Tuesday, March 24, 2009

What's your score?

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.


Big brother, Little sister. said...

Hi Alison,

I think the thing with these scores are that it is purely based on gross motor ability, they do not take anything else into consideration. They see no personality, sense of humour or a love of a sandwich!
As for levels Cooper has been assessed 3 times so far as part of a CP study ( RCH) I am unsure whether these results are seen by the EI therapists.
He was borderline 4/5 at 2 then at 3 was level 3 and at 4 I am still awaiting for this but I suspect a 3 again being the youngest age in the biggest margin as such...so they can change levels for sure!
I think it also takes a special therapist to see past the label and level and see the child just like we do as parents.

Naomi said...

I know what you mean unfortunately. Zach's score recently with Dr Lowe was a 3....yippee! Down from our original score of 4. Thinking of you :)

n0thingbuteverything said...

We only know our score because we're part of the VicCP child study.

BC is a 3. It honestly doesn't mean much to me. I've not even gone to properly look at the scale to see what it means and not one single therapist/specialist has ever asked what his GMFCS score is.

I hadn't heard that they don't expect you to change scores....That seems like a very limited view. And I bet there are loads of kids who prove them wrong.

xo HUGS!