Growing Up with Cerebral Palsy
By Crystal McClure
Writing for CP Family Network
Writing for CP Family Network
Bright, beautiful, fun loving, strong in faith and determination, understanding and compassionate. These are just some of the words that people have used to describe me. They are exactly what I strive to be each day. You may be thinking, “Those words could be used to describe anyone.” While that is true, these words hold a lot of meaning and value in my life. Such words as those mentioned above provide immense encouragement for someone in my position. What am I talking about? Living a full life and being all I can be even in the midst of trials and difficulties.
I am a twenty-eight-year-old woman with spastic Cerebral Palsy. This means that I have very tight muscles and heightened muscle tone, which makes walking difficult. As a result, I use a wheelchair to be mobile. By looking at me, the only way to tell there is something wrong is my wheelchair. Most who know me do not call attention to my physical limitations; they simply make accommodations to include me in whatever they may be doing at the time. I am a very smart and driven individual. If I were able to walk, there would be absolutely no difference in you or me.
I grew up in a small town in Tennessee. You blink you miss it. I am the older of two girls by three years. My parents never made a big difference between my sister and me growing up. They treated us equally. When it came time for me to have an operation or therapy, my sister understood my need for a little extra attention. She also loved to help in any way she could, and still does. The rest of my family was and still is the same way. They treat me no differently than anyone else in the family.
While growing up I had to endure three major surgeries. My hips grew out of socket. They had to be put back into place three times. I also had the tendons in my hamstrings and adductors clipped. The first of these surgeries was done at a local hospital. Then at the age of two I began going to Shriners Hospitals for Children in Lexington, Kentucky. I was a patient there till I was 17.
Shriners was able to provide me and my family with the most up-to-date care and treatment available. They were a true blessing. My family did not have to bear the financial burden of my medical care at Shriners. Everything at the hospital is covered by donations and is free of charge to patients and their families.
The town where I grew up had only one school. My sister and I both went there for grades K-5. I was the only student there with a physical disability. Not only was this different for me, but the other students as well. When lunchtime would come, or any other time that we left the classroom, my classmates would sometimes fight over who would push me to lunch, music, etc. At times, this was unnerving for me because it made me feel like a toy in a tug-of-war. My teachers were a big help when this would happen. They were quick to step in and suggest either the students take turns or that I could do it on my own. They never treated me any differently than the other students.
In kindergarten, I sat down on the floor during reading time sometimes, and I took naps on the mat just like the other students unless I used that time for walking using my walker. During 1st and 2nd grades I sat at the table with the other students during reading time. I also sat in the same desks they did or had my desk lowered to the height of theirs and sat in a regular chair.
Accommodating My Needs
The only time I ever felt out of place was during recess. There wasn’t a lot I could do because the playground equipment wasn’t handicap friendly. My Dad built the first set of swings I could actually use on the playground. Two subsequent sets were ordered by the school. Unfortunately, at some point or other they all got broken because the older kids would play on them when my class was not at recess. If the swings had been taken down at the end of my recess time and stored properly this would have been prevented. I had an aide with me from beginning to end. She helped me take notes, write in class assignments, change classes, go to the restroom, and whatever else I needed.
As far as accommodations made to my curriculum, I had extended time for testing and was allowed to leave five minutes before class change so I would not have to fight through the crowds. At the end of each year my Mom had what was called an M-Team meeting with my teacher to discuss my class performance. This included what my strong points were, my weak points, any accommodations that would need to be put into place for the following year, etc. All of this information was written in what is known as an IEP (Individual Education Plan). This file stayed with me from K-12th.
Looking back on my elementary school years, I would not change them for anything. I am glad I was the only student in such a small town school with a physical disability because it exposed my fellow classmates and peers to what it is to be different and helped me learn to see myself as one of them.