Anyone with cerebral palsy will know how hard it is to deal with the physical and the neurological side of the condition.
As a child, I had problems learning, with feel and texture, none of which made any sense. I didn't know about my neurological issues and I wasn't believed. Unless the issue is known about or is familiar, the debate from others will always continue.
There is still much ignorance around cerebral palsy because people fail to understand and appreciate it's a neurological condition. It's not just what they see with us physically. People don't always listen, but they'd be quick to comment if they thought we’d said something out of context.
I have yet to understand my neurological issues. I know that I am re-wired, so others won't know or understand what I deal with and that really is a shame, because they will never get to me, for me.
I am very aware of how ignorant family can be concerning physical and neurological limitations.
The neurological issue I have struggled with most, is the startle reflex. Growing up I noticed I was easily startled by noises, or when someone or something suddenly appeared. I had a feeling it was something connected to my CP. My family thought it was funny when I got startled. Sometimes they scared me just to see me jump out of my skin.
It wasn't until I got on to the internet and learned that my startle issue was indeed related to my CP. It was good to know and it allowed me to accept it, even though it can be annoying and embarrassing.
Nowadays, people might ask me why I get startled or tell me not to get scared, but I have noticed if I don't give it much importance they let the issue go.
This is all very sad Maria. We can't expect total strangers or even friends to understand our life and what we deal with, but when this kind of behaviour comes from family, it becomes even more ignorant and unacceptable.
As you and I have seen, the people who should have protected us, were the ones who exposed us through their own inability to deal with what we had and although would always find a place of understanding, these things are not easily forgotten.
What it does do though is make us stronger. Our experiences shape us into the people we become.
People who don't have to deal with issues like CP obviously aren't going to have any clue as to what it's like. It's like trying to explain having depression or agoraphobia to those who don't have to deal with it. They give you that deer in the headlights look, like you're speaking an alien language.
I have tried working with my daughter for so long that I think I do have a general idea of what she has to go through. I'm not going to say I completely understand, which people sometimes ignorantly say.
What it comes down to, is that it is considered a brain injury and has a lot of the same symptoms from what I can tell. It sounds like there are tactile issues along with comprehension difficulties which my daughter has shown a lot of.
Recently there has been a lot of information coming out about TBI's(traumatic brain injuries) from soldiers who have been in the combat zones. They eventually seem to develop a lot of symptoms that are similar to CP injuries which in turn comes up with answers to some of the problems!
My own issues with memory impairment and comprehension issues would have come from the traumatic events I went through in childhood. I was smashed in the face with a large chunk of concrete when I was 4 but there wasn't really any treatment beyond a CAT scan!
My parents weren't focused on providing any medical care that cost so much! It's just such a shame because any of us who had medical issues could have probably done so much better in our lives had we received the proper care. I think that's why I get so highly irritated when people say things like, they did the best they could with what they had, which is such a crock!
I know that's why I seem to better connect with others who have difficulties in their life, like CP or mental health issues! People have so many preconceived notions and stigmas that it isn't surprising they don't know what to say or do most of the time.
It also doesn't help that quite often they don't want to take the time or make the effort to learn more about the issues. I have tried to connect with others on sites like Daily Strength but the lack of interest from others makes me feel even worse.
It only goes to show that there is a real need for better education would help,along with programs to break down the stereotypes and stigmas that go along with so many issues!
Thanks Randy. I agree. Unfortunately notions and pre-conceived ideas will stop us from wanting to learn or understand other people's problems, because we've already made up on our minds.
I think sometimes people get wrapped in their own lives and problems, so they're either not always available to connect or aren't sure how to connect. You don't always understand your daughter Randy but at least you try to understand.
It's not easy to always know or understand someone else's problems either and unless we walk in someone else's shoes, I'm not sure we ever do, but the effort we put in shows that at least we care.
You care Randy and that matters.