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.
A Multitude of Musings 
You’d think that having a milder form of some condition is better, and it is obviously, but I can relate to your uncertainty whether you’re “bad enough” to go there. I have mild coordination and balance issues and my motor skills didn’t develop exactly the way they should, although I’ve never got any concrete diagnosis or help with it, mostly because it was just too mild, but my Mum says some brain injury had to be involved. I don’t know. I’ve also had some feet deffects which are also mild and I don’t think much about them now but which still are visible and can in some situations affect my functioning. Anyway, because of those issues I’ve always had kinda trouble classifying myself among other disabled people, like at school for example. During most classes or activities we were divided into two groups of children that are only blind and those who have some coexisting disabilities, just so that everyone could get about right level of help. I was usually among those without other disabilities, because well practically I don’t have any other, but because of all those issues I often felt like I am too bad for that group, like way too dependent for example. On the other hand, in comparison with children with a few disabilities I was way too good. And I still see that difference when I try to compare myself with other blind or disabled people.
Anyway, whatever your movement issues are, they’re valid, and I hope maybe going there will give you some more insight. After al CP is another kinda spectrum disorder, or so I suppose, so you might even find someone with a similar form to yours, who knows. Hope it goes well and you’ll learn interesting or useful things, which is always good. 🙂
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I can relate to your experience with the “just blind” group vs. the additional disabilities group at school. I am definitely multiply-disabled, in that I’m autistic, but it wasn’t known until I was an adult. As such, I was constantly treated as “just blind” at the schools for the blind. (Interestingly, my parents initially tried to enroll me at a school for physically disabled students but I was “too mild”.) That is, until I was about nine, I was given the accommodations I needed for my physical disability, but after my parents discntinued my specialist appointments, I no longer got those accommodations either. Not sure whether that was related or I’d just seemingly outgrown my need for accommodations. As a side note, here in the Netherlands, at least when I was young, all children who don’t have intellectual disabilities or are deafblind were placed in the “just blind” schools, so including those with physical disabilities, autism, etc. I wrote some post on my other blog years ago about the meaning of the term “multiply-disabled”, which seems to refer only to intellectual disability plus some other disability, not for example blindness plus autism plus cerebrel palsy.
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It is very similarly in Poland with blind children with additional disabilities. There can be some accomodations for them at schools, sometimes they are there, sometimes not, I guess it depends on the condition, but usually, unless that additional disability isn’t like very severe, they’re treated as just blind. Indeed, it’s so very common that people use the term multiply disabled usually in referrence to those who have intellectual disability plus something else,I see it even in Polish language. It’s odd, but I guess it shows how little people actually know about disabilities in general. Or maybe it is that other disabilities in combination with intellectual disability are like more visible to outside people. I mean for example if someone would have intellectual disability plus was autistic, it would be easier to notice at a first glance for a random person that they’re multiply disabled. While in case of someone like you, with blindness, CP and autism, but while you’re an intelligent person, the only thing random people can notice easily is that you’re blind, the rest can be more complex so much less obvious. And from what Isee I guess there are more multiply disabled people than just with one disability. Just thinking, don’t know it makes much sense indeed. 😀
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