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.