PWSMN Golf Tournament at Glen Oaks Course in Stillwater Minnesota

 

The Spring fund raiser for the Prader -Willi Syndrome Minnesota Chapter was held Friday, May 17th, at the Oak Glen Golf Course.  Several golfers participated, making it a great success. The lame joke I tell about being " a perfect ten on the golf course, a ten on every hole," gave me the perfect excuse for not golfing, I attended the dinner and raffle. The event organizers were Erin Bale, Carol Hern, Ashley Hendrickson, Breanna Rice, Kristi Rickenback, and Denise Westenfield.

 The quantity and quality of door prizes and raffle items was impressive. No one left without a prize. Some tables had multiple winners, including one man who won a snowmobile helmet and a designer purse. The organizers thanked all the people who helped make the event such a great success; including volunteers, participating golfers, corporate donors, Glen Oaks and their staff. The final amount raised is yet to be determined but will be about $30,000.  Fifty percent of the amount raised will be given to PWSA(USA). 

Recently, I attended a huge gathering of people at the Minneapolis Convention Center.  I was struck at the time, that many of the people attending were "women of a certain age."  Their children are grown and they are free to volunteer their time and creative energy.  It appears that our next generation of women, are equally committed to make a difference. 

Perseveration, a big word for a big behavior

Perseveration, is not a word that many of us know.  I became familiar with it when my son Robert, who has Prader- Willi Syndrome was sixteen.  The word in laymans terms means getting fixated or stuck on an idea or believed "need."  A Special Ed teacher who ran a summer program that our son was involved with spoke to me about Robert's behaviors that included perseveration.  No one else in the program could compete with Robert's inability to "let go" of an idea once it had taken hold.  I first became aware of the behavior when our son was about eight. A doctor had suggested medication for Robert's ritualistic compulsive behavior.  About two weeks of the medication he had a "meltdown" over taking a shower.  He wanted to watch TV.  I spent forty-five minutes struggling to get him into the shower, threatening loss of Game-Boy, TV programs, and movies.  Nothing worked.  Eventually, both of us totally exhausted, I said "what is it going to take to get you into the shower."  Robert said "I will take a shower if you take away all my punishments" "Done" I agreed, totally giving up control.

Was this a medication induced behavior I thought?  "Of course" I comforted myself, nothing like this had ever happened before. We immediately stopped the medication.  Twenty years later, I could now teach a Master Class in how to address this issue.

  1. You will never convince a person with the syndrome, when they are fixated on an idea that they are mistaken.  You can do a few things to prevent escalation of emotions.  Let the person do what they want, if it will cause no harm.  Do not engage the person arguing your own point of view.
  2. Distraction can be a good option.  Focus the persons attention on something positive, such as visiting a friend.  Plan a few diversions so you don't have to come up with them as an outburst escalates.
  3. Emotions can quickly escalate.  When our son got out of control he was sent to his room, the door closed.  If you are away from home remove the person from the scene.  You will not be able to finish what you were doing.  The back seat of your car can be a safe place. The doors can be locked and the person seat belted in.  Many people with the syndrome tire easily, an outburst will generally end with them falling asleep.  Weighted blankets or a squeezable toy can help lower anxiety.  

Consistency in behavior expectations is crucial.  Adhere to a routine. People with PWS are masters of manipulation.  If they get away with a behavior once, you will have an argument in the future. Set clear boundaries especially around food.

The good news for parents of children with Prader-Willi Syndrome is this: Your child's outbursts are similar to the power struggles most parents experience. They are definitely more intense and go on for a longer period of time. When they begin living away from home you will not be the person they argue with. We are now able to spend time with our son for several days with no arguments.