Good News

When our son was born almost thirty- one years ago, we had no diagnosis. Seven years later a new blood test
confirmed Prader-Willi Syndrome. It was not a good day for our family and from
what I understand it is not a good day for families currently facing a new diagnosis.
I was sure when our son was born that we were going to “fix this.” I wrote in
my book Raising Robert that denial and I were very good friends.

Years have passed and our son,
Robert is a grown man. Life has not been easy for any of us. There have been
behaviors, outbursts, weight gain, scoliosis, hospitalizations, and worry. I am
happy to say that a lot of that is in the past for Robert and I think for some
of the people who are his cohorts.

I recently signed up to participate
in Path for PWS. For those of you who are not aware of this study, it is online
data collection, for people with the syndrome. Their brochure states “Path for
PWS is a study to help us better understand serious medical events in PWS over
a 4-year period, as well as evaluate how PWS related behaviors change over time.”
The data from this study is intended to inform the development and clinical trial
design of potential new treatments.”  You
fill out surveys about the person with PWS, over time.

Now for the “Good News.” You can view graphs after you have completed your survey. This has data from other parent’s or caregiver’s taking the survey. As I have stated in the past, I am not a trained medical person, but this is what I interpreted from the graphs. Many of the behaviors that drive caregivers to distraction decrease in frequency as the person with the syndrome ages. That includes tantrums, aggressiveness, lying, stubbornness, and difficulty in transitioning.

 Many of you will be encouraged by this,
especially if you are in the middle of teen years. The behaviors start to
decrease in the twenties.  A respected psychologist
who treats adolescents told me brains are not fully developed until age
twenty-five.  Young adults without the
syndrome make better choices in their late twenties as well.

The other information I gathered
from the surveys was that many of the people with the syndrome have delightful qualities.
They are creative, grateful, friendly, spiritual, kind, have a desire to please
others, and love to learn.

This data will be used in a variety
of ways. Whenever I hear of Chromosome research I think “wouldn’t it be
wonderful if someday they could replace the deletion that causes Prader-Willi
Syndrome.” As I have stated before, learning to live with “what is and not what
you wish it was “is important, but living with the syndrome is hard. A cure
would be miraculous.

 I have witnessed progress in Robert’s
maturity. Holidays are always a difficult time for people with the syndrome,
Robert is no exception. He has failed to complete a workout many weeks in a row
that would give him a reward. I told him, “we couldn’t allow a home visit where
he would have many unearned rewards until he got back on track.” I also said,
“I feel really guilty about this Rob.” He said, “oh don’t you feel guilty, I am
the one that should feel guilty for not doing what I am supposed to do.” This
has never have been a response in the past. The fact that he takes
responsibility for his actions is huge.  

If you are parenting a teen with
PWS know that it can be a very difficult time, but it may not be. Each of us
are individuals with different personalities. It’s not going to help you today
to dread what might happen. Enjoy your child and your life.