Some describe people with PWS as being always hungry. But Oscar and many others are actually better described as never full. It's an interesting and important distinction, and not one I can claim to have made. I heard it first from those two PWS experts Drs. Gourash and Forster who also developed the concept of food security after working with many patients with PWS at the inpatient crisis center at the Children's Institute in Pittsburgh.
As I've mentioned, Oscar will almost always finish every last bit of
his meal. Yesterday the grapefruit quarters I'd given him for snack
were completely stripped of all the pink flesh, and most of the white
pith. He would eat the gelatinous strip of fat on the steak if Paul or I didn't cut it off. He will drink the rest of the soy sauce after the sushi is gone. But we don't talk about "full" or "hungry" at all, and I never ask if
he's either. The question is irrelevant because the answer won't change
anything. He's done eating when the food is
gone. If Oscar says he's hungry I remind him when the next meal
is. If I were to instead, even one time, give him a little bite of something, it would undermine his food security and create anxiety. He would know, or have the impression, that he could acquire more food, food outside "the plan" at any time. He would never let go of the possibility that I might cave again because I did that one time. He's never forgotten a "one time" breach. The one time I let him get out of bed before official wake up time. The one time he had screen time before he was done with his homework. These breaches often end in meltdowns when denied the next time.
The reason that the distinction between always hungry and never full is important is that telling others that Oscar is always
hungry doesn't elicit the desired response. If Oscar is always hungry, well-meaning people would be tempted to placate Oscar by giving him just a little bit more. Instead, if we say
that he is never full, and that enough is never enough, no one is tempted to give
Oscar more food, since more food won't solve the problem. No matter how much you give him he could always
eat more. So simple..but I would have never thought of it
myself. Thank you again, Linda Gourash and Jan Forster.
And, because pictures are fun (and remind me that I am writing about, and for, Oscar) here is one of the two of us along the California coast one beautiful Sunday last April.