I decided to write this article from my own perspective as a person living with cerebral palsy. I’m writing for the mothers and fathers of children with cerebral palsy and for those suffering from it themselves. I say suffering, but I suppose a better phrase would be “living with” the disorder. First, I would like to give readers a little of my background so you know where I’m coming from.
Background
I am a 25-year-old male with cerebral palsy. I was diagnosed shortly before I was 3 years old by a doctor who told me that my cerebral palsy was so severe I would never walk. By the time I was 5, I got my first medical walker and went to kindergarten. I was placed in a special education classroom along with many other children with many different disabilities and quickly learned what life was like being “different.” By the time I was in second grade, they realized that mentally I was capable of keeping up with the “normal” kids so I was quickly moved to a regular classroom and only had minor accommodations for my walker.
To make along story short, it is 20 years later and after two surgeries of minor success, a lot of physical therapy in my early years and a lot of falls, I walk on my own, unassisted at home and other small places, When I go to school and the mall I use my walker, but it is nothing like when I was a child.
The fact that I was intelligent enough has allowed me to be help dozens of students with disabilities. I’ve helped a mute girl learn to sign, dyslexic kids learn to read, kids with learning disabilities learn math, all sorts of things. The sad fact is, doctors and special education teachers don’t always understand everything that a person with a disability goes through. It is my hope that this article will give readers some insight into dealing with cerebral palsy.
Disorder Not Disease
This part is important. Cerebral Palsy is a disorder, not a disease or a sickness or any other derogatory term that people like to throw around. Doctors, including my own and ones I’ve spoken to, as well as reputable medical sites like Mayo Clinic define cerebral palsy as being a disorder, so let’s call it what it is. I treat the word “disorder” to mean simply: “some of your parts may not work right for whatever reason.” When people use terms like “affliction” and “disease” it does not help the person who has cerebral palsy, or other people, to understand.
What is Cerebral Palsy?
Cerebral Palsy is a brain disorder, caused either by early brain injury or abnormal development. It is usually caused before birth. Premature babies are affected as well as babies carried to term.
According to my doctors, as well as others, the official cause of my cerebral palsy was cerebral hypoxia, lack of oxygen to a particular part of the body, in this case, the brain. At the time, this was one of the most common causes of cerebral palsy. Hypoxia can affect the child shortly before, during, or after birth and until specifically tested may remain unnoticed. This was the case with me.
Symptoms
The symptoms of cerebral palsy are difficult to list accurately due to their varied nature. They can be as minor as a slight limp while walking and as severe as complete immobilization, completely rigid muscles, and even seizures.
In general, cerebral palsy affects a person’s ability to move and walk normally. In addition to stiff muscles or difficulty moving, they can suffer a lack of balance or fine motor skill activity. Muscle spasms and other movement disorders are also common.
Being that cerebral palsy is a brain disorder, there can also be developmental effects. A common one that I have noticed is ADHD. Many children and even adults have been diagnosed with this in addition to cerebral palsy. Less common symptoms like dyslexia and mental retardation, slowed mental development, have also been seen.
Progression
Cerebral palsy is not a progressive disorder. It does not actively get worse. That is why I choose not to use the term “disease”. As long as no further brain damage occurs, whatever condition you or your child has will remain relatively stable.
While cerebral palsy is not progressive, it can be made better through therapy and rehabilitation. I myself was unable to walk without a walker of some sort for many years, until my mom started working with me and taking me to therapy. As of today, despite the fact that I have almost no balance, I can walk. I have seen countless children throughout the years, become more mobile and even able to live full lives thanks to the proper care and rehabilitation.
There is no “cure” for the disorder, but there are many ways to make it better and more bearable and many agencies which can help parents and individuals get the help they need in dealing with the disorder. United Cerebral Palsy or UCP is one of the foremost agencies in helping children and parents deal with the difficulties of cerebral palsy and they have branches all over the United States. There are also state and local agencies that can help with rehabilitation, transportation and even housing for individuals with cerebral palsy. Be sure to check with your local health department about how to contact these agencies.
Treatment
Treatment varies depending on the symptoms that each person has and there are so many combinations of symptoms that it is hard to list a standard. In many cases that I have seen, it usually involves physical therapy over a long period. Usually, they focus on areas where the individual is most weak. With me, it was improving my ability to stand and walk since I have the balance of a toddler. Other times it may be to build up muscle strength or to lessen the rigidity of the muscles so that the person can move. Whatever the case may be, it is important to start early and to continue as long as possible.
In one instance I saw a child that had their arms go from completely drawn inward, to being able to feed themselves with a spoon and drink from a straw.
In Closing
The main point I want readers to take away from this article is, be aware and stay positive. Have your child tested early and begin rehabilitation as soon as possible. If you are already living with cerebral palsy, there is always a way to make it better, get help and live your life to the fullest. Often times I see doctors and teachers treat everyone the same, believing one disability to be no different than any other. This is not the case, there are as many different variations of cerebral palsy as there are people in the world. Never let someone tell you that you can’t do something.
I will be including a link to my contributor profile with this article. Please leave me comments, concerns, and suggestions. I hope to continue the topic of dealing with disabilities in future articles
