Today is "World Cerebral Palsy Day".
I thought I'd better not let the occasion pass without writing something about CP, besides it gives me an excuse to write about this handsome guy.
We are fairly new to this world of muscle spasticity, physical therapists, daily stretching routines, mobility equipment, and ankle foot orthotics, but after 9 months it has simply become normal.
The adoption of our son, included adopting a new lifestyle, a new special needs community, and a new appreciation for the differences among us. Especially for kids who have to work so hard to do the things that the rest of us take for granted.
What seems like common knowledge to me now, as I ramble on and on about "AFO's" and "heel chords", I realize is often strange, confusing or mysterious to people we may know, or casually run into. So here is a simple overview of things you might want to know about Cerebral Palsy. Keep in mind that I'm certainly not an expert, and I don't live with CP myself so there is a lot I don't know.
Cerebral - "of the brain"
Palsy - "lack of muscle control"
First of all I should clear up what it is not. CP is not contagious, it is not genetic, and it is not progressive.
A person with CP generally has the same life expectancy as any other person.
CP is a term used to describe a group of disorders affecting body movement and muscle co-ordination. The medical definition of CP is "a non-progressive but not unchanging disorder of movement and/or posture, due to an insult to or anomaly of the developing brain".
Development of the brain starts in early pregnancy and continues until about age three. Injury to the brain during this time may result in CP. This damage interferes with messages from the brain to the body, and from the body to the brian.
The effects of CP vary widely from individual to individual. At it's mildest, CP may result in slight awkwardness of movement. At it's most severe it may result in virtually no muscle control. Muscles can be rigid and tight (spastic), or very weak, and it can also cause involuntary movements.
Some other complications can be seizures, learning disabilities, hearing impairments or vision problems.
It is important to remember that the limbs of affected by CP are not paralyzed and can still feel pain, heat, cold, and pressure. It is also important to remember that just because someone doesn't have the muscle control to speak doesn't mean they don't have things to say. The degree of physical disability experienced by a person with CP is not an indication of his level of intelligence.
I have met, looked after kids, and been friends with quite a few people with CP and I can attest to the fact that someone who is fully dependent on caregivers for every aspect of life, and who has virtually no muscle control, can still be very intelligent and have a vibrant full of life personality.
There are also intellectual disabilities and learning disabilities that can go along with CP. The brain is complex, and the damage done can leave "gaps" that have to be worked around.
The damage to the brain is a one time event so the condition will not get worse. It just is.
However the effects of CP may change over time. Some may improve with therapy, surgeries and a lot of effort. Some effects may worsen over time. The tight muscles can pull posture severely out of alignment, straining the joints and spine, causing secondary problems like scoliosis. The aging process can be harder for someone with CP because of the limited range of motion and flexibility, a more sedentary life, and stress on the joints. Much of what we do with Elijah is for the purpose of improving function and mobility, but we also do things with the intent of reducing stress on his joints and spine in the hopes of limiting long term damage.
It is estimated that 1 out of every 500 babies has some degree of CP.
What causes CP?
Any damage to the developing brain, whether caused by genetic or developmental disorders, injury or disease may produce CP. These are some examples of things that can lead to CP.
During Pregnancy: (these things can increase risk for CP)
-damage to placenta
-exposure to toxic substances
- illness in mother
- biochemical genetic disorders
-chance malformations of the developing brain
- premature delivery
-traumatic delivery and complications
In early childhood:
CP can occur if a young child suffers brain damage due to:
-infections such as menangitis
- brain memorrhages
- falls, car accident, abuse
- lack of oxygen such as drowning
There are different types of Cerebral Palsy depending on where the damage took place in the brain.
Elijah has Spastic Tri-plegia meaning three of his limbs are affected, both legs and his left arm.
He also has been recently diagnosed with microcephaly which has many of of the same root causes as CP. The two diagnosis likely go together, but because we know so little about his history, it's hard to understand what came first...because one can lead to the other. Microcephaly is just smaller than typical head size due to abnormal formation and growth of the developing brain. This happens early in development, likely even prenatally. It's possible that his birth mother was ill, or exposed to environmental toxins, or maybe he had a difficult delivery...or maybe he had an illness like meningitis as an infant. It's virtually impossible to know at this point.
What we can't forget, when reading medical information, is that the person with CP is a person first. They are little boys, little girls, men and women, with the same desires, needs, and dreams as everyone else. They each have their own personalities, their own talents and strengths and their own unique contribution to the world...despite how much they can or cannot accomplish psychically.
As far as our little guy goes, we have had people wonder what his potential ability to live independently someday is.
To be honest there is just a lot we don't know at this point. He's like a little gift that we continue to unwrap, each layer revealing a little more clarity.
We are still in sort of a triage mode as far as addressing each of his most pressing needs....physical, emotional, psychological, relational, educational...even dental. Sometimes it may seem like we've forgotten to address something or aren't paying enough attention to one area. That may be true sometimes but mostly it's just down the road a bit, waiting for it's turn. Special needs parenting is all about advocating, making phone calls, and writing down appointments on the calender. Next on the calender is surgery on both of his legs to lengthen his heel chords and hamstrings.
We do know that he's making progress in so many areas, beyond what we even expected at this point. He's learning, growing, and becoming more independent and secure all the time. I would hate to even guess what his "potential" is because I know he'll just continue to amaze us.
I've come up with all kinds of scenarios of what the future may look like, in my head. None of them is terrifying to me, or gives me cause for worry. It doesn't really matter all that much to me what that potential is...as long as he is able to reach it without being held back. Besides his worth is not based on who he could become, or his potential, he has value for who he is right now.
His "success" story may be him living with us for decades after his siblings have all left home, and being the best greeter (with the greatest smile) that Walmart has ever had. It may mean he lives independently with some added supports, and supervision. His story may include going to college, finding a wife and giving us a bunch of adorable little Chinese Grand babies. Although I have my guesses there is just no way to know, and I don't want to place that glass ceiling above any scenario.
Each one of those general scenarios; from being blessed with the perpetual innocence of childhood, to him living with some independence, to living a fairly typical adult life...and anything in between will all be cause for celebration and pride.
Living as a special needs mom has taught me that it's the little things that are actually big. While other moms cheer their sons as they get the winning goal, I get to cheer for my son every morning when he finally gets those socks on his feet. When he counted to ten for the first time, after several months of working on it, it caused shrieks of delight, clapping, and elated high fives. Climbing onto a kitchen chair, walking across the living room, climbing into the bathtub, washing his own hands at the sink, taking himself potty without help, getting his own cup of water, drawing an E......have all been cause for elation. Each of those are winning goal, first place in the recital, parental pride moments because each of those things took a lot of time, effort, and struggle to accomplish.
I suppose the beauty in struggle is that we have so many more chances to cheer for each other along the way.
Soli Deo Gloria,