Wednesday, March 31, 2010


We're in Tucson for Spring Break.  Paul and I have only been to the Southwest once before and never to Tucson. We've learned the names of so many of the beautiful native desert plants and cacti-- ocotillo, palo verde, barrel cactus, prickly pear.  But the saguaro cacti are especially stunning standing tall on the hillsides against the reddish canyon walls in the early morning light. 

Hikes in the canyons and side trips to Biosphere 2, the Desert Museum, and a spring training game (sadly, not the Oakland A's) have filled our days here along with afternoon marathons at the pool and tasty dinners out.

Today's adventure, though, was the highlight of the trip.  Paul, Abe and I hiked an ambitious 6.5 miles roundtrip up Bear Canyon to Seven Falls.   In addition to seven falls at the end of the trail, we also crossed the stream seven times on our way up.  Scouting for the best route and then boulder hopping without once falling into the rushing stream became our game.  Pressed for time, we hustled up passing other groups, and paused only for a few moments at the top to enjoy this stellar sight:

I wish we could have sat and bathed in those cool pools but we were late so we ran much of the way back down the switchbacks, dancing around the rocks along the trail.  We crossed the stream deftly in all seven spots, experts now.  Our water bottles clanked from their caribiners as we happily raced on the sandy paths between crossings.

At one point Abe said "This is so fun! No one is crying, no one is complaining and no one is worrying about anything!"

The "no one" he was referring to, of course, was Oscar and Ruby who we'd left with Paul's parents this morning so we could do this challenging hike quickly.  I know our energy sprang in part from the freedom we all felt, unencumbered by the younger two who would have struggled. Unconstrained we could push our bodies while our minds, so used to answering questions, allaying anxieties, and creating games to coax O and R along, could relax.

It was a wonderful feeling and I'm thrilled Abe acknowledged it. 

We've had very little internet access here in Tucson, so while I meant to join a conversation about siblings and responsibility started by Louise's great post over at Bloom last week, and continued on Elizabeth's wonderful blog, I've just not had the time.  I also think that I've been composting (to borrow from Natalie Goldberg) my thoughts.  I write and think a lot about siblings, but conversation, even in cyberspace, forces one to examine assumptions and rethink.

Though I have tried hard to protect Abe from feelings of responsibility over Oscar's current and future care, a certain amount is just unavoidable.  Abe certainly is a deeper thinker and more compassionate person because of his experience as Oscar's older brother. And while I do at times wish for something different for him, I know his life is ultimately enriched. 

But I also know that, as much as we adore Oscar, we need to have more adventures with Abe alone to regroup and reconnect away from the distractions and burdens of PWS.  Today's outing was a wonderful reminder that Paul and I need to create these opportunities at home, and not just on vacation.

Tuesday, March 23, 2010

Oscar's Clay

Oscar loves to work with clay.  Last year, in second grade, his teacher integrated clay work into so many aspects of the curriculum that by year's end his dresser top was full of projects -- owls, butterflies, a frog sitting on a lily pad, and a clog-like shoe to name a few. He's most proud of his bowl though, the one he made for soup days at school.  He etched the names of his favorite animals into the center and glazed it orange, his favorite color. 

Art was something I'd written off as a goal back in kindergarten or probably before.  As a preschooler, Oscar was never that interested and his fine motor skills and executive functioning deficiencies always seemed to get in the way of starting (or finishing) a project.  Aside from some finger painting as a toddler he pretty much avoided the art scene.

Until kindergarten.  I clearly remember telling his kindergarten teacher that we should just skip the drawing stuff and focus on letter formation.  Thankfully she didn't take me seriously.  It took a lot of behavioral and OT work, but by the end of that year Oscar was drawing simple figures and loving the twice weekly kindergarten art class.  The lower grade art specialist told me several times a month how much she enjoyed working with Oscar and how he seemed to have "an eye".  She'd pull me into the art room before school and dig through the piles to find Oscar's piece and point out her favorite parts of his work.  His work was always more rudimentary, more spare, than the other kids but she'd see past that and focus on what was there, in a way I couldn't before.  She'd worked with kids with disabilities before and had that ever-precious skill of knowing when and just how hard to push. Oscar responded to her approach and started to love art.

Now a 3rd grader, art is one of Oscar's favorite things about school.  He's gone from hiding under the tables when the markers come out to jump-up-and-down-excited.  I wish I could take some credit for his enthusiasm or skill -- but I'm pretty sure he got his genes from his Nana, who is a painter, and his Grandpa, who is a sculptor.

When he heard that his now-retired 2nd grade teacher was offering an afterschool clay class he begged me to sign him up.  Oscar so rarely insists like this so I was inclined to honor the request.  But the logistics were complicated as usual.  He'd have to skip his nap, and he would need an aide  -- to meet him after school, give him his snack and then escort him to class where he'd need help staying on task.  He would need an aide to answer his never-ending questions and talk him through the inevitable anxious moments or meltdowns.  And I really wanted that aide to be able to drive him home too so I didn't have to schlep across town yet again.

While I sat spinning my wheels, the clay teacher herself steered a former student - now a high school senior who drives -- in my direction.  (Oh how I love our school community!)  So every Monday afternoon Oscar stays after school for clay class and I get to spend an extra hour or so with just Ruby who craves that "special time".  Oscar comes home exhausted but sated.  It's a great set-up, and I've been so caught up congratulating myself that I finally have some after-school things going and time alone with Ruby that I really didn't think too much about what Oscar was actually doing in class.

So, I was rather surprised when I saw Oscar's pieces in the Clay Show today. It's clear he had some help.  And yet, the pieces are also so very Oscar.

Here is Oscar's heart -- filled with the carefully etched names of his favorite animals, just like his soup bowl. I knew our aide was a good fit when she told me how hard Oscar worked on this heart and that he was very anxious that it wasn't red enough. "If he asks," she said, "just tell him it's VERY red."  Exactly, I thought. 

And here are Oscar's hands. We all love the hands. Even Abe went on and on at dinner tonight about how awesome they are while Oscar sat straighter and straighter and nodded proudly in Abe's direction. And they are definitely Oscar's -- so thin and delicate with those inexplicably curved fingers.  He told me he picked the glaze closest to his own skin color.  "Yes, you, after a month in Hawaii," I joked with him, but he didn't get it. That's ok.

And, finally, the proud artist!  Artist.  I never thought.

Sunday, March 21, 2010

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.

Tuesday, March 16, 2010

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!)

Baseball Season

It's baseball season again!  The house is littered with aluminum bats, muddy cleats, white and gray polyester pants in three sizes, and long navy blue socks.  I've spent hours entering five teams worth of practice and game times into my calendar.  I'm team parent for two of those teams so I am also creating and updating rosters, assigning snack shack shifts, and communicating game and team photo times. So much work, and yet, it just feels right. Seven months without baseball was way too long.

Abe had practices and scrimmages almost every day last week and a tournament this past weekend.  He tapes the rosters and schedules for his three teams to the kitchen door and marks his games on the family calendar.  Ruby's first t-ball practice was Saturday morning and she showed up at breakfast in full uniform.  Her pants, which are supposed to be knee length, reach her ankles and I had to cut a full foot off the bottom of her navy and white baseball t-shirt so that it didn't bunch once tucked in.  She's especially excited about her new pink bat with the words Girls Rule emblazoned on the side.

Oscar is playing Single A again this year and has already had two practices. With Paul in Brazil last week I played the role of shadow -- keeping him focused and moving him from station to station where he's learning to properly throw, swing a bat, and field a grounder.  I'm hardly the right woman for the job. I make a great team parent but I've never really played the game. Baseball is so hard for Oscar but he insists.  I love his determination and so I do whatever I can to make it work, including learning to throw right alongside him.

The manager of Oscar's team is a close friend and Abe's travel team manager, as well as the manager of yet another team.  D is awesome -- and I mean that in the full sense of the word.  I am fully in awe of his ability to manage three baseball teams so thoughtfully and skillfully and still spend time considering how to coach Oscar and every other kid (while also managing his business and raising four kids of his own with his equally wonderful and busy wife).  He requested that Oscar be on his team, and the commissioners who also know us happily honored that request. We were thrilled, because D is such a fantastic coach, because Oscar thinks the world of D, and because his daughter L, also on the team, has an energy and enthusiasm that just lights Oscar up. 

We got double lucky (or is it triple?) in that Oscar's classmate and good friend Ben's little brother is also on the team and their dad, is also awesome.  He helps out at practices too, as does Ben, who anticipates and quells Oscar's anxiety better than most of us.

With all these supports I guess it's not too big of a surprise that the practices actually went pretty well.  Oscar still takes forever to find his grip on the ball before he throws it.  He argues over the right height of the tee and how to follow through on his swing, but he's paying attention and trying.  He makes contact when pitched to, he's more "in the group" than he was last year, and I even saw him move his body towards a ground ball.  Whenever he gets stuck or seems resistant to an activity I put on my serious face and talk about how Major League Baseball players do these exact same drills, including hitting off a tee. He was skeptical, and I definitely saw tears brimming at the base of his dark lashes, but he proceeded to hit balls off that tee without a meltdown.

Even though we know a few of the other kids and families on this team, I decided to send an email last week about Oscar, to explain. I didn't do this last year, or the year before when Oscar played t-ball.  I'm not sure why, though I am sure it has something to do with vulnerability and commitment and protection. 

Here's the email:

Hi Mariner's Families!
I wanted to send out a quick email letting you know a little more about Oscar.  As some of you may have noticed I've been shadowing Oscar at practice, and it is obviously not my baseball skills that drive me to do so.  Oscar was born with a rare genetic disorder, Prader-Willi syndrome.   PWS is a complicated disorder -- the hallmark of which is insatiable appetite.  I know it's hard to believe since Oscar is rather thin, but his diet has been painstakingly managed since birth.  On the field you'll notice Oscar's reactions and processing are quite a bit slower than a typical kid. It just takes him longer to do everything.  He also stutters, perseverates and has some anxiety.  I'd feel remiss if I didn't also add my (clearly unbiased) opinion that he is also an endearing and awesome kiddo that works so hard at everything he does.  Baseball is challenging for him but HE LOVES IT.  This is his second year in single A and he is so proud to be a Mariner.  

Paul (my husband) or I will be with Oscar at practices and games just to make sure that his extra needs don't get in the way of other kids getting the coaching and play they come out for.  Coach D (L's dad) and D (F's dad) have also both known Oscar for years. 

We are happy to answer any questions you or your child may have about Oscar.  We talk about PWS a lot and are very comfortable with anything that comes up.  We also feel like kids are so understanding when difference is acknowledged.  If your child has questions, here are a few things we often say with younger children -- Oscar was born with very weak muscles and he's worked hard to get stronger.  Also, sometimes it takes longer for words to get from Oscar's ears to his brain and then back to his muscles (slow processing and reaction times).  Oscar's brain gets stuck on an idea and it's hard for him to stop thinking about it (perseverating).  And regarding food, Oscar's body doesn't know when he's full so his parents always give him the right amount of food to keep him healthy and strong. (insatiable appetite)

The only thing we really ask, for Oscar's safety, is that he never be offered or given food.  We'll always be around too, of course.

Ok, in the end, not a quick email... Anyway, we're really excited about this team and look forward to a fun season!
Go Mariners!
Mary (and Paul, Abe, Oscar, Ruby)

My email set off a flurry of other emails.  One from coach D to the team saying wonderful things about our family and Oscar, and Oscar's love of the game.  I was really touched, and had that feeling I get sometimes that we have a whole army of supporters.  I got several other emails, including one from another dad who coached Oscar as a t-baller.  He said that he remembers Oscar's determination and success with hitting and that he was such a pleasure to coach. (I remember only my sleepy kid on the bench waiting for his turn to bat and my spacey kid sitting in the dirt at 2nd base watching balls go by...).  The other Mariners' coach emailed to say what a great kid Oscar is and how glad he is that Oscar is out there doing what he so clearly loves. And finally, I got an email from a mom saying she's so happy her son is on Oscar's team, "literally and figuratively". Talk about getting it.

The point of this post, if I can finally get to it after so much rambling, is that I truly believe in giving people the information they need to interact with your kid with special needs. Over and over again, at school, at camp, and now at baseball, I am often initially hesitant to share but when I do I am stunned at the compassionate and thoughtful responses, first from the adults and then from the kids as they get to know Oscar and are supported by their parents, teachers, and coaches in understanding O's struggles.

It is hard to put myself "out there" in an email to people I've never met.  Not because I am a particularly private person -- if you know me you know I am not -- but because it is hard to turn all of the attention onto our family.  I feel bad clogging up strangers' inboxes.  I question whether people want the full story.  Perhaps I don't want to bias people against Oscar before they've actually met him.  And yet, when I do share, the attention we get is the perfect kind.  People in our community seem to be genuinely glad we are here and that Oscar is out in the world insisting on doing what he loves (baseball, clay class, Los Mapaches, zoo camp).  And they genuinely like having the information so that they can help Oscar be successful too.

And so begins baseball season. Three very happy children and one grateful and busy mama.
Go Raptors! Go Mariners! Go Braves! Go Thunder! Go Cobras!

Monday, March 8, 2010


This past weekend was a blur of baseball practices, a kid's "rock" concert, dinners with friends, and a school auction (one of three to attend this month).  Paul left for Brazil Sunday morning, and I let the kids watch two straight hours of Scooby Doo while I finished cleaning our bedroom.  I had no fewer than twenty books piled next to my side of the bed, all of which fall neatly into three categories (essays/memoirs written by mothers, writing, fiction).  Unfortunately by the time I stagger into the bedroom at too-late-o'clock each night I'm too tired to read more than a couple of pages. So the books sit on the floor and on the bedside table and collect blankets of thick dust until the site of it depresses me and I grab a rag.

I allowed the TV on Sunday because we all needed the downtime, especially Abe.  Saturday, after an early morning baseball practice, he came home to an empty house, made a snack, changed his clothes and rode his bike two miles across town and competed in his first track meet. He was the only kid from his school who showed up for the meet.  He waited outside the entrance gate, confused I imagine, until his coach spotted him and lent him the $4 entry fee that I had failed to provide.  When we arrived an hour or so later he had just finished the 1500 meter, running his personal best (6'15") but still coming in last in his heat.  I spotted him from afar -- he was the only one in the huge crowd wearing his school's navy t-shirt and baggy shorts. His hands were on his hips and he was pacing, gingerly, wincing maybe, and blowing air from his red puffed cheeks.  I could read his disappointment from mid-field, but he was rather nonchalant about it when we finally reached him on the opposite side of the track.

We stayed for a bit, sitting on the crowded bleachers in the surprisingly hot March sun, eating mediocre california rolls and watching young runners streak across the finish line. These were serious runners, years younger than Abe, and dressed in sleek tight shorts and shirts, patterned knee highs and those shoes with the spiky cleats on the bottom.

"Real track shoes," Abe said with an uncharacteristic hint of jealousy.

I felt like I was watching future Olympians.  I saw arms pumping with perfect precision, chests thrust forward, cheeks rippling in the wind, heads dipping as they crossed the finish line to grab that extra 1/10 second.  We stayed until Ruby had to pee, until Oscar's friend got politely bored, until Oscar's mouth and back started drooping signaling major fatigue. We'd already carted this troupe to the Dan Zanes' concert up at UC Berkeley earlier in the day and they were starting to melt.

When we left Abe was sitting at the edge of lane six learning how to time the 100 meter dash with his coach who had taken him under his wing.  I whispered through the chain link fence that I'd be back in a little bit after I dropped off the friend, ran an errand, and got Oscar down for a nap.  Abe nodded -- he was fine.   He was totally fine, despite being the only kid from his school, despite knowing no one but the high school coach who was working the event, despite not having any cool running gear, despite never having competed in these events before.  He ended up running the 800 meter (which I also missed) and the 300 meter, breaking his practice record by four seconds.

Paul and I reflected on this a lot this weekend. We wondered if we were pushing Abe towards too much independence, forcing him to take charge of his stuff and his self at such an early age.  On the other hand, he chose the meet over the concert. He chose to stay at the meet when we left.  He chose to run in those events, a newcomer among veterans.

Earlier this week at the dentist I learned that Abe's dental hygiene continues to lag behind that of Oscar and Ruby and that while they can return to six month appointments, Abe still needs to go to the dentist every four.  I was frustrated when I heard this... part because Abe's clearly not taking appropriate care of his teeth part because I'm clearly not helping Abe take care of his teeth
...but mostly because if you have two kids going to the dentist every six months and one going every four months that pretty much means we're all spending way too much time at the dentist.

So I asked the dentist if Abe could come by himself.  After all, he rides his bike to school most days and her office is practically on his way home.

She whispered that technically kids were supposed to come with an adult, but that it might be ok. She could send him home with a report card, as long as he promised to show me.  Of course he'd show me, I promised her.

I asked her then when kids were finally allowed to come alone.  "At eighteen," she replied, "but they usually start at about sixteen". 

Abe is eleven.  ELEVEN.  Maybe we are asking too much of him?  Maybe having two other pretty high needs kids has made me lean too heavily on Abe? Maybe Abe feels that we need him to be independent?  I don't know.  I've been pondering this, and looking for more ways in which I can let him be a little boy once in a while too.  I acknowledge all he is doing on his own and ask how he feels about it all.  He says he "feels fine" and seems a little surprised that I ask.  And when I think about seeing him talk to strangers at the track meet, sitting comfortably and chatting with the adults over appetizers at our friends' house, and especially goofing off with his good pal, I realize he really is totally, perfectly, fine.

Tuesday, March 2, 2010

More Retreat

Here's a picture of the large common room at Faith's Lodge where I attended the Mother Words Retreat.  Early on in the weekend I staked out a spot on that leather couch on the left where I could gaze at the fire or through those tall windows at the blue sky and bare trees. From that spot I worked on an essay I feel like I have been writing f-o-r-e-v-e-r, but that's because I still expect things to come out great the first time. (Ha! See how new I am to this writing thing?)  In any case Kate's guidance renewed my enthusiasm for that piece and I started the typically painful process of reworking, expanding and deleting. Except this time I was having a blast!  I think I will print out this photo and tape it to my desk (wait, what desk?) to trigger that peaceful place when I am writing.

Kate wrote a terrific post with more details about our weekend. She also wrote about how the process of writing memoir can be therapeutic but how that doesn't preclude the carefully crafted result from being art. As Kate says, "you can experience a transformation in the writing process and still end up with art." Yes! Listening to the powerful and beautifully written pieces the other women wrote this weekend, I couldn't agree more.

Ever since the retreat, post ideas have been popping into my head more frequently.  I spent a good portion of the plane ride home Sunday night drafting a response to an article I recently read in the PWS newsletter The Gathered View.  My mind is definitely looser -- nicely oiled from all of the discussions, readings and writing exercises.  Look out for my thoughts on that article and more about daily life with Oscar in the next little while.