Tuesday, November 1, 2011

Prader-Willi Syndrome (or: What is that in your pants?)

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At the King’s Daughters’ School (a residential, education & vocational facility for children, adolescents, and adults with mild to moderate mental retardation and a secondary mental health diagnosis located in Columbia, TN) one of the disabilities we “specialized” in remediating was Prader-Willi Syndrome.  PWS is a genetically-based disability.  One of the characteristics of PWS is the individual’s inability to feel full and satisfied from eating.  People with PWS have the potential to become dangerously obese because they never feel full and they are always hungry.  They will steal, horde, and hide food.  There have been common reports of the families of some children with PWS locking up the food in the house only to have their children sneak out at night and break into a neighbor’s kitchen to steal food.

Shari has Prader-Willi Syndrome.

She is such an interesting girl.  She is fun to talk to with a sense of humor.  She is a good reader and she has excellent parents.  But she was always hungry.

My office was on the main floor of the school.  The Vocational program was located on the lower level. One morning I received a phone call from the Vocational Director, Brenda Hardison. “Mr. Geil?” she said. “Will you please come down here?”  Usually that meant trouble.  So I took of my watch, laid it on my desk and headed down stairs.

Brenda met me out side the workshop and we had an unusual conversation.

BRENDA: I think Shari has a loaf of bread down her pants. (Like that was just a normal phrase, “Hey, how’s it going?” or “Do you have piece of gum?”)

ME: What?

BRENDA: Shari keeps reaching and bending under the table.  She comes back up and she has crumbs on her face.  When I asked her to stand up, there was nothing under the table.  She has GOT to have a loaf of bread in her pants.

ME: Uhhhhhhhh….I really don’t want to look in her pants.

BRENDA: Just ask her.  She’ll tell you the truth and it won’t turn into a big incident.

ME: Fine.

So I called Shari and Miss Brenda into one of the work rooms.  Shari already looked like she knew what was coming.

As typical for some people w/PWS, Shari was under 5 foot tall.  She had a smallish head and narrow shoulders with a very round mid-section giving her a Pear-like shape.  She also wore very baggy jeans.

With all the seriousness I could muster I asked the question I never imagined I’d ever have to ask,

“Shari, do you have a loaf of bread in your pants?”

Dejectedly she reached down the front of her trousers and whipped out an entire loaf of bread.

“I was just hungry Mr. Geil,” She said sadly.

“I know.”

Later she stole an entire bunt-cake from the teacher’s lounge and hid it behind the commode in the girl’s upstairs bathroom.  She then told the teachers she had diarrhea and she ran to the bathroom every 10 minutes.

We figured it out eventually…the tell-tale crumbs.

chris 

To learn more about Prader-Willi Syndrome: www.pwsausa.org
 
To learn more about The King's Daughters' School: www.tkds.org

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