Here’s my story… life with Cerebral Palsy (CP)

I was born a healthy baby…..

When I was 13 days old I went into cardiac arrest, my heart stopped for 20-30 minutes. That is why I have cerebral palsy. I was very sick and had to spend several weeks in the hospital. My liver was damaged as a result of my heart stopping. A liver biopsy was done to find out the extent of the damage. The biopsy caused internal bleeding. Surgery was needed to stop the bleeding. My kidneys were also damaged, and I had to be on dialysis. They discovered there was an electrical problem with my heart and performed surgery to correct it.

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A few months after my eyes started crossing. This was caused by tight muscles in my eyes – a result of the cerebral palsy. The doctor had me wear an eye patch, hoping that would correct the problem. Unfortunately it didn’t work. In September I had surgery to uncross my eyes.

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I got my first wheelchair when I was three years old. The seats are custom made to fit my body, so I can sit long periods of time without getting uncomfortable. I have two chairs – a manual one and a power one.

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A lot of buildings are hard to get into. We had a ramp put on the front of our house because it was really hard to get me up and down the stairs. I seldom get to visit friends because most houses have stairs.

Cerebral Palsy has affected how my tongue works. It’s hard for people to understand what I’m saying. When I was in kindergarten I started using a communication device. I would touch different pictures and words on the device and it would speak for me.

I was unable to straighten my legs because my hamstrings were so tight. I needed surgery. Notches were cut in to my tendons behind my knees and then my legs were put in casts to keep them straight. After the casts were removed I spent several weeks in the Glenrose Hospital where I had intense physical therapy several times a day. I wore casts at night for several months to continue to stretch my legs.

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I wear braces on my feet called AFO’s. If I didn’t wear them my toes would point and I would eventually be unable to bend my feet to put shoes on. It is difficult to find shoes to fit over them. I used to stand in a standing frame. It was good for my legs. I can’t anymore because of the tendons in my legs are tight again, so I can’t straighten my legs.

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I took the following information from a Cerebral Palsy Page medically reviewed and edited by Gina Jansheski, M.D. for you to learn more about the CP I have….

Spastic Diplegia Cerebral Palsy, also known as spastic diplegia, is one of three different types of spastic cerebral palsy. [1] The most common problem with the disorder is muscle stiffness. It manifests during infancy and early childhood, with the average age of diagnosis being three years old. Spastic Diplegia effects mostly the legs and sometimes the arms, making them stiff and contracted. [2] This makes crawling and walking difficult and most often, children will walk on their toes or with a wide “scissor-like gait.” Legs can also turn inwards and cross at the knees due to excessive muscle contractions. Other children may not be able to walk at all. The upper extremities of the body may not be affected at all and may function normally.

In my case it has affected my upper body. My hands are stiff and contracted but my left hand is better than my right!

When you meet someone with CP, language and attitudes are very important. If you do not have experience interacting with people with CP, there are some key things to keep in mind. These tips will help you to remove barriers so that you and the individual you are communicating with can enjoy a rich and engaging interaction: When interacting with someone who uses an alternate form of communication, take a moment to determine how the individual communicates (symbol board, voice synthesizer etc.) A person with CP would rather repeat themselves than to have someone pretend that they understand. If you are not sure what someone said- ask!

I don’t have any special device for communication but I really hate when some pretends they heard what I said. Please ask me to repeat and we can try and figure it out together. If we don’t know how to communicate I will get frustrated and it will be hard to have a friendship/relationship. 

Try not to assume that because someone talks differently they also hear differently. Try and speak the same way you would to anyone else. For many people with CP the muscles around the mouth and throat can be challenging to control. Do not mistake slow, slurred or halting speech as an indication of someones’ intelligence. It can be very frustrating for someone with CP to be ‘talked down to’ by their peers, try not to interrupt or cut off someone who speaks more slowly than you. Just because someone with CP may take longer to get an idea out does not mean that their ideas are less important than yours.

Inclusion and Participation

People with CP are people first and it can be extremely frustrating to be treated differently. Never describe someone with CP as “wheelchair bound”, “spastic”, “afflicted”, “suffering”, or “handicapped”. These terms are very hurtful and negative. People with CP do not want pity or charity but rather the right to full inclusion and participation. At times access to full inclusion and participation requires the use of assistive devices, personal attendants, adapted vehicles, specialized programming and so on. People with CP and their families will often have significant personal financial costs associated with gaining equal access to all areas of life. “Too often people with CP are treated as though they are objects that need to be fixed. I don’t want to be fixed, I am not broken. I just want the support I need to live my life”.

Cerebral Palsy

I asked my Mom what it was like to have a child with CP, this is what she had to say:

Raising a child with a disability comes with many emotions. It is heartbreaking, overwhelming, exhausting, but in my case it was also rewarding to see such a happy child so full of love, joy and spunk. It was also amazing to experience the goodness and love of other people who were there to help, support and encourage us.

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I also asked Joel and he sent me this…

Growing up with a sister who has a disability has its difficulties, but it has even more rewards. It can be hard to understand what a disability is when you are young, and it can be confusing when your sister isn’t able to do the same things that you can do. Overtime you stop noticing these things and notice the things they can do instead. Many people think that because someone has a disability they aren’t able to do things themselves. This is not true. Growing up with someone who has a disability teaches everyone in the family that regardless of their disability, everyone has the capacity to experience joy, love, and connection. They may not be able to do all things the same way, but that doesn’t really matter; they can do the things that matter most in life, things many of us take for granted. Growing up with a sister with CP has taught me patience, kindness, and that happiness isn’t a function of what you are able to do, but how you connect and impact other people’s lives.

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