September 10, 2014

Five Myths About Cerebral Palsy

There are many myths and misconceptions about cerebral palsy (CP) and as parents we hear all kinds of nonsense. Well I call it nonsense because I understand my life and my child but I have to step back and realize what is second nature to me is foreign to others. Children and individuals with CP are just like everyone else. The difference is their bodies simply function differently. They hope, dream, love and strive for acceptance from their loved ones and from the world in which they live. I am hoping to end some of the nonsense ideas people have on our lives so let's just dive right in...

Life Expectancy: In the beginning Alan's life expectancy was a huge concern for me. I worried over it until I finally came up with the strength to ask his pediatrician about it. I asked what his life expectancy was and I will never forget the physician's response. He asked me to look at the bottom of Alan's feet. Then he asked what I saw. I said "nothing".. To which he replied "Exactly.. There is no expiration date stamped on your son's feet. No one knows how long he will live just as no one knows how long you or I will live. CP is not a terminal disease or illness. Do not put a limit on his time here because I'm not. His time here is up to God and he might out live us all." CP is not a progressive disorder, disease or illness. It is the result of some damage to the brain that affects the communication between the brain and the body. There are risk factors that are higher for individuals with CP. The risk which is highest on my radar is respiratory issues and complications. Because my son cannot move about like the rest of us and his lung capacity is not the same as ours a simple cold can turn into a life threatening situation for him. Any changes to his respiratory processes throw up big red flags for me. So in terms of life expectancy CP itself does not change the life expectancy for an individual but the complications from illnesses are the concerns. Be diligent in responding to changes in their health. Stay on top of those changes to help avoid dangerous situations for your child. Be the parent that the receptionist at the doctor's office knows who you are the moment you begin to speak and that they also know that you will not rest until your childs needs are met.

A Burden: This is a pet peeve of mine and if you want to see how quickly I can flip from friendly to your worst nightmare just mention this in front of my child. I have been on the receiving end of a conversation that starts out much like this... "it must be such a burden to have a child like that... Blah blah blah". Most of the time I can keep my temper in check long enough to either shut them up and walk away or shut them up and explain how incredibly off base they are in their assumptions. My son is not and has never been a burden to me. EVER!!! Yes sometimes meeting his needs are challenging and sometimes, well I'll be honest, most of the time I am exhausted but I have never felt burdened by him. He is a true joy. He has the most pure, kindest and gentlest soul of anyone I have ever met. He is truly an angel in human form. Don't get me wrong he can throw a temper tantrum with the best of them and he is ornery as he can be but he would never ever hurt anyone intentionally. He loves to tease and joke and see people laugh and he likes to laugh too. If he can make someone smile it truly thrills him. I believe I have shed more tears from laughter with him than I have from sadness. I have experienced joys with this child that I wish everyone could experience. I tell people he is a blessing to me and I mean that with every fiber of my being. He is a blessing and a gift from God. He shows me the true meaning of love and helps me to enjoy the simple pleasures of life. My life has been enriched beyond measure because of this child.

CP Gets Worse: Wrong. As I mentioned before CP is the result of damage to the brain. Unless there is some other issue such as a mitochondrial disorder or something the is degenerative in nature the damage that has been done is done. It will not get worse but it will not correct itself either. That aspect is done. Now, the spasticity of the muscles and the development of scoliosis can and sometimes will create more problems for the body as the child ages. This is one reason people think CP gets worse. It really doesn't but problems do develop as a result of the CP. It is imperative to participate in interventional measures such as physical, speech and occupational therapies to combat the effects on the body. Develop a cooperative relationship with your child's pediatrician. They will be your best guide in navigating a life with CP.

Mental Retardation: I know the "R" word has become a political correctness hot button for the special needs community. It is a desire to bring the world into the light and develop some consideration of how the word affects individuals affected by a disability. I am fully on board with that thought. I use the term in this section as its dictionary meaning of slow. People assume that because my son has physical challenges and sometimes spit rolls out of his mouth that he is ignorant or dumb or has the mental capacity of an infant. Ohhh those people are so wrong! My son is quick and very capable of learning. His issue is not in understanding the world around him but in getting the world to understand him. He is very well aware of what goes on, of what we teach him of how he feels and what he knows. I can guarantee you he knows far more than even I realize but he can't express it effectively because his body will not cooperate. I can ask him anything and he will have an answer but I have to ask the right question to understand his answer. There are times when people will ask me the dumbest question with Alan sitting right beside me. Sometimes he vocalizes his contempt for their assumption that he is of limited mental prowess. So I allow him to put them on the spot. I find out what he wants them to know and I'll tell them. More than once people have turned red faced and stumbled for words. Just ask his last teacher if Alan didn't put the teacher's ignorance and negligence on display for the world to see. He did and I listened! When Alan stands up for himself and stands against the ignorance of others in regards to his intelligence I am so proud of him. It hurts my heart that people assume that of him. The world can be so cruel and people tend to judge books by their covers. So unfortunate for them. When things like that happen I kiss him on the head and say "you tell them baby." Individuals with CP are just as intelligent as anyone else in this world. They are simply trapped in a body that refuses to work with them. Please do not deny their intelligence because of the packaging.

Unhappy: Wrong again. While it is true that my son gets extremely frustrated he is not unhappy. In fact he is one of the happiest people I know. He knows the secret to happiness. Simplicity and love. My son is very simplistic. Meaning material things hold no value for him. He doesn't care what the latest wardrobe craze is or what cell phone is the hottest topic. He doesn't care. It does not matter to him one bit. Are his needs being met? Check. Is he comfortable? Check. Is he surrounded by people who love him, accept him and cherish him? Check. Is there laughter? Check. All is right with the world. This is how he views the world. How wonderful would it be if we all held that view?

My son is a blessing. I realize my examples are based on my experience with my son. I  cannot with all accuracy say that what I have said holds true for everyone with CP. The reason is they are all individuals. Just as you and I are. No two individuals with CP are exactly the same. My son has Mixed Tone Cerebral Palsy affecting all extremities. Quadriplegic CP. His body is greatly affected and there are others with the same diagnosis. Among those individuals there are just as many differences as there are similarities. I ask that you never underestimate anyone with CP. Their abilities just might surprise you.

Carry on with Love,
~ Sharon


  1. This is all very useful information. I particularly liked your explanation of the complications of CP and how CP itself is stable. I did know that it wasn't degenerative in nature but I had heard previously that some people experience worsening in for example balance. I have an undiagnosed motor deficit that may be ild CP (I may've had a diagnosis as a child but was never told) and it got slightly worse. That could be the fact that I'm less than physically fit though.

    Oh and I so agree with you aobut your child not being a burden. No child or adult is a burden. Would the ignorant person who says this call their own child a burden because they have tantrums sometimes? The care of a child with CP is more challenging, but that doesn't make the child a burden.

  2. Thank you Astrid for your comment. I'm not sure about the balance aspect but I would guess the worsening may be caused by the effects of the damage in the brain on the body but I'm not sure really.
    Thank you also for referencing this post in one if your articles.


Please feel free to leave a comment.
~ Sharon