they were starting, and we were signed up to start the following Saturday.

After a long week, the anticipated Saturday morning finally arrived. We arrived early, and our lives have not been the same since that day last year. We have a child with a disability doing something we didn’t realize was an option… Bailee is dancing! Bring on the tutus!

To put into words the experience we have had is near impossible. How do you write about the feeling you get when you see your little girl, who cannot sit alone or walk, twirling around the room in a dancers arms smiling the entire time from ear to ear? There really are no words to describe it. It has been an amazing opportunity. Every Saturday Bailee cannot wait to put on her pink tutu and go to dance class.

little girl with cerebral palsy in a ballerina costume

The school just had an annual recital in June, and Bailee’s class participated. When those six girls when out on stage, it was one of the most spectacular moments. They were all dressed up in their costumes, complete with makeup. Each girl had her own assigned “helpers” to dance with her each week and at the recital. The music started, and the girls were all so beautiful. There wasn’t a dry eye in the entire auditorium. They danced to the song “True Colors.” All the girls on stage were angels that night.

When you get to witness something so pure and genuinely heartfelt, it’s indescribable what it does to you. Bailee was dancing in the front with her helper Miss Kirsten guiding and moving her body through each move. She was just glowing! It didn’t matter that Bailee couldn’t sit alone or walk or lift her arm up… she was a ballerina, and she was beautiful!

Follow this journey on knock knock mommy.

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Why I Love Being a Teacher With Cerebral Palsy

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I entered college full of hope to be a special education teacher. I knew I had challenges and the road would be bumpy. I have athetoid cerebral palsy which includes involuntary movements and a speech impediment. I also knew my heart was born to teach. I knew this during my elementary years. However, some tried to persuade me not to be a teacher due to cerebral palsy.
Special education wasn’t what it is now back in the 1980’s. Inclusion seemed like a far-off dream to me. I longed to be in a “regular” class just like my brother and sister even when I was only 6 years old. But I was stuck in a class with other children with a wide range of physical and some mental disabilities. Most of us belonged in a regular classroom instead of being pushed to the last classroom in the building, far away from the non-disabled children.
Since my class had diverse range of abilities, I often felt bored. I’d complete my work much faster than the rest and had to wait until the teacher could come back to me. I observed closely what was going on in the classroom. I witnessed children who had severe disabilities not being taught because they couldn’t speak. I saw the teacher give some children the easy way out because they felt sorry for them. I also saw teachers being mean — like not allowing us to use the bathroom more than once a day.
When I noticed children not being taught as they should  have been, I felt very annoyed. Education is the key to good choices and success. Everyone has the right to be educated. I began teaching others reading and math when I completed my work. I loved seeing the look on their faces when they discovered something new. I knew then that I wanted to be a teacher. In fact, my mind was set on it.
I can’t begin to tell you how many people tried to discourage me from teaching. The main concern was how I would succeed in the teaching field. When I turned 11, I finally was in a regular classroom, but my love of teaching never faded. I remember clearly sitting in my college advisor’s office hearing her go on and on about the reasons why I should change my major immediately from education. I stuck to my decision, regardless of anyone’s negativity.
During my sophomore year, I had the best advisor and mentor. He was a realist but also supportive. As field experience, I had to teach twice a week in a third grade class for college credit. The teacher welcomed me warmly, and we got along great.  I instantly loved teaching and my students. My cerebral palsy became a non-factor pretty quickly.
My advisor and the classroom teacher didn’t judge me based on my disability, but by my teaching skills. One thing everybody has said to me about being a teacher is that I must sell myself. Unfortunately, I haven’t mastered selling myself, but I have come a long way. I graduated with an A in student teaching.
I’ve held several teaching positions during my life. I don’t regret my decision to be a teacher, despite the opposition. I taught my third grade religion class today and felt I was living out my dream!
This article was originally published on Cerebral Palsy News Today.
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What a Little Girl's Kindness Showed Me About Working With a Disability

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A couple of weeks ago, I had two very strong reminders that I am working exactly where I am supposed to be. First, I received very good feedback from my supervisor. I was appreciative of this, and it led to me reflecting back on all the difficult times, and doubts I had regarding whether or not I would become a good occupational therapist working in the schools. These memories ranged from my obvious physical challenges, bad grades in college, being sent home on medical leave by human resources “until my health condition improved” when I worked at another location, and other misunderstandings with co-workers and supervisors regarding my cerebral palsy.

I will always be disabled, regardless of how well I modify my environment or make accommodations for myself or ignore it. I view my cerebral palsy as this pesky, annoying imperfection that will always be around to sometimes make other people uncomfortable and my interactions with them a challenge. I am no different than any other person in a minority group, and how I choose to handle it is up to me.

I have major self-esteem issues; I have been told I couldn’t make it or succeed, and I feel like I will always face discrimination. I don’t have the option of being naive or not learning the laws that protect me in the workplace environment. So it means a lot to me to know I’m valued by the administration where I work. This compliment and conversation made my day — and it was about to get even better.

I work mainly with preschool to second graders. Almost daily, I get asked “What is wrong with you? Why are you walking and/or talking that way?” Since it happens so often, sometimes I give a short response, or ignore the question and just keep walking. The halls are crowded with lots of little people, snow pants, boots, coats and I am often on a mission and preoccupied. I am not walking around thinking about my CP; how many adults wander around thinking about their annoying, pesky, imperfections when they are at work? So when the students confront me, many times I am caught off-guard. I do try to give an explanation that is age-appropriate and also appropriate for the time and place. Most of the time I answer, “I was born this way and my muscles work slower in my mouth and legs but that’s OK, because we’re all different, right?” I usually get a nod and a smile.

On this particular day, I was walking with one of my students I see for therapy and the halls were practically empty. A girl walked up beside us and asked what was wrong with me. I could tell she was being sincere and curious, so I gave her my explanation. She responded by saying, “Well, that’s OK, because you are really beautiful.”

My heart lit up with joy, and I had to quickly decide how to respond. I told her thank you, and that was very kind of her. She said “Thanks, I like being kind to people.” Man, I love working with little ones! This little girl made all the Medicaid billing and paperwork I deal with worth it. I wouldn’t request a different job or placement for anything.

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What I'm Thankful for as a Person With Cerebral Palsy

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Thanksgiving brings up many memories and feelings.  Many think about family, friends, traditions and food when Thanksgiving rolls around. Feeling gratitude for what we have can keep us optimistic in a complex world. Although having cerebral palsy could lead someone to complain and concentrate on all the things missing in their lives, I believe we have many reasons to be thankful.

I am thankful for improved medical knowledge and advances. Medical conditions have improved immensely for babies who have disabilities. A hundred years ago, babies who were born with disabilities often died due to lack of medical technology and knowledge. Now babies and young children can get physical, speech and occupational therapy to help improve their quality of life. The medical outlook for people who have disabilities is looking bright and beautiful compared with years ago.

I am thankful for amazing technology and assistive devices that are improving on a daily basis. Technology can be absolutely amazing for anyone who has a disability, but especially those with cerebral palsy. Cerebral palsy can affect fine and gross motor skills in our hands and limbs. Without these motor skills, it can be difficult to write, talk, walk and do other daily living activities. But now we can use an e-reader even if turning the pages of a printed book is impossible. Tablets help us write, communicate, bank, shop, work, socialize and do many other activities very easily. Computers and laptops have also came a long way in assisting independence.

I am thankful for how far education has come for those with cerebral palsy. Instead of being pushed into one classroom or the back of a class, children with cerebral palsy are included as early as preschool. Colleges are much more open to admitting students with disabilities. Teachers are better educated in helping students with disabilities and finding better ways to teach. Students are more open to accepting friends with disabilities. Even school sport teams and student organizations are more inclusive of differences.

I am thankful employment is becoming more accessible to those with cerebral palsy. There are more jobs available to us both online and offline. Unfortunately, the job market still has plenty of work to do, but on the whole, getting a job or starting your own business has become more obtainable.

I am thankful for motorized wheelchairs that can be customized for our needs. My motorized wheelchair allows me to be comfortable and independent. I’m thankful for personal care services that allow me and many others live healthy, independent and dignifying lives. I am thankful to be married and have children, because having a family wasn’t always easy to achieve with cerebral palsy. I am thankful for my friends and family who support and love me despite my challenges.

The next time your spasms are out of control or someone is giving you a difficult time about your speech, try to think of everything to give thanks for. Those with cerebral palsy who lived hundreds of years ago would love to have what we have now. So smile, focus and continue to live your dreams.

This article was originally published on Cerebral Palsy News Today.

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