Monday, April 16, 2012

Follow-Up on "Is This It?"

I realize that I left you all hanging since Thursday's post. So thankful for all of you who called, emailed, and responded on Facebook on my personal page about the matter.

Consensus is, we're not there... yet. Some PWS parents encouraged us to lock up now just to alleviate everyone's anxiety, but Dean hasn't even attempted to get anything from the fridge or pantry. Heck, he can't even open the fridge or the pantry. We have a lock on the pantry door because I was replacing the doorknob and thought, well, we're going to need it someday. Might as well just put it on there now so we're not driving to Home Depot in the middle of the night to get a lock. So we're prepared.

The difference between what Dean is doing and what "it" is seems to be anxiety around food. Dr. Miller says that this is the crux of the issue since the brain of someone with PWS is entirely focused on food. Thinking about eating it, actually feeling hungry, wondering what they're going to have next, dealing with the tension of insatiable feelings that can't be acted upon. Dean is definitely not there yet. That said, his recent behaviors do represent a change from what he's shown us thus far, and so there is a new responsibility on our part not to leave food out and tempt him. Really, the aspect that makes me most nervous is communicating well about it to Dean's school when I'm not there next year. This is not something you can get right 80% of the time and just say, "Oh, we'll do better next time." I will be praying for that, starting now.

Yesterday, another PWS mom posted a picture of a chocolate cake that was half-eaten. She wrote, "this is what happens when you leave a child with PWS alone for a few minutes." My heart sank. For her son, for our son, that this syndrome is so crazy that it could drive someone to do that to no end. So we're not there, but it is coming. Until then, we are thankful for where we are and for the support of the PWS community and others.

Here's today's reminder to vote for the PWS video on challenge.gov! VOTE HERE!

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