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.


The Leivas said…
What great tips! With your permission I'd like to repost on our blog, we have friends and family who ask this sort of thing all the time. We're also going planning a trip to see extended family in August and many of them haven't seen Olivia in years, this will be very helpful!
Laura said…
Shannon, I often tell kids that Julie's body is like a big girl but her brain is like a baby (or big girl on the outside but baby on the inside.) If they are older, I might say that her brain isn't working correctly and that it is kind of broken and will get more broken in the future, but little ones seem to just get confused about her size vs her behavior.
Cari said…
My favorites are when I hear Dylan's answer to a little friend's question about his big sis. So matter of fact!

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