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:

May (Really?)

I looked at the calendar just now, and was shocked to see it was May 11th.  I mean, on some level I know it's May, but you could have convinced me it was still March.  Not writing - not whipping out a quick blog post, or taking a moment to scribble a few notes on a post-it - seems to make time speed by even faster.  Memories blur and are then lost. Suddenly we are in May.

On those rare days when I do pause, even just for a minute, to jot down a few words about the proud look on Oscar's face when he tells me he was invited to the movies, or Ruby's sweet giggle when I offer to push her baby stroller, our crazy-paced life slows for a second. Writing allows me to gather and relish memories that we can then carry forward with us as life's pace picks back up.  I have trouble remembering this.  I am going to keep trying.

Here are the things I didn't write about this month:

Oscar choked on a hot dog at a baseball game and I had to do the Heimlich.  Very scary, especially when the water I had him drink (bad idea, don't do this) gurgled and then ran down his chin while he stood there, frozen, his eyes fixed on me.  This incident was a blatant reminder that all the choking warnings with PWS are true. I realized too that it's not only the rushing to consume unauthorized food that leads to choking in PWS, but the lack of muscle tone to cough or encourage food to come back up.  It was four weeks ago now.  He's ok.  I'm still shaken.

On that same night I found out my essay was not chosen as a finalist in the Children's Hospital Notes and Words contest.  I was not surprised -- I didn't have as many votes as the lead essays and it would have been a difficult essay to showcase.  And yet of course I was disappointed.  Over the past few weeks I've continued to hear from people about how deeply they were affected by it and this is spurring me on to write. 

I am writing, a tiny bit, with a writing group I just joined. We sit in someone's living room - today it was mine - and write to prompts for random amounts of time over two hours. Five minutes, twelve minutes, or longer when I forget to set the timer.  And then we read what we wrote. No commenting, which I find so difficult because the writing is beautiful and I want to say that. It's fun and it's hard and it's exactly what I should be doing. 

What I am also doing, but don't want to be doing, is dealing with Oscar's IEP.  We had his triennial IEP meeting back in December and I finally signed that document last Monday, the morning of his 3.5 hour transition to middle school IEP meeting.  I don't write much about his IEPs here because I don't want to discuss anything that is deemed confidential or could in any way hurt his case.  I can say that I truly believe that everyone sitting around the table - all 16 of us - wants what's best for Oscar.  But the law doesn't mandate "best", it only mandates "appropriate".  And so I spend a lot of time documenting what constitutes appropriate for Oscar.  I'm hopeful that we will come to some agreement on the appropriate placement (which in my opinion is also the one I consider to be the best) but sadly it won't be without many many more meetings. 

Meanwhile the school year is rushing to a close and I am thinking daily about the ending of Oscar's elementary years in that sweet and supportive school. I will be writing about that a lot here, plus our amazing Walk for PWS last week, and my friend and teacher Kate Hopper's newly released book Use Your Words: A Writing Guide for Mothers.  So exciting!

I won't let these extraordinary moments pass without getting them on paper, but I may have to use those post-its (or the back of my hand) as a temporary measure till I can transfer the words here.

The Power

Abe's not the only sibling struggling right now. Ruby too, in her own way, is coming to grips with PWS, but instead of retreating she's started pick-pick-picking on Oscar.

"Chew with your lips closed!"

"Stop sticking your elbow into me!"

"Hurry up Oscar, it's your turn in the game!"

Honestly, she's noticed my (decidedly more gentle) reminders and is imitating me with an added punch.  I'm working with her on just taking care of herself and not worrying about Oscar, but that's not in her nature.  She's highly attuned to her environment and just can't turn off the noticing.

Last night at dinner was no different. We were at our very favorite Mexican restaurant and the three kids were squeezed together on the bench side of the table. Ruby balked at having to sit in the middle and took out her frustration on Oscar.  Elbows! Lips! Stop squishing me!

Instead of reprimanding Ruby again I decided instead to compliment Oscar.  "O-man", I said, "I want to honor you for putting up with all this criticism day after day and not letting it phase you one bit".

I reached across the table to give him a fist bump. He returned the bump with a triumphant smile and said, so eloquently,

"Mom, I have two choices in these situations.  I can ignore her, or I can walk away.  When I do either of those two things the power bounces back to me."

"WOW", I said. "Where'd you learn that?" hoping it was something I'd said in some moment of brilliance that I'd clearly forgotten.

Nope - it was one of his amazing teachers. Of course.

Costa Rica

We’re in Costa Rica with Paul's family this week, visiting my sister-in-law who is living in Monteverde with her daughter while on sabbatical.  While all of us were excited to get here, Oscar was especially ecstatic about this trip.  As a little guy he was obsessed with rainforests and has been begging for years to visit one.  I reminded him yesterday that his preschool teacher turned the classroom’s play kitchen area into a rainforest on his behalf. (He doesn’t know this was also because otherwise he would have spent the entire school day in the kitchen, making plates full of plastic fruit mixed with all sorts of forbidden foods like pink frosted donuts, three layer chocolate cakes, and miniature fake fries.)

Oscar’s been so engaged and energetic here in the rainforest.  He’s the first one to volunteer for any walk – to Quaker Meeting, a mile up the big hill to breakfast, an extra two mile loop in the local reserve.  On Sunday he hiked the steep, rocky, and, at times, slippery trail to the impressive San Luis waterfall.  He hikes slowly in the back of the group with whichever adults feel like strolling, while the other kids race ahead, bounding up hills and leaping across makeshift bridges. Oscar doesn’t leap or bound, but he does just keep on going without complaint.  When we got to the waterfall he happily squatted on a damp rock overlooking the deep pool and watched his dad, cousin and brother jump from the face of the rock into the water right next to the misty fall.  I don’t think he ever thinks about wishing he could follow in their footsteps, but sometimes I do.  Not for my sake, but for his.  What would it be like for him to be out there jumping too?  What would his dogged determination look like in a body that complied? Or, I often wonder, are his determination and positive attitude also a result of learning to persevere through the challenges that PWS presents?  I’ll never know of course.

On Monday we went to Selvatura, a nearby adventure and wildlife park.  Oscar insisted on visiting every exhibit - he toured the reptile house, saw the hummingbirds, and visited the butterflies and insects.  And, amazingly, he agreed to a ziplining tour through the rain forest. I didn't know, and neither did he, that it would be thirteen ziplines through the rainforest canopy that would take 2.5 hours to complete.  I had chosen the hanging bridges walk instead but arrived at the last platform in time to wait for Oscar and the rest of our crew to complete the last zip. I stood there waiting, pacing, hoping he'd had fun. Hoping it wasn't too strenuous or stressful. Hoping we hadn't stretched him too far.  Hoping he and Paul hadn't had to hike back on the trails instead.  I looked out across the valley in search of the starting platform but it was hidden among the trees over one kilometer away. Another family was waiting too, and we took turns checking the cables for vibration, our only sign that they were on their way. When Oscar finally zipped in to the platform he was waving and beaming.  “Mom, mom it was so cool -- we were so high up in the trees!"

Here he is mid zip. (I was relieved to learn he did every zip with a guide).

And here he is beaming. (You can't see me, but I'm beaming too)

Exsanguination

Exsanguination -- why, you are wondering, is this word spinning around in my head?  Exsanguination is the bonus word that Oscar correctly spelled on today's spelling test. Really.

I stopped by school this morning to drop off Ruby's car seat and ran into Oscar's teacher. Her huge smile forecasted good news -- I'm not sure what I was expecting but it wasn't this.  My brow furrowed in disbelief as several thoughts raced through my mind.

He must have seen the word before.

Nope. 

Someone must have told him. 

Nope.

Did he cheat? 

No way. (I feel horrible that this even crossed my mind)

I looked over at Oscar's aide who nodded, smiling, confirming.  By now the director of the school had joined the conversation and the marveling.  She, like all of Oscar's teachers, has been celebrating his successes with us since kindergarten.  (In second grade, when Oscar was reading his poems aloud at the class publishing party, the poems he had written himself, her eyes were wetter than mine.) 

As we discussed what exsanguination actually meant, Oscar bounced over and said, "let me see if I can do it again."

Without hesitating he rattled off the letters -- E-X-S-A-N-G-U-I-N-A-T-I-O-N.

I must have still looked surprised because when he finished he said confidently, "It's easy Mom. You just go syllable by syllable."

Syllable by syllable. Little by little. Step by step. He's so right. It's how he has gotten here.  It's how he learned to walk. It's how he learned to read, and ride a bike, and draw a giraffe. It's how he'll always move forward.  It's how he'll always accomplish his next goal.

I used to be so impatient, anxious even, waiting for Oscar to reach the next milestone.  When he was an infant I compared him to my memories of a precocious Abraham who took his first steps at 8 months. When he was a toddler, I'd pull out the developmental tests and check his progress against skills for his age group.  I'd argue to the early intervention therapist that he could stack those 1" cubes if he had better trunk strength and fine motor control and therefore he shouldn't be penalized on his cognitive scores.  I'd talk incessantly with other parents about what their child could or could not do.  I'd lie awake at night thinking about ways to help him along.

At some point though I stopped charting and calculating and wondering and worrying.  I still supported him. I still taught people how to break down tasks into smaller chunks so he wouldn't get overwhelmed and could feel a sense of accomplishment each step of the way.  I still took him to all his therapies and advocated fiercely for his placement at this amazing school.

But mostly I relaxed into the knowledge that he would eventually get to that next place and that it wasn't a race. Mostly I just started believing in Oscar.

It seems corny now but the very first book we read to Oscar when he was a floppy infant in the NICU struggling to stay awake long enough to feed was The Little Engine That Could.  There weren't too many books lying around the NICU but this little dog-eared copy was a staple and we read it no fewer than a dozen times in his two week stay.  We read it to ourselves as much as to him. We read it to glean hope that he'd someday be able to eat, to walk, to talk -- things we didn't count on in those early pre-diagnosis days. Oscar knows this, and sometimes when we express surprise at his latest accomplishment he reminds us that he is the little engine that could.

He reminds us to believe.

Another Conversation with Oscar about PWS

Every few months Oscar and I seem to find ourselves in one of those conversations about Prader-Willi syndrome and how it affects his life.  I've largely protected him from the scary information and try to frame any limitations he might encounter in terms of what he can do, not what he cannot. 

This morning, as he cozied up in front of the heater in his jammies, I should have reminded him to get dressed for school but instead I casually asked if he'd be interested in a sleep-away camp for kids with Prader-Willi at Camp Harmon this summer.  I think that conversation would have gone fine if I had not, in the very same breath, asked his 7 year old sister if she was interested in circus camp. Oops.  

Oscar's heard all about circus camp from our babysitters who are counselors there.  They've told him about the friendships and the art projects and the circus activities and the big show.  But what he remembers most about circus camp, I finally cajoled him into telling me, is that at circus camp you get ice cream as a reward for doing the dishes. Every night. Based on that alone he has decided that circus camp is for him.

I tried to tell him that I didn't see him being interested in learning to walk a tight rope or riding a unicycle or swinging from a trapeze high off the ground. 

I tried to tell him that I know he likes art projects, but that he also likes animals and basketball and that I was thinking about a camp that had those types of activities.

I tried to tell him that the Camp Harmon was like the family camp we go to every summer except that he gets to go with friends.

With tears brimming and lips quivering he asked why he had to go to a camp with all the "Prader-Willi people".

(I spent the next several minutes lecturing him on people-first language and not calling himself or letting others call him a "Prader-Willi" while he stared at me with a stunned look on his face.) 

And then I answered his question.

"Because, sweetie, at Camp Harmon they understand Prader-Willi syndrome and they know how to keep you safe.  Even if you went to circus camp you wouldn't be able to have ice cream every night as a reward for doing the dishes. Eating all of that ice cream would be dangerous and make you sick."

He formed a little circle with his index finger and thumb and said he'd be ok with only having a tiny bit of ice cream every night.  "I wouldn't need a lot, Mom, I swear."

He calmed down only a little when I reminded him that so many of the kids he looks forward to seeing at our fundraising walks, and support group meetings, and even yesterday at a middle school he was visiting have Prader-Willi syndrome and that many of them attend this camp. He smiled when I reminded him that Emilie and David and Owen would probably be there.  And he looked maybe a little relieved when I told him he didn't have to go to camp at all -- that I was only giving him the option.

I'd like to say this conversation ended elegantly but it didn't.  When I finally stopped talking sadness overwhelmed him again and the tears flowed harder.  So I tracked down his iPod, found his favorite Green Day album and plonked the headphones on his ears.  And I hoped that the abrupt transition to something he loves would distract him enough so he could get ready for school. (It did.)

We'll revisit this conversation again soon I'm sure. As Oscar heads toward adolescence he will undoubtedly notice more differences between himself and his typical peers.  He will have more questions. There will be more tears.

I am hopeful, though, that the opportunities he will have in life will always be meaningful and satisfying, even if not exactly the same as his typical peers.  I will insist.

Good Friends

My friend Lindy and her three kids surprised us with a visit last week. They moved to LA a few years ago and we hardly ever see them, but we have one of those distance-proof friendships.  Brooke, her daughter, was born with PWS just three weeks after Oscar in the same hospital.  Most of those doctors had never seen a child with PWS before Oscar was born and actually delayed testing Brooke for it because the odds were so low that two kids would be born with this diagnosis at the same hospital in such a short period.

I remember the moment I got the call that another baby had been diagnosed. My heart sank and soared at the same time. I was devastated for the mom, but I also suddenly had company in my grief.

I spent many an afternoon curled up in the faded green chair in my living room talking to Lindy on the phone while the boys napped. We cried and shared feeding tips. We said things we couldn't say to anyone else.

Our kids presented differently with the syndrome...another reason we confused the NICU doctors I think. Brooke had better muscle tone and moved and rolled and batted at toys long before Oscar. Oscar had an easier time with eating and gained weight more easily (a good thing in the early months, but it still scared me).

Here they are in February 2001 -- Brooke was nearly two months old and Oscar just over three months old. Whenever I look at these pictures I remember how much I wanted Oscar to move. His shoulders were glued to the floor and it took every ounce of energy just to turn his head the slightest bit.  Brooke, on the other hand, had more muscle tone -- look how her position changes in each picture and how she's tucking her body in to Oscar's. Notice how her arms are up and her fingers slightly curled.  Oscar did move his head! 

I spent a lot of time comparing Oscar to other kids (with and without PWS) in those early years trying to figure out how he was going to fare.  I wondered obsessively if he was "mild" or "severe", terms I no longer use.  I finally realized, after many many months of pouring over articles, talking and emailing with other moms, and interviewing doctors and therapists, that PWS is a syndrome comprised of many symptoms, each with its own spectrum of possibility.  Just because a kid develops more quickly or slowly in one area really does not mean they will fare the same in another.  A kid with super low tone, for example, is not necessarily going to struggle more with skin-picking or food-foraging.  It is true, however, that a kid with better muscle tone can explore and learn from their environment, which can aid cognitive development.  (I lost a bit of sleep over that.)  It amazes me how this one set of pictures brings back all that angst.

Anyway, here are Brooke and Oscar at age four, re-enacting that baby scene. (Silly parents obviously put them up to this!)

And here they are now at age 10.

Still good friends!

Coming Together Again (Hopeful Parents)

I'm over at Hopeful Parents today, writing more about Oscar's tenth birthday.  Come check it out and leave me a comment here or there!

Holidays

We spent a lovely Thanksgiving with friends yesterday.  The festivities started with a flag football game that, amazingly, even Oscar and Ruby were coaxed into playing.  Abe was a ringer, of course, and Paul's team saved his skills till late in the game and secured a win.  I didn't add much, but I was out there, holding Ruby's hand and trying to look open for a pass.

Later, warmed by our friends' hospitality and soothing fires we lounged and talked and played cards while the bird roasted.  Oscar managed well the uncertain timing that accompanies roasting a turkey. It is so hard for him not to know exactly when things will happen, especially big things, like the Thanksgiving meal. Well-meaning guests engaged him in lots of talk of hunger and favorite dishes while I tried so hard to distract him from thoughts of food.  I finally had to explain my seemingly odd behavior and they were ever so understanding and curious about his disorder.

Today we started off the holiday season with our traditional 7am viewing of Elf.  The kids excitedly dragged their pillows and comforters out to the family room and Paul and I bundled up on the couch.  Afterwards we queued up our favorite Christmas tunes (Christmas Jug Band!) and started the annoying task of sorting through drawers and shelves for clothes and toys we don't really need any more. By mid-morning the kids were all tired of my nagging so we headed out the door for a walk and a round of haircuts.

Tonight we drove up to the local park's Christmas Fantasy Carousel.  Santa was there too and both Oscar and Ruby eagerly climbed onto his lap though neither really had settled on a toy to request. (Ruby did say she was going to ask for a candy cane -- she's never had one, which I do feel terribly guilty about).  I remembered to ask the elves not to offer them candy and thankfully neither noticed the overflowing basket of sweets at Santa's feet.

Abe, sporting reindeer antlers was too cool to play along.  But he did ride the carousel, after trading Ruby for the Santa hat.

And so we begin the holiday season!  We'll start on outdoor lights tomorrow and perhaps some decorating too. It's early, I know, but we're heading back East before Christmas so we want to have some time to enjoy the season at home as well.

A Decade

Oscar is TEN today. 

For the past few years I've occasionally thought about how I would honor the passing of Oscar's first decade. I'm not talking about the standard birthday cake, balloons and presents.  I'm talking about going back and really acknowledging the journey -- the bumps and the triumphs.

I considered writing letters to all the amazing and compassionate people who taught me so much and supported me in those first couple of years as I battled fear, sadness and grief. 

I thought about fundraising for the organizations that led me gently into the world of disability and fortified me for the advocacy and planning and patience required to be Oscar's mom.

I envisioned a huge party at which I publicly and tearfully thanked every person we've encountered on this journey, from our very first home visitor to the boy in O's class who yesterday came up with a new nickname for him, "Oscar the Awesome".

I thought about hiking to the top of Mt. Tamalpais and screaming in celebration that Oscar thrived and that I survived.

Most likely today will be just like any other day. I haven't arranged to do any of these things but I am giving myself permission to make this an entire year of acknowledgment and celebration. 

I feel compelled to mark the end of this decade, I think, because I am keenly aware of how far we've come, and also that our journey continues. Oscar will always have Prader-Willi syndrome and it will always be our job to keep him safe and to help him develop into the happy, confident, earnest person with lots of ideas and goals that he is already clearly becoming.  It's daunting, honestly, and while ten years ago today I was gripped with fear over the prospect of raising a child with a disability, today I am full of hope. 

Oscar, you taught me so much about hope!

3 hours

6 days

3 months

7 months

9 months

One

One and a half

Two

Two and a half

Three

Four

Four and a half

Five

Six

Seven

Eight

Nine

Nearly...

Almost...

TEN!!!!!!!!

I love you Oscar!

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.

The Beginning of a Long Conversation (Hopeful Parents)

I'm over at Hopeful Parents today (!!) trying to answer some questions Oscar has about disability.

Come check it out, and stay and read other entries too. 

Six

Ruby -- my third, my last, my baby -- was born six years ago today.  

I remember seizing with joy and relief as I clutched her tiny body to my chest for the first time. It had been four years since Oscar's nightmarish birth, but the images of his blue floppy limbs lingered at the edges of the room until Ruby's lusty cry chased them away.

The boys were in school when she was born but came directly to the hospital afterwards. Oscar arrived first and enjoyed some moments with his new sister. He wasn't jealous, just curious.

"How did the doctor's make the fingers?" he wanted to know.

Abe arrived a little while later and immediately wanted to hold Ruby. He carefully inspected her long delicate fingers and caressed her mottled pink cheek. 

 

He was only two when Oscar was born and though I doubt he recalls the details, I'm sure the shadows of that scary day were lurking in the depths of his memory too. He was also starting to grapple with the reality of having a brother with PWS.  Ruby's birth, in all its loud and sleepless glory, was probably as healing for him as it was for us.

After holding her for a long while he gently laid her down beside me and said "Mom, can you keep an eye on Ruby while I go to the bathroom?" (These boys of mine took this big brother business seriously from the start.)

Tonight at dinner we honored Ruby, following a tradition borrowed from school. Abe honored Ruby for trading sillybandz with him.  Oscar honored Ruby for playing farm and pretend house. I honored Ruby for her strength and for always speaking up for what she needs even though she's the youngest in our busy household. (Everyone laughed at that because Ruby is the loudest, most outspoken person in our family and doesn't really need any more encouragement to state her needs.) And Paul honored Ruby for the nice conversations they have while hiking and biking.

Happy birthday sweet girl! We're so glad you're here!

Transitions and Paperwork

I'm sitting on the scuffed hardwood floor in my bedroom right now, surrounded by piles and piles of stuff. Paul and I have decided that we have to "address" our bedroom.  Binders, books, newsletters, files, printer cartridges, spare change, financial records, and dust, lots of dust, cover every flat surface. And while there's a large armoire desk in here, it too is so weighed down by odds and ends that I can't work there.  Instead I move my laptop from room to room, leaving bills on one table, school forms on another. I can't find the stamps, or the envelopes. It's time to deal.

The problem is that "dealing" isn't easy. So many of the binders, books, and files stacked on every shelf and corner contain information about Prader-Willi syndrome or Oscar and I actually have to go through them sheet by sheet to figure out what I should shred, recycle or save. I've been avoiding this for years. 

Paul found a large plastic bin in the basement that I can use to save the stuff I don't need every day but am afraid to part with. So far it's filled with VHS tapes: four from previous PWS conferences, one Discovery Channel show on PWS, and a documentary "Maribel" about a young woman with PWS.  I don't need these every day -- they don't need to be in my bedroom or even on the main floor. I'm trying to decide what else will go in there -- the developmental tests from 2001 on? The nearly 10 years of PWSA and PWCF newsletters? Medical records and notes from therapy sessions starting in December 2000. IEP files starting in what year?

Sometimes I actually do need to look at this stuff. Just last week I scoured through five years of speech notes to find the recommended interventions for stuttering. And the week before that I lifted several paragraphs of verbiage from a 2007 IEP mediation agreement.

School started a couple of weeks ago and all three kids are settling very nicely into their classrooms. Abe is a 7th grader now and cracking me up with his sudden interest in choosing his outfit, combing his hair and learning to text. He's also working hard in his classes and playing a new sport.  Ruby's a kindergartner now, and I really have never seen her transition so smoothly from home to school and back. Instead of clinging she's hugging, instead of growling she's waving. She bounces into her classroom in the morning, and when I pick her up, unintentionally late every day, she's cleaning the tables with a soapy sponge and a wide smile.

Oscar's a fourth grader now. His classmates are the same ones he's been with since Kindergarten and his teachers have all known him for years.  His transition has been smooth too -- no major behavior outbursts or fits of non-compliance. Sure there have been a few sticky parts, but with his aide and teachers, we're on it. Still with any transition, even in circumstances as familiar and friendly as these, there's a lot of work. I'm coordinating with therapists for his OT and speech services, getting his computer programs up and running, creating new ways for us to communicate. (I got that website going!)  I still need to write a letter to the school staff reminding them of Oscar's issues. I think they're doing great but they requested a refresher. (Yes, this school ROCKS).  I also need to revise his lunch activities chart and fill out a form about my goals for him this year. Our IEP is still not resolved and I'm waiting to hear back from the lawyer on that.

It all gets a little overwhelming.

On Saturday I attended our local PWS support group meeting in San Franciso. Paul and I started going to these meetings when Oscar was just two months old, and these people are like family to us now.  We've supported each other through tricky times -- surgeries, dealings with school districts, concerns over food and behavior. We share information on doctors and the best place to get a sleep study. Most of the time we bring the kids -- there's free childcare -- and that gives Oscar, Abe and Ruby a chance to interact with kids who face the same challenges, whether as a sibling or as a kid living with PWS.

I hadn't been to a meeting in a long while. The kids' sports and school schedules often conflict and I sometimes find myself choosing a "saner Saturday" for the whole family.  This week, I left Paul juggling two concurrent soccer games and a birthday party.  I was so glad I did.  We welcomed two new families and a group of three film-makers who are starting to work on a documentary about PWS.  We took turns giving updates and requesting help on difficult issues. 

As overwhelmed as I have been with what it takes to keep a kid with PWS going, I didn't find the need to even talk about our family very much.  In part I sensed that others needed more time. But also, when I looked around the room at the new and familiar faces I realized, again, that my experience is their's. I am not alone. They know all about the piles of paperwork, books and medical records. They know all about school transitions and unresolved IEPs.

I didn't need to give my overwhelm a voice. And I left calmer, more grounded, and also assured that we are on a good path with all things Oscar.  We just need to keep going.

Sea Isle

For five years now my family has rented a place in Sea Isle City on the Jersey Shore in August. We fly out from California and meet up with my parents, brothers, partners and kids to spend the better part of a week before heading to Connecticut with Paul's family. I always look forward to Sea Isle, especially the long days at the beach reading and body-surfing.  Tumbling in the waves, I surrender in a way that seems impossible in my daily life.

The weather was beautiful this year (just one rainy day) and I finally got some exercise.  I was sore for days after Beach Boot Camp but it felt so good to work my long-ignored muscles.  Later in the week we found a yoga instructor to do a morning class on the beach for our family.  We laid our towels in an arc on the sugary sand and faced the ocean. After a summer of thinking at every turn that "I'm not doing it right" it felt so good to gaze out into the waves in tree pose.

The highlight of the vacation though -- after the clam and cocktail-filled happy hours, riding the roughest waves, and watching the six cousins create hama bead designs -- was our family bike ride. 

As we set out from the condo, our three kids miraculously riding alongside us, I turned to Paul and said, "Look at us! A year ago I never thought we'd be able to do this, but look at us!"

The ride was not without incident of course -- just after I celebrated the milestone with Paul, Oscar's tires slipped on the sandy sidewalk and we looked back to see him sprawled on the ground, tangled up in his bike. He'd cut his lip, and the blood mixed with his tears and ran down his chin.

And yet, somehow we managed to go on.  It took an eight block walk to CVS for water and paper towels, but Oscar did recover from the fall and remount his bike.  He overcame his resistance to using coaster brakes and stopped dragging his toes when Abe and Ruby demonstrated the technique for the 100th time.  He overcame his anxiety about pedaling into the wind when Paul explained that the winds were wimpy in the morning. (That's why Grandpa always sails in the afternoon!) He overcame fatigue in the last twenty blocks when I distracted him, first by looking for punch buggies, and then by watching the block numbers whiz by.

As I coasted beside Oscar on the last leg of that four mile loop (with stops for mini-golf and lunch), I realized that the bike ride was a perfect example of how things tend to go for us. For any endeavor, whether it be participating in school, playing with friends, or learning to ride a bike, Oscar supplies an enormous amount of perseverance. And the rest of us -- teachers, coaches, friends, family, even Abe and Ruby -- contribute mountains of patience and scaffolding and encouragement and humor and shaping. It's exhausting, but our collective efforts often pay off.  And I am grateful for that.