What To Say

A few days ago, I was at the playground with the kids.  Oliver was in a swing and Waverly was in her stroller, chewing on her tube.  A little girl, probably 5 or 6 years old, had been watching us throughout the afternoon.  She came over and asked me why Wavey was in a stroller.  I explained that she has trouble walking, so we have a special chair for her to ride in when her legs get tired.  She then asked why Wavey was chewing on a toy.  Umm, that is a special toy made specifically for her to chew on.  She then thought for a moment and asked me, "Is she a baby or a big girl?".  Good question!  I thought that was so insightful and said with total childlike curiosity.  However, I did not know how to answer her.  It just stood there smiling and stammering.  I have such a difficult time explaining Sanfilippo to kids.  

A few friends who have young kids have asked me how they can explain Waverly & Oliver's disease to their children.  The MPS Society prints a book for siblings about my brother/sister has Sanfilippo.  My sister read through it with my niece and nephew and found it helpful.  Another friend of mine got a book from the library written for children about kids with special needs.  She read through the book with them, before they met Waverly & Oliver.  They responded so sweetly to my kids and I have to credit Katie's thoughtfulness in educating her kids in preparation.

One thing I always try to make clear is that Waverly & Oliver's brains don't work properly and it is not contagious.  You cannot *catch it* from being around them.  I also think that when kids are given an opportunity to help, it allows them to feel compassion and responsibility for Wavey & Oli.  Finding a favorite toy, bringing a book or handing a cracker can bring smiles and the ability to relax.

I also think it is important to talk about kids they come in contact with who are "different".  It is the unknown that is scary.