Pandasmom's Blog

living with PANDAS, not the furry ones…

How to explain to others? March 16, 2010

Filed under: Bad days — pandasmom @ 9:32 pm

My experience has been that unless you are the caregiver of a child with special needs you can’t quite grasp the severity of a situation involving such needs.  I feel like John and I have attempted to explain A’s situation and health issues to those who need to know or those we want to know.  But how do you adequately explain this situation unless you have lived it in our house for the past 18 months?  I have come to the conclusion recently that unless you are the parent of a child with needs yourself it must be impossible to grasp.

I know that before we found ourselves in this situation that I viewed children with invisible disabilities entirely different than I do now.  Since this has been going on for so long, I am starting to be able to see a few positives that have come from this.  But the one obvious benefit that has come from this whole journey is our entire family’s increase in compassion for others.  I think that all 4 of us have gained a unique ability to look at situations and people from more than one angle.  There is a quote that I have come across recently that reads something like “Treat people more gently than necessary…Everyone is fighting an unseen battle”  I find this so true with special needs.  There is no way to understand each person’s unique situation unless you live in their house.  However, none of it is made up and the situation is extremely difficult. 

The one thing that I do wish was different in all of this would be that A’s difficulties were either more visible or more easily understood.  Of course I don’t want her to have a physical disability but those are much harder to question.  The moral of the story is that you can’t change anyone but yourself.  What John and I need to do is to extend our compassion to ourselves and those that pass judgment, I guess.  We need to accept that the majority of the world is not able to truly understand the depths of A’s problems.  This is no fault of their own, they just haven’t been forced to live in such a situation.  We need to remember that we are doing everything we can possibly do to help A get better and be the best she can be.  When we take people’s remarks to heart it only serves to knock our family down a rung on the ladder.  It takes us so much effort and so much time to get up each rung that we simply cannot let the world knock us back down.  We have already hit rock bottom and we can’t go back there. 

This is sure easier said than done….


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