Research Blog

Spring Green

Around here, there are two types of people—spring folks and fall folks. As an extension of our obsession with the weather, we take our seasons pretty seriously. The two groups can argue non-stop about which of these two times of year reigns supreme. I, a die-hard spring fan, wait impatiently all winter for the torture to be over and for the festivities to begin.

Touching Video by FPWR Member Rachel Pastiloff

Watch a video put together by new FPWR Member Rachel Pastiloff.

Futures Planning

One of the constants in PWS is concern for the future. From the very beginning, we worry. We worry about what yesterday and today are going to mean for tomorrow. We worry about the future of our child with PWS. We worry about the future of our other children, and we worry about our own future. To make matters worse, we even worry about how much we worry! As always, we need to move beyond worry to planning and action. There is no better treatment for worry than this!

Elephants

After some interesting PWS chats lately, including our discussion about whether or not to tell others about our children and PWS, I couldn't help but think about the broader issue of how each of us as individuals and families see PWS differently. It reminded me of the old story about 12 blind men standing at various places around an elephant. They were given the task of touching the elephant from where they each stood and then describing the elephant following their experience. Of course, each of the men gave a different, but accurate, report. The man standing nearest the skinny, flitting tail gave a very different description than did the man standing nearest the powerful trunk, and both were different from those who felt the massive, solid body of the elephant. The description

...on Mother's Day

Today was one of those beautiful Kentucky days that make me so glad that I live here. As part of a great girls' day out, I took Kristen and Erin to the local science center and we enjoyed the exhibits and the IMAX. While strolling through the second floor, there was a machine that takes your picture and shows age progression. My first thought when I saw what was coming was to run, not walk, to the nearest exit and escape, but the girls weren't having any of that. I found myself plopped down and my picture captured, soon showing me old, older, oldest.... When you start out pretty old anyway, the story goes down hill from there!

Time Pressure

Life with PWS sometimes requires some "tweaking" in order to up the chances that things will run smoothly. We often find ourselves at odds, especially with our children with PWS, regarding appointments/deadlines. Hurrying is next to impossible for many of our children since it requires an incredible shift from where they are at the moment to where we'd like them to be in the near future (schedules, appointments, etc.). Since this can be a constant struggle in our lives, maybe it's time to take a look at steps we could take to reduce everybody's stress.

...on being confidently uncertain

I found a website in one of the homeschool groups I'm on that I think would be helpful to us as parents, and for our children with and without PWS. In all the tricky waters that we have to navigate, especially when we're flooded with holiday events, some parenting support might be timely for some of us. I know it has been helpful for me.

Help children like me!

We all know how putting the stress on one word, as opposed to another, can change the whole meaning of a sentence. I was reminded of this lately when I drove by a billboard showing a picture of a pretty, smiling child with some kind of motor issues using a walker. The tagline on the billboard said, â€œHelp children like me.â€ [It was undoubtedly posted by one of those non-profit organizations trying to raise money to cure something. Imagine that! :) ]

FPWR Reaches $1 Million Mark in Funding PWS Research

Friends,

Cicada Power

I donâ€™t know what parts of the country this will resonate with, but where I live, here in the heart of the Bluegrass State, th