Yesterday, I heard about an event on November 3 that I was immediately interested in. It’s the Dutch national CP day organized by BOSK, the country’s charity for people with physical disabilities.
For those not aware, CP is an abbreviation of cerebral palsy. Cerebral palsy is a movement disorder caused by brain damage sustained in utero, during birth or in a child’s first year of life. In my own case, I had a brain bleed shortly after birth.
The thing is though, I was never told that I have CP. My parents just told me I’m clumsy. I did get adaptations early in life, such as a large tricycle. I also had lots of physical therapy. When I was around nine though, my parent discontinued my specialist appointments. Even when I developed scoliosis in adolescence, they didn’t tell me. Scoliosis is a common consequence of hemiplegic (affecting one side of the body only) CP.
Last year, I asked my GP about it and was told I have acquired brain injury. Usually though, when someone acquires their brain injury in the first year of life, it doesn’t “count” as ABI. Instead, diagnoses are then made based on symptoms, such as CP in the case of movement difficulties.
CP is classified in five levels of severity. Obviously, since I don’t even know whether I was diagnosed with CP as a child, I’m not sure of my level either. I would have to guess I’m probably level 1 or 2, which are the mildest levels.
CP is not progressive and yet in some ways, it is. The brain damage that causes it doesn’t get worse, but adults can experience worsening pain, muscle stiffness and symptoms related to overuse and overcompensation.
On the CP event, there’ll be various workshops for adults with CP and parents of CP children. The morning workshop that most appealed to me, is about overload. I’d love to explore this from an a CP perspective rather than an autism perspective.
In the afternoon, the workshop I’m wanting to attend is on nutrition. A dietitian will speak about nutritional guidelines for people with CP. While CP affects movement in the limbs mostly, it can also impact on one’s gastrointestinal tract, because after all these are muscles too. I suffer with both constipation and reflux, which will be discussed.
Obviously, I still feel a little self-conscious about going due to my uncertainty about my diagnosis. Because I am sure I had a brain bleed in infancy, my main concern in thsi respect is that I’m not “bad enough”. My parents at one point tried to get me into a school for the physically impaired and were told (or so ‘ve heard) that I wasn’t disabled enough. Now of course I don’t mind not being that disabled, but then of course I shouldn’t be going to an event like this.
