On January 12, 1985, I was born in Mitchell, South Dakota. During the birthing process, I was without oxygen; this caused brain damage, resulting in cerebral palsy diagnosis. Cerebral Palsy is an umbrella term for any brain damage occurring before, during, and up to 2 years after birth. There are four main types Spastic, Ataxic, Athetoid, and Mixed (Types of CP, 2018) and some researchers have identified up to fourteen different kinds (Types of Cerebral Palsy, 2018). Cerebral Palsy affects people differently, and there are wide variations between cases.
My Mom had a normal pregnancy. The day that she went into labor, she had no idea that there would be trouble. Even as she and my Dad walked into the hospital, I was a healthy, ”typical” baby. The problem occurred when my Mom was in the delivery room. Her placenta tore, and I was left without oxygen. This resulted in me being born unconscious. The doctors performed CPR on me, and after a few minutes, I started to breathe again.
I often think about those minutes, especially around my birthday. Those minutes changed the course of my life. People ask, “Is there any moment in your life you would change?” I have thought about that question a lot. On the one hand, it would be really easy to say I would go back to the moments before my Mom’s placenta tore. However, if I did that, I probably wouldn’t have been exposed to the disability world, and firmly being exposed to the disability world shaped who I am today. So I don’t know if I would go back to that moment. I do know that I’ve thought about that moment a lot, even to the point where I question if I should even celebrate my birthday since it’s the day where my life changed so drastically. I celebrate my birthday, but I spend at least a portion of the day reflecting on how my life could have been so different.
Cerebral Palsy is an umbrella term for any brain damage occurring before, during, and up to 2 years after birth. Any brain damage arising after two years old is considered a Traumatic Brain Injury (TBI). Even if it occurs the same way, for example, if the brain injury was caused by a baby being shaken and the baby was under two years of age, it would be diagnosed as Cerebral Palsy. If the child were shaken but older than two years of age, it would be considered a TBI. It’s regarded as an umbrella term because there are many causes of CP and a multitude of ways CP presents itself.
I have read several messages from parents of children as young as eight months old, whose baby has just been diagnosed with CP, asking what to expect for their child. I tell them it’s impossible to know at that age. I was diagnosed at eight months old with spastic CP, I would later learn this was incorrect, and I have athetoid CP, but I’ll get to that later. When they diagnosed me, the doctor said I wouldn’t walk and probably wouldn’t talk, and it would better if my parents put me in an institution. I beat the doctor’s prognosis by a lot. I was always pretty proud of this (I still kind of am) until I started meeting other people with CP or reading people’s stories of living with a CP.
Once I started hearing people’s stories, I realized that surpassing my prognosis is pretty common. It is so common that a part of me thinks that doctors do this so that adults with CP can brag about how they surpassed the doctor’s prognosis. Of course, this is me being facetious, but it’s amazing how common it is to hear stories about doctors being wrong about people’s prognosis. I want to say this occurred in the past, and now doctors are better with their prognosis; unfortunately, this appears not to be the case. I say this from my informal experience in online support groups. I do not have any empirical evidence.
There are four different types of Cerebral Palsy. Spastic CP, Athetoid CP, Ataxic CP, and Mixed CP. By far, the most common type of CP is Spastic CP, with 80% of people with CP having Spastic CP. The motor cortex is damaged in people with spastic CP: although, this damage may not always show up on MRIs. Spastic CP is characterized by jerky movements, muscle tightness, and joint stiffness. Spasticity is a form of hypertonia or increased muscle tone. A lot of people assume because the muscles are affected that CP is a muscle disorder. I made this mistake until I got to college. However, this is a false assumption, and CP is a disorder of the brain. Muscles appear stiff because the messages to the muscles are sent incorrectly through the injured part of the brain
Athetoid CP affects 6-10% of individuals with CP. It is also called dyskinetic CP, but I like to refer to it as Athetoid CP because it’s easier to spell and say. Involuntary movements characterize athetoid CP. Athetoid CP’s hallmark is when a person tries to perform a motor activity, his or her movements become uncontrollable. Talking is a motor activity, and I move uncontrollably when I talk. Some people have even said that I “shake, rattle and roll.”
In my experience, individuals with athetoid CP also have uncontrollable movements when they are upset, making them appear more upset than they really are. I have learned not to get too upset over things, especially out in public. I have realized that most members of society haven’t had much interaction with people with disabilities, and I might be one of the only interactions they have with the disabled community. Therefore, I’ve realized if I get upset and give a wrong impression, I’m harming the disabled community. I don’t know how many people have told me that they no longer help people in wheelchairs because someone in a wheelchair has yelled at them for help. I have made a promise to myself that no one will say that because of me.
The part of the brain-damaged in Athetoid CP is the Basal Ganglia area of the brain. The Basal Ganglia area of the brain is responsible for motor control, such as motor learning, executive functions and behaviors, and emotions
Athetoid CP differs from Spasticity CP in that muscle tone fluctuates in a person with Athetoid CP. This muscle tone fluctuates day-to-day and even throughout the day. In college, I heard someone explain the brain messages of Athetoid CP like this, sometimes the brain sends too many messages resulting in spastic muscles, and sometimes the brain sends too few messages resulting in a low tone. I know for me that I remember several times when I was just like a rag doll and often stiff as a broad.
The next type of Cerebral Palsy is Ataxic CP, and about 6-10% of people with CP have this type. Shaky movements characterize ataxic CP, and it can affect balance and sense of positioning in space. The hallmarks of ataxic movements are clumsiness, imprecision, or instability. Movements are not smooth and may appear jerky. The muscle control is interrupted in ataxia and results in a lack of balance and coordination.
From my informal experience in Facebook Support Groups and talking with individuals with CP, I can say Ataxic CP is really uncommon. I can only remember two or three people that said they had Ataxic CP, and I haven’t met anyone with it in person.
The remaining percentage of people with CP have a mixed type of CP, which involves a combination of two or all the other types of CP.
There is another descriptor term that comes along with a CP diagnosis. This term has to do with what and how many limbs are affected. Many people confuse this term with types of CP. It is not a type of CP. It describes what and how many limbs are affected. These terms include diplegia, hemiplegia, and quadriplegia. Diplegia is when two limbs are affected, usually the legs and, to a lesser extent, the arms. Hemiplegia is when one side of the body is concerned, one arm and one leg. Quadriplegia is when all four limbs are affected more or less equally. These terms are primarily used to describe spastic CP. Athetoid and Ataxic CP almost always affect all four limbs. This because different areas of the brain are affected.
Regardless of type, one effect of Cerebral Palsy is not often discussed as an increased motor reflex. The motor reflex, also known as the startle reflex, is reflex babies have to alert them to danger. The reflex occurs when the baby hears and loud, sudden noise; he or she jumps and usually cries. This reflex usually goes away in typical children around three months old. However, this reflex doesn’t go away for people with CP. That means when people with CP hear a loud, sudden noise, they go through the same experience as a baby hearing that noise.
An increased motor reflex has affected my life tremendously. I didn’t know about the motor reflex until I was in college. I just knew that I hated loud noises, such as thunderstorms and fireworks. When I was little, I would cry and stay up all night if a thunderstorm was even predicted. My parents thought I was crazy and just freaking out for no reason. They had no idea about the motor reflex either. They just knew their daughter freaked out over storms. It used to make me mad when my grandpa would say things like, “Thunder is just the angels bowling.” He was trying to make me less afraid of storms. He didn’t know there was a medical reason I was fearful of storms, and neither did I.
The way people are affected by Cerebral Palsy varies widely. There are people with mild CP who may have a slight limp. They were maybe able to “pass” for someone without a disability. I have read stories of people struggling with whether they should disclose their disability or not. I always think to myself that it must be nice to have that option. However, I remind myself that I once got dirty looks from people who thought I didn’t need a wheelchair. It’s a gray area that is hard to navigate.
From my informal experience in Facebook support groups and real life, I would say that it is more common to have a mild CP form. Of course, people on Facebook are usually pretty independent people. People with a severe form of CP are generally not responding to Facebook posts. But from my everyday experience, it seems like there are more people with a mild form of CP.
So what does a severe form look like? From my experience, people with severe CP can be totally dependent on others for care. They can have feeding tubes. Some people use communication devices. I have read stories of people with CP who spend their days in bed.
I say I have a severe form of CP. I actually don’t know if I technically do. In college, a doctor wrote that I have moderate to severe CP, and in those days, I could walk and shower myself. Today, I can’t do those things, so I figure I’ve crossed into the severe category. Plus, I got tired of people always saying they “Only” had a mild form. Like it was only acceptable if you had mild CP. I figured someone needed to represent those with severe CP; it might as well be me. I guess you could argue I don’t have severe CP because I don’t have a learning disability and an intellectual disability. But I was always taught that those were separate from CP. For sure, they are more common in people with CP. But at its core, CP is a physical disability. In the end, I say I have a severe form and will continue to do so until and doctor corrects me.
There is more about CP, but this post is long enough, so goodbye for now.