I will never know now if 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’s 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 must accept what I know and come to terms with the fact that in my lifetime I may never be able to fill the extra pieces of the jigsaw.