Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. “Cerebral” refers to the brain, while “Palsy” refers to a physical disorder, such as a lack of muscle control. Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain’s ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time.
More than half a million Americans have Cerebral Palsy, and an additional 4,500 infants and children are diagnosed yearly. Some of these cases may be preventable. (Source: CerebralPalsy.Org)
Today is Cerebral Palsy Awareness Day. My 13 year old nephew, Robert lives with cerebral palsy that was caused by an injury to his brain during his birth (lack of oxygen, delayed delivery). I’ve spoken about him before, he’s a really neat kid! This year, I asked my brother, Eric if he would guest post here to describe what it is like to have a child with cerebral palsy. My brother is a single dad who works from home promoting local independent music. You can find him writing most days at www.ultimatelocalmusic.com.
I would anticipate that having a child with any kind of disability would be difficult. My son, has Cerebral Palsy; a severe case of it at that. At times, it can be very difficult but at the same time; it is very rewarding.
My son was the first child I had. I became a single father at a very young age; (23 years old I believe). In the beginning, taking care of him and all the things I do for him was the normal thing for me to do. When I had my second child, that’s when it really sank in all the things I do for my son.
My son is not mentally disabled by any means, in fact he is extremely smart and getting a 4.0 GPA in junior high school. My son is “physically” handicapped and cannot do the normal things that you would expect from a child that is not disabled. My son is 13 years old and drinks from a Sippy cup that you would give an infant just learning how to drink. He drinks out of this because there is a handle on each side of the cup that allows him to hold it himself. This is pretty much the ONLY thing he can give himself.
My 13 year old son cannot talk, cannot feed himself, and is still in diapers because he can’t tell us when he has to go to the bathroom. I take care of my son all by myself just as you would an infant child that was just born. Day in and day out, it is all on me to insure his survival. I sit there and feed him his breakfast, lunch, and dinner. Many times, I will wait to eat my dinner just so I can make sure he is taken care of and has a full belly. I change my sons diaper just as you would a baby; I have baby wipes on hand all the time.
If my son gets sick with the flu, my personal life pretty much ends. I have to constantly look out for him in case he throws up because he may choke on it. When we are sleeping, I have to sleep with him. If he starts to throw up in bed, I have to yank him up and try to get it in a bowl; you can say good bye to sleep.
My son cannot walk but at home he crawls around from room to room. When we go out in public or he goes to school, he is confined to a wheelchair. He has an electric chair that he controls with his head; a lot of the younger kids think he controls it with his “mind”. He also has a really neat communication board that allows him to talk. He types in what he wants to say, and it says it for him. He is really good at this. In fact, he is really good at anything that has to do with computers.
Although he is disabled, he is your typical 13 year old boy. He has two younger sisters and fights with them all the time. Sometimes when they walk by, he will stick his arm out to trip them. He has always been into law enforcement and right now he is infatuated with Billy The Kid. We are constantly looking up Billy The Kid stuff on line.
Life can be very difficult having a disabled child. I look at the other fathers playing catch with their kids, hiking, fishing, teaching them how to use a BB gun; and it can make me sad knowing I will never be able to do some of those things with my own son. But at the same time, my sons smile will brighten my day. He is so very loveable and caring. He always seems to know when I am sad and will do his best to give me a great big hug.
I admire my son greatly. Although he has everything in the world going against him, he is the happiest kid in the world. If I am having a bad day, I will often look to him for inspiration. It’s amazing how much I have learned in my years on this earth from a disabled 13 year old kid. He’s my very best friend as I am his; and I wouldn’t have it any other way.
I do have to give some credit though. Being a single father with a disabled son; I had and have a ton of help. If it weren’t from my mom and my sister; I don’t know where I would be right now.
Please head over to Cheryl’s blog because she has been featuring some amazing families all week that have been effected by Cerebral Palsy.