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.

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.

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!

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.

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!

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.

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.

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.

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.