Sunday, November 2, 2008

Halloween and PWS....

Don't mix. No secret there.

Being that this is our 13 Halloween with PWS, I have run the gamut of how to handle it and I think this year I may just have outdone my self!

When David was little, I dressed him up and took him around with the other kids and worried the whole time how we would handle it once the food thing kicked in.

When he was 4 we gave up Trick or Treat and traded it in for family night where we would go for pizza and a movie or bowling etc.. and just pretend it wasn't Halloween. We have done this for the last few years successfully and the kids really enjoy it.

Our school still lets the elementary kids celebrate Halloween with a party and a costume parade (Don't think for a second that I haven't been fighting to get that fixed!!!) Last year I kept Ben and Caroline home and ignored it... this year that wasn't an option, so I sent them in.. Ben wore his catchers gear from baseball and went as a baseball player and Caroline wanted to be what else but a
Princess... I scrambled for a Princess outfit on Friday morning... can you tell my heart wasn't in it?? But came up empty for Caroline.. then I saw an old evening gown that was either from a wedding or from our cruise a few years ago... and had an idea... I put it on her and took the scissors to the bottom and Wallah... We had a princess dress!!! It had spaghetti straps so I cut and tied them so that it fit her and had her wear a white shirt under it... it was perfect!

The only thing left to tackle was Trick or Treat on Friday night... it so happened that Friday night was also the Homecoming Football game at the High School! I wasn't about to miss the game to go Trick or Treating with 3 kids who have PWS.

Soooo.. I came up with the idea of a "Reverse Trick or Treat" David, Ben, and Caroline all love to visit and give things to people... so I went out and bought 3 plastic pumpkins and filled them with Halloween Candy. Then I printed up a little flyer that looked like this:

We are participating in a “reverse” Trick or Treat tonight to raise awareness about Prader-Willi Syndrome. David, Ben, and Caroline Knopf were all born with PWS.
PWS typically causes low muscle tone, short stature if not treated with growth hormone, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Almost all have cognitive deficits and require special education. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”). The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues.

Please help us to spread awareness by visiting the web at

Then I sent the 3 of them out into the crowd at the Football game ( I watched) to hand out candy and our little flyers. I promised them that if they handed out all the flyers and candy that I would save a piece of candy to eat!

They went to work handing out the candy and flyers.. Caroline even got $3 given to her... she thought that was pretty cool! Dave looked at me, shook his head and said.. " You are either insane or a genius... do you realize you just gave buckets of candy to kids with PWS?" I just smiled. It went off without a hitch and they collectively handed out 60 flyers about PWS to the crowd.
They were done by halftime and then sat and ate their piece of candy and were happy as can be. So am I.... there was no stress, no tantrums, and most of all no big bags of candy to contend with for weeks. Perhaps most of all there are 60 more people in this world who have heard about PWS!

Have a good week everyone!



Patty Martin said...

That was a wonderful idea!! Even though Brittany is 17, she still loves trick or treating. I may have to remember this next year. We did the family night this year, but she wasn't into it.

Have a great day!
Patty Martin

annew said...

My daughter and I enjoyed your great idea. I bet your kids did a wonderful job making everyone's Halloween a little more fun.
I give you tons of credit, 3 kids with PWS and you are creative and making it good. thanks also for spreading the word.
How old are your kids?
My daughter is 14 and the best kid I know.

Anonymous said...

Thanks for the inspiration. Halloween is always so tricky for all of us with a family member with PWS. Thanks for keeping up the awareness also that is so desperately needed! Rock on!
Christine Matteson --mom to Mikayla--6 (PWS) and Dakota--9


Anonymous said...

What a great idea. My grandson was born 2 weeks ago today and diganosed with PWS 3 days later. They are just coming home from the hospital today. At dinner last night we discussed future Halloweens and how to handle them. I will certainly remember your idea. GBY

Anonymous said...

This one goes down in the record book – for all future Halloween’s as the PERFECT attack!!!!


God BLESS You guys!!!!


Anonymous said...


What a wonderful Idea! you are so creative!!! It sounds like a great Idea and one we may use in the future!!


Sarah Garrett, LCSW, CSAC, CSOTP
Mom to my Sunshine Corbin 23 months old, PWS/UPD and walking and climbing all over the place, his big brother Luke our Angel Baby in Heaven, and a new little blessing due in the spring!

Anonymous said...

Yes, Vicky you are a genius. What a great idea and a wonderful story! Ann, Nana to Morgan

Anonymous said...

Yes, Vicky you are a genius. What a great idea and a wonderful story! Ann, Nana to Morgan

Dan and Peg Knopf said...

Mother Teresa said she never did big things - just many small things in love. Sounds like you heard her. Love, Googrie & Papa