4 Ways I've Built a Better Life With Cerebral Palsy

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Hard thick plastic encompasses the whole of my lower leg. Vibrant red Velcro straps hold my leg in its sturdy grasp. Stiff but safe steps I walk. Heat radiates from my skin inside my trusty friend the brace. Shoes groan in pain when they stretch to let my plastic foot in, only to be smashed in return. The best and worst friend would hold my body prisoner for the day. The moment that air would caress my sweating skin outside the brace was no doubt one of the most exhilarating freedoms I saw in those times. I stumbled around like a calf just learning how to walk with weak, unused muscles. The clock chimed 12, and time would escort my brace arm in arm to me in the morning.

I went through this every day until I was released at age 15. My braces were my best friends, but I was lucky enough to be let go. I have a milder class of spastic cerebral palsy. Cerebral palsy is different for every person. There are always going to be challenges. It’s easy to imagine all the possibilities if CP wasn’t a part of my life. However, these are the cards I was dealt, and I am choosing to see the light instead of the dark. Here are four tips that have helped me, and I hope will help you too.

1. Know your limits.

I once went on a series of walking tours through New Zealand and Australia for two weeks. No thought of how hard it would be on my body ever crossed my mind. The trip was going to be amazing, no matter what. I didn’t want to be left behind by the group, so I pushed myself to be able to walk with them. By the end of the first day, my whole body hurt from my upper back to the bottoms of my feet. I kept pushing myself to keep up day after day. With my exhaustion came a person that snapped at others with growing irritation as the days went on. I was miserable, in pain, and couldn’t care less about what I was seeing at the end. My body had reached its limit that first day because I didn’t pace myself. The walking tours were really hard, but I could have saved myself some pain and grumpiness if I had paced myself, rested whenever possible, and didn’t push quite as hard. It probably wasn’t my best idea to go, but I did and survived.

Now I make a point to listen to my body. I still push myself when I have to, but I know which lines to cross and not to cross. Know what you can do, can’t do, and when there’s a grey area. However, you never know until you try!

2. Communicate and ask for help.

I hated asking for help when I was young. I would try to be as “normal” as possible. As my mother would say, I’m a glutton for punishment. If everyone was going upstairs, that’s what I would do, even if there was an elevator. I would ignore the accommodations the teachers gave, and hand write everything I could until my hand gave way. Exhaustion stuck to me like glue. There were times where it worked, but often I would be forced to ask for help because I really did need it.

Asking for help is humbling, and for me an everyday occurrence. I had the realization one day that asking for help is absolutely fine when you need it. You are still capable. Asking for help doesn’t mean that you can’t do anything. People aren’t going to judge you for needing help. It’s better to communicate what you need rather than leave people guessing. Do what you can and then ask for help.

3. Have a goal.

Sometimes it’s easy to get lost in the midst of routine and everyday clutter. You settle for what you have, or you don’t have time to think. I tend to get stuck in life. If there’s nothing to do, I sit on my butt and Netflix. Having a goal motivates me because I am getting something I want out of the process. Goals move a person forward, even if just a little bit. As a person with cerebral palsy, I think it’s important to always be challenged to improve, even though it can be hard just to function sometimes.

Besides motivation, goals bring hope that something is going to change. I need that hope to be able to go through my day. It doesn’t have to be big. Right now I’m practicing having balance on stairs. Every day I work on lifting my foot up on a step without falling. Make a goal that is small, and something you can do to improve yourself.

4. Go at your own pace.

It’s really easy to compare yourself to others in this society. Does survival of the fittest sound familiar? I will never fit into that category, ever. It takes three times more effort and energy for me and many others with cerebral palsy to accomplish what comes easy for an able-bodied person. All I see are the backs of others when walking, because even among friends I am the slowest. It’s easy to feel inadequate when others seem to be able.

You are your own person. We have challenges that most people don’t. Life is not a mold you have to fit. Everything can be accomplished if you just keep working. I have so many regrets because I decided I would never be good enough and quit. You can do it. It doesn’t matter how long it takes.

A very wise woman told me that “done is better than perfect.” If perfect is a person rushing around without stopping to think, I never want to be perfect. Go your own pace in life. It may look totally different than the person next to you. The tortoise beat the hare because no matter how slowly, he kept going. Don’t ever stop!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

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When People Judge Me for Having More Children After My Son Was Born With Disabilities

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I have been blessed to be Mommy to my son for nearly six years now. For me, parenting has had more than its fair share of ups and downs. While my friends are toting their kids to karate and ballet, I am taking my son to one of our roughly 8-10 hours of therapy a week. My son’s first diagnosis came eight weeks into my parenting journey. There I was a new mother, scared my child might die, unsure in my ability to provide all that my son needed and determined to handle whatever may come. Many words and strings of letters joined that first diagnosis over the last five years. Conditions called epilepsy, cerebral palsy (CP), language delays and finally autism. It was during these early weeks post-diagnosis (or the PD period as I jokingly call it), that I found out I was expecting my dear sweet daughter.

While most pregnancy announcements are met with joy or at the very least an expected “Congratulations,” my announcement was met with a slew of “Are you ‘crazy?'” or “You are going to abort/adopt, right?” At the time I was unaware there are many people who believe that once you have a child with special needs, you are expected to not have any additional children. While my son’s condition is not genetic, it was assumed that my then-unborn child would be like her older brother. After her rather unremarkable birth, I received comments of how beautiful she was, followed by “So you’re done with kids, right?” It was assumed my daughter’s healthy birth was the fluke.

Even as my son and daughter grew and my son made progress beyond all of the expectations originally set by our doctors, a stigma still lingered that I was wrong to have my daughter and raise her with her disabled brother. When my younger son arrived much in the same way his sister did, I was really “pushing my luck.”

It’s funny in a way, that those who do not have children are often the most opinionated about how a child should be raised. I was being unfair to my daughter and younger son by bringing them into this world to be “burdened” by their older brother. It was unfair to them to share attention and love because their older brother had so many needs. They would be embarrassed. They would resent their father, their brother and me for all of this. The most common judgment I have heard over the years was that I should have never had other children, because they might have been like my eldest — because everyone knows that a non-genetic condition is likely to happen again.

As I write this, I am awaiting the birth of my fourth (and last) child. If he is healthy, I will be blessed. If he is unwell or has special needs, I am still blessed. Every child, no matter what their strengths, weaknesses, needs, ability, or diagnosis is a blessing. All of my children are a blessing, and no social stigma about disability will ever change that.

Nicki's family.
Nicki’s family.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

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To My Teenaged Self Who Felt Like a 'Weirdo' for Having Cerebral Palsy

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Dear Younger Molly,

I’m writing this letter to a beautiful teenage girl who needs to know her worth is far greater than she could ever imagine. Molly, I know being a teenager sucks, and I know very well the pain you have battled from within your soul because you haven’t yet accepted that you are “different.” You feel as though cerebral palsy makes you a “weirdo,” or at least that’s what those who have bullied you for many years have made you believe. I’m so happy to be able to let you know that your life will get sweeter eventually.

I want to emphasize two things about you that desperately need to be corrected: First of all, those who think they know you really don’t have the slightest clue, and their opinion doesn’t matter. Secondly, you have a tendency to want to please and impress others; you need to stop that, because there will be people who will always reject you, but you have friends who will always love and care for you. Learn to live to make yourself happy.

Your love of school and learning will only continue to grow; you will finish college with honors, while making several loving friends along the way. The four years that you spend in college will be one heck of a roller coaster ride; you will make mistakes, but you will also learn a lot. Determination is a quality that will help you soar in the future; it will help you to overcome the identity crisis and the depression that you have battled with for so long, and for that I’m so proud of you. Molly, you are such a fighter and you don’t even know it; I realize it’s hard to see past the limiting labels you’ve been given. You are smart, talented and beautiful; don’t let the hurtful words of others get to you.

A change in the world is needed, and I have faith you could be the voice of so many who are struggling, simply by expressing yourself through your writing. You have such a sparkling personality, and even though it may take you a while to find your place in the world, when you do you will! Chase your dreams and embrace the people who love you, and forget those who don’t. Please don’t be anything more or less than what you are. You will make it! I promise! Keep going, because you are in the position to possibly change someone’s life. I hope one day you will be able to see that your disability is not a disability at all; instead it is a chance to take a stand and advocate for acceptance of those who have been labeled “different.” I can’t wait to see everything unfold.

Molly as a teen.
Molly as a teen.

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. 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. Check out our Submit a Story page for more about our submission guidelines.

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When Kardashian Kids Posted a Photo of My Daughter With Cerebral Palsy

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fin on instagram One morning I woke up to the Kardashian Kids (the Kardashian family’s children’s clothing line) tagging us on Instagram and reposting a picture of my daughter in one of their dresses. In the photo, she’s standing in her walker. This account has more than a million followers, so this was a big deal to us. I thought, “Wow! This is possibly bringing cerebral palsy awareness to a million people!” I reposted the image and was proud of the platform we were provided with.

As I went to text my sister and cousin, I began to get bombarded with notifications. Mostly supportive, but the ones that stuck out were angry at the negative comments left on her picture.

Negative comments? I was scared to look. I had never had this emotion as a parent yet — fear of judgment. Of course I’ve felt that for myself, but never for my 2-year-old child. I immediately thought, “Oh my goodness, what did I expose her to?” I debated asking them to take it down.

Then, my direct message box began filling up with notes from other special needs mothers. You see, right after we received Fin’s diagnosis, I felt so alone. I believe all parents do. So you can imagine following all of these popular kids shops on Instagram and then one day seeing a child like yours in the feed.  Many of these precious mamas said they were “in tears” that they found someone like them!

Most moms post pictures of their kiddos in cute outfits, going to dance, soccer, swim, what have you. Yet, when your child requires medical assistance, you may have a different thought process behind posting these simple picture. I’ve always felt the need to address this issue. I’ve heard a few people around me say I’m “exploiting” my daughter. It makes me sad because I’m merely a proud parent just trying to bring more awareness for something so my child may feel more accepted. So far, it’s worked. People immediately comment on her, rather than her medical devices. I feel I’ve been able to use our Instagram account to spread the right kind of awareness. I’m so grateful for each shop that reposts one of our images because it brings more awareness and acceptance to children with special needs. I’m grateful for the Kardashian Kids post because I feel it made a mark for the CP community and was an eye-opener for others.

Back to the negative comments for a second. One commented, “forehead fo daysssss.” Others asked, “Why is her head so big?”

The words were cruel. Along with cerebral palsy, she has “macrocephaly,” a medical term for “large head.”

A lot of people sang the Kardashian Kids praises for posting “diversity,” and a lot of strangers came to our defense. People kept asking me what I was going to do. What could I do? I wasn’t about to start one of those pointless internet debates. This is all part of being public and trying to teach people about something. There’s an ugly side to being an advocate. Bottom line, some people are just rude. This was quite the lesson, and I took the beating.

The next day the Kardashian Kids sent me a message: “Hi Christina! I hope you weren’t upset by the ignorant comments on the post. The ignorance in this world never ceases to amaze me. There was so much love and support for little Fin, I hope you have gained a lot of kind, supportive followers. Xo”  You know what, KK? We did, and thank you.

To the rude Kardashian Kids Instagram fans: Thank you for showing us a glimpse of how rude and ugly the Internet world can be. I hope you feel really proud of all the things you wrote. I somehow know you would never have made these comments in person. Attacking a child’s appearance is never OK, regardless of how “harmless” you feel it is. I hope you try to troll the Internet with positivity because then you will actually help out in making a difference. Everyone can be negative. Just try saying nice things and see how good it makes you feel. I promise it will.

Follow this journey on The Waiting Room.

WATCH BELOW: Secrets of Being a Special Needs Parent

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How Writing About My Cerebral Palsy Gave Me Confidence

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When I returned to Passaic County Community College (PCCC), I didn’t know what I wanted in life. I felt like I was driving a car without a clear destination. Though I returned to college, I felt lost. I lost faith in people, in life and even in myself. All I knew was that I wanted to obtain a college degree.

I found my meaning and purpose when I met Professor Mark Hillringhouse, who helped me to realize I am a writer. He encouraged me and challenged me, first with poems, then with translation exercises. He motivated me to look inside myself and start writing from within.

Juana Ortiz and Mark Hillringhouse
Juana and her mentor, Mark.

Writing about myself helped me to become aware of the wounds I had carried with me all my life. They were not visible, but kept hidden within my unconscious mind and my soul. They were very difficult to heal, because nobody could see them. I wasn’t aware of how much the wounds were affecting me until I wrote about them.

Cerebral Palsy

I learned how to ignore others who laughed.

“Mama, yo no quiere ser una carga”
(“Mama, I do not want to be a burden”)

I would say to myself.

“Papi, yo no quiere ser un extraterrestre.”
(“Daddy, I do not want to be an alien.”)

I never wanted my parents to suffer

Because of me. I wanted love

Not sorrow. My body curves

Like a sea creature.

My legs bend behind me, my mouth

Always opens in the shape of the letter O.

I am a toddler slower than a turtle.

I am a clown the kids on the street always laugh at,

But I could never laugh at myself.

I wanted to keep my poetry secret for a couple of reasons. First, my self-esteem was low. I felt insecure about people and about myself. I had been discouraged by a number of people at different stages of my life, and the effects of their negative criticisms were still within me. Second, going through all those evaluations that mostly highlighted my weaknesses caused me to distrust others, sometimes even Professor Hillringhouse. When he first seemed impressed with my writing, I wasn’t sure if he meant it, or was just trying to make me feel better.

At home, I sat in front of the computer, went back in time, and started typing. All those emotions that I had not revealed came to the surface, and I had the courage to let them all out. I was following my mentor’s instructions by describing a situation and then explaining how I felt about it at that time.

I wrote about my experiences as an immigrant, spending four years without seeing my father, living with cerebral palsy, and lacking formal education. The most painful was to write about my physical appearance and the way I had been teased by other children, excluded from so many things and pitied by strangers. Moving to a new country… attending school for the first time… making friends.

I had never revealed some experiences to anyone until I started creating poems. It was much easier to express certain parts of myself through poetry. This was the moment when writing became a form of therapy to start healing my turmoil from the past, even from the turmoil of writing itself.

I realized the big difference between academic and therapeutic writing. One was about the pressure to follow rules and get good grades. The other was a way to release my feelings, emotions and thoughts. Every time I practiced therapeutic writing, I experienced a sensation of freedom I had never felt before.

Writing about my life has helped me to have a better understanding of who I am as a human being, not as a person with a disability. Through writing, I learned that it is OK
to release my pain and my emotions, because they are part of my life experience. For years, I was afraid of expressing how tough it can be to live with cerebral palsy, but I’m not afraid anymore. Even though living with a disability is still sometimes very difficult, I now have the tools to help me get through the challenges. I can sit in front of the computer or grab a paper and pen to write about my feelings.

I hope many readers can identify with my story, because most of us have some type of wound from the past that we don’t want others to know about. Therefore, I am encouraging everyone to start writing. Write about anything that is bothering you. Write about how you feel. Your subject can be as simple as what annoyed you today at work, or what made you smile when you were walking your dog. In the beginning, you might feel uncomfortable, but after a while, you will most likely start feeling relief. Writing can help you deal with all the pain or frustration that you hold inside and see yourself more clearly.

In my book, “I Made It,” I talk in depth about how therapeutic writing has helped to increase my self-confidence and belief in my ability as a writer, instead of my disability. The book is available at www.juanamortiz.com and on Amazon.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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. Check out our Submit a Story page for more about our submission guidelines.

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When People Say I'm Doing Great 'for Someone With a Disability'

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Austin Wykes - young man in a blue shirt with a view of a lake behind him.
Austin.

Growing up with cerebral palsy, I encountered two distinct perceptions of “disability” from others on occasion. First is that merely existing somehow made me heroic, and second, any effort I make is a great one because I made it. As you might imagine, these perceptions can grow tiresome, because I’m just trying to live my life like anyone else. After a while, the aggressive encouragement is, in a strange way, grinding on the spirit. At times it felt and still can feel disingenuous. Such unearned praise made me feel like there was a lack of “real” expectation for my life, and that participating was considered to be enough.

To be sure, cerebral palsy affects many aspects of my life and has provided many speed-bumps while trying to accomplish various goals. However, the only times I’ve felt “disabled” are when people have gone out of their way to either include or pressure me into activities that I genuinely had little interest in, or indirectly emphasized how disabled I seem to them, because I surpassed their expectations. The latter usually occurs due to a misplaced kindness mixed with ignorance. People say things like, “You’re doing a great job for someone with that disability!” or “How do you do it?” Both examples are mildly insulting, and also, incredibly common. While they’re trying to be encouraging, they’re also pointing out a difference I’m already well aware of, that has no bearing on the task at hand. It doesn’t make me mad, but it is frustrating because I’m just trying to do my thing. Imagine someone mentioning your race or gender while you’re doing something you view as mundane. That’s how it feels to me.

As far as my disability is concerned, I don’t view it as some sort of “active” status. I have a disability, but I’m not existing in disability. I live in the same world as everyone without a disability, and to me my disability is a part of me in much the same way that glasses are for someone who needs them. You’re not always able to see things as clearly as other people, but it really bears no impact on how you go about living your life. But if you were constantly being reminded that you wore glasses, you would begin to feel different even when glasses were irrelevant. Constantly acknowledging a difference, even if from the heart, can be more divisive than the difference itself, I’ve found. It only reinforces the separation and mutual isolation of both groups from each other.

I believe that although it might be difficult, the best thing you can do for someone with a disability is let them be themselves. Trying to force an idea of “normalcy” that doesn’t fit, or highlighting how they surpassed your low expectations can be far more damaging to their confidence and self-worth than any disability.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

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