Thursday, October 22, 2009


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.


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 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!