Sunday, December 27, 2009

National Prader-Willi Awareness Month!

I just found out that the House passed HR 55 which establishes National Prader-Willi Awareness Month and encourages continued federal research.

This is HUGE -- the increased awareness will pave smoother paths for all kids with PWS as they struggle with the challenging aspects of this syndrome. Awareness has changed O's life -- but educating people is so hard. This will help Oscar, but it will really help babies yet to be born, and families who are struggling in their own schools and communities to be heard, to be taken seriously.

So I send a big thank you to all the parents, local and national PWS organizations, and legislators who obviously worked so hard to make this happen!

Here is a video of Representative Ed Royce (R-CA) presenting the bill that he co-authored with Representative Jean Harman (D-CA):

Thursday, December 24, 2009

Open the DOORS!

I took the kids dress shopping in San Francisco on Tuesday.  I know that sounds crazy -- three kids in a department store -- but I needed a fancy dress for Paul's cousin's wedding in NJ next week.  The boys are ring bearers and will be wearing tuxes. Ruby and the other flower girls will be wearing matching black and white polka dot velveteen dresses with a red bow around the waist.  After much debate Paul thankfully decided to rent a tux as well, but I was going to need something fancy too.  I tried to squeeze into the black taffeta skirt I bought back in, uh, college.  1989?  I shouldn't be depressed about the 6 inch gap in the zipper when I tried to get that thing on.  I tossed out my velvet dresses from my professional days in the early 1990s long ago, but I bet I wouldn't have been able to coax their slim silhouettes above my knees either.

So, off into the city we went, with the promise of BART train rides and ice skating in Union Square after dress shopping.  I did find a dress...one that Abe picked off the rack actually.  (The kids scoured all the racks in the dress department gathering all the black dresses in my size. We collected two armloads and settled into the dressing room for a long fashion show.)   It was pretty painless, if you don't count Oscar practically falling asleep on the dressing room floor and Ruby crawling underneath the doors taunting Abe and Oscar.  But that's all to be expected.

With my sleeveless dress with an embroidered taffeta skirt nestled in the shopping bag we took off for Union Square for a gander at the red and gold ball decorated Christmas tree and the outdoor ice skating rink. On the walk there Abe asked me repeatedly if the ice was real -- a reasonable question because it wasn't exactly cold outside and because four years ago we went skating on plastic "ice" at a different shopping center here in northern California. It was horrible. 

The ice in Union Square was real and the rink large enough but the lines wrapped around the temporary building.  One line was for ticket holders -- those organized people who pre-purchased earlier that morning or online. The other sad line was for people like us -- anxious kids and exhausted parents who realized the journey through this line to buy tickets and then back through the other was a two hour ordeal. Ruby scampered up on top of the adjacent wall in her black and ivory Christmas dress while Oscar stuck to my side asking repeatedly "So are we going skating? How long is this line? When are we going to get in there?"  It was the kind of anxious rapid-fire questioning that doesn't allow time for me to answer, and my answers, if not carefully crafted, can lead to higher anxiety levels.  I can't think when Oscar is asking questions like that so I usually ask him to calm his body while I come up with a "plan".

The "plan" was to blow off the skating. Maybe come back over the weekend, with Daddy, with pre-purchased tickets in hand. Oscar and Ruby were on board with that plan but Abe's enthusiasm turned to a sulk and my guilt over dragging the kids all the way into the city just for dress shopping overwhelmed me.  I tried to salvage the morning by suggesting we head across the street where there was rumored to be a giant gingerbread house displayed in the Westin St. Francis Hotel.  The rotating "sugar castle" turned out to be so huge and so professional looking and not at all ginger-bready that none of us believed it was actually made of gingerbread until I read the sign. Twelve hundred pounds of gingerbread, 60 pounds of flour, 300 pounds of sugar, 400 hours of work...it was certainly real.  When I spotted a few missing gum drops along the surrounding train tracks the kids finally believed me (and wanted a gum drop, of course.)

We spent maybe three minutes looking at that marvelous sugar castle and then started on a quest for a lunch spot. The streets were crowded with shoppers and holiday cheer seekers and it was hard to keep track of the kids. Ruby kept falling behind and I was so glad I topped her dress with her cherry red fuzzy jacket, the one with the hood and large pom pom buttons. Aside from being adorable on her it was easy to spot her little body among all the dark pants and tall boots on the sidewalks.  Abe was voluntarily keeping an eye on Oscar which sometimes meant grabbing his arm and pulling him out of the way of oncoming walkers. Oscar was getting mad at Abe and Abe was frustrated with Oscar.  I beckoned Abe to the side and gently told him that I could keep track of Oscar. Oscar was fine. He was keeping up ok and yes sometimes he didn't notice people walking directly into him, but he was fine.

After much more grumbling and whining we found a decent lunch spot -- a yummy mexican place where they serve warm tortillas with salsa and make guacamole right at your table. Abe's mood improved with food in his belly and I felt like I had partially salvaged the morning. After lunch we headed down to the BART station.  As we went through the ticket gates we heard a train approaching and rushed down the escalator to catch it. It wasn't our train, but an eastbound train arrived on the adjacent track a few seconds later.  I wasn't sure if we wanted to take that one either because I didn't know where we would have to transfer. After a second's hesitation we got on anyway. I figured that we could get off at the next stop if needed.  As the doors started to close I realized that Abe had just barely jumped on the train in time, but that Oscar was still on the platform. We tried to stick our arms out to stop the doors but they closed anyway leaving me, Abe and Ruby on the train and Oscar on the platform, alone, in downtown San Francisco.

I started screaming:


"OPEN THE DOORS! OPEN THE DOORS!"

Abe and I pounded frantically on the doors and I looked desperately around the BART car for an emergency lever but I'm not sure I would have left my post at the door even if I saw one. Ruby stood up on the seat and screamed in panic.  I remember being worried that if the train jolted forward she would go flying. Other passengers jumped up and started yelling and banging too. Oscar was frozen. His arms were at his sides (not flapping wildly like when he is upset) and his large brown eyes were wide with fear.  Someone must have found a switch, or a lever, or a call button, because after 10 seconds (you could convince me it was two hours) the doors parted and I pulled Oscar into my arms. 

The other passengers fell back into their seats with relief and I huddled at the knees of my kids who had scrunched into the two cushion seat reserved for people with disabilities.  Ruby kept screaming so I held her while I talked soothingly to all of them. Oscar was still somewhat frozen, but he did say "I was really scared Mom".   "Of course you were sweetie, of course you were!",  I replied, and I pulled him in for another hug.

Ruby was scared too, and it took her a long time to recover.  She begged me to carry her on and off the trains as we transferred in Oakland, and then off again at our station.  She also awoke that night with a nightmare about being left behind on the platform.  She didn't want me to leave her alone in her room.

I was scared too, but my heart didn't race, my legs didn't turn to jelly.  Despite my screaming and banging I was pretty calm inside. And I can't figure out why.  Was it because Oscar wasn't outwardly panicked? Was it because I just couldn't believe the train would pull away leaving him there? Did I not have time to process? Or is it because we have already been through so much that this seemed small in comparison? 

I do think I knew on some deep level that he would be ok, that he wouldn't try to hold onto the train as it pulled away, like Ruby might have.

I think I knew he wouldn't get on the next train that pulled into the station, like Abe might have, but that he would stay right there waiting for me.

I think I knew that we could just go one stop and then hop the next train back. We'd be back in just a few minutes, ten tops. He's nine. He would have been fine. I keep telling myself that is why I didn't panic. 

And maybe I was also in a state of disbelief that I let this this happen. I should know better. 

He is nine, but he has PWS and he just doesn't react quickly in these situations.  I should know better.

He gets overwhelmed in crowds and new places. I should know better. 

Next time I will know better.

We are all fine now, even Ruby.  And we've spent a lot of time talking about what to do if you get left behind on a BART platform. Not that it will ever ever happen again.

Thursday, December 17, 2009

Published!





The 3rd grade publishing party was today. Each of the kids published their first memoir piece in the class anthology.  Oscar, my Oscar, was beside himself with excitement. Last week he nearly had a meltdown because he didn't feel his six "chapter" account of his trip to his grandparents' Lake House in Connecticut this summer was complete. He wanted to add three more chapters ("Breakfast at the Lake House", "Swimming in the Pool", and "Getting Babysitted by Lynn and Emily").  I finally convinced him that the six chapter version was perfect for the class anthology and that he and I could work on the expanded nine chapter version with photos over the winter break. Thankfully he agreed to that plan.

This is only earthshattering because Oscar has so much trouble writing. The blank page is overwhelming and leads to lots of dawdling, yawning, and crying.  When he does get started he has trouble stepping back and describing the bigger picture.  His printing is tiny and he erases and erases until each word is perfect.  His executive functioning delays really get in the way of organizing paragraphs and his anxiety leads to perserveration about neatness. At one point in October his two aides (job share -- not two at a time!) were joking that Oscar had finally gotten through airport security on the way back east. He was painstakingly writing about each little detail afraid to leave anything out. But at that rate he would never get to the stories he really wanted to tell.

We finally decided to take another approach. First, Ginger (one of his wonderful aides), had him dictate one of his Lake House adventures -- the day the pig escaped at the local zoo.  She entered his dictation into the computer then deleted phrases so he could go back and fill in the details by himself.  Brilliant! This provided a framework and got Oscar excited about writing. Next, I divided the whole trip into six separate adventures or "chapters" and typed out questions to accompany each chapter.  By answering the questions Oscar was writing the story of his vacation. When we removed the questions, the chapters stood alone as separate stories in a larger piece. Oscar then went back, with our help, and expanded and added sensory details.  With all of this scaffolding he fell in love with writing and developed confidence in himself as a writer. 

So today he proudly sat next to his piece as parents and classmates circulated around the class reading and writing comments to the authors.  About halfway through the hour he left his post to recruit more readers.  A couple of times I saw him approach one of the other parents and say "So have you read my piece? It's right over there!"  Lovely parents that they are, they smiled and headed towards Oscar's piece to read and leave him a comment.

I love the enthusiasm. Just love it.

Here he is, smiling proudly with Ginger.



Wednesday, December 16, 2009

Grateful

Time sure flies around the holidays...but not writing in a month has been hard.  I like to put my stories down and develop them but instead they are fluttering around in my brain taking up space but losing their nuance and details. I know, I know, I should just carry that little notebook with me and jot things down but it is never satisfying enough. If I start I will want to finish and there is just so much other stuff I am supposed to be doing.  "Supposed to"...a phrase I sure need less of.

In any case, as I race around town checking out all the local toy stores in between my usual medical rounds my mind keeps wandering back to a feeling of gratitude. Thanksgiving is several weeks past but still...

Every single day I'm grateful for Oscar's school (which was also Abe's and will be Ruby's), which supports and loves him, providing "just right" challenges and somehow fostering continued, even mounting, enthusiasm about school. Each morning, as he walks into the classroom, he checks the schedule on the board and has been known to jump up and down upon seeing that writer's workshop, or Native American posters, math centers or a spelling challenge is on the list for the day.  The teachers, his aides, and the staff really know what they are doing and it really works for Oscar. Four years in and I still pinch myself every day.  This stuff is hard for him...he's just barely (and often not) keeping up and yet he is learning and loves it.

I'm grateful for Oscar's friends who know, really know and like him.  It took me a long time to believe he had friends and even when I would say it out loud there would be a big "but...." lingering on the tip of my tongue. I'm catching myself now, admitting that these kids want to play with him, are choosing to talk to him.  The other day his friend Lara was supposed to come over. He hadn't seen her in 6 months because she switched schools and both kids were so excited to finally get together. The playdate ended up getting canceled (for good reasons) and both kids were devastated.  Lara called on the phone instead and I could hear her enthusiastic "OSCAR!!!" booming through the phone as I stepped out of the room. The smile on Oscar's face was precious -- he said she just kept asking him question after question and he could hardly answer before she asked another, let alone ask her anything. And then there's Angie who shares Oscar love of animals and will scheme for hours with him about the zoo they're going to run when they grow up.  She's patient, kind, so mature and talks to Oscar in the most matter of fact, non-alarmist way.  She even orchestrated his Halloween costume, passing tips to me through her mom.  I didn't know Oscar wanted to be a cow till I heard it from Angie's mom! And I can't forget Ben, his first friend at school. Ben was Oscar's de facto aide in kindergarten, before we'd convinced the school district he needed a real one.  Ben is the one who nicknamed Oscar "Oskie" and now all the kids call him that, even Angie.  Ben always knows what Oscar needs and can pull him into just about any social situation with his enthusiasm. Oscar knows he is safe with Ben. I think that's really it, with these kids and all the others in his class, he feels safe.  Safe enough to contribute to class discussions, safe enough to do his best and not worry too much about messing up. He knows he belongs and it makes all the difference to him.

And, finally, I'm grateful for this community of bloggers and readers.  I started off here a little less than a year ago and though I'm not writing nearly as much as I would like I am loving the new connections, the cyber friendships, and the wonderful writing I am reading on your sites.  I am constantly moved by your stories, your struggles and your triumphs and can't believe it took me so long to get here! 

So with that I'm hoping that I've ended my unintended month of silence and can get back to a more regular blogging schedule!

Sunday, November 15, 2009

Birthday Eve

Oscar's birthday is tomorrow -- November 16th.  He'll be nine.

I remember clearly the night before he was born. I wasn't in labor, but we were headed to the hospital anyway because I was going to be induced in the morning for reasons which aren't so clear anymore but seemed to be more about convenience than concern.

I remember sitting at our computer, awkwardly stationed in the entryway of our two bedroom bungalow, impatiently waiting for Paul to get home from work so we could leave for the hospital. The day, like today, was somewhat warm but grew dark so early as it does this time of year.  I kept turning around in my swivel chair to check if the approaching headlights were Paul pulling up in our '95 green escort wagon.  He finally called to say he had gotten distracted researching baby names (at work!) but he was on his way.

Paul's parents had flown in from NJ a few days earlier to stay with Abraham and even though they were incredibly familiar with our routines I'd written them thorough instructions about Abe's favorite foods, books and parks.  I listed rainy day activities and kid-friendly restaurants. I'd given them the phone numbers of all of our friends, directions to his music class, and probably songs to sing at bed time.  From the length and detail of the list you'd think I knew what was about to happen.

You'd think I knew they would need every last shred of that information.

You'd think I knew that I was going to spend the next night sobbing and clinging to Paul in the narrow hospital bed in the same exact room we'd elatedly shared with our newborn Abraham two years earlier.  In the exact same room, but this time the baby was hooked up to monitors in the NICU a couple of floors up.

You'd think I knew I was going to spend almost every waking hour of the next two weeks in that NICU questioning every pediatric specialist and trying to nurse an inexplicably and profoundly floppy baby.

I didn't. I didn't know anything.

As far as I knew we were going to the hospital to have a healthy baby. He was going to be just like Abe.  Strong. Smart. Perfect. Normal.  (Ahh those words!)

I think of this evening, and about what I knew and didn't know, every time I look at this picture which was hastily snapped as we hugged Abraham goodbye and rushed off to the hospital. I call it the "before" picture. 

Before Oscar. Before PWS. 


Years ago this picture would cause my grief to rise with the speed and destruction of a tsunami.  I'd fantasize about going back to this moment, about being innocent again, about not being burdened by disability.  I don't feel sad anymore when I look at this picture.  But I also don't recognize myself -- I look so young, so naive, that it's almost like I am looking at a different person.

Thursday, November 12, 2009

Overwhelm

Whenever I'm quiet here it almost always means I'm overwhelmed. I'm lacking time for reflection and writing and instead I'm speeding through the days in a fog.  Last night, after I'd given Oscar his growth hormone injection and brushed my teeth, I started to put my contact lenses back in.  This morning, when I dashed home between appointments to drop off a half-baked pizza for dinner I took it straight to the bathroom utterly convinced it belonged atop the white wicker hamper.  With the pizza finally stored in the fridge I hopped back in the car and drove across town, right past my destination.  That was the third time this week I'd lost track of where I was going and had to do a u-turn.

Overwhelm is:
  • A husband in Brazil and three kids in Berkeley
  • Posting an ad for a new aide and receiving 80 responses, conducting phone screenings from the car, and squeezing interviews in around 19 other commitments.
  • Watching my nearly 9 year old stutter so badly his whole face contorts as he wrestles with each word
  • Not having a plan for the 9 year old's birthday in 4 days.
  • Reading about PWS deaths and H1N1 and deciding, still begrudgingly, to get the vaccine
  • Scheduling that vaccine and three other MD appointments in one week.
  • Wondering why the 11 year old has been so quiet and lethargic for three days.
  • Writing a two page letter to my 5 year old's pediatrician about her obsession with food because I can't possibly explain all of the nuances of the situation with her present at tomorrow's checkup.
  • Wanting to edit my workshop piece for the class anthology but knowing I'm not going to have time.
  • Wondering why my hair is falling out, I've gained 10 pounds, and I'm dizzy again.
  • Other things I can't write in a blog for fear of upsetting certain individuals.
  • Wanting to just forget it all and crawl into bed with a good book.

Heck. I think I will do that. 

Check back tomorrow for an update.  Will I use sunscreen to brush my teeth? Put the milk in the cupboard? Confuse the school start time and deliver the kid 15 minutes late?  Or will I add a new blooper to the list?  I bet you can't wait to find out!

Thursday, October 22, 2009

Dreams

Oscar had a bad dream tonight and woke up crying.  We found him, all wobbly and tear-streaked in his green striped pajamas, peering through the paned glass door that separates the bedroom hallway from the rest of the house.  It was only 9:30 so he hadn't been asleep that long.  The details of the nightmare eluded him, but the corners of his mouth turned down and his lower lip trembled every time an image popped back into his consciousness.  He was dazed and disoriented so we escorted him to the bathroom for a pee and water break, hoping to erase those scary images.

Never one to miss a party, Ruby hopped out of bed a few minutes later and feigned having to pee too. Oscar sat on the toilet sipping water from a yellow plastic cup, pajamas pooled at his ankles, while Paul murmered comforting words.  Oscar, still stuck on the dream, sniffled between sips.

As I turned to the task of getting the Rooster, as we affectionately call her, back in bed, I reminded Paul with a wink to blow good dreams into Oscar's ears when he tucked him back in.  Oscar smiled knowlingly as I described the correct technique for dream blowing.

"You blow the dream gently into his right ear while cupping your hand over his left to keep those good thoughts in there," I instructed.

"Yeah yeah you gotta make sure they don't escape out the other ear", Oscar added haltingly from his throne.

I thought he'd be ok, then. His sense of humor was back and the good dream, whatever Paul would choose, would distract him.  A few minutes later though, Oscar was back in the hallway, crying again. The bad dreams had returned.

I helped him over to his bottom bunk, which he shares with no fewer than 14 stuffed giraffes of various sizes, and pulled the covers up under his chin.  I placed my hand on his cheek, pressing gently, and told him I would blow in a bigger dream, one to combat that bad dream that wouldn't go away.

I see you Oscar, standing by the chimpanzee exhibit at the Oakland Zoo.  You're wearing your Oakland Zoo t-shirt and a little oval tag with your name on it. Underneath your name is the word "Docent".

Oscar didn't know what a docent was so I explained that a zoo docent is an animal expert who talks to visitors and gives presentations. Oscar nodded contentedly, his face finally relaxing.  I return to the dream.

You're tall now, you're not a kid anymore, Oscar.  You're wearing a backpack that holds your water bottle and you take a nice long drink because it's hot out there.  Just then a school bus unloads at the zoo entrance and a river of kindergarteners flows into the zoo, headed straight for you at the chimpanzee exhibit. You see the children coming and are excited. Their energy is palpable and you remind them gently that the chimpanzees don't like loud noises. They respond to your calming voice and gather around you.  You invite them to ask questions, and a little boy's hand shoots right up.  You enjoy his enthusiasm and answer his question easily.  Next a smaller girl, with toes pointed slightly inward, shyly raises her hand. The way you speak to the girl with such respect and care, brings a smile to her teacher's lips.

After a few more questions you slip away to the giraffe exhibit where you are giving a talk on the difference between reticulated and masai giraffes at 10am.  You arrive early, Oscar, and unfold the piece of paper in your back pocket that lists the differences.  But you don't really need to look at this paper -- you know it all by heart.

You turn then to rest on the black fence of the giraffe enclosure.  Your right elbow is propped on the fence and your chin is cupped in your hand as you lean over and gaze at those oddly graceful creatures.  You know these giraffes intimately. You study them every day. You know the tall one can reach the highest branches but he shares the leaves with the shorter giraffes. You know the calf who likes to stir up trouble, and the smaller one who sticks close to his mom. You know who comes near the fence and who seeks shade. You know these giraffes and they know you.  You smile to yourself, happy, and turn back around to see that a small crowd has gathered now. They've heard about you -- Oscar, the giraffe expert!  You clear your throat, take a sip of water and greet your audience.

Oscar eyelids grew heavy as I painted this scene.  I kept my hand pressed lightly on his face and every once in a while he nodded knowingly as if to say, "Yes, that's right. That's right mom. You know. You know."

Tears slipped silently from my eyes, thankfully hidden from Oscar by the dim lighting.  I do know.  It is so simple and I can see it all so clearly.  Oscar and I dream the same dreams.

Tuesday, October 20, 2009

Counting Cookies

Have you ever noticed how pervasive food is in our culture? I never really paid attention until Oscar was born with PWS and its signature insatiable appetite.  Now I see food everywhere. There are the obvious things, like every birthday, soccer game, or five minute meeting requires food.  We encounter lollipops at the barber shop and orthodontist, tootsie rolls at the video store, mints at the dry cleaners.  Surprise halloween treats at my daughter's school at the beginning of October.  Ice cream for returning signed forms in 6th grade.  Random people on the street offer my kids cookies.  And finally the more subtle but still distracting references -- the seemingly innocuous cake in the chapter book, candy canes in the preschool workbook, endless tv commercials advertising humongous messy hamburgers. 

When Oscar was in preschool I did my best to remove the food references from his environment. We tried not to sing "Who stole the cookies from the cookie jar", for example.  He perseverated over anything involving food, especially those toy kitchens with the plastic delicacies. Rubbery chocolate chip cookies, pink-iced cakes, miniature fries...all so alluring to a preschooler with PWS who had never eaten any of those items. He was fascinated and couldn't concentrate on anything else when food (pretend or real) was nearby.  Teachers eventually replaced those play kitchens with pretend veterinarian offices and the like.

Oscar's still pretty focused on food, but it's not horrible. I do expect it to get worse. We have an elaborate "food security" plan that we follow.  In short, Oscar gets only the food we give him, when we give it to him.  It's the No Hope-No Doubt plan.  No hope for more. No doubt he will get what he needs. We follow a rough schedule of breakfast, snack, lunch, snack, dinner so he is always assured of his next meal.  We have locks on the cabinets and eventually the fridge will be locked too.  We kick him out of the kitchen when we are preparing food. It helps that our kitchen is tiny and there is no room for food-gazers.

Oscar's teacher asked me recently how we do it.  She knows we keep food out of the environment -- he's been at the school for 3+ years and boy do they get it.  No extra food, not even for birthdays or holidays.  It is so smooth at school that I hardly think about it.  But this week she asked if we also screen every book he reads.  He'd been reading one book at school that had a list of food in it, and every time she checked Oscar was reading that same page again, and again, and again. I was grateful she picked up on it, and even more grateful that she helped him smoothly transition to another book. Knowing how and when to interrupt his perseverative tendencies is a finely honed skill.

Last night's math homework gave me a good laugh though, and reminded me how impossible it is to police the food references. The food yes.  I absolutely police the food and make sure that Oscar is always in a food secure environment.  But oh those references...

Here are last night's word problems (photocopied from a national math program):

1.  If you have 7 cookies and give 3 to your friend how many do you have left?
2.  If you have two cookies and your sister has 18, how many do you need to have the same number of cookies as your sister?

EIGHTEEN COOKIES?  What's wrong with acorns, or pennies?

Oscar got the first problem without hesitation but got stuck on the second. He was trying to use the grid that was provided to solve the problem, but misunderstood, and ran out of space. 

He finally came up with an answer, an answer I loved:  ZERO cookies.  For a moment, I dared to imagine his reasoning:

I need zero more cookies, Mom, because if you gave me two then that is the right amount for me. It doesn't matter that Ruby has 18. 

Or, better yet:

Zero, Mom! You know cookies aren't healthy for my body!

Of course he didn't say either of those things.  He was just confused.  I considered letting it go... letting him keep that answer at ZERO, but he persevered and figured it out. Sixteen cookies. He would need 16 more cookies to have the same number as his sister.

I just laughed. Sometimes that is all you can do.

Saturday, October 17, 2009

No Wonder

Most of my day revolved around the storytelling festival at the kids' school. Well, technically, it is just Oscar's school now...with Abe in middle school and Ruby not yet in Kindergarten. But I see it as our school, our community, regardless of how many children are technically enrolled at any one time. 

I worked most of the day, picking up sushi for the event, and (wo)manning the food booth for three hours.  I always find it ironic when I end up on food duty given our family's strange relationship with food.  Not that I mind...if anything PWS has made me more obsessed with food as well.  Back in the shady parking lot made festive with colorful California Sycamore leaves scattered about, I drank two cups of decaf Peets with three sugars and an ample amount of half and half.  I chatted with fellow food workers and patrons.  I ate California rolls and fresh ginger cookies. There are definitely worse jobs.

At 3pm, when my shift was up, I settled into a folding chair in the warm sun to listen to Joel ben Izzy.  Oscar was up front with a friend, and Ruby was sitting with Paul.  I lucked out, sitting with just our friend who popped down for the event, and Abe.  I'd heard Joel ben Izzy's stories before, but live is always better so it was nice to relax and listen. 

By the 4pm break though I was tired and ready to go.  Abe was coughing and feeling a bit sick, and neither Ruby nor Oscar had had a nap so leaving made sense to me.  But Oscar apparently wanted to stay because when I told him the plan he started screaming and crying so loudly he startled everyone around him.  Even his 1st grade teacher who has seen her share of Oscar tantrums over the years looked surprised at the intensity. All I could do was take his hand and lead him out the gate.  The screaming continued all the way down the block, drawing stares from neighbors and passersby. At one point I picked him up and carried him to move our show along.  At the end of the block I handed him off to Paul because I still needed to shop for dinner.  He screamed the rest of the way to the car, and all the way home. When I finally arrived home 45 minutes later his eyes were still red.  He wanted to talk about it some more with me, so, of course, his screaming started again.

Instead of feeling compassion for this kid who thrives on routine, advance warning, and predictability (none of which I provided this afternoon), my frustration rose when he launched into his argument all over again.  And when Oscar is upset he fabricates -- so he embellished, exaggerated, and lied about the afternoon's events trying to convince me that we should have stayed to listen to the next storyteller.  I spoke calmly but inside I was steaming, impatient. I shuffled papers and sorted mail while he yelled at me.  I wouldn't look at him.  I just wanted him to stop.  I reminded him three times that if he had spoken calmly while we were at school we might have been able to work something out. He only screamed louder.

Eventually we insisted that he take a break in his room to calm his body down.  He did, and it worked. It always works.

But while he was resting and I was making guacamole for our chicken tacos, I realized how much energy this consumes, and how we suck it up and don't talk about it that much. We are so used to it, so much so that we wonder why we are tired and stretched and why nothing ever gets done. Okay maybe I am exaggerating a little...but when you add it all up -- the extra doctor appointments, meetings, food planning, tantrums and naps, well no wonder. NO WONDER.

Wednesday, October 14, 2009

More talk

We're just all about talking about disability here these days.

After dinner tonight, as Abe was empyting the dishwasher, he casually asked me if I knew what the chances were of someone being diagnosed with autism.

I knew it was high, but couldn't remember exactly. "One in 100?" I guessed. "One in one hundred fifty," he told me.

He saw a commercial on TV by Autism Speaks that caught his attention and was wowed by the high incidence. I wonder if he would have paid attention before we read Al Capone Does My Shirts?

Next he asked when we found out Oscar had PWS.  The answer rolls off my tongue easier than my own birthday. "We learned about PWS for the first time when Oscar was just five days old. The diagnosis was confirmed when he was two weeks."

"Hmm", Abe mused. "So he got it after he was born?"

"No, it happened in utero, when he was still inside me."

"So, you did it?"

"Well, kind of, but not really...." And then I launched into a discussion of how my egg had two chromosome 15s by accident and Paul's sperm only had one, as it should.  We talked about how the wrong chromosome 15 (Paul's) got kicked out, leaving Oscar with two maternal copies, and thus PWS.

I told Abe that Oscar would probably not have survived if one of the chromosome 15s hadn't kicked out. He would have had trisomy 15.

A shadow fell over his freckly face and he looked up at me from where he was chucking tupperware haphazardly into the cupboard.

"Wow," he said, "That would have been really sad. To not...have him."

We both got quiet then.  I felt my throat tighten and my eyes well up, again. Because Abe does love Oscar so much. And because I remember that when Oscar was really tiny I was looking for any way out of what I considered to be the horror of PWS.  I remember being pretty angry that the wrong chromosome kicked out...and also that any chromosome had kicked out at all.  Back then I was pretty sure a miscarriage would have been a hell of a lot better than PWS.


Later as I was putting Oscar to bed I read him some math problems that I made up for him today because he had to leave school early and didn't get his homework sheets.  I called it "Zookeeper Math" and there were four word problems on the sheet. We never got around to actually doing them, but I knew he would enjoy hearing them, because, you know, he's going to be a zookeeper when he grows up.

This one was his favorite:

Zookeeper Fred needs to feed the giraffes. He brings 7 acacia tree branches to the giraffe exhibit. But when he gets there he sees that there are 12 giraffes in that exhibit. Silly Fred!!! How many more acacia tree branches does he need to go get?

By the time I'd read all four word problems, Oscar was giggling so hard I thought he was going to have a cataplexy incident.  He hasn't had one in a long time...and they don't worry me like they did when we thought they were seizures. These days they are just a sign that he is really enjoying a joke or a story.

I teased him them. "You love your Mama, don't you Oscar? You love your Mama!!"

Oscar just kept laughing, unable to stop, while I pulled the covers up higher and dotted kisses all over his cheeks and forehead.

Siblings


Abe and I finished Al Capone Does My Shirts last night. A great book with a great ending.  We had a good discussion afterwards too, the kind that had both me and Abe in tears. I spent a good while writing about it here last night, but it's just not appropriate for my blog without Abe's permission. I can say I learned about the depths of Abe's love for and commitment to Oscar....and about how moving onto middle school where no one knows Oscar isn't as straightforward as I would have thought.  He is thinking about his own boundaries and requirements for new friendships.  There was a certain comfort for Abe that came from sharing a small elementary school with Oscar, where everyone knew.  So, even though Oscar isn't at the same school anymore, he's there affecting the way Abe looks at his world.  Of course. I just didn't get it before.

And then today, on the way up the hill to her preschool Ruby started talking about Oscar too. Abe was about the same age when his questions about Oscar and disability really ramped up.  Ruby is annoyed, frustrated, and perhaps even grieving a little.  Having been down this road with Abe, who was angry and sad at age 5, I'm remembering that siblings are processing the disability at their age appropriate level and that, in a way, their grieving is more prolonged because they continue to grieve as their understanding matures. We adults can get the whole picture faster, but little kids grow into their understanding.  For now, Ruby is grieving the brother that doesn't "play farm" with her the way she would like, the brother who talks funny and chews with his lips open.  All I can do is listen, and maybe gently remind her that Oscar is trying, even when it seems like he isn't because everything is just so much harder for him.

Mostly, I want her to know she can feel anything, say anything to me.  Over the years, with a lot of hard work, Abe and I have developed great communication and trust...but Roo is a different kid.  This morning I definitely had that feeling of "here we go again..." but that's not really true. I don't know what Ruby's path to understanding Oscar and PWS will look like.  All I can do is support her along the way.

And of course, I'm looking forward to getting to read Al Capone Does My Shirts with her in six years or so.

Tuesday, October 13, 2009

Two Books

I plowed through Joan Ryan's The Water Giver this weekend in Tahoe, reading in the car, curled up in the bean bag by Abe's fire, on the deck in the cool fall air, and in bed late into the night.  It's the story of a mom getting a second chance at being a mother when her teenage son suffers a traumatic brain injury.  I keep thinking Joan Ryan is being just a little too tough on herself regarding how she parented her son before his injury.  I see myself in her parenting style both before and after the accident, so maybe I just need the validation that as imperfect as I am, I am doing the best I can.  To me, it seems like she was! Anyway, it's a beautifully written book and I just couldn't put it down. It got me thinking again about how I might write my story of becoming Oscar's mom. I have so much trouble getting started, always, because I don't know where I am going.  I've started now, every so barely, and I just need to keep on writing without having it all figured out. I'm hoping that will get clearer as I write.

I'm in the middle of my second writing class...another wonderful experience -- this time with Susan Ito. Once again there is more to read and write than I can manage, but my faithful interest barometer is telling me that this is what I want to be doing, even if there are so many distractions, always, in my life. I'm trying to learn to be patient with myself but I'm also going to try to get back to my Oscar story for my next workshop. I sidestepped that a bit and wrote about Ruby for my first workshop last week. I was so unhappy with that piece, to the point of run/walking for a few miles unable to think about anything but paper shredders.  Interestingly I cared less about sending it out to the group (a super encouraging group of writers led by Susan) than I did about how I felt about it, how it didn't say, yet, what I wanted it to say, how I wanted to say it.  In the end, though, with the great suggestions I got, I think I might go back to it eventually, or fold it in to something bigger about Oscar.  In other words, I survived.

The other great book I am reading is a kid's book -- Al Capone Does My Shirts, by Gennifer Choldenko.  I am reading it aloud to Abe.  It's been sitting on his shelf for three years now, ever since my friend who also has a child with PWS got it for her older daughter.  He wasn't ready for it then, but is now and keeps reading ahead of me.  He listens again while I read aloud the sections he's already read, so I think he's enjoying it as much as I am.  The main character, Moose, is a 12 year old boy who lives on Alcratraz in 1935 with his parents and his sister Natalie, who these days would be diagnosed with autism. It's intense at times -- Moose's mom is set on trying everything she can to help Natalie, so their world revolves around her needs.  Moose is forced to give up his own interests and often ends up in charge of Natalie while his Dad works two jobs on Alcatraz and his mom teaches piano in San Francisco.  Moose's love for and shame about his sister are authentically written and I am sure Abe can see himself in Moose.  (Certainly helps that Moose is also a baseball fanatic!) Moose shoulders way more burden for his sister than I ever intend for Abe...I'm trying to feel Abe out about this, but I think he is still processing. I wonder if there is a guide that accompanies this book, or suggestions for dialogue somewhere. Usually Abe and I can have some frank discussions about disability and siblings...my rule has always been that he can say anything to me, but just not in front of Oscar.  I hope this is a book we can go back to, if he's not ready yet, and talk about later.  In any case, I like where I see this book going in terms of an emerging acceptance and support of Natalie by even this mostly unlikely community on Alcratraz.

Sunday, October 11, 2009

Back Again

I've been really grumpy lately, and it's been getting in the way of posting. Kinda sucks that I named my blog "Finding Joy in Simple Things". Doesn't leave much room for complaining. 

What has been making me so grumpy? I ask myself that 100 times a day, and I still don't really know. I think it has something to do with having so many things to do and not feeling like I am doing any of them well, or efficiently.  If I was more efficient I would have more time for writing. If I was more efficient I would be able to focus on the kids or Paul when I am with them. I wouldn't have piles of papers on my desk, my chair, my dresser.  The shower leak would be fixed, and the kitchen wouldn't still be pink and green.  My attention would be less divided and I would be more present. My house would be organized, my files in order, the bills paid. Instead I am perpetually distracted, and none of those things are ever achieved.

We are in Tahoe now...the lake ("aqua blue" according to Oscar) is just visible from the cabin we rented this weekend. Tall conifers boasting humongous pine cones surround us, and the air is cleaner, fresher.  Yesterday we managed a 5 mile hike with all 3 kids. Quite a feat, made possible only by Paul's willingness to carry Ruby on his shoulders a good part of the time.  Oscar was a trouper, and Abe probably could have done the whole thing in half the time, but he was patient and encouraging of his siblings.

And yet, I was still grumpy. I cannot easily step away from my responsibilities even 3 hours from home. Today, during nap time, I spent at least an hour replying to emails from Oscar's therapists about events of the past week. We have a great team again this year, but transitions are always hard. Oscar's new OT is energetic and full of ideas, but Oscar keeps having huge tantrums during his sessions with her. I want her to know it is not her fault. I want to give her some strategies. It was important to write that email.

I also got an email from Oscar's behavior specialist.  She is the best in the school district, and I'm still not quite sure how we got her because these days she only does trainings and has only a small handful of children that she follows directly. Oscar is one of those few kids. She's been working with us since Kindergarten.  I interviewed her before I even consented to her working on Oscar's case. Even in K I knew that we could waste a lot of time with someone who was not adequately trained. This woman far exceeded my greatest hopes for a behaviorist.  She watched the full five hours of PWS videos I gave her before she even met Oscar, and came to the table with a great understanding of the challenges PWS presents.  She is about to go on maternity leave and has been observing O in the classroom, talking to his aides and teachers, and making suggestions to tide us over until she returns.  Usually I would be there when she walked out of the classroom after an observation to catch the debriefing. Usually we would strategize together. But this time I forgot she was even coming until the day after.   Sure we were celebrating Ruby's 5th birthday at school and packing for Tahoe, but I FORGOT.

So I sent these emails off today, Sunday, while in Tahoe, and within an hour had heard back from Oscar's aide, his OT and the behavior specialist.  It was really pretty amazing.  I know I am lucky, I know Oscar is lucky, to have such a dedicated team.  More dedicated than me sometimes.  I felt the weight lift just a bit, and I forgave myself for not always being on it. Today I was, and that is good.

The weight lifted a tiny bit more when Paul made us both a cocktail and together with the kids we watched our old photos in a random slideshow on my new computer.  It was a miracle to me that the computer didn't crash, as the old one would have.  It was a miracle that the kids weren't bickering.  We were all together in this beautful spot, enjoying being together.  For once, I was "in the moment" enjoying what IS, rather than thinking about what should or would or could be.

So, in the end, I am reporting on the joy in simple things, like an excellent team and good cheese, olives and a derby while watching old pictures, even ones of Oscar as a baby, and feeling happy, connected, and grateful for those near me and also those who work so hard to make Oscar's life so much smoother.

And with that I am hoping to be here more regularly again, grumpy or not.  Because you know, even when I am really really grumpy I still like to write. Beware!

Sunday, September 20, 2009

BIG news!

I'm in the middle of about 3 posts. So little time with Paul in Brazil these last two weeks and me holding down the fort (and attending all the back to school events) alone. I'll get to finishing those stories soon, but couldn't let this day pass without announcing the big news:

Oscar learned to ride a bike today!

I was in the middle of an email to a mom of an infant with PWS (trying to remember, ironically, when it was that Oscar could finally hold up his head) when I got the phone call. Paul, who arrived home yesterday, had taken Oscar and Ruby to the park to give me some time to catch up on a few things, and apparently they took bikes. It's something Paul tries with Oscar every six months or so, but as far as I knew he'd never gotten close. His balance reactions were slow, his motor planning a bit off. I'd pretty much given up on it ever happening without some huge intervention. In fact, I've been keeping an eye out for another trail-a-bike so we could do family bike rides again. I figured we'd get a tandem some day. Tandems are cool. I was totally ok with him never riding a 2 wheeler bike.

So the call came as a surprise. I threw on my flip flops, hopped in the car and raced to the park to see for myself. And sure enough, he WAS riding a bike. Look!


video

I dissolved into a puddle of hysterical laughter and tears. Paul squatted down in front of me and wrapped his arms around me. His eyes welled up too.

So great are the joys. So high are the highs.

Sunday, September 13, 2009

11 years

Eleven years ago today I heaved my swollen body out of our green Ford Escort wagon and waddled up Solano Avenue with Paul and the crowd, stopping to listen to musicians, sampling the spicy fare at ethnic food stands and browsing the booths of local artisans. The 2nd Sunday in September is always the date of the Solano Stroll, a street fair that extends 1.2 miles and spans two cities. On that Sunday in 1998, I was 9+ months pregnant, and three days past my due date. Stimulated by the long walk and all that spicy food, Abraham decided to start his campaign that night and finally arrived 20 hours later on the evening of September 14th.

Now, 11 years later, I watched from the window as he left the house armed with just $10 and his cell phone, off to meet a friend at the Stroll. He was reluctant to leave the house at first...dragging a bit from our already busy day. But once he and his friend agreed by phone on a meeting place, his pace and mood picked up. I could see his energy change from my post at the window.

Eleven years later, then, I am still pushing him out, though with less fanfare and pain. He walks or bikes to school now, meets up with friends in public places, and shops for groceries at our local market. Sometimes he needs a nudge toward independence, but mostly he's ready for this freedom and is responsible enough to have earned it.

And while I'm helping him gain independence, I'm also holding him close, aware that he's growing up quickly. After the "little kids" go to bed, we've fallen into the fragile habit of a nightly chat. We sit companionably in the family room....me with my computer, he with his book. I'm always poised for conversation but don't want to appear overly eager so I wait for him to initiate.

He talks mostly about middle school. His transition to the bigger more chaotic environment has been stunning. New friends, new sports, new confidence and calm. I've trained myself to relax noncommittally into the cushions whenever his enthusiasm peaks or frustration rears and listen calmly and openly. I'm trying to say "hmmm" and "oh" a lot, even when I want to say "WHAT!?" or "WOW!" because I've heard that "hmms" and "ohs" are more likely to earn you a seat on your child's "advisory board".

I'm relishing his maturity and openness and wondering how long he'll let me stay in this inner circle of his thoughts.

Hopefully another eleven years....at least!

Thursday, September 10, 2009

Transitions

I've been thinking a lot about transitions lately. Seems everyone is posting about them in some way or another and I too am struggling with my own end-of-summer back-to-school blues. I'm actually excited for school to start (two down, one to go) and to finally get some time to think, exercise, organize, write. Instead of elation, though, I feel burdened. Three schools worth of forms and meetings, a computer that crashes twice a day, a tweaked shoulder, a needy preschooler, a dripping faucet, a half-dead frog (must buy worms tomorrow!), a sad weedy garden, and oh, a husband in Brazil for two weeks.

Then there are all the doctors' appointments that I shelved for the summer and will have to schedule for this fall. Two endocrinologists, three pediatricians, one orthopedic surgeon (or maybe two), a periodontist, a dentist, a radiologist, a psychiatrist, an ophthalmologist and a nephrologist.

There's also another transition going on -- one of hormonal changes, disrupted digestive systems, acne, thinning hair and weight gain. I keep thinking I am too young (or too old?) for this, but we all know what chronic stress does to the body.

None of it is earth-shattering. Little of it is new. But it's dragging on me like bowling balls in my pockets.

My sister-in-law is being ordained a Priest in the Episcopal Church in NYC this weekend. We were there in March for her ordination to Deacon, but are sadly missing this weekend's momentous event. I called her tonight, to wish her well, and to get the scoop on the final preparations. She's preparing her remarks for the post-ceremony brunch and mentioned that she's going to end with a prayer about transitions.

I'm going to have her send me that prayer. And then I'll post it here.

Tuesday, September 1, 2009

Middle School

Abie's off to middle school tomorrow. After 5 years in a really small elementary school, he's moving on to the largest public middle school in Berkeley.

Three hundred 6th graders. Ten 6th grade classrooms.

Back in March when we were in the midst of the big school decision I wasn't so sure this school was the right fit. I thought it was too big and way too hectic. Even the kids were huge. I was worried about the large classes, the standards pushing and the lack of art and music. When I observed lunch recess it seemed to me that the kids were all voluntarily divided by racial background and that really bothered me.

But, when Abe observed recess he said "Mom, I like that its big. I like that there are lots of different groups of kids. It looks like there are lots of ways to be cool here and that makes me feel comfortable."

I liked his viewpoint. I loved that he was so observant and knew what he needed for this next step.

That was months ago and the stress of the decision has long since passed. The more I hear about this school the better it sounds. Terrific programs, awesome teachers, great kids. I am thrilled that he can walk or bike there, and that he knows kids from baseball and from around town who are going. It's the home of the famous Alice Waters' Edible Schoolyard. Abe's read up about the garden, tried some of the recipes, and can't wait to work in that gorgeous school kitchen. We also just found out he can play his electric guitar in the 6th grade band.

It all sounds great....except I feel like we're sending him off to college. Between before-school band, and after-school sports, I feel like I'll hardly ever see him again. Plus with a nearly 9 year old quirky brother that still naps and a little sister who could be Dennis the Menace's twin, I doubt he'll be begging to bring kids home. So, these last few days, I keep filling him up with advice just in case he really doesn't come home again. Strangely, he seems to be listening.

Things like, "So, Abe, if someone says hi, remember to smile and say hi back...If you mumble or don't look up, kids will think you don't want to be friends."

and

"Find your baseball friends and hang out with them. They'll probably be with other kids from their elementary schools, but don't let that stop you. I'm sure those kids are nice too."

I sound like an idiot. What do I know about the middle school social scene? I spent those years peering out from behind greasy bangs, trying to figure out what was so cool about Gloria Vanderbilt jeans. (It was the stitching, and at my school it had to be gold). My brand new Sears denim skirt did not cut it.

My nickname during those years? Scary Mary. Seriously.

Yea, I should probably keep my advice to myself. He's going to be just fine.

Saturday, August 29, 2009

Shining

When Oscar was first born (and for many years afterward), vacations, especially those to the east coast to visit friends and family, were very difficult for me. I often felt like there was a spotlight on Oscar, on Prader-Willi syndrome, and on us. I know I often created this spotlight myself with all my blabbering, but I felt like it was necessary to explain PWS, our food routines, Oscar's sleepiness, his lack of affect, his various delays, his behaviors. I got tired of hearing my voice drone on, but kept talking anyway, and was exhausted by vacation's end. And since we only saw some of these relatives one or twice a year I also wanted to show Oscar off....and, yes, I admit it, I wanted him to shine.

The thing is: Oscar does not shine on vacation. Countless transitions, disrupted sleep, uncertainty about the schedule and food often combine to make for an even more zoned out, inflexible, anxious, perseverative, and tantrumming boy. He ends up spending time alone, or with the adults because it is just too hard to keep up socially and physically with the other kids. Usually I start counting the days till we get home and back to our "normal" only a few days after we've arrived, because seeing him in that exacerbated PWS state is just so painful.

As we packed for this big trip east, I reminded myself of these challenges...and was finally at peace with who Oscar usually is on vacation. I decided to let it go...to accept what comes. That it's ok if he falls asleep at odd hours, is sluggish, has loud stomping tantrums, opts out of activities, or doesn't play with the other kids. At home he is working hard all the time. He probably needs a vacation too, I thought. A vacation from trying to keep it together all the time.

But that's not how this vacation turned out. Sure, all of the usual things still happened. But they happened less and Oscar was just a bit more in the middle of things. He tried new activities, he played with the other kids more of the time. He was funny, perceptive, kind and articulate.

In Sea Isle, he "disappeared" soon after we arrived, causing me a moment of panic. I found him out riding the surrey around the block with Abe, Ruby and their cousins. This was our first clue that this vacation might be different.

He spent hours making colorful star and circle and square perler bead creations at the big kitchen table with all of the other kids. He shared beads (except with Ruby, but she eggs him on so that doesn't count), and didn't freak out when his design got bumped and the beads scattered.

He insisted on going running with Paul, and lasted a mile in the 90 degree weather. He went swimming in the OCEAN and learned to jump over the smaller waves, and duck under the big ones. And then he rode a few gentle baby waves back to shore. He scootered on the boardwalk with the other kids, enthusiastic and energetic the whole time. As we struggled to follow along in our ill-chosen flip flops, Paul puffed in my direction, "He's actually keeping up!"

In fact, all vacation long, Paul and I just kept looking at each other, wondering if we were fabricating this change. Was our hope and love for Oscar clouding our perception? Did letting go of expectations allow us to see Oscar in a different light? Maybe, except everyone else noticed too. And he kept it up when we headed north to Connecticut.

There, instead of waking before dawn and slipping into bed with his grandparents, he slept later (yes I fiddled with the clock again) and then read till the rest of us were awake. Or played Wii with Abe. For a couple of days I left out math or phonics workbook pages for him to complete before playing Wii....and he DID.

He spent two days with his cousin Audrey, playing nicely with her, when I went to New Hampshire. Apparently they talked and talked, about animals, of course.

He disappeared after dinner one night to play Sorry with the other kids in the loft. Again, I was surprised to go looking and find him playing in a group and not alone. On a different day, when the rest of the kids wanted to play croquet, he asked me a few questions about the game and then said, unprompted, "Well, I think I can stay in the game. I want to play."

At the local amusement park, he asked to go on rides that I never thought he'd want to try, like a roller coaster, or flying tea cups. "Who IS this kid?", I kept thinking. (And, less enthusiastically "am I going to have to start liking amusement parks?")


He was stretching himself in so many ways that I decided that I was going to "help" him swim in the lake in Connecticut. He loves the pool, but there's something about the lake -- not being able to see through the water perhaps -- that was making him resistant. So one day, towards the end of our vacation, I zipped him into his life jacket and told him he could jump or I could throw him in. His choice. He wasn't happy, but I kept it light, and he was laughing despite himself. I picked him up, all skin and bones, and gently lowered him. When he got back up on the dock, I tossed him back in. And then I let him push me in, which was, of course, hilarious. He was a little mad at being coerced, but he got back into the lake voluntarily and swam around, even venturing away from the dock, with the other kids, to climb on Grandpa in the inflatable tube. When it was time to dry off, he asked if we could go swimming again the next day. (Of course it stormed the next day)

And on our last day, Abe, with his special sibling connection, somehow convinced him to try tubing. Oscar sat in the front of the tube with Abe right behind. We attached their rope to the motor boat and started off slowly, very slowly. Every couple of minutes Abe would give me the thumbs up sign to indicate that Oscar wanted to go faster. His grin grew wider with each increase in the boat's speed. My own cheeks were sore from smiling so much that I had to take a break and think of sad things to rest my face muscles.
That night, I asked everyone to share their favorite memory of this vacation. Abe shared that he loved learning how to water ski. Audrey shared that she liked watching Abe ski, which was very sweet. Oscar usually passes, especially in larger groups like this. But he piped right up with, "Well I have three great memories of this vacation. I liked going to Action Wildlife (a little zoo). I liked when all the other relatives came to visit, and I really liked going tubing." While no one dropped their margarita, we all noticed. (Ok, I was stunned.)

I don't know why Oscar was so freed up to enjoy himself and to try new things this vacation. But that's how he seemed -- free, unencumbered, and happy. He shone from the inside out.

And somehow this all makes me a little sad. It is only in times like these that I wonder who Oscar would be if he didn't have PWS. I know that Oscar has been shaped and made stronger by PWS: his perseverance and kindness most certainly are a result. And I know that I appreciate his every success and milestone a whole lot more because he has PWS and works so hard for everything. But still, I wonder.

I wonder too how I will always provide him with interesting opportunities within the confines of the disorder. Will I always be able to frame and scaffold so that he feels good about who is and what he can do?

Will he be happy just volunteering at a zoo, and not being a "real" zookeeper?
Will he accept that he can't ever be in charge of his own food?
Or live independently?
Or drive a car?
Or have children?

I try to remember to just think about today, because during those first years after his diagnosis when everything about his future was clouded with uncertainty and fear, it never occurred to me that he would be the happy, confident, capable kid he has become.

It never occurred to me that I would care less about him shining to impress others and reassure me, and care only about his lovely spirit shining through the encumbrances so that he can enjoy his life.

Thursday, August 20, 2009

Interruption


I'm interrupting my vacation silence because --

It occurred to me last night, as Ruby, Abe and I were driving south along I-91 in Vermont, that there is no way I could have done that two years ago: I could never have taken two kids from northwestern Connecticut to Vermont for two days, and back, by myself. I could never have left at dusk with a 3 hour drive ahead with conflicting navigational instructions, by myself. I certainly could never have followed those curvy Connecticut roads, names changing every 2 miles or so, in the dark, by myself.

Two years ago I was suffering from debilitating anxiety, provoked by the stresses of having a child with PWS, a demanding toddler, and some unexplained but persistent dizziness. No task was small. A trip to the pool was overwhelming, as was making dinner, or even a night out with friends.

So last night, as the sun was setting and a gentle summer rain just starting, I noticed that I felt hopeful and strong, not anxious, as I set out from my friends' verdant and peaceful Vermont home, towards Connecticut where I'd left Oscar with my inlaws just the day before. It was an easy trip and we were treated to a near-full rainbow and views of rolling hills and leafy trees painted in the deepest summer greens. We sang along to the Weepies and the Indigo Girls and the kids each took a nap. I joked with Abe that 18 years ago when I used to make this trip routinely to visit Paul in graduate school I didn't have mapquest directions, let alone a GPS or an iPhone. And yet, last night, I was using all three to help me navigate the last hour of dark and twisty backroads. I chose my route after consulting all three sources because it was fun and staved off fatigue.

It was a bit of an experiment for me to stay east while Paul returned to Berkeley for work. (Again, no way I would have volunteered to make the cross country flight solo with three kids, 2 years ago). The experiment is going well. Abe and Ruby loved our side trip north and it was very satisfying to me to share Dartmouth with them. The campus is so different from anything Abe has seen before -- so small, so contained, and so beautiful. We played frisbee on the green -- that large rectangle of grass crisscrossed by gravel paths in the center of campus where Paul and I played many an afternoon during our sophomore summer. We visited my dorm, and then Paul's and bought t-shirts at the co-op.

At my friends B and D's house, Abe and Ruby got to experience rural life. B and D have created a wonderful retreat-like home on 26 acres of Vermont land -- a spacious, airy, and light-filled house perched above their outdoor ice rink and, farther down the hill, their pond. My two kids romped and wrestled on the grassy lawn with their three girls with no worries of cars or other urban menaces. They raced off to the garden to pick bright orange carrots and sweet blueberries. We donned swimsuits and made the short trek down to the pond with its soft sandy shore. Ruby delighted in the newts and frogs they caught while Abe kept up a never-ending game of chase with an ever-changing fraction of the remaining girls.

This side trip is just a small segment of our vacation, sandwiched between time at the Jersey shore with my family and time at the lake in Connecticut with Paul's. And yet it stands out to me because the last time I was back east in the summer I was just starting to recover from those six disorienting and often disabling months of dizziness and anxiety. Last time I was here I was still fragile, and cautious. B once noted that I use the places I've lived to keep track of my life. Having moved so much as a child, place became a natural way to remember the small as well as significant events in my life. Now, living in one location as I have for so many years (14 years in Berkeley, 8 years in this house), it is harder to keep track of what happened when. Being east in the summer again has triggered this memory of anxious times and I remembered last night, that two years ago, when I was last here, I would not have been driving down I-91 with two kids in the dark and rain, alone.

And, even if I had, I would not have been singing loudly and enjoying the beauty of my surroundings and my children like I was last night.

Wednesday, August 5, 2009

5 Hours

I had 5 hours to myself today. It was rather remarkable, all that time, with no one whining or perseverating or questioning my every move. I was tempted to feel guilty but I shoved those thoughts aside and tried to just enjoy. Of course, I had many errands to do -- photocopies, drop-offs, returns, shopping, etc, in preparation for our trip East, but I got to do it all alone.

We're leaving Friday for a week in Sea Isle City NJ, where my brother and I will amicably argue over the air conditioning (I'm a windows open, ocean breezes gal, he's a full blast fake air guy), but my lovely sister in law is letting us have the better bedroom so I'm going to try to suck it up this year. We'll eat lots of shellfish, but I won't try clamming -- the bay swallowed my left Keen 3 years ago and Paul peed his pants laughing at me and my muck-covered legs. We'll spend long days at the beach playing in the waves, building sand castles, and sitting under umbrellas with books. I already feel the pull of the sea and it's salty crashing waves.

After Sea Isle, we'll head to CT to spend time with Paul's family on Woodridge Lake. The cool(er) mornings are perfect for long walks and thanks to excellent planning on the part of Paul's sister, I will have some time to myself, to exercise, read, and perhaps even write while Ruby and her beloved big cousin keep two babysitters on their toes with their antics. Paul will only spend the weekend with us before returning to CA for work. I'll stay on with the kids, and take a little trip up to NH to visit my dear college friend and her family. I'm excited for Ruby to romp with B's three girls, one exactly her age. And I'm especially excited to introduce Abe to my alma mater. I'm not sure why -- I don't want him to go there...I just want to share it with him..show him where Paul and I met, where we went to college.

There's lots of packing to do, and I don't seem to be able to just toss a bunch of shirts and shorts/skorts into a bag and be done with it. I have to try it all on and see if it still fits. This past year of little exercise and too much good food hasn't helped. And I don't wear these warm weather clothes so often in Berkeley so I practically have to dust them off. But I will push forward and get the bulk done tonight as tomorrow I'm going to be raising a glass of champagne with my wonderful friend W to celebrate her birthday and her new house and then racing off to hear Vicki Forman read from her newly released memoir This Lovely Life. I can't wait! And now that I think about it, that means I'll have another 5 or so hours sans enfants tomorrow too!

Tuesday, August 4, 2009

Enough?

Oscar and I raided the "zoo" section of the library today. I admit I was annoyed when he said he wanted to check out zoo books. He says that every time we go to the library. I snapped at him and reminded him that he's already read all of the zoo books a zillion times. He would not budge, so I caved, and searched "zoo" on the library computer. You'd think I'd have the call number memorized by now.

I'm not sure if we discovered a new stash or what, but we'd only seen two of these books before. There were some great "new" ones sitting on the shelf, including one called "Dear Bronx Zoo" featuring answers to kids' most asked questions about the Bronx Zoo. Perfect for Oscar, or what?

So, as he stood there with arms outstretched, I piled them on. Eight, ten, I'm not sure...a LOT of books, until he said the most remarkable thing.

"Enough Mom! I think that's enough!"


Since when has Oscar ever had enough of anything, especially anything to do with animals or zoos?!!

Friday, July 31, 2009

Time

Oscar is an early riser, by my standards anyway. It's all part of the disability package. For years we've been trying to teach him to stay in bed till 7am. But still we find evidence of stealthy early awakenings -- books or toys scattered on the floor of the cramped closet or a light on in an odd place. Sometimes we hear him, or worse, Abe yelling at him to be quiet, as early as 5am.

Now that he is starting to learn how to tell time, things are getting a little better. But it's summer, and 7am is too early for me when I am not nodding off till past 1am. Last week, Oscar begged me to put a clock in his room so he didn't have to get out of bed to look at the clock in the kitchen. I obliged, but I tried to trick him by setting it back a 1/2 hour, thinking I could catch some extra sleep.

I should have known better. Tonight as I putting Oscar to bed he told me that he didn't like that clock I'd placed on his bedside shelf. When I asked why he said that that clock was "slow". Although he was right, I was surprised he used such accurate words to describe the clock -- his accuracy didn't fit with his tenuous understanding of the concept of time. Curious, I asked what he meant by "slow".

"Well, when this one says 6:20 the kitchen one says ten minutes to 7." He's right. And I'm impressed.

And then he says, "Yeah, it's slow, Mom. It just takes too long get to 7:00 so I only use it when I want to sleep in. I use the kitchen clock when I'm ready to wake up."

So much for trying to throw this kid off. Still, it's clear he doesn't really "get" time, and my shenanigans certainly haven't helped. Just goes to show how desperate I am for sleep! Maybe I should go to bed earlier...

Sunday, July 26, 2009

Baseball Fever


It would be perfectly understandable, after five baseball tournaments and never progressing past the semi-finals, if Abe started to get discouraged. He's been playing baseball nonstop since February, first with his regular league team, and then this summer with All Stars, and now with his tournament team, the Thunder. We're at tournaments most weekends, and some weekdays too. And when they don't have games, they're practicing, up to three times a week. More for Abe if you count the two weeks of baseball camp and a couple of extra private sessions. They've won games, many games, but they've never won it all. Despite all the hard work, the excellent coaching, and the deep pool of talent, they seem to always lose in the semis.

Today, though, I witnessed something really hopeful, something way more important than getting to the finals. Something I'd been waiting to see. The Thunder came back from being down 1-3 to tie the game and then win 4-3 with a walk-off single in the bottom of the sixth. I was so proud of them all, and their perseverance. It would be so easy at age 10 or 11 to get discouraged when you're down by a few runs. But today they stuck with it, battled hard, and won the game that deservedly landed them in the semis. I jumped up and down on the metal bleachers, screaming "I'm so proud of you THUNDER! Way to stick with it". I'm pretty sure Abe was too busy celebrating with his team to notice his kooky mom. At least I hope.

Abe didn't hit well this weekend. I didn't keep close track, but he did of course. "Four pop-ups today, Mom" he said as we got in the car. "All I needed was a ground-out (his specialty) to bring in a run, but I couldn't even do that." I reminded him that last week he was striking out a lot and that he didn't strike out once this weekend. He battled up there, forcing the pitchers to throw him a lot of pitches. Sometimes runners even advanced. And he really excelled at catcher in his first full-running tournament. But he's not satisfied.

Let me be clear --while he's not happy about his hitting, he's neither tired nor discouraged. If anything he's even more motivated. His first words, upon leaving the dugout after the 9-1 loss in the semis, were "Can we please go to the batting cages? I really want to work on my hitting." He was enthusiastic, almost cheerful, despite the loss not 10 minutes earlier.

And tonight, after returning from a marathon wii baseball tournament with friends, he walked in the front door and immediately asked Paul to throw him some wiffles in the backyard.

He's in a great mood, full from all the baseball (the wins and the losses) and fun times with great teammates. No, he's not discouraged...he just wants to get back out there and play.

Even as I type, he's standing in the living room throwing phantom pitches, and demonstrating the full concept of a "balk" to Paul. And I just heard them make a plan to hit the batting cages at 7:30am tomorrow. Abe's not an early riser, so this is serious.

I was talking with another parent this week about how baseball is really a metaphor for life. Whether they win or they lose, these kids are learning so much about working hard at something they love, about learning from and then letting go of mistakes, about supporting a teammate in a slump or in a streak, and about respect for their coaches, the umps and their opponents. I never played on a team as a kid, but I think if I had I wouldn't have been so afraid to mess up every once in a while. I might have learned to persevere even if I wasn't particularly good, just because I loved it. Abe is good, but what matters even more to me is that he loves this game and he keeps asking for more opportunities to play.

I'm afraid to break it to him that he starts basketball camp tomorrow.

Friday, July 17, 2009

Ice Cream

I caved this year and signed Oscar and Ruby up for the all consuming summer-sucking swim team. Well, sort of. Their level is called minis, and it's for kids age 6 and under who can't yet swim across the pool. So it's not really swim team, but swim lessons. Oscar and Ruby need to swim -- it's so good for their muscle strength and not at all taxing on their compromised bones.

It's fine. It would be a lot better if it didn't cost a million dollars. But since I already paid the million, we go. Every day we arrive just in time for the 12:30 call for MINI STINGERS! and trudge over to the spot on the far side of the pool where kids are assigned to their coach of the day. After I pry Ruby off my leg and help Oscar remove his white socks (pulled knee high of course) and blue crocs, it's just under a 1/2 hour of turn-taking with 3 other kids and a kickboard, endlessly practicing side breathing. My kids are nowhere close to side breathing, but they just keep at it, day after day.

At the end of the 1/2 hour all the minis come together for a quick song and a cheer. Last Friday, though, was promotion day. Each kid's name and swim level (1-10) was announced and, as they exited the pool, each was handed a lollipop as a reward. A frackin' lollipop!!! This week's reward for swimming a lap --licorice! I actually thought swim team would be a food-safe sport. But, apparently they use candy as motivators at the pool, handing it to the kids as they climb out. It's bad enough that every day, as we leave the pool, we have to push through a long line of shivering wet kids grasping soggy dollar bills and talking about which crappy "ice cream" they're going to get at the snack shack.

Oscar always notices the artificially colored frozen sugar on a stick and is distracted. He stops walking and stares, at the kid, at the confection, back to the kid. He'll sometimes say "We're not having that, right Mom?". "Nope", I answer. "That's not healthy for our bodies". I know that at least half the time I say it comes out as if we are somehow better. We make better choices, we take better care of our bodies, or, we're too good for that. Oscar buys the propaganda. He can get behind any slogan or cause. But we're not better. We just can't.

Ruby always whines.

"Mammmmmaaaa, why can't we have some?" she asked today referring to the melting rainbow popsicle in the hands of a chubby-legged three year old.

Today was a particularly hot day and the kids swam for two hours straight. Ruby, known for her lack of exertion in all things physically straining, was purple-lipped and wrinkled when I finally dragged her out, kicking and screaming. (Literally. I have witnesses.) She swam and swam, from me to my friend to my friend's daughter and back. I tossed her far and she swam back. She learned to do a dolphin kick with her sweet little arms tucked behind her back. She got tons of exercise today and loved every second. And so did Oscar.

So I really wanted to say yes, just this once, to a snack shack indulgence. But I know better. Ruby gets carsick
before she gets in the car because she remembers that I once gave her gum under those circumstances. She knows that the school district special ed office has a fun water cooler in the copy room and starts whining about how thirsty she is as soon as we park outside the building. She's a savvy one. If I give into one of these treats today, I'll hear about it the rest of the summer.

It is times like these that I especially despise Oscar's diagnosis Prader-Willi syndrome and whatever is causing Ruby's constant hunger and slow metabolism. I feel my anxiety level creep up, right alongside my self doubt. I get snippy and frustrated and resentful of all those other families with their sticky-fingered kids.

I ruminated all through naptime and finally hatched another plan...a plan that did not involve the pool or any place we frequent on a daily basis. A plan that was not responding to the whining or questions, but my own need, once in a while, to not feel like a mean old ogre.

So I told the kids after dinner that we were going out for ice cream. We do this about once a year, never for any good reason (lest that good reason be an excuse for future outings) and today seemed like the day. Because what is summer without an ice cream cone?


(When I whispered conspiratorially to the ice cream scooper to only give 1/2 scoop to Oscar and Ruby, he bellowed, "I can make it smaller, but it still costs the same!")

Thursday, July 16, 2009

Bling

I am a Hopeful Parent.
But I cannot get that Hopeful Parent bling onto my blog.
I've cut and pasted and cut and pasted and pasted and pasted.
Nothing nothing nothing happens.
Then, it shows up in the wrong place.
I cut and paste again -- the code and bling both vanish.
I'm getting frustrated
I want that damn blog bling.

But before you come to my rescue, go read today's post 2 Per Bag.
It's a fabulously written and very moving post.
And as long as you are helping me, add that blog bling to your blog too.
Lots of great stuff over there, every day!

Friday, July 10, 2009

A Very Cool Kid

Yesterday I found myself in a conversation with the manager of the pool we belong to about Oscar's swimming ability and whether or not he should be allowed in the shallow section (a.k.a. the baby pool). He was in the process of kicking Oscar (and Abe, and all the other big kids) out when I approached him. Oscar was sitting floppily on the steps. He had just finished his lesson and was pooped.

Before I knew it, this guy was describing Oscar's "look" to me. He referred to the way Oscar's goggles slip down making his ears stick out and smooshing his eyes. He swept his hand over his own face in a downward motion to indicate Oscar's low affect. While I was the one who mentioned that Oscar had special needs (and therefore should be allowed to stay in the shallow area since he could not yet swim a lap)...I was still somewhat offended.

Today, at Target, Abe got Oscar to try on some mirrored sunglasses. He had chosen a pair himself, needing something for his evening baseball practices and games when the descending sun can be so bright and distracting.

I debated about whether to let Oscar get them. They were $20. And they will get lost or broken. But, with these on, Oscar's low affect looks purposeful, even cool. And so I bought them. Because he is, you know, a very cool kid indeed.
And, for that matter, so is his big brother.

ps. the manager only had Oscar's safety in mind. he was letting me know he had noticed Oscar swimming in other areas of the pool. he was not, i don't think, intending to be disrespectful.