It might sound odd that the fact that I have cerebral palsy almost never leaves my mind. I don’t obsess over it (not usually, at least—most times, I am in a good frame of mind), but it’s always there. Yes, I do feel like I have to be cautious a lot of the time, which is probably one reason why, but mostly it’s because almost nothing physical is second nature to me. I think about walking—even if I’m not in a lot of pain that day, which is rare, my legs are still stiff and it’s hard to move around. When I get nervous or fatigued, my legs shake involuntarily. I can sit on the floor, but I have to adjust my position frequently. I think and strategize about climbing stairs, putting on my PE uniform in the locker room….Almost everything physical throughout the day, I think about it.
Sometimes, though, I forget that CP doesn’t just affect my leg muscles. My leg muscles are mainly affected, but my cerebral palsy affects so much more. My mental health and CP correlate most of the time. There are some occasions where I resent my legs and get tired of hearing people’s assumptions and comments about my challenges. But CP also affects my dexterity and fine motor skills.
Fine motor skills are the smaller movements—movements that control the ability to hold things, like a pencil, or cut with scissors.
I struggle with physical things, but also things like:
-typing (the right way)
-folding
- tying my shoes
- putting on some types of clothing (dresses, swimsuits, etc.)
- zippers
- buttons
-cutting things with scissors
- using utensils to cut and eat food
- washing my hair
- putting my hair in a ponytail
- sewing, stitching, etc.
-drawing
-tracing
- graphing
Until recently, I did not realize that putting shapes on a graph and rotating the shape would be a struggle. Now that I am in high school, I don’t draw or cut with scissors very much. There are a few times, but then I ask the teacher for help or find ways to manage. Over the years, I have learned to adapt. In kindergarten through second grade, we did a lot of cut-and-paste activities. I remember gritting my teeth in frustration as I practiced manipulating the scissors, always mutilating whatever it was I tried to cut. “Cut-and-paste won’t last forever,” my parents told me. I wanted to believe them, but it was hard for me to see anything but what I was facing at the time. In elementary school, I never liked art because I struggled so much with it that it wasn’t fun for me. What I tried to create never looked the way it did in my head.
Art was gradually less of a big deal as I grew older. Instead, art was eventually applied to other subjects. When I started high school, I was put in an honors Geometry class. I am in honors and college classes, which is what I want. In this case, it meant while most other ninth graders were taking Algebra, I was taking Geometry.
In Geometry, you learn about shapes. I was sure that I would be fine. Math is my weakest subject, but somehow I have been able to maintain an A in math since fifth grade.
The first unit that gave me a slight bit of trouble in Geometry was constructions. Constructions involve drawing the arc of a circle with a complicated tool that a pencil was inserted into. I had to hold the tool steady on the paper with one hand and hold the pencil in the other hand. Try as I might, I couldn’t do it. My pencil slipped out of my grip. The tool fell off of my desk and onto the floor. It was like my hands were working against me.
Do you have any idea what it’s like when you can’t control your own body? Many people go through that very frustration when they reach old age, but I am a young teenager. It is unbelievably frustrating. I can’t control my legs. I will my legs to do certain things, but my brain sends the opposite messages to my legs. My hands, too, are receiving different messages.
My sister, who was sitting in the desk next to mine, readjusted my grip several times. I looked at her paper: there were several perfect arcs across the workbook page. I sighed and watched her, but could not imitate her actions. My hand-eye coordination is horrible. That’s why it’s hard for me to play badminton and other sports. It wasn’t news to me that I have bad hand-eye coordination, but I haven’t gotten over how irritating my lack of coordination is.
My sister eventually got tired of readjusting my grip and told me to ask the Geometry teacher for help. I had been trying to avoid that, but I decided to swallow my pride. A lot of times, if I want to do well academically, I have to put my emotions regarding my body aside.
“I’m sorry, but I can’t— this isn’t working,” I admitted, embarrassed.
Most of my teachers teach advanced classes. They do not interact with many others who take advanced courses and have a disability.
My teacher again showed me how to do the construction, adjusted my grip about three times, and then left, telling me that I wouldn’t need to do a construction on the test and not to worry about it.
Well, of course I worried about it. I’m naturally a worrier. I sat there helplessly for the rest of the lesson. I kept trying with limited (no) success.
It turned out that my lack of ability to do constructions did not really hinder me, but my hands were a barrier for something different later on in Geometry—graphing.
We were learning about rigid transformations of shapes. This involved a lot of graphing. The process involved tracing the shape onto transparent paper, moving the paper 90, 180, or 270 degrees, and then tracing the points on the paper back onto the graph. I have difficulty tracing things. It’s hard for me to line the paper up with the object that I have to trace. I knew all of this, but I naïvely believed that my understanding of the rotation concept and my desire to do the rotation correctly would allow me to take part in the unit without a problem.
Long story short—I was wrong.
We were assigned a worksheet on rotations to complete. When I traced the points of each shape, they weren’t aligned correctly. My wrist is weak, so I couldn’t turn the paper fully. The points didn’t fall on the correct coordinates. Therefore, I got every problem on the worksheet wrong.
My teacher thought that I didn’t understand the concept of rotation at first. She assured me that we’d get more opportunities to practice. There are some fine motor skills of mine that do get better with practice, but there are some fine motor skills that it doesn’t matter how often I practice it, I still won’t be able to do it.
Besides, the test was in a week or two. That was nowhere near enough time. I knew from experience; I used to struggle with writing, and so I had to practice penmanship for years before my handwriting was legible enough to read.
My teacher gave us another assignment where we had to graph a list of points and perform a series of transformations on those points. She allowed me to graph the points on an online graphing calculator on my computer. Graphing points has always been difficult for me. It is difficult for me to determine the intersection between two coordinates. The graphing calculator made it easier for me to graph the shapes, but it was even harder for me to trace the shapes now due to the graph being on the computer.
Most of the class, including my sister, finished the assignment in class. (Geometry class lasts for about an hour and a half, and we had an hour to do the assignment.)
I went home having only done one transformation.
My dad knows that the dexterity in my hands is limited. He often helps me with math. My dad saw what I was doing with the graphing calculator. After watching me try to use the graphing calculator for about two hours, he decided to graph the shapes for me. I know it’s hard for my parents to see me struggle. I was so grateful for my dad’s help.
We finished in another hour. I was in tears.
I was so frustrated that my hands couldn’t cooperate. I knew why—but it was hard and it wasn’t fair. It’s difficult for me to comprehend sometimes how I can be in such advanced classes and be unable to do things that most kids my age can do.
After a lot of practice, I was fairly confident in my graphing ability—just in time for my test about a week later. I had missed my last unit test because I was getting Botox treatment, so I was glad I could attend school for this test. I was pleasantly surprised that my teacher had provided me with a physical copy of the test and enlarged the graphs for me. My confidence increased. I thanked my teacher profusely and sat down to take the test.
I thought I had done well. Most of my answers were choices listed on the test. That night, I reported happily to my dad that I thought I got most of the answers right.
I don’t even know how to say this, so I will just say it:
I got a D.
I was not happy.
I did everything I could have done—I told my Geometry teacher, I practiced, I got accommodations….
I was mad—mad at myself, my hands, my brain, and mad at my cerebral palsy. I feel like I failed, but that it wasn’t even my fault. It’s not my fault that my fine motor skills are lacking. At the same time, I felt completely at fault because it was my body that made me mess up.
I almost never get D’s on anything. I don’t say that to brag; I say it to make a point. I felt like my CP had caused me to fail. I failed PE one year in elementary school, but generally I didn’t consider PE a reflection of what really mattered about myself. I definitely considered math to be something that mattered. (And yes, I know that a D is technically a passing grade, but a D is not my idea of doing well.) I feel like failing PE in elementary school and doing badly on my math test both was and was not my fault. I couldn’t help my lack of dexterity. I couldn’t help the tightness in my legs. It was so infuriating because I had very little control in either situation. I try so hard to keep school and cerebral palsy separate, but I failed at that, too. Aside from PE, getting to class on time, fine motor skills, and a few other things, my CP and school don’t really intersect. I did badly in academics because of CP.
The next day, I had Cross-Stitching as an elective.
I had signed up for Cross-Stitching to have a class with my friends, but it was probably a mistake on my part. Cross-Stitching class, for me, had basically consisted of me just sitting there and watching my friends’ progress—because, unsurprisingly, I couldn’t even do one stitch. I had sketched out a really cute design to stitch, but when I held the fabric in one hand and the thread and needle in the other, I had no idea where to put the thread. Finally, I had just stuck the thread in a hole. The thread grew knotted. The needle slipped from my fingers. I’d tried again and again. Nothing. I was frustrated, but I tampered my frustration down and pretended I was doing fine.
The day after I got my test score back, I couldn’t tamper down my frustration anymore. My self-esteem having to do with my fine motor skills was extremely low. I looked at my cross-stitching, picked it up, gritted my teeth, and shoved the thread through a hole.
I listened to my friends’ conversation. Sometimes they asked another girl how to do a stitch, but for the most part they could cross-stitch independently. I watched with a little bit of envy.
After about ten minutes with no progress, tears began to stream down my cheeks. I tried to blink the tears back, but I couldn’t stop crying. The sadness, frustration, anger, and disappointment had finally boiled to a point where I couldn’t stop it from showing. My reaction might sound dramatic, but academics matter to me a lot. To some extent, it is what I focus on because I don’t play sports or anything like that.
My friends looked up in shock. They dropped their cross-stitching and ran around to my side of the table to give me hugs. I self-consciously thanked them. When they asked me what was wrong, I showed them my cross-stitching (or the lack of it) and then blurted out, “I got a D on my math unit test.”
“Oh, no,” my more academically-motivated friend gasped. “What happened?”
She knew that a D was pretty far from my usual grades.
My other friend said, “I’m sorry. At least it is a passing grade.”
I explained my dexterity issues, while they nodded and tried to understand. Another friend grabbed my cross-stitching and threaded the needle for me.
Later that day, I talked to my special education advisor, who doesn’t usually need to do much for me. I don’t require many accommodations. She set up my IEP (Individual Education Plan) meeting and invited my Geometry teacher.
My special education advisor talked to the school occupational therapist for ideas as to how to help me. I had graduated from occupational therapy services at school a few years earlier and was disappointed that I seemed to be regressing.
Ultimately, the plan is that I will have a scribe to graph points for me. I am not thrilled about having a scribe because it is my goal to be as independent as possible, especially when schoolwork is involved. I am not ashamed of having CP, but I try not to take advantage of most accommodations.
I get frustrated that I need help with graphing. At times I feel that my mind moves so much faster than my body, and that is hard for me to deal with.
I may have a mild case of cerebral palsy, and I may not need as much help as I used to, but I still have cerebral palsy. At the end of the day, I need to remember that my cerebral palsy doesn’t just affect my legs—my hands are affected, too.
When I got a D because of the lack of dexterity that I have, I learned several lessons.
I have great friends. It’s okay to get a D sometimes. It’s okay to be a little bit easier on myself because things happen that are not always my fault. It’s okay that I’m not perfect. Most importantly, it’s okay to accept help.