The Walk

A few Saturdays ago we held our 11th Annual Walking for PWS event in Northern California.  Oscar was only 18 months old when we held that first walk and I remember how Paul carried him on his shoulders for most of the two mile loop around the Berkeley Marina. (I remember thinking it was good trunk work for Oscar to hold himself upright like that -oh how we start to think like therapists when all we do is take our kids to therapy.)

In the years that followed Oscar was eventually able to walk the entire 1.75 mile loop, and then, later ride his bike.  The Walk became a way to keep track of those hard-fought milestones and we celebrated with our PWS community, as well as our friends and family that joined us, that Oscar was able to do just a little more each year.

This year though marked a different milestone.  Oscar's class is graduating from 5th grade next week and moving on to different middle schools.  So, at the urging of Oscar's teacher and the director of our school, I invited all of Oscar's classmates and their families to join us for The Walk.  I hesitated to extend a group invitation like that because, as I keep saying, these teachers, families and their children, our dear friends now, have been "walking with us" for years already -- including and accommodating Oscar, keeping him safe, urging him to join games, listening patiently through mind-boggling stuttering, inviting him to watch a basketball game or go to the movies.  They admonish me for thanking them.  They just don't see it that way.

Nearly 50 people walked for Oscar this year at our new location - Crissy Field in San Francisco. Over half the class was there with their families, along with two families from Ruby's class, three teachers and the school's director.  We made t-shirts with the 5th grade class picture on the back for all to wear.  It was almost too much -- that sea of people wearing "Walking for Oscar" shirts on that clear blue sky day in the shadow of the Golden Gate Bridge. All those people there, for Oscar, for us! I felt my body tighten, not wanting to sink into the moment lest I melt into a puddle of tears. 

Our group was asked to lead off the walk.  I wish I could post the picture of Oscar with his friends and Ruby with hers pausing under the green and white balloon arch that marks the start of the walk but I didn't ask everyone's permission.  I wish I could post the picture of Oscar heading off down the path sandwiched between two pals.  It would show his proud shoulders (but not the slight bounce in his step as he walked off.)

I wish I could share the picture of Ruby and the two boys from her class as they wandered slightly ahead, chatting amicably, looking older than their 7 years.  When Ruby heard that Oscar was inviting his class to come and support him, she wanted to ask the 1st graders to come and support her too.  I sent an email explaining PWS to her class, realizing as I did so that I hadn't really ever taken a moment to formally educate all of those families about PWS and what that means for Ruby as a sibling.  I've been feeding them tidbits for two years now, not wanting to burden them either I guess.  I was so glad Ruby was open to sharing, and mostly that she asked for support too.

I wish too that I could post pictures of the elaborate face painting, our group with the Golden Gate Bridge in the background, the kids playing chase on the banks of the amphitheater, the teachers chatting and remarking on the day.  I'll hold this day always in my bank of memories from these amazing six years.

Here, though, are a few pictures I think I can post:

Conference Eve

Tomorrow is our annual state Prader-Willi conference and this year's speakers are fantastic. Dr Linda Gourash and Dr. Jan Forster are my favorite PWS experts. Their work has formed the basis of our approach to Oscar's food and behavior, and I credit their brilliance for our success so far.  Their work helped us create a food security protocol that keeps Oscar safe at home and at school.  They also helped us realize that telling people that Oscar was always hungry didn't really elicit the desired response. Instead, if we say that "enough is never enough" people won't be tempted to try to placate Oscar with more food...No matter how much you give him he could always eat more. It's a hard concept to grasp, and it applies to more than food.  For years Oscar would try to wear two or more pairs of socks. He would wear layers and layers of pajamas and as many as three shirts to school.  His plastic animal collection is probably worth thousands. (ok, that's an exaggeration).  But we see it across all domains -- enough is never enough.  So simple..but I would have never thought of it myself.

I own four copies of their Food, Behavior, and Beyond DVD. One is on permanent loan to our school district and I brought two more with me to share with local elementary teachers that will be attending tomorrow.  Oscar's two aides are coming, as well as his former preschool teacher and the district behavior specialist.  I just know I'll be sneaking away from my post at the education table to chat with everyone!

I drove down to San Jose tonight to attend the pre-conference "Meet and Greet" and got to talk briefly with both Dr Gourash and Dr Forster. They are so lovely and generous with their time and attention.  I found out in the four plus years since I've seen them present they've revamped their talks to include more up to date material. I thought they were pretty well up to date before so I'm excited to see what tomorrow brings.  I'm hoping it includes another song or two -- they always mix in a couple of duets they've written about PWS into their presentations -- definitely a highlight! I'll be sure to report back here.

Prader-Willi Walk-Along

Ok, so I've been pretty absent from the blog-o-sphere.  I started a post a few days ago about being home last week with Oscar during his spring break.  I wanted to complain about all the medical crap we took care of and how it led to more tests and questions for me but thankfully resulted in less stuff for him. (glasses: optional, scoliosis brace: no).  I was going to go on and on about how Oscar's spirits soared all week, even when he was struggling with horrendous disfluency and fighting for every word, while mine just plummeted, tired of the doctors, tired of the stuttering, and how it made me feel even worse to be the one complaining. But then I cut my hand with a butcher knife trying to remove an avocado pit and when I got to the ER a family was in distress over the attempted suicide of a loved one and, well, I finally got some perspective.

Instead of that post, I steered my efforts toward our annual Prader-Willi Walk-Along fundraising letter.  The walk is this Sunday and we're gearing up.  Boxes and boxes of sky blue t-shirts sit in our basement, along with thirty some informative signs and their accompanying stakes which we place along the mile plus walk route that looks out over the San Francisco Bay. We'll drag out our huge white tent to use as the registration booth and print out several pages of labels with Oscar's picture to be worn by friends and family who join us for the walk.  I'll make lunches for our family and our Southern California PWCF leaders who always come north to help our local support group pull off this event.  We'll help set-up, we'll walk, we'll sit and enjoy the band, we'll talk with other families while the kids play picnic games and get their faces painted.  And at the end of the day we'll feel grateful for who Oscar is, for our friends and family who support us from near and far, and for the wonderful people we've met on this unexpected and admittedly unwelcome journey. It'll be good.

PWS featured on Discovery's Mystery Diagnosis!

PWS is featured on Discovery Channel's Mystery Diagnosis tomorrow March 22nd at 10pm.  "The Boy Who Couldn't Stop Eating" is the story of Conor Heybach who is now an adult (and serves on PWSA's Adult Advisory Board).  From the show's description I gather Conor wasn't diagnosed until he was a teenager.

When Oscar was first born and for several years after it seemed like the only media attention that PWS received was sensationalist and depressing. As I remember it, kids were often portrayed only as food-seeking monsters and parents were depicted as clueless and desperate.  (Admittedly my memory is poor and I was particularly sensitive in those days)  We in the PWS community used to tell ourselves that any awareness is good awareness, and it is true that some people were subsequently diagnosed with PWS because of those shows.

In the past few years, though, I feel like there is interest in more sensitive treatment of PWS in the media. A month or so ago I was contacted by a television producer who is putting together a show on PWS, also for the Discovery Channel. When I spoke with her she was thoughtful and bright and genuinely interested in all aspects of the disorder.  I'm definitely not opposed to exposing the more difficult parts of PWS, but I do care that treatment of PWS be thoughtful and thorough and that the individuals with PWS and their families are shown the deep respect they deserve.

I feel like we are in a new era, and so I'm hopeful about this episode of Mystery Diagnosis.

My Baby Rides the Short Bus

I finally got to listen to last Friday's KQED Forum hosted by Dave Iverson with guests Shannon Des Roches Rosa, Jennifer Byde Myers and Sarah Talbot talking about their lives and contributions to their new book:

My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities

I highly recommend you listen to this:


Whether you have a kid with special needs or would like to understand or support a family who does, this is a great show.

And then go buy the book of course!

You can also follow Shannon and Jennifer's blogs, like me. (And who wouldn't like to be just like me?)

Also, due to popular demand, I finally installed an email feedy thing.  Enter your email address in the little white box down on the right hand side to get a very nicely formatted email whenever I post.   (But don't forget to come back here to leave your comments!)