Your GMFCS Score that is. This score is a classification of the severity of CP. When A1 was first diagnosed (at her 12 month corrected assessment) she was classified as a Level 5 - the most severe.
The issue has come up again as her new physio wants to do the assessment again now that she is older. I have said No. Not yet anyway.
My concern is this: if her therapists assess her and she scores poorly (fairly likely), are they going to be able to put that out of their minds when choosing treatments for her? If they are expecting her (based on the score) to always be in a wheelchair, then is that what they will be aiming for (even if only unconciously)? I am not prepared to go there yet. I am still aiming for walking, talking and eating sandwiches (these are my personal measures of disability severity). I know that my hopes for her may be a little unrealistic, but it is my job as her mother to hope that she proves all doctors expectations wrong. And she already has proved them wrong in a lot of areas.
I know it can be helpful to know the score because it can be a good predictor of future abilities...but if the future looks bad (according to the score) do I really want to know that yet? My problem with getting a score is that children are not usually expected to move between levels. That is, once you are categorised at a level, you tend to stay at that level. Now A1 was initially given a level 5 score, but I think she is above that now. I would be happy to have a score if the therapists allowed for the possibility that she could move up a level, but the accepted wisdom is that generally that doesn't happen. But A1 is pretty special - she has already surpassed many people's expectations. And I am hopeful with her rate of progress to at least get to level 3...or beyond.
Usually I am not a big fan of ignorance, but at this stage I'd like to remain a bit ignorant and hold onto my hopes of walking, talking and eating. But then the 'realist' in me thinks - maybe we should find out? Maybe it is better to know? What a choice - hope or reality. I think I'll go with hope. For now anyway.
Even if we don't get walking, talking and eating in this world, we know that in the life to come A1's body will be perfect and there will be much walking, talking, leaping, jumping and eating. And praising God. Talk about a reason for hope.