I may never know now if knowing about my cerebral palsy diagnosis as a child, will have helped me understand my presenting symptoms. I do know for sure I will have known about my inability to learn and about my intellect.
Unless things have changed and doctors have moved further on in their approach, once you have a diagnosis, consultants don’t look at all the presenting symptoms, unless it’s a symptom that's obvious and needs to be addressed.
There is also another reason I may never get to know. In 2010 the Neurologist I went to see, confirmed that under the current methods for diagnosis of cerebral palsy, it wouldn’t be possible to identify, for example, the area of the brain operating my leg, which is worse affected than the area of the brain operating my arm.
The consultant made it clear that it would be very difficult to undertake research, in people who in general remained in good health, albeit with congenital disabilities and impairments. He also couldn’t quantify percentages.
Over the years I have come to know more about my presenting symptoms, but I still have no information about my non-verbal memory or cognitive functions. Through snippets of help over the years and understanding myself more, I understand snippets of my presenting symptoms.
I know that if my parents had taken more of an active role and asked questions about my struggles, my consultants might have been able to piece more of my presenting symptoms together.
I need to accept what I know and come to terms with the fact that I may never be able to fill the extra pieces of the jigsaw.
Yes, I have to accept that there are pieces of my puzzle that have been lost to the winds of time so I will never be completely whole.
It would have been nice to know more about my conditions and how to adapt, to learn how to function in the world; but that wasn't an option in my world as a kid, so I have to accept that fact too.
People often wonder why I do things the way I do and so often wonder why I don't know how to do the things that others seem to do with ease, but they don't always know that nobody showed me.
What I do know is that I'm not stupid, but have made a lot of stupid choices due to the lack of knowledge and being brainwashed into accepting the unacceptable for other people's benefit.
Now I have to learn how to stop this behavior, since I have better things to do with my time and would like to get around to doing those things for a change.
Thanks Randy. Yes, from a cerebral palsy diagnosis in my forties, it's still taken another 8+ years to work out my presenting symptoms on the things I didn't know about as a child.
But it's a case of better late than never as they say, and agree with you that the pieces to the jigsaw we cannot piece together, we must let go of those things.
It doesn't matter if others don't understand what you know to be true in terms of what you deal with. You don't have to convince others of what you know for it to be true.
It also doesn't make something untrue just because others don't know. But I feel it is important you bring understanding to some of the issues, so that you can start to close those chapters.