How Cerebral Palsy Affects My Life

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My story begins at birth. I was born three months early, on June 3 at less than one pound. I could not breathe on my own or open my eyes. I was put on a ventilator and transferred to a children’s hospital. I had a 50 percent chance of surviving. The doctors quickly discovered I needed heart surgery. I was too unstable to be taken up to the operating room, one floor away. They did the surgery in my room.

After recovering, the doctors diagnosed me with cerebral palsy and I started receiving treatment. I spent the first three months of my life in the hospital.

The type of cerebral palsy I have is called spastic triplegic cerebral palsy. “Tri’ means three and so for me it affects three of my limbs. The limbs most affected for me are my left arm and leg. My left arm is greatly affected. My right leg is only mildly affected. It affects my balance, motor control, fine motor control and has created muscle tightness. To treat this, I have had physical and occupational therapy since I was a newborn.

Another treatment I receive is Botox. Every three months, I go to a neurologist’s office and receive over a dozen shots between my left arm and leg. The Botox helps to loosen my arm and leg, makes it easier for me to use them and lessens the pain I feel due to my tight muscles. I wear braces on both of my legs. The brace I wear on my left leg is knee high, multi-colored plastic and secured with a thick strap of white Velcro. On my right side, I wear a white insert that sits in my shoe and is molded to the shape of my foot. These braces help my legs and feet to be in the correct alignment and help me to maintain my balance as I walk.

As another one of my treatments, I had an orthopedic surgery when I was twenty years old. This surgery was to realign my femur and tibia on my left side that was pulled out of alignment due to my growth and tight muscles. I also had hamstring lengthening on both of my legs. This surgery loosened my hamstring muscles, which made it so much easier to move my legs and walk. The surgery took five hours. To rehabilitate from it, I was in physical therapy for a year and a half. Since that surgery, my balance has improved tremendously and my alignment is now correct.

Cerebral palsy has affected me greatly. It has affected me physically and emotionally. The physical aspects of my disability will always be there. The emotional aspects were much more difficult for me to deal with. At the age of 7, I began to realize I was different. I realized I did not look like the other kids, with my big, clunky braces, my unstable walk, and my left hand that cannot grip things very well. I used to lay in my bed and cry, because I hated being different and felt I could not relate to any kids and they could not relate to me.

As I got into my teenage years, this feeling and struggle became more prominent and much more difficult to handle. During this time in my life, I began struggling with depression and anxiety. I had no friends and felt completely alone. In my late teenage years I did my first musical, discovered I loved it and began finding friends who love me for me. Musical theatre changed my life and gave me true friends.

This body is the only one I know, but being in this body is challenging at times. I struggle going up and down stairs and up and down curbs; I need a handrail or a person’s hand to safely do those things. I trip over my feet and my balance issues make it impossible for me to catch myself. I have to be cautious and really think before I take steps, walk on uneven surfaces or get up on high chairs.

Due to my tight muscles, I do not have full extension of the left arm and the use of that hand is greatly affected. Sometimes my hand hurts because the muscles are tight and force my fingers into uncomfortable positions. I cannot write, type or grip things very well with my left hand. Due to the tight muscles in my left arm, I have developed a bone contracture. I can no longer fully extend my elbow without pain. The only way to fix that is through surgery, but because it is not interning with my independence, I will not be undergoing that surgery at this time.

I also have a learning disability, which makes school a challenge for me. It causes me to learn things at a slower pace, need more repetition and take longer to complete assignments and tests. Due to the learning challenges I face in school, I did not graduate with my peers. After a lot of help from an adult basic education program, a tutor, family and friends, I graduated in December of 2015 with my high school equivalency diploma. In January of this year, I began my next academic journey, which is to get my Associates of Arts degree at Meremac. I hope to go on the University of Missouri — St. Louis to major in Social Work. I hope I can use what I’ve experienced in my life to help others.

Cerebral palsy will forever affect my life and how I go about living it. I have come to realize it is my choice if I let CP define me or if I define myself. I choose to define myself. Sometimes the way my body and brain work frustrate me and I wish to not have the challenges I am faced with every single day of my life. My body does not listen or cooperate with my brain all the time. On the other hand, I am grateful for these challenges because I feel having cerebral palsy has shaped me into the person I am and given me a unique perspective on the world.

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When People Suggest My Kids Are Independent Because of My Disability

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Parenting isn’t easy. Parenting with a disability can be even harder. Even harder still is overcoming the preconceived notions of “disabled” parenting.

This past weekend, I was able to visit with a friend and catch up over a meal. At one point, we touched upon how independent my boys are. My friend says it’s because “they need to be” due to my disability. I know she didn’t mean to hurt me, but if I’m honest with myself, it did – her words stung. I don’t like to believe that my having cerebral palsy has affected their childhood in any way. But has it? Perhaps.

 

From a young age, my boys were able to dress themselves, brush their teeth and hair and fix their own breakfast. They could get themselves ready to go out the door without any parental intervention. Was it because I had a disability? No. It was because I wanted to raise independent young men who would thrive.

My boys are independent by design. However, I do believe my disability has slowed us down as a family a bit – it became really apparent in the last six months. In July of 2016, I had major surgery SDR in St. Louis under the care of Dr. Park. My recover road was unknown. So, I made arrangements for my parents to take my kiddos for six weeks. My boys had an absolute blast with my parents and other friends and family who offered to take them to do various activities.

My recovery was going great too! I was so relieved I could walk, run, balance and play with my kiddos again by the time the school year rolled around. But, I’d planned to have an orthopedic surgery around Thanksgiving – bilateral PERCS heel cord lengthening. It was supposed to be easy compared to the first surgery. While I am making great strides and doing well, six months later, I’m still slowing my family down noticeably.

black and white photo of a woman playing outside with her son

For the first time in my adult life, my cerebral palsy is having a palpable affect on our family. We haven’t gone on long walks, to the theme park, to farmers’ markets or on bike rides per our usual – and I miss it. My kids miss it. But, it’s getting better. Last weekend, it was in the 90s here in Chicago and we went to the beach. Was I running around in the sand with them? No. But we did have fun together, and we made the most of it.

Because of my cerebral palsy, I feel friends and strangers alike assert that my two boys are so independent. People tend to think that because I have cerebral palsy, I need my children to be independent. Do I? Perhaps at the moment. However, I don’t know that I would parent differently if I were fully able-bodied. Would people feel the need to comment on my boys’ independence if I were able-bodied?

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Thinkstock photo via Guasor.

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How I'm Moving Forward With Cerebral Palsy One Step at a Time

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My name is Juliana Ruggiero; I’m 18 and have spastic cerebral palsy. My story begins in 1999. I was a fragile preemie who weighed only 3.10 pounds. My parents were not able to hold me when I first came out; I was taken away to the NICU as soon as I was born. I was on a breathing machine and closely monitored by a team of doctors until I was stable enough and my lungs were developed enough to function on their own.

Not even a few days into being in the world, I had a stroke and my brain bled inside. Doctors thought it was nothing, but the neurologist on call that night didn’t believe it and wanted to do an ultrasound on my head just to be sure. At just 4 days old, I got the ultrasound done, and the results were not what my parents and family wanted to hear. “There’s a black spot and a bleed on your daughter’s brain,” the doctor said. She paused and explained it was bran damage and I might have cerebral palsy, but only testing would confirm it.

The neurologist started with a basic test to see how much damage the stroke had caused to my body. She had me move my fingers, hands, feet and toes. The stroke had caused me to lose movement in those important body parts. I spent most of my time in the hospital for viruses and sickness. When I was finally stable enough, they thought I was going to be able to go home and “live a normal” life. But I was a tough baby, always crying, sick, on a ton of medications and fussy. No one, not even my doctors gave up on me. Without that amazing team of doctors, my family and I would not be where we are today.

I stared going to routine checkups with the neurologist once I was finally released from the hospital. With a little bit of hard work and instruction, I was able to regain feeling in every place… Except for one. My legs. The stroke had done the most damage to my legs; they were motionless and I couldn’t move them at all. It still wasn’t confirmed if I had CP or not. About a month or two later, I had another ultrasound done to see if the black spot or bleeding went away. The results were still the same and my legs were tighter then ever.

On January 7, 1999, we got the confirmed news from that same neurologist that would change all of our lives forever…

“It is confirmed that your daughter has cerebral palsy.”

What would that mean for us, for me?

An orthopedic doctor recommended a gait test be done to see what form of CP I had. So we headed to Hartford Hospital, where the gait test was performed. When I walked, the doctor noticed I was dangling my legs underneath me like “scissor blades.” He said I had a very mild form of the most common type of CP, spastic diplegia. The doctor also noticed when I sat on a table, my leg muscles wouldn’t relax and dangle naturally. He said to give it some time and if nothing changed, I would need surgery to correct the problem.

I started school in the year 2000. That year my health started getting out of control. I was always sick, in and out of the hospital again and again for countless ear infections and many other things. But in the year 2oo1 my family was faced with a tough choice. There was no progress with my legs, so the doctor decided I needed to have surgery to release my muscles and walk effectively with my walker.

So on January 7, 2001 just a few days after I turned 4, I had my leg operation. I was supposed to be out of school for two months per my doctor; that’s how long it would take for me to recover. But it didn’t go that way. I was back in school a week after having surgery and had no option but do my recovery plan while in school. After two months of stretching, frustration and tears I was able to get my casts taken off and was able to walk with the help of leg braces. I truly know without the branch of support back then, I would not have made it through this difficult time.

Today at 18, I’m thriving and stronger and heather then ever. I will be graduating high school at the end of this week. I’m headed off to to Gateway Community College in the fall. I recently launched my own blog called Juliana Living With CP: One Step at a Time. CP doesn’t define me or who I am. you should not let it define you no matter what people say or how “good” or “bad,” “mild” or “severe” it may be. I do have my “why me” days sometimes, but I don’t let it stop me from from doing what I want to do!

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Finding an Accessible Apartment as an Adult With Cerebral Palsy

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It’s finally happened, I’m becoming an adult. I’ve been on a six year odyssey focused on one single goal, ideal and mission: moving into my own home.

It’s been hard. Illinois is one of the worst states for people with disabilities and budget cuts are always forced on the disabled population. The amount of accessible housing is severely limited and it has often left me frustrated and full of despair. I watched people move out before me and even though I was proud, I was also envious and jealous. However, everything is changing and I’m no longer the young man I once was, although I’m not that old either. At 30, I’m going to have the freedom and independence I’ve dreamed of, but how did I get there? Here is my story.

When I first graduated from college, all I wanted was to move out of my family’s home. My mind had one singular thought and dream. But as I explained earlier, my options were limited. At first I sought to find a house, and my realtor Katie was very accommodating and receptive to my wishes. However, there were two things standing in my way. I couldn’t afford it as I only work part time, and my roommate had just found a significant other and wanted to move in with her. I was hurt because all my dreams and ambitions seemed to be crashing all around me, but since this was my dream I didn’t give up. When I go after something I usually go one direction: forward. However, as the search narrowed, no options were found and I began contemplating alternatives.

There are a few facilities where disabled and able-bodied people live
together as a community. Luckily for me my parents had the brilliant idea of building one. It seemed ideal and it provided with a dream of equality and the proper amount of accessibility. However, we as a family had too much on our plate and we had to put the dream on hold, at least for now. But just like my dream of finding a girlfriend, I never stopped looking.

Then a third solution appeared, and it felt like a miracle. The town of LaGrange started building an apartment complex which was supposed to have 250 units with 50 of them being for people with disabilities. My ray of hope had finally shown and it seemed like my dream was coming to fruition. I watched and waited as a cloud of dirt became my vision of hope and beauty.

As time moved forward, my leasing agent Kaileen proved to be more than accommodating, answered all my questions and tried to make my apartment as accessible as possible. Suddenly everything that seemed mundane and monotonous was hopeful and accommodating. At 30 years old I have found the fountain of youth and have begun to become young again. I move out tomorrow!

It has taken a while, but everything is now in order. With more order comes more responsibility and I’m ready. I’m a man of action, dreams, and words, but most important to me is the fact that I’m an individual with cerebral palsy who always strives to make my disability better and more beautiful to society. With this apartment I have achieved my dream of being an independent individual. Patience is most definitely a virtue!

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I Am a Woman With a Disability and I Am Happily Married

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Growing up, I was like any other little girl who dreamed of being married one day. But if I said it out loud, the adults around me quickly hushed me. The reason? I had been diagnosed at age 2 with spastic diplegic cerebral palsy, and I soon came to understand this was not a dream I was allowed to have.

As a teenager, I realized the vast challenges disabled people face when it comes to dating. Guys would hardly look at me as a person, let alone as a girl or a potential date. In fact, the bullying I endured throughout school took a new turn in high school and I had guys egging each other on to “ask me out” while the others watched from a distance. The minute I acknowledged the request in any way, they would start laughing and walk away saying “as if!” or something worse at the top of their lungs, while I watched money exchange hands as the bet was paid off. It was humiliating.

Young adulthood was no better. As a Christian, church was a venue in which it was supposed to be safe to form friendships and begin dating, but the same stigmas followed me there, only with a slight twist: I was looked on as a “friend” or a “sister,” but never anything else. Ministers and pastors counseled me against getting my hopes up.

There is a mindset that disabled people should look for love only within the disabled community. I never once bought into that mindset and was open to whomever God chose.

I did have one dating experience when I was 24. He was a long-time friend and we dated for 17 months before he broke it off. The reason: he didn’t like the fact that I refused to promise him that I would not end up in a wheelchair one day. There were other issues that were his alone and not a topic for this story. So at 25, I found myself heartbroken and single once again.

By the age of 35, I had honestly given my dream of ever becoming a wife to God and was content being single. I had been a maid of honor and a bridesmaid at so many friends’ weddings. I had watched them birth children and deal with the challenges marriage and kids can bring. I had even walked beside a few of them whose marriages ended in divorce. I had no illusions about the hard work marriage entailed. As the years passed, I was completely at peace with the idea that I was and would remain single.

Suddenly at the age of 42, I found myself in the midst of a shift from a three-year friendship into a romantic relationship. Trust me, no one was more shocked than I was and… he was able-bodied!

There were so many questions people asked and so many questions we asked ourselves, but always it came down to our views about God and His plans and purposes for our relationship. After a courtship by fire (my Dad had been diagnosed with ALS), we were engaged.

Two months before our wedding, severe back spasms began in my lower back, making it impossible for me to walk for six to eight hours per day. All my plans to walk down the aisle using my four-wheeled walker were suspended as we came up with plan B – my groom would carry me down the aisle.

I endured dress fittings with my ladies-in-waiting literally holding me upright while the seamstress pinned the hem of my dress and tears rolled down my face due to the pain of the intense back spasms. I was certain the seamstress thought I was being married against my will!

A few weeks before our wedding the back spasms stopped being as severe, and I was able to walk again. I kept asking my groom-to-be if he was sure that he wanted to marry someone so “broken.” He never wavered.

So, at the age of 44, on March 24, 2012, I was married. My dream of becoming a wife became reality. A very special man chose to see the real me behind the disability and we have been happily married for over five years.

I encourage all women and men with disabilities of any and every kind not to give up hope. I am living proof that dreams come true!

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Thinkstock photo by Creatas Images.

 

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Learning to Drive as an Adult With Cerebral Palsy

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I’m learning how to drive. I, a 28-year-old woman with cerebral palsy, am finally learning how to drive.

Let me walk you through my experience with driving thus far:

I first got my beginner’s license when I was 19. I really just got it as a piece of I.D. to get into a bar, but that’s besides the point. I went for a few lessons with my parents (God help them!) to attempt to drive with my feet, and only vividly remember the last lesson I had with my dad. I specifically remember this lesson because it was the last time I got in the driver’s seat of a car for almost 10 years.

I was determined that I could drive with my feet. I somehow convinced my dad to let me drive home from a block away, after only having driven a couple times in an empty parking lot. Now, not only do my feet leave much to be desired, I also have terrible depth perception. So, I spent a lot of my time probably five feet away from the curb as my dad yelled at me to get closer/go faster/stop being a lead foot, and cars passed me, drivers giving me the finger along the way. This particular driving lesson ended with a bird flying into the side of the car, bouncing and landing dead in my neighbor’s driveway.

Recently, I finally decided it was time to actually learn how to drive. I started out trying to drive with my problem children (my feet) again, with my husband white-knuckling the “oh s***” bar and trying really hard not to scream in terror.

We then decided it might be best for me to have a driving assessment done to see if I needed hand controls. So, I went. It started off with a cognitive assessment, which I’m pretty sure was invented specifically to make me feel like a fool and drain my brain of any logical… anything. They said I did well, but they were concerned about my depth perception.

They then wanted me to demonstrate my ability to lift my toes up and down off the ground without lifting my heel. Well, that was a big ol’ nope! So we didn’t even entertain the idea of driving with my feet, and got me hooked up with some hand controls. The car I am learning in has a spinner knob to turn the wheel, and a lever to push for brake and pull for gas.

Through my lessons I’ve learned that despite what your brain tells you, you’re not supposed to look at the “thing” in front of you that you want to avoid hitting. You’re also not supposed to just skip lanes because you want to avoid a median when turning onto a street.

But, in all seriousness, living with CP has shown me time and time again that there are different ways for everyone to do things, and just because you can’t do something the “conventional” way, doesn’t mean you can’t do it at all. A lot of learning and a little bit of perseverance can go a long way.

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Thinkstock image by Marjan Apostolovic.

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