What do I want the world to know about cerebral palsy?
CP is an umbrella term for motor disability caused by a brain injury. That injury could be a lack of oxygen to the brain (also caused in various ways), caused by an infection or during fetus development.
There are different types of cerebral palsy, depending on the location of the brain injury, etc.
There are different levels of severity of cerebral palsy too.
Sebastian’s injury was caused by a lack of oxygen just before and during birth. His CP is severe. His brain was injured at the basal ganglia, which makes his CP mixed with dystonic movements. His entire body is affected. His speech and eating skills are also affected.
When Sebastian was a baby his first neurologist said his CP was mild to moderate. I held on to that diagnosis for a long time. There was a lot of possibility and hope in it. As he grew it became more obvious that maybe it was moderate to severe. And slowly I accepted that Sebastian has severe cerebral palsy. Sebastian is entirely dependent on others for daily living needs. It may not look like the image I had in my mind of what a small boy with severe CP would be like but that is because every person with CP is different. And also because I see my son first, not the disability.
Although cerebral palsy is not a degenerative disease (it is not a disease at all), there are many physical complications and issues which are caused by having cerebral palsy. Again, these range depending on the individual.
For Sebastian, some of these started at birth, while others developed as he got older. Seizures. G-tube. Glasses (for strabismus). Dental surgery. GERD (reflux). Tight muscles and spasms. Bite reflex. Startle reflex. Low trunk tone (making the air in his tummy extremely painful and difficult to relieve.) Toileting difficulties. Some children also develop hip displacement and scoliosis.
Sebastian has always had CP and he will always have it. Though there are therapeutic treatments, there is no cure. It is a part of who he is but it does not define him. He likes to do the same things other 5 year old kids do.
Sebastian loves dinosaurs (wait til you see his Halloween costume!). He likes to play cars with his friends. He loves to play Go Fish and Monkey BINGO with his family. He rides his bike and loves to go fast in his Red Racer. He walks around outside in his walker and kicks the soccer ball. He enjoys a good afternoon stroll in his specialized stroller. He loves going down the slide at the park or feeling the breeze in his hair on our lap on the swings. Does he do some if these things differently or with modifications? Yes. Does that affect his zest for life or enjoyment in these activities? No.
I try to smile at strangers staring at my absolutely adorable son. My hope is that they will transfer that smile to him, rather than stare, avert their eyes, or even look away in pity. People with cerebral palsy (and other disabilities) can live a fulfilling life. Our son does.
There are a couple good posts out there with feedback from other parents of kids with CP sharing what they want YOU to know about CP. 6 things everyone should know about CP and Shocking lack of Cerebral Palsy research
What do you want the world to know about CP? What do you want to know?