...or more importantly, what is it NOT?
CP, which is short for cerebral palsy, is a term not always officially diagnosed with neurological conditions however almost always a part of those conditions. Since cerebral means having to do with the brain, and palsy means the weakness of or inability to efficiently use muscles... that makes it a sure tie-in to most any brain associated condition. There are a great many types and varying degrees of CP, depending upon the extent of and area of which the damage to the brain has occurred.
Now that I've given a rundown, let me share with you an amazing article from a Twitter/Blogger-friend, Erin , living with CP. She's amazing, not only in the respect that she is an adult living with CP, but in the fact that she is also a pre-med student. I told you, pretty amazing :) and here's her article:
Cerebral Palsy: What It Isn’t
JULY 25, 2010
All too often, as a college and pre-medical student with cerebral palsy, I’m asked what cerebral palsy is, but no one ever seems too concerned with what it isn’t, and to me, that’s the most important part.
Too many assumptions and stereotypes plague the world of chronic health than do the positives, the abilities of patients, and the strength of their families.
I’ll do you a favor. Let’s explore a few things that cerebral palsy isn’t, and I think that by doing that, you’ll find that you’ll know exactly what the diagnosis means!
Cerebral palsy isn’t a sickness.
I’m not contagious, and neither is anyone else who has the diagnosis. Nor am I (some with cerebral palsy have underlying conditions that do cause this) chronically sick. I have a pretty weak immune system, but I think getting through my entire first year and a month of college without dorm-induced illness is a feat for anyone. Especially me, who spent half of her pre-kindergarten year at home with the flu. But yes, this means that you can approach me or anyone else with cerebral palsy to say hello. Though some may not be able to answer you with their mouths, let me just say that technology is an amazing feat of the modern day, and you may be surprised at the response you receive! Though I may be in pain on some days, the pain is usually induced by the pressure on my knees that is caused from walking with a “crooked” gait for fifteen years as of November 5, 2010. Thankfully, after an NSAID, I’m usually okay, and there’s no sickness involved!
Cerebral palsy isn’t synonymous for stupid.
All too often it is assumed that because a person’s executive functions are impaired, it must mean that they are “stupid”, and honestly, this is the most far off assumption I’ve ever heard. Many times, though an individual may not have the ability to have a conversation with you doesn’t mean that he or she doesn’t understand what you’re saying. This brings me to another point. Avoid using the “parentese” tone with anyone with a disability. “Parentese.”(Think: A mother encouraging her 15 month old child to walk. Yep,that voice. From my side of the table, just because “I walk funny” doesn’t mean I can’t balance a chemical equation or solve a complex calculus problem. There’s been some serious re-wiring, otherwise known as plasticity, that has occurred in that trusty ol’ brain of mine. I can run like Forrest, and thank goodness I’ve got legs. Because Lieutenant Dan sure doesn’t have any!
Cerebral palsy doesn’t mean that someone can’t be an independent thinker.
For some of us, thinking is our only independent escape. Fortunately, I was able to move to school and gain that element of independence; however, I’m not driving. There are often people in our lives who have been caring for us our entire lives, and they think they know best. The truth of the matter is that parents are simply a voice. Discouraging independent thought is a sign of disrespect to all, but imagine. if thinking was the only way you could express yourself, how would you feel if someone intentionally robbed you of the ability?
Cerebral palsy doesn’t mean that someone can’t have a productive, healthy social life.
As for me, I love going out with my friends to enjoy a nice dinner, a cup of coffee, some ice cream, or whatnot. Surely, it will take me longer to walk to a restaurant near our school, but does that mean that my social life is limited? Most definitely not. The same is true for many people with varying degrees of severity of the diagnosis. Just because you think a wheelchair or other piece of equipment is complicated doesn’t mean that the person using the equipment can’t enjoy socialization. In fact, the equipment that they use is often the one thing that enables them to have the ability to socialize. Think of wheels as figurative feet. In my situation, most of the time, one of the reasons that I may not be available to socialize is due to fatigue. Fatigue in a 20 year old? Yes, it’s very much a part of my life that I would give up in a heartbeat, but when you expend the same amount of energy at 9am as the average person does by 9pm, it makes it difficult to justify not getting adequate rest. If you’re worried that someone might be fatigued and feel guilty for asking them to tag along for dinner or coffee or the like, just ask. Typically, with the many things that cerebral palsy requires of us lucky ones, we’ve mustered up the whole “saying no is okay” thing.
Cerebral palsy doesn’t mean we should be treated any differently.
Whether you’re in school, in the workplace, at home, or in public in general, we all have a reason to be where we are. In the case of the workforce, all people applied, interviewed, and have the qualities necessary for the job. The same goes for school. Regardless of the challenges we face, we’re all qualified to be in our own place, in our own stage at any given time. Equality, as with honesty, is always the best policy.
The bottom line is that people, regardless of their diagnosis, challenges, or whatever else life has thrown their way, are just that. They’re people, which means that they have emotion, that they have a voice, and that they have an opinion. It’s an absolute honor to have challenges, and I wouldn’t trade mine for the world.
That being said, the same goes for any diagnosis...hydranencephaly included. If I was told to pick the one concept I have learned by being a part of the "special needs community" it would be this: do not categorize everyone based upon the diagnosis and assumptions surrounding the diagnosis.
Disagree? Brayden, as well as many others, is living with a condition deemed "incompatible with life"... he's missing a large majority of his brain! Most of the population, who don't know a child living with hydran, would assume that life is completely impossible without any portion of your brain. If you are part of that population, read about Brayden on his journey at his CaringBridge page. (better yet, search for some pretty amazing stories in our bee-ography series here on the blog)
So, if it's a condition... is it curable?
Not exactly, but it can be maintained and improved upon. Here's another article from Erin, and her perspective on the idea of a cure for CP:
AUGUST 10, 2010
The most common question, aside from meriting an explanation of the diagnosis, that I receive is, “If you could change it, would you?” The answer is absolutely not. Do you think there should be a cure? Absolutely not.
My challenges have made me who I am. Every day, I learn a more efficient way of executing a task that may be mundane for some of you. Just today, I figured out that I could plug both my iPad and MacBook into the same outlet of the extension cord to make it easier to access! That’s no big deal to you, I know. To me, everything is a milestone, and the little things mean more than I could ever adequately describe. As a doctor, I’ll have a relational aspect with my patients that is fairly uncommon, and for that, I’m truly grateful. As a pediatrician, parents need a source of comfort that is not often easy for doctors to provide in the exam room. I couldn’t be more excited to share my knowledge and experiences with the ones who need it most.
Life is meant to be lived. If you continually think about the things you are unable to do and focused on the “why” of life, you can’t enjoy it and relish in what it might have to offer. In my opinion, a “cure” would be the “red dye” to the naturalistic qualities of life. To take such a crucial aspect of a person is selfish, to take his uniqueness is contributing to his self-deprecation, and why change something that is meant to be? The fact that you might be in pain at times is unfortunate, but just think. There are people who would do most anything for a plate of food. Blessings define the condition I have.
Science says it would be tough. Cerebral palsy isn’t genetic. It’s a congenital brain injury sustained before, during, or just after birth, so while a cure is virtually unpredictable, prevention may be possible. Pre-natal diagnostics are difficult as well, simply due to the fact that we’ve not yet determine if there are “triggers” to cause the brain injury such as certain habits that the mother may adopt during pregnancy or the size of the baby or anything like that. Most all babies with cerebral palsy or similar brain injuries and birth complications are premature. So, where do we start?
Kids are still kids; people are still people. Though many people with cerebral palsy have learning difficulties, speech difficulties, mobility impairments, and the like, they are still people. They still deserve the chance to learn, to grow, to live, to laugh, and to love and be loved.
If you’re a parent with a child with cerebral palsy or other special need, you’re probably thinking, “If my child were cured, life would be so much easier.” While that may be true, I can assure you that your child wouldn’t be who he or she is today without it, and it has shaped his or her self confidence, self image, and self esteem more than is describable. You will have your hard days as a parent, but everyone will! Find joy in the fact that your child, just as any other, is a miracle. He’s a miracle of life, he’s a miracle of spirit, and he’s a miracle of heart. One day, he’ll grow up to be someone’s greatest mentor or teacher, often without saying a word.
If you’re a medical professional who treats individuals with cerebral palsy or other special needs, you may say that if children didn’t have these diagnoses, your job would be so much easier. It’s true. It would, but would you learn as much? Would you have the opportunity to look into the eyes of a child to say that they’ll be okay, that they have a chance at life, or that they’re a beacon of light and courage. Are they the reason that you do what you do?
Though there are some negatives associated with the diagnosis of cerebral palsy, I wouldn’t trade it for all the world. Would you?
Thanks so much, Erin, for your enlightenment & reminder to embrace the life that is given to you...