Friday, May 30, 2014

PWS Awareness Day 30: On Friends and Social Thinking

I picked Oscar up from school today after the camping trip.  His class had just returned, and I spotted him outside in the middle of a group of friends under the trees by the picnic tables, chatting.  One girl was wearing Oscar's new Oakland A's hat, in that way that teenage girls borrow cute boys' clothes.  Another raced off when her mom pulled up, but ran back to hug Oscar goodbye.  Oscar's tone changed and turned all cool-guy-confident when he called after her "See you Monday, Molly!"  And I about peed my pants laughing when I noticed he was still wearing his fleece pajamas, long underwear and a sweatshirt.  "It was COLD in Bolinas, Mom, like 50 or 60 degrees!" he argued.  But no one else seemed to give a hoot. Oscar's school somehow manages to provide these kids with somewhat typical experiences while still maintaining a wide range of acceptable.  "No one cared," Oscar said when I asked if anyone noticed he was still in pjs.  Same with the stuffed giraffe he'd insisted on bringing along.

When Oscar was born I grieved that he would never go to a good college, that he wouldn't have children, that he would never live independently.  I thought these accomplishments were important, the components of a worthwhile life.  But, slowly, really slowly, the standard by which I measured "worth" and "success" started shifting.  

What I hope for Oscar is simple in expression though not necessarily in realization.  I want him to live a happy, fulfilled life.  I hope that he will always have friends and family that love and appreciate him, and work and interests (paid or not) that engage and sustain him.  And, of course, I hope he will be safe.

We are heading in the right direction, but today, seeing him so happy and in the mix socially, I started to wonder how will we be able to keep providing him with these types of accepting (fleece pjs? stuffed giraffes?) yet stimulating (teenage flirting?) environments.  Most of the kids he goes to school with will go on to college, live independently, hold jobs, have families.  At some point Oscar will be left behind. 

"But I can't think about that now," I told myself on the drive home. As I listened to Oscar chat on about the walk to the beach, the chasing of chickens, the sheer outdoorsy fun of the trip, my mind drifted to the early conferences we went to, when all the PWS experts kept hammering the importance of social skills training.  He's finally in a place where that's happening consistently and I can tell. 

(Oscar's school uses a few programs, but the predominant one is the Social Thinking curriculum that Michelle Garcia Winner developed.  Social Thinking helps kids learn to think about others in social situations, and in turn, consider how others think about them....when they speak, interact, even dress.  The curriculum is rich and tangible and we use much of the vocabulary at home to help reinforce the concepts.)


 Oscar with his first giraffe, now one of the fourteen or so he sleeps with each night. 

Thursday, May 29, 2014

PWS Awareness Day 29: Yearning for Independence

Oscar left on another class camping trip this morning. With the success of his Yosemite trip still fresh, I kind of slacked on the packing this time.  Last week, on the day the luggage was due for teacher inspection, I jumped out of bed in a panic and jammed the required items into his navy blue duffel.  Two t-shirts, shorts, a fleece, long underwear, a warm hat, etc.  Paul pulled out a sleeping bag and Oscar quickly climbed in to see if he fit. He didn't. They raced back to the closet (waking up Abe) and pulled down a bigger one and stuffed it into the sack. We had that kid mostly packed in ten minutes.

And the same thing happened today.  I overslept and woke in yet another panic, having forgotten about the trip.  Oscar's van would be at the stop in twenty minutes and we still needed to round up the remaining items.  The toothbrush, the meds (darn, the meds! forgot to tell his teacher about the meds), the crocs, a flashlight, a hat, his book.

"Does Johnny know the plan?" Oscar asked.  He meant the food plan.  His teacher and I met last week, talked logistics and looked over the menu. He's been in charge of Oscar's food before, he's a food security pro.  I only provided guidance on the quantities.

"Yep, Johnny and I talked it over last week.  He knows," I nodded.

"Good. That's covered. Johnny knows the plan. Johnny knows," Oscar told himself as he shoved his feet into his shoes, laces still tied.

Even with food security and a plan in place, I still noticed an edge of anxiety in Oscar's voice.  It happens any time we travel, any time our routine changes.  Consistency is key, I thought, listening to him.

With his pillow, a giraffe stuffy, and his toiletries hastily crammed into a paper bag, he slung his backpack over his shoulder and raced out the door.

"Love you Oskie! Have fun!" I yelled, following him onto the porch, letting the heat from the sun-warmed concrete soak into my bare feet while I reveled in the feeling that I was not worried.

"I will! Of course!" he called, not looking back.  His steps were springy, exaggerated, his wave large and sweeping.  He was so happy to be going, energized by the independence these trips imply.

Lately he's been very focused on independence, on what his life will be like after high school.  His once weekly mentions of life beyond our home have increased to once or twice daily.

Yesterday it was:   "Mom, I really want to work on my money skills this summer, for when I'm on my own."

And before that:  "Mom, I'm worried about how I'm going to afford my house, when I'm older."

And:  "Only five more years till I move out.  I need to be ready."

The kicker:  "I really want to get into a good college."

I don't know yet what college will look like for Oscar.  He is bright, but processes slowly, hard-working, but struggles with thinking abstractly.   More than one class at a time would be overwhelming. Living alone isn't possible, and any "roommate" would need to be a paid behaviorally trained aide willing to live with food security.  I'd always figured he'd live in a group home, but maybe assisted living will work.  Because Oscar will always need support.

But for now I just nod, resolved to keep helping him toward his goals, hoping that we will find the right situation when the time comes.

Oscar trying to lug all his gear through the school hallway.

Wednesday, May 28, 2014

PWS Awareness Day 28: Locking the Money Too

One of the most critical aspects of raising a child with PWS is “locking up" the food.  Whether locking is just figurative – with a food security plan and no hope of acquiring extra food beyond what’s planned – or also literal – chains looped through the doors of the refrigerator, padlocks on the cabinets, keyed access to the kitchen – it relieves the anxiety and allows the person with PWS to function more calmly and at a higher level.  Consider what it would be like to learn multiplication or discuss plot and character traits if your mind was consumed with the possibility of obtaining the one thing you couldn’t stop thinking about.

For Oscar, though, and I suspect many with PWS, lack of satiety extends beyond food to other items and experiences.  

Last summer, we had to "lock up" the money too.  Oscar had become obsessed with it. He talked constantly about ways to earn more, about how much he had.  Like food, "enough was never enough".  He woke in the middle of the night to count the coins he kept in the back of his sock drawer.  He asked daily to check his bank balance and quizzed me about interest rates.  He snuck onto the computer and googled conversion rates for his foreign coins.  We started keeping his wallet on a high shelf, but caught him reaching up to grab it so he could re-count his five dollar bills.  His desk was covered with papers filled with scrawled sums – the adding up of the coins, the wallet money, his bank balance. He was anxious, perseverating, and prone to meltdowns.  Thoughts of money were consuming him and jeopardizing his behavior, much like what happens when food security is not in place.  The few rules we placed on counting and talking about money weren't effective.  We needed more.

"Here's the plan," I told him one afternoon, as he lay facedown on his bed crying. He was panicking again about the number of five dollar bills in his wallet, worried he had lost some.  But he stopped sobbing to listen.

"It's all going into the bank," I said.  "All of it. Even the coins. We can check your balance once a week, on Sunday night."

He climbed out of bed and wrapped his stick-thin arms around my waist. He buried his head in my chest.  "Thank you Mommy," he said, relief flooding his limbs.

Oscar stopped obsessing about money that day.  With no more opportunities to count it, no possibility of losing it, but, importantly, the assurance we could still talk about it once a week, his mind was freed.  On Sunday nights I transfer his allowance into his account along with any additional money he might have received from a birthday or a cat-sitting gig.  He writes down his balance, and then he goes off...to listen to pop music on his ipod, play monopoly with Ruby, chat with his girlfriend. (Or, honestly, to talk about the A's with Paul.)

Here are a few pictures of Oscar hard at work at a cat-sitting job. 



Tuesday, May 27, 2014

PWS Awareness Day 27: Predicting the Future

Oscar was late for every gross motor milestone.  Late to roll over. Late to sit up. Late to walk. And every interaction with a typical baby was a reminder of just how behind he was. I remember laying him down on a blanket at the park next to my friends' babies, ones that were born months later.  His arms and legs lay still at his sides while those babies kicked and rolled effortlessly.

Early on I perseverated (yes I perseverate too!) about Oscar's gross motor skills.  They were one of few tangible measures of how he was doing, and I wondered if his delay in rolling over, in walking, would predict how severely affected he would be in other areas as well.   I peppered his physical therapist, the geneticist, the endocrinologist, every parent I met, about whether his significantly low tone meant he would be more cognitively challenged, more likely to food seek at an earlier age, have more severe tantrums.

I wish I could remember who it was that helped me understand that PWS was a syndrome comprised of distinct characteristics, and that the degree to which Oscar was affected in one area was in no way predictive of future struggles or successes in another.   For a mom desperately trying to figure out what the future held this was both reassuring and frustrating. I was glad Oscar's muscle tone couldn't be definitively linked to a lower IQ, but I also really wanted to know what his life, our lives, would be like.

Oscar did eventually sit up:
 and ride a bike:

And eventually I gave up on trying to guess how impacted he would be by other aspects of the syndrome as he got older.   Eventually I learned to live a little more in the present.

Monday, May 26, 2014

PWS Awareness Day 26: It's a lot

Tonight's post will be a quick one, more of a reflection really.  As I've been reading through the many PWS Awareness Month posts on facebook, I've found myself stunned, even though I live it, by the amount of planning, research, and time that goes into raising a child with PWS.  Other parents are posting about so many things that I haven't covered yet, that I may not even get to in these 31 days.   Procuring growth hormone, scheduling sleep studies, testing thyroid and cortisol levels, arranging school accommodations, addressing GI concerns, attending a family party, supporting play dates, educating family, managing the food.  And the behavior, definitely the behavior.  The list goes on and on. And the thing that struck me today is how much work it all is.

I am not complaining. Our family has fallen into a rhythm.  Of course there are bumps, days that are particularly challenging, but we are pretty used to doing the things we do to support Oscar on a daily basis.  We are used to being home every afternoon so he can nap. We are used to planning meals that are healthy and predictable.  We are used to re-explaining the passage in the book three times.  We are used to interruptions and endless questions.  We are used to arguing with the mail order pharmacy about the darn needles.  We are used to constant oversight, clever framing, and employing humor as a survival tool.  We're used to driving an hour plus to certain doctors because, really, I'd rather drive far for the right doctor than waste time with the wrong one.  Ruby is used to explaining the monopoly rules and waiting for Oscar to count his money, again.  Abe is used to talking Oscar down from the precipice of a meltdown with grace.  We do these things and we don't think about them very much.  Because, honestly, we love Oscar.  He is funny, and engaging, and smart, and he is very much his own person, living with, but not defined by, PWS.

But when I read other people's posts, it forces me to recognize just how complicated and time-consuming all that planning and scaffolding can be.  It's as if the hazy blur I inhabit comes into focus for a minute.  Images sharpen. Thoughts crystallize.

"Huh," I found myself saying today as I read other people's posts, "this really is a lot."

(Oscar at Sea Ranch last November)

Sunday, May 25, 2014

PWS Awareness Day 25: Perseveration

"Dad and I are thinking about going to the A's game tomorrow," Oscar told me first thing this morning, the sleep still crusted around his eyes.

"Yeah," he continued, not waiting for a response, "I've been looking at tickets."

I raised an eyebrow, wondering how early he woke to do this research. How far down the path of expectation he'd traveled.  "Hmm, we'll see," I replied non-committedly.  "Dad and I will talk about it.  We're all going to Abe's rowing party in the afternoon."

I left the room to get dressed and heard him talking to Paul, "Dad, we have to go online and buy the tickets."

And when I returned, he was still talking.  "So Dad, I don't mind if we need to leave the game early to get to the rowing thing. We can take two cars."

"We'll see Oscar, Mom and I need to talk about it," Paul replied.

And when I got back from taking Ruby to her friend's birthday party, he greeted me with, "I'm excited for the giveaway at the A's game tomorrow."

"We haven't decided if we can make it work yet, Oscar," I reminded him.

While we were making lunch: "Dad, what time should we leave tomorrow?"

"We don't have tickets yet," Paul cautioned.

When he woke from his nap: "Dad did you get the tickets yet?"

"Nope, Mom and I are still working on the details."

Getting into the car to go hiking, "I'm excited about the game tomorrow."

This went on all day, and all through our beautiful sunset picnic atop a grassy hill in an open space preserve overlooking the San Francisco Bay.  We hiked the fire trail over rolling hills and perched right off the path on a scraggly spot with 360 degree views.  From our blanket we could spot the Campanile of Berkeley, the horseshoe-shaped cove on the north side of Angel Island, the steely gray skyline of San Francisco, and the verdant Marin Headlands. Sailboats flitted across the water, and a private plane circled the bay, at an elevation lower than us, and flew right between the two towers of the Golden Gate Bridge. The sun shone on our backs as it descended behind Mount Tamalpais while Paul strummed his guitar, I scribbled in my notebook, and Ruby and Abe read.

Oscar, though, he kept talking about the A's game. To himself. To Paul. To me.  The one we still didn't have tickets for.

Oscar, and most people with PWS, can get stuck on a topic and have trouble shifting off.   Oscar most often perseverates about things he's looking forward to -- an A's game, a grandparent visit, a big field trip, or things he is worried about.  He will keep talking about the chosen topic without regard to the listener's interest or happenings in his surroundings. I frequently remind Oscar that he is perseverating, and then allow him one more comment on the topic before I insist we talk about things going on around us instead.  He is far more open to this feedback than he used to be.

To be fair, Oscar's perseveration today was exacerbated by the uncertainty Paul and I created. Were we going to the A's game, or not?  But even if we had decided, even if we had the tickets in hand, he still would have been perseverating. The words would have been different, but it probably would still have been the only thing he was thinking about.


Saturday, May 24, 2014

PWS Awareness Day 24: Hope in Pictures

When Oscar was born and first diagnosed,  all I could think about was the insatiable appetite. I had nightmares about the food-seeking monster I thought he would become.  I envisioned him digging through garbage cans, unscrewing the locks off the cabinets, sneaking out of the house to steal food. 

There were few hopeful stories out there at that point.  Very little to balance out all the scary possibilities.  But one photo, that of a young girl with PWS in a little play house, stuck with me.  She was smiling, her head cocked to the side. The caption read "E frolicking with her preschool buddies".  Thirteen years later I can still conjure her thick dark hair, her deep brown eyes.  I can still remember repeating that caption -- frolicking with her preschool buddies -- over and over to myself, trying to drown out the nightmares. 

I've written about how pictures don't tell the whole story....but I also know that someday some mother (or father) of a newly diagnosed baby might find her way here, and that a few photos of young Oscar might provide a tiny bit of light in a dark moment.


 Oscar, 15 months, pulling books off the shelf

 Oscar, 22 months, playing peek-a-boo

 Oscar, 28 months, dancing to street music in San Francisco

 Oscar, 4.5 years, riding a scooter

 Oscar, age five, diving into the pool (or was it a belly flop?)




Friday, May 23, 2014

PWS Awareness Day 23: Coping and Support Groups

Everybody copes with traumatic events differently.  Some retreat into themselves, others seek support from professionals, friends, and family.  There is no right way, and I know that my needs after Oscar's birth varied by the situation.  Early on I sought out one-on-one interactions where I could speak freely about how our life had changed, and I was easily overwhelmed by large groups where the conversations veered toward the minutiae of a daily life not touched by disability.

Many I know avoided researching the diagnosis extensively or talking with others when their child was first born.  I get it.  But I yearned to talk with other parents of kids with Prader-Willi.  I wanted to connect with mothers who were exactly in my spot, or only a few years down the road.  I wanted to know what our life would be like, even if the knowledge fueled my nightmares.  I had no interest (yet) in speaking to parents of a kid with Down syndrome, or cerebral palsy.  And certainly not to the mom of a preemie.  Those babies will get bigger and be fine, I thought.  (Yes, I was naive, and my dear friends who had preemies will read this and be glad they didn't know me then.) 

The day Oscar was discharged from the NICU, the hospital social worker handed me a stack of materials on Prader-Willi syndrome.  She'd already called our state organization and gotten the contact information for a local family who had a son who was nearly four years old.

I remember clearly the details of that first conversation.  The mom had just returned from a potluck and was throwing in a load of laundry while we spoke.  Her son was on growth hormone. He'd walked before the average age of two years old. He wasn't food seeking. He loved the playground. 

She didn't downplay the stress of raising a child with PWS, but still I felt the tiniest bit of the fear dissolve.  Laundry. Playgrounds. Potlucks. Her casual references to life beyond the diagnosis were a tonic that spread through my body.  My jaw unlocked, my shoulders relaxed, and for one brief moment I thought, "Maybe this will be ok."

Paul and I attended our first Prader-Willi support group when Oscar was only two months old.  We sat in a circle of cobbled together couches and chairs in a chilly classroom at a San Francisco school.  Fifteen or so other parents, many with young children, laughed easily one moment and shed tears with us the next.  The mom of the four year old was there, and we met another family we'd also spoken to who had a baby just three weeks younger than Oscar. Together we pumped milk into our floppy babies' mouths while the seasoned parents answered our questions.  A slender ten year old boy with PWS approached us with a stack of name tags and a sharpie and asked us our names.  He smiled, spoke clearly, and moved easily among the adults.  Paul and I looked at each other and thought, "We can do this." 

Those parents from that first meeting became our PWS family.   Over the years we organized fund-raising walks, went camping, planned vacations, had BBQs, celebrated birthdays, attended conferences, and shared IEP resources.  While our family hardly ever makes the support group meetings these days -- our three-kid schedule is too hectic -- some of those moms will always be among my dearest friends.  Our families meet for dinner, we squeeze in a coffee date, or we schedule long lunches (that may or may not include a glass of wine) and immediately reconnect no matter how long it has been. 

And that first mom, the mom of the then-four-year-old, is still the one who pulls me up from the bottom. The one I lean on the most.  I see her often, but last fall we planned a whole day.  We sat outside at a local cafe, the sun warming our faces, and dove into our long list of topics, taking turns.  We don't just talk about PWS, in fact we often try to avoid it, but the authenticity with which we discuss all things, including the challenges of raising our sons, sustains me.  That day, after covering only a fraction of our topics, we hopped in her car and drove out to the coast for a hike to the beach.  Sitting on the pebbly sand with the waves crashing on the shore, we snacked on cheese, avocados, kale, nuts and chocolate and just kept talking.  We tackled hard topics that day.  I acknowledged things I share with few.  But just like that first time we spoke when Oscar was two weeks old, I left feeling refreshed and strengthened, and grateful for friendship in the midst of trying to navigate raising a child with a disability while balancing the needs of myself and the rest of the family.

That beach. One of my favorite spots.


Thursday, May 22, 2014

PWS Awareness Day 22: Scoliosis

You know what's keeping me up at night?  It's not the food or the tantrums.  It's the darn scoliosis.

Almost a year ago now Oscar had a great appointment with Dr. Gray, our spine surgeon.  His 25 degree curve, though not ideal, was stable, and no additional intervention was needed.  No brace, no surgery.  We were on a good path.  Dr. Gray congratulated Oscar with a big smile, and reminded him that core exercise was essential.  He retold his favorite anecdote about the ballet dancers that he treats -- their curves always worsen when they get injured, and improve as soon as they can dance again.  "Row, play basketball, do pilates", he told Oscar, as he always did.

Oscar had been seeing Dr. Gray since he was three years old and the orthopedic surgeon at our local hospital had made me feel like an "hysterical mother" when I expressed disbelief about the fifteen degree jump in Oscar's curve in a four month period.  He completely dismissed me when I mentioned my concern about Oscar's weak muscles ever strengthening if I agreed to the recommended 23 hours per day brace. And when I inquired about intense core strengthening as a way to stabilize the scoliosis, he just shook his head, and sent his nurse in to make the appointment for bracing.  I wasn't going to keep taking Oscar to a doctor who treated me that way -- we switched immediately to Dr. Gray.  Many of the families in our support group were already seeing him.  He was not alarmist, and he believed in the importance of core strengthening.  And Dr. Gray also knew how to use a protractor -- Oscar's curve hadn't even actually increased -- our original doctor had mismeasured!

Ten years have passed and I still sound bitter, don't I?   This whole story came rushing back yesterday when Oscar's endocrinologist closed the examining room door and asked my honest opinion about the first orthopedic surgeon.  She has patients who need referrals and wasn't sure who to recommend. I didn't hold back -- I gave her all the details and strongly suggested she not refer patients there.  There's more (including the botched surgery of a boy we knew) but I won't go into all of that.

Dr. Gray retired in March, and he squeezed Oscar into his schedule on his last day in the office.  It had been 9.5 months since we'd seen him, and the curve had worsened.   And I know why.  We'd fallen off on our the core exercise regime.  Our rowing machine had broken, we'd moved and were (are) in the middle of a remodel.  Paul was busy with work and I'd been diverting energy into writing, and other pursuits. 

Yesterday morning, when Oscar was standing naked in front of the mirror with those cleansing pads I could really see that "S" curve clearly.  Twenty-nine degrees on top, twenty-five degrees on the bottom.  His right leg is slightly longer so that hip is higher.  We lost the lift we used to put in his left shoe to try to even things out.  I still hadn't called to make an appointment with the spine surgeon that Dr. Gray recommended.  And when I did call yesterday morning I got caught up in a referral process that required the medical records I'd forgotten to request.  It will be another few weeks, at least, before we get the appointment, another few after that, I'm guessing, before we can get him into a brace. I'm wondering how much that curve will worsen in that time frame. And is bracing even the right way to go?

In the meantime we've heard about an alternative method to correcting scoliosis that involves a three dimensional exercise approach.  There is a practitioner about an hour away, in the opposite direction of the spine specialist. I don't even know yet what their wait time is, or how many appointments would be necessary.  Could we do the exercises from home?

"We've got to figure out how to make this a priority," I said to Paul last night.  Oscar has to use the rowing machine more consistently.  And we have to figure out which approach to take.  We have to inject the same energy into managing his scoliosis that we did into getting him on growth hormone when he was a baby, into figuring out his GI issues last fall when he was plagued with stomach aches, into making sure we maintain his food security.

I've written this before, but raising a kid with special needs is sometimes a bit of a triage situation. We can't tackle everything at once.  We have to identify priorities, and recognize that some things will just not get done.  Right now we have to focus on scoliosis.  (And please don't ask me about sleep studies, orthodontics, or excessive daytime sleepiness.)

Oscar using the rowing machine -- we fit it in on the weekends. It's the weekdays that are tricky.


Wednesday, May 21, 2014

PWS Awareness Day 21: Rigid Thinking

I peeked in on Oscar in the bathroom at 7:25 this morning.  He needed to leave for the van stop in ten minutes, and I wasn’t sure if he was even dressed. I’d asked him to shower, which always slows things down, and when I opened the door, he was standing in front of the mirror, still naked, dabbing his face with cleansing pads.

“Oskie, you just took a shower.  Remember, you don’t need to use those pads when you’ve already washed your face.”

We’ve been working on this for months.  This, and putting his Harry Potter book in the main compartment of his backpack, not a separate pocket, because that one extra zipper adds too much time. And only wetting his hands for one second before soaping up.  His current routine is this – turn on the faucet and run hands under water for twenty seconds. Turn off water, soap up until hands so white with lather he looks like he’s wearing mittens, then rinse for another twenty.  Drying requires removing the towel from the bar and slapping his hands back and forth across the terrycloth until they are completely dry.  This can take another twenty to thirty.  He doesn’t count the seconds, but I do when I am watching him.

In my less patient moments I intervene, wresting the soap from his hands, turning the water off, proclaiming his hands “dry enough” after one quick swipe. Some days he’ll roll with my brusque manner, other days this could trigger a meltdown. It’s a gamble.

Oscar is a rigid thinker.  Most people with PWS are.  He struggles with changing patterns once they are formed.  He needs to follow the steps of each task in the exact same order every time, and resists adjusting the routine, even when’s running behind.  Even when he’s late for a favored activity. 

So much of parenting Oscar is about trying to foster (or force) flexibility.  We explicitly teach him how to take faster showers by skipping some body parts when we're late, to erase only the part of the math problem that is incorrect, that he doesn't need to zip his jacket all the way to the top before he leaves the house.  That flannel-lined pants aren't appropriate for 70 degree days. That cleansing pads are unnecessary when he's just washed his face.   Some days he can make small adjustments, other days it's like trying to budge a boulder.

The rigidity demonstrated here?  All artwork, even hama bead creations, incorporates yellow and orange.  (I kinda like that though - yellowish-orange is his signature color.) 


Tuesday, May 20, 2014

PWS Awareness Day 20: Grief, still?

Abe interviewed me yesterday for a class project.  He needed to talk to someone who had survived a challenging time.  He'd been trying to track down a local Holocaust survivor who speaks at area schools, but he'd been unable to reach her.

Raising a child with a disability.  Surviving the Holocaust.  Not in the same category.

"I don't think I'm what your teacher is looking for," I said, my eyebrows scrunched.

"It's fine. It's fine," he insisted.  I felt like he was taking the easy route, but I let him do it anyway.

He followed me around the kitchen with his voice recorder while I brushed the dirt off the mushrooms. While I washed and sliced the kale.  While I shucked the corn, then simmered the soup.  Oscar was sleeping and Ruby was playing wiffle ball at the park.  We had privacy.

"Tell me about Oscar's birth," he asked, his voice soft.

"What were those first few weeks were like?"

"How did you cope?"

I talk about Oscar, PWS, and our family all the time.  I tell our story whenever anyone asks, and, these days, I can do it in that half-smiling, shoulder-shrugging, "life is crazy but we're totally ok" kind of way.  Sometimes, I even throw in a joke. 

And I've written about the scary first moments.  A lot.  This weekend, at the writer's workshop, I shared excerpts of the beginning of my memoir.  Some of the writers in my group told me that they cried when they read it. But I didn't cry when I wrote it, and I started to wonder if I am too distanced now to write it. 

But yesterday, when Abe started asking questions, I felt my body tense up.  I bit my lip and bobbed my head from side to side till I could get the words out.  I swallowed.  But it was useless. I couldn't hold back the tears.

"I don't know why I'm crying," I said to Abe. "You know most of this stuff. We've talked about it."

He smiled and waited. He wasn't uncomfortable.

I thought I'd gotten through all the tears. Years of therapy and support groups and crying to friends and family -- I did a lot of processing those first few years.

Maybe it was because now it was Abe asking the questions.  Abe who was only two when Oscar was born, and, oblivious to our grief, made us all dance in the living room every evening when we returned from the hospital to Neil Diamond's It's A Beautiful Noise, because the song mentioned a train.

Or maybe it was the recognition that my confident, skilled and compassionate older son is undeniably, and beautifully, shaped by an experience I fiercely wished I could have protected him from.

Either way, apparently there is still a little bit of grief buried deep inside.

Monday, May 19, 2014

PWS Awareness Day 19: Abe's Perspective

What is it like to have Oscar as a brother? I should know. I’m Abe, Oscar’s older brother (Read about me on the right side of this page).

Oscar is much more “normal” than you might think. He has relatively strong social skills, and he is articulate and coordinated enough that on first glance, he could easily be just another teenager out with his family. I think that’s how most people see him—people who don’t know him anyway.

To close family friends he is much more—a funny, talkative, brother of Ruby or me, or son of our parents, who is a huge A’s fan and loves animals. Oh and he has Prader-Willi syndrome too. But that doesn’t quite tell the whole story.     

To me Oscar is a funny, hardworking, earnest, and stubborn brother.  Our relationship is similar to that of other siblings who aren’t disabled (I think). We talk (and argue) about baseball; we plot against our parents, our sister; we play board games together. Doing these things with Oscar can be very rewarding. Yet in these situations he requires some extra scaffolding from me, as my mother would say.

In order to keep him in a good mood, I have to be careful that I don’t question his opinion, start winning by too much, or set him off in any other way.  I try to walk the line of stretching him as far as he can go, or close to snapping, because I think it helps him grow as a person. Later in life, I want him to be able to win arguments, to be gracious in defeat, to do things that other people can do with less difficulty than he can.  

I set my hopes high, but his goals are even higher. I want to give him a chance to reach them.

That’s my mindset on a good day.

There are also days when I don’t have such an optimistic view. Days when Oscar is anxious, upset, worried; when he throws tantrums over minor details. Days when I can’t make him laugh. These are the days in which I wish he didn’t have a disability, I question why it had to be me, I wonder about life with a “normal” brother.

We always hope there will be fewer of those days in the future.










Sunday, May 18, 2014

PWS Awareness Day 18: Why is Oscar so thin?

People are often surprised when they see a picture of Oscar or meet him for the first time.  He's very thin, not what one expects when they hear he has Prader-Willi syndrome and insatiable appetite. In part, he comes by it naturally -- Paul is very tall and thin, and family genetics are a big factor.  We also have food security in place to ensure that is healthy and safe, and getting the right amount of calories.  But there's more to it than that.

Many years ago, at a National PWS conference we heard that the ideal weight for a person with PWS is a quartile below their height percentile.  So, if Oscar's height is in the 50th percentile, his weight should be at about the 25th percentile. 

My understanding is that the main reason for this rests in how PWS affects body composition.  We've not done the fancy tests, but Oscar has less lean muscle mass and relatively more fat mass than a typical person - and therefore his healthy weight is actually less than that of a typical person of the same height who has more muscle.  If he were to gain excessive weight, my impression is that he would gain fat mass at a more rapid pace than lean muscle mass which would put extra strain on his organs.  He'd also have extra weight to support but not the increased muscle strength to carry it like typical people do when they gain weight.

Growth hormone therapy helps increase lean muscle mass and reduce fat mass (along with many other positive effects). Oscar has been getting nightly growth hormone shots since he was four months old, and there's no doubt he has benefited greatly.  My guess would be that his lean muscle mass is still below average though.  And, with less muscle, he looks thinner than expected for his height.  I notice this especially in his arms but also his legs.  

We work closely with Oscar's primary care physician and his endocrinologist to make sure that he is growing and gaining weight at the right pace.  And sometimes we need to make adjustments. Just last fall we all agreed that we needed to up his calories to ensure he had enough fuel for puberty.  (In case you are wondering, we made these decisions with Oscar out of the room, since discussing increasing calories in front of him would have created major anxiety!)

My two thin (and good-looking) guys. 


Saturday, May 17, 2014

PWS Awareness Day 17: Thoughts on a Meltdown

I called home from Lit Camp today, hoping to get to talk to Abe, Ruby and Oscar.  I hadn't heard their voices in a couple of days.  Abe told me a little about coxing the quad and the four in the final race of the season.  (He hasn't been able to row since he broke his wrist three weeks ago but he still found a way to be in a boat.)  Ruby told me about the sleepover at her friend's house. She slept there last Friday too, and she giggled when I asked if she'd be made a plan for next Friday as well.  But Oscar couldn't come to the phone.  He was in his room, screaming, Paul said, frustrated that his favorite baseball video game wasn't working out the way he wanted it to. 

Oscar had big hopes for this game -- he wanted to be able to create his own team, just like the current Oakland A's. He wanted to make trades and play against other teams.  He wanted to pretend he was A's general manager Billy Beane and play out a virtual (and very realistic) season.  But the game isn't an exact replica of the MLB.  And it's complicated, too complicated for Oscar to play by himself.

"It's just too hard for him," Paul lamented, "I need to figure it out myself so I can help him."

"I probably should have researched it more before buying," I said.

Paul hung up quickly so he could go be with Oscar, who was still yelling.  I couldn't hear him through the phone but I could imagine him kneeling on the floor, his upper body splayed over the bed.  I could him imagine him crying "It's not fair! It's not fair!" over and over.

But Paul wasn't anxious or worried about Oscar being so upset.  Neither was I.  This isn't the the first time he has melted down over this particular game.  He'd recover of course.  But it did make me reflect on how Paul and I both recognize that it is up to us to control the environment for Oscar.  We don't fault Oscar for this tantrum, I realized. We fault ourselves for not providing him the support he needs.  It's back to that thin environmental buffer -he just doesn't have the resources to manage this kind of disappointment, this kind of challenge.

Here's our big A's fan...at the ballpark in April.  Smiling.

Friday, May 16, 2014

PWS Awareness Day 16: Social Skills

Last weekend, after Abe's crew practice and Ruby's soccer game, we packed the whole family (visiting grandparents included!) into the car and drove an hour north to Sonoma Valley to Oscar's friend Eli’s birthday party.  Oscar had been talking about the party – a baseball game and swimming – for weeks.  He couldn’t miss it.

Oscar and Eli had bonded at school over their sports fanaticism.  Oscar, an Oakland A’s and Warriors fan, had finally found someone else who devoured the sports section every morning, someone else willing to talk trades and records and stats for hours.  Oscar was even able to accept that Eli is a Giants’ fan, something that might have been a deal-breaker a few years ago. (“Yeah, but he likes the A’s too, Mom,” Oscar would add.)

We pulled up the gravel driveway and spotted the “baseball field" off to the left.  Oscar leaped (yes, Oscar leaped) from the car and ran across the grass.  "Eli! I'm here! I made it, Eli!!"  The big game was already in progress, but I could hear several enthusiastic calls of "Hi Oscar!!"  There may have been some high fives.   

Abe and Ruby joined in and next thing I knew Paul was pitching and Grandpa was taking pictures. It didn't matter how many pitches someone needed - everyone got a hit.  Paul expertly bobbled a few catches, and then Oscar's friend Eli smashed one past the outfielders and several runs came in.  GrandMary and I sat with other parents on the deck stairs by the pool, chatting and looking out at the vineyards and surrounding hills. And I pretended that it was always this way.  That Oscar was always so engaged, so included, without any scaffolding or prodding.  That I didn’t need to be standing on the sidelines making sure he was following along and that no one was getting frustrated with him.

Oscar has made great strides socially this year, and has some genuine friendships centered mostly around a shared interest in sports and music.  I know why -- his teachers work on social skills every day, in the classroom, in social skills groups, and in one on one sessions. He, like most people with PWS, has needed to be taught every little aspect of interacting with others. The consistent school-wide push has been crucial.  And, importantly, Oscar’s peers at school, a school for kids with learning differences, are well-matched for him.  As the head of the school says, these peers “mirror and match” Oscar’s skill set. There is a nice balance of kids who are working on the same things that he is, and others whose strengths are his weaknesses.  The mix means that Oscar fits in, but also has models.

Years ago, when we attended our first Prader-Willi conferences, many of the speakers emphasized the importance of social skills.  Those conferences were packed too with strategies for navigating food and behavior, the benefits of growth hormone intervention, information on managing GI issues, plus tips for supporting gross and fine motor development.  I couldn’t absorb it all.  Raising a child with PWS is a never-ending triage situation.  There were years when social skills were the priority, and others when scoliosis or GI issues took the front seat.  I can’t look back and wish I’d pushed harder earlier.  But I am happy to see him so engaged now, so interested in connecting with friends, and able to carry on a conversation of more than two exchanges about something other than just his favorite topics. 

I wish I could post a photo of Oscar with one of this friends, but I'm hesitant to without permission. So, instead, here is Oscar with his favorite furry friend -- his cousin A's dog Penny. (Penny, you're famous!  And thanks to Grandpa for this and probably every other photo I've posted.)


Thursday, May 15, 2014

PWS Awareness Day 15: Pushing Through

Yesterday morning, a friend texted me a hilarious exchange that she and her husband had over pre-dawn coffee about my blog posts.  Not about the posts themselves, but the fact that I am managing to write them every day.  The exchange was so funny that I started cackling. When I tried to read it aloud to Paul, tears streamed down my face and I couldn't finish.

I really needed that laugh.  And I really needed the acknowledgment that I am posting every day.  The truth is, many nights I am so exhausted that I almost give up.  I do try to start early but I often have trouble settling on a topic.  I start two or three posts and abandon them or save them for later.   It's hard.

Two nights ago I spent an hour looking through pictures thinking I’d take a break from writing and just post pictures for a few days, but then returned to the post I’d started earlier about “the plan”.  As midnight approached and I still wasn’t done, I really wanted to give up.  Just like I wanted to give up three nights earlier when I was writing about the pervasiveness of food in our culture.  But then, and this sounds sappy, I realized I couldn’t.  I had to keep writing.  I had to post something.  Oscar lives with PWS every single day.  He doesn’t have the option to give up, to step away from the challenge.  So this is one small way I can honor him. 

That said, I am away at Lit Camp, a writer's conference in Calistoga, through Sunday where I'm meeting other writers as well as agents, editors, and publishers.  I'll be getting feedback on the first pages of my memoir about learning to cope with Oscar's disability and then helping him to do the same as his understanding of PWS grows.  It's exciting, and I'm nervous.  And the internet is spotty.  But, somehow I'm still going write these blog posts!

Here's Oscar, on his third attempt to climb to the top of the wall. He made it!


Wednesday, May 14, 2014

PWS Awareness Day 14: Enough is Never Enough

Some describe people with PWS as being always hungry.  But Oscar and many others are actually better described as never full.  It's an interesting and important distinction, and not one I can claim to have made.  I heard it first from those two PWS experts Drs. Gourash and Forster who also developed the concept of food security after working with many patients with PWS at the inpatient crisis center at the Children's Institute in Pittsburgh. 

As I've mentioned, Oscar will almost always finish every last bit of his meal.  Yesterday the grapefruit quarters I'd given him for snack were completely stripped of all the pink flesh, and most of the white pith.  He would eat the gelatinous strip of fat on the steak if Paul or I didn't cut it off.  He will drink the rest of the soy sauce after the sushi is gone.  But we don't talk about "full" or "hungry" at all, and I never ask if he's either.  The question is irrelevant because the answer won't change anything.  He's done eating when the food is gone.  If Oscar says he's hungry I remind him when the next meal is.  If I were to instead, even one time, give him a little bite of something, it would undermine his food security and create anxiety.  He would know, or have the impression, that he could acquire more food, food outside "the plan" at any time.  He would never let go of the possibility that I might cave again because I did that one time. He's never forgotten a "one time" breach.  The one time I let him get out of bed before official wake up time. The one time he had screen time before he was done with his homework. These breaches often end in meltdowns when denied the next time.

The reason that the distinction between always hungry and never full is important is that telling others that Oscar is always hungry doesn't elicit the desired response.  If Oscar is always hungry, well-meaning people would be tempted to placate Oscar by giving him just a little bit more.  Instead, if we say that he is never full, and that enough is never enough, no one is tempted to give Oscar more food, since more food won't solve the problem.  No matter how much you give him he could always eat more. So simple..but I would have never thought of it myself.  Thank you again, Linda Gourash and Jan Forster.

And, because pictures are fun (and remind me that I am writing about, and for, Oscar) here is one of the two of us along the California coast one beautiful Sunday last April.






Tuesday, May 13, 2014

PWS Awareness Day 13: Allergies, Anxiety and "The Plan"

Oscar is suffering from allergies this year.  He sneezed and sniffed and wiped his eyes all weekend.  I'd never given him medication before -- I am just not sure how he will react.  Can he take an adult dose? Will it make him drowsy?  Or spacy?  I just kept hoping the sneezing would stop.

It didn't.  He was still sniffling and stuffy after school today, so I asked one of the staff, a homeopath, at our local pharmacy what he recommended.  He pointed me toward a homeopathic chewable for kids and proceeded to describe a dosage plan that included Oscar chewing tablets at intervals throughout the day.  Oscar was with me, and must have interrupted five times, getting more and more agitated. 

"I can take it at school by myself, at lunch and snack. I can do that!" he jumped in.

Most of the medicines for kids have some sort of sugar. They taste good, I realized, as his voice rose and his eyes flipped between me and the homeopath.  I needed to adjust his expectations.

"Kids can't give themselves medicine at school. That's the rule," I said and turned my attention back to the homeopath.

"So when am I going to take it then?" Oscar interrupted again.  "Will Dad know I need it at breakfast? How many should I take a day?"

The uncertainty was triggering his anxiety.  He fired these questions off at me before I could start to answer. 

[So here's where I'm tempted to make up what happened next. A little creative license. I can do that, right? Yeah, well, then you all would get some picture of me that's not very accurate.  So here's what really happened:]

"Oscar, STOP.  I am in charge of 'the plan'.  I will GIVE IT TO YOU when it's time." I raised my voice and over-enunciated, catching the attention of other shoppers.

He didn't stop.

"But how will I know?" he asked again, pleading almost.

I puffed up my cheeks and let the air out slowly.  Then I tried again, a little more calmly. 

"Ok, here's 'the plan'," I said, knowing this was what he needed. "I am going to give you one today, and then I have to see how your body reacts.  I need to see if your symptoms get better.  But I will give it to you when you need it, at the right time.  That's 'the plan'."

He finally relented.

For many years now we've been using the "the plan" as a way to create a structure and eliminate uncertainty in the environment.   We use "the plan" to convey a schedule on a busy day, when there is a change in routine, anytime there is anxiety, to deal with crisis moments.  Teachers use the "the plan" as a way to end arguing and gain compliance on non-preferred activities.  "The plan is we are going to run a 1/2 mile and then play at the park."  I use the "the plan" to get the laundry folded and the exercise in before screen time on the weekend.  We invoke 'the plan' multiple times a day -- it's not personal, it's not a punishment or a reward.  It creates a structure and definitely helps allay anxiety about what is happening next, as well as manage spiraling expectations, like at the pharmacy. 

I don't have a picture of Oscar red-eyed and sneezing, so here instead is one of him with Paul and A's pitcher Dan Straily at Fan Fest. Highly-anticipated days like these require creating "the plan" well in advance.

Monday, May 12, 2014

PWS Awareness Day 12: Behavior (A Start)

Most parents of kids with Prader-Willi syndrome will tell you that the most challenging aspect of the disorder is the behavior, not the food. I would agree. We parents eventually get used to managing the food.  We start to eat more healthily ourselves.  We put in place a food security plan and stick to it.  We lock when the time comes.  We cry about that, and then we get over it.  We educate our schools, friends and families. We are clear and brave about asking others for what our kid requires to function.  And we avoid the situations that are unsafe or cause stress because of food uncertainty or access.  It sounds hard, and it definitely is.  But it's not the hardest part for many families.

People with PWS struggle with a wide assortment of behavior issues -- tenuous emotional control, rigid thinking, skin picking, perseveration, impulse control, and OCD-like behaviors to start.  Many behavior problems can be traced to or are exacerbated by stress....including a breach in food security, unexpected changes in the schedule or the plan, uncertainty or inconsistency of any kind.  My favorite graphic from two of my favorite PWS experts (Dr. Linda Gourash and Dr. Janice Forster) is one that shows a smiley face representing a typical person.  Lighting bolts of stress are striking a nice wide "environmental buffer" surrounding the smiley face.  A typical person has lots of inherent coping mechanisms to manage the stressors of every day life.  A person with PWS does not.  The graphic for a person with PWS is a sad face -- the lighting bolts are easily permeating their thin environmental buffer causing stress and leading to a whole array of behavioral issues. 

We've seen most PWS-related behaviors in Oscar: tantrums, skin-picking, anxiety, non-compliance, sneaking, hoarding, inflexibility, arguing.  Whenever behavior issues spike (as they have in the last couple of days) we consider any shifts in the environment.  Is Oscar getting enough sleep?  Is there a big event he's anticipating (an A's game, a grandparent visit, a trip to the zoo?)  Is he worried about something?  Is there uncertainty about the plan?

Oscar has demonstrated over and over that he needs a structured, predictable, consistent, low-stress, (and food-safe!) environment.  And so, the goal for him is not independence.  The goal is, in the words of Drs. Gourash and Forster, maximum function with support. 

He will, in short, never live on his own.   And that's due to both the food and the behavior.   But this does not mean that we have given up -- we work on that "maximum function" every day, helping Oscar develop coping mechanisms, helping him deal with uncertainty or unexpected changes.  Helping him navigate this complex and crazy world a little more comfortably.

Here he is, giving me a thumbs up after a five day camping trip in Yosemite with his school.  A trip that was successful in large part due to the safe environment and consistent approach his teachers were able to carry from school to mountains. 






 

Sunday, May 11, 2014

PWS Awareness Day 11: Writing

Writing has always been Oscar's most challenging subject.  Many of his behavioral challenges at school could be traced to writing -- the physical act of putting pencil to paper to draw or write created so much anxiety that, in kindergarten, he would cry and hide under the table whenever the teacher brought out the markers.  It was so bad that I actually suggested that we pull him from art class. (Thankfully his teacher politely ignored me, and instead she and the art teacher worked to make that class one in which Oscar would participate and eventually thrive.)

A behavioral specialist helped us break writing and drawing tasks into smaller bits starting in kindergarten. Oscar was rewarded when he finished a step, such as writing his name on the line, with the goal of finishing three steps without refusal or a tantrum. By 3rd grade the tantrums over writing were less frequent but he still needed substantial scaffolding and he used a "break card" when he got overwhelmed.  His handwriting was still slow, and he struggled with the generation and organization of ideas, so for longer writing projects he would answer a series of questions created by me or his aide that would "magically" turn into a paragraph when the questions were removed. Or he would dictate entirely to his aide.  These pieces tended to be long and rambling but we celebrated Oscar getting words onto the page.  

In 4th and 5th grade Oscar started typing and using two programs -- Kidspiration and Co-Writer -- to improve speed and help with organization.  His teachers also introduced him to their own organizational tools.  My favorite method for research projects was the color-coded index cards. Each color was tied to a specific research question, and Oscar, with the help of his teacher and his aide, would take notes on these cards and then use them to form paragraphs.  The process was long and laborious, but he still managed to write decent research papers on Christopher Columbus and Green Day's Billy Joe Armstrong.   Even so, we were still working at the sentence level in 5th grade...getting him to write a sentence using the daily prompt was sometimes excruciating.  And he certainly was not able to independently write a five sentence paragraph on a topic of choice.

But this year, in 7th grade, we are seeing big progress in organization and independence. This year (with only one anxiety-based tantrum) he managed to write a 900 word novel with plot and characters through the NaNoWriMo project. This year he finally learned how to write a paragraph with an introduction, supporting sentences and a conclusion in a timely manner.  This year he came home from school excited to start his homework -- a five paragraph persuasive essay about why HE should be chosen as one of the five students to read an excerpt from his novel at a local bookstore.

"Mom, I have to get started on my essay right away," he said as he got off the school van.  "I really want to be chosen to read, so it has to be a great essay."  I raised my eyebrows and smiled.  Was this really the same kid?

Today, for Mother's Day, Oscar handed me a letter he'd written at school.  I know this letter probably started with a graphic organizer on paper or in Inspiration:  a main idea in a center circle with supporting ideas in adjacent circles.  I know he probably wrote a few rough drafts and passed it to a peer for edits. But I know he did it without a tantrum and I'm betting he came up with his ideas quickly and independently...because he wrote a similar note for his grandmother in ten minutes flat.

Like so many things Oscar has learned to do over the years -- walking, riding a bike, tying his shoes (never mind, we are still struggling with that one) -- it took many many many times the amount of instruction and effort of a typical kid but he was finally able to do it.

Here's that awesome letter, and a picture of us.  (He looks pretty proud, doesn't he?)








Saturday, May 10, 2014

PWS Awareness Day 10: 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 and caloric restrictions.  Now I see food everywhere. There are the obvious things -- every birthday, soccer game, or five-minute meeting requires food.  Over time we've encountered lollipops at the barber shop, tootsie rolls at the video store, mints at the dry cleaners.  Surprise Halloween treats at Ruby's preschool at the beginning of October.  Ice cream in Abe's 6th grade class for returning signed forms.  Random people on the street have offered 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 quickly replaced those play kitchens with pretend veterinarian offices, rainforests, and post offices.

Now, at age 13, Oscar continues to be pretty focused on food.  And while he frequently demonstrates sneaky behavior (with food and other items) he's not routinely stealing. Not yet, I remind myself often.  Oscar's pre-occupation with food is not something we can expect to improve, and will almost definitely worsen.

We have an elaborate "food security" plan that we follow that helps alleviate anxiety and behavior issues that arise from uncertainty.  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 food. No doubt he will get what he needs. We follow a schedule of breakfast, snack, lunch, 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 keep 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.

Several years ago, back in elementary school, one of Oscar's teacher asked me how we did it.  She knew we kept food out of the environment -- he'd been at the school for 3+ years at that point and they got it.  No extra food, not even for birthdays or holidays.  But that day she asked if we also screened every book he read.  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.

But, later that week, the math homework reminded me how impossible it is to police the food references. The food yes.  We absolutely police the food and make sure that Oscar is always in a food secure environment.  But those references are impossible.

Here are the math 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? Who needs 18 cookies? What about buttons, or pennies?

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


And, because pictures are fun and far more interesting than long blog posts about food security, here are some ridiculously cute photos of Oscar swimming with dolphins, taken around the time I originally wrote this post.  






*10/2009 post, somewhat edited and updated.

Friday, May 9, 2014

PWS Awareness Day 9: On Doctors and Buses

Minutes after Oscar was born, our doctor proclaimed that Oscar would never ride the little yellow school bus.  His muscles were weak, but his mind would be fine

I admit I took solace in his words at the time.  But it didn't take long before the full meaning and insult of his words sunk in.  And when Oscar finally did ride that little yellow bus I wanted to send him this photo and tell him just how wrong he had been.  That I was proud of Oscar for riding that bus, by himself, home from school each day. (And that he should be careful about what he says to terrified mothers in the delivery room).

We've had to part with a couple of doctors in the past thirteen years. One for insensitive comments like this, another for his lack of willingness to consider the parental perspective.  I love the doctors who light up when they see Oscar, excited to ask him how he's doing. I love the doctors who've done their research but value input from me and Paul.  Thankfully, we've had FAR more of the latter than the former. 

Thursday, May 8, 2014

PWS Awareness Day 8: Reading at Scribd

My awareness raising happened at a podium tonight.  I was honored to be at the Scribd Author Series event in San Francisco with my fabulous writing group the Write On Mamas, reading an excerpt of my essay about skiing with Oscar.  (The full essay, "Slide Show", appears in our newly published anthology Mamas Write.) 
 
As I practiced this afternoon, reading my words over and over, and trying to coax my voice to convey the right amount of excitement at the proud parts, gravity in the scary parts, and levity at the one almost-funny part, I felt really connected to and protective of Oscar.  In my allotted four minutes I wanted convey to the audience why a seemingly disastrous afternoon of skiing was actually one of my proudest moments.  I wanted them to get it.

Six mediocre read-throughs later I found myself hunting around the house for a picture of Oscar to take with me, to remind myself why I am reading a deeply personal essay to a room of strangers.   Again.

I am doing this -- this writing thing, this reading thing -- so that other parents will feel less alone when their baby is diagnosed. So that other parents will know, that even though raising a child with special needs is challenging, there will be joy and celebration again. So that more people know about this crazy syndrome.

Here's that photo of Oscar. I kept it tucked into my book, and peeked at it just before I stood to read.

Wednesday, May 7, 2014

PWS Awareness Day 7: Infant Stimulation

Oscar qualified for occupational therapy starting in the hospital and physical therapy followed soon after.  An early intervention specialist came weekly to our house. 

Pretty soon our schedule was full of appointments and my head was spinning with things I needed to do to stimulate his brain and help him build muscle strength.  Babies learn from from sucking on their fingers, from accidentally batting at the toys hanging near them, from shifting their weight and finding themselves in a new position.  Oscar couldn't do any of these things so we did them for him.

His trunk and neck were too weak to sit upright, so I learned how to support his chin while stroking his back to activate his trunk muscles.  He couldn't lift his arms or legs so we laid him on an inclined wedge and propped up his extremities to help him fight gravity a little easier.  We tied loud bells to the bouncy seat and moved the bar so close that any movement would be rewarded.  We laid him on his side and supported him with a rolled blanket so he could see the world from a different angle. We gently rolled his body back and forth and around, and kicked his legs for him.  We put him on his belly and rested his mouth on his hand so he could explore his fingers.  We placed toys and mirrors all around him. We played classical and jazz music all the time.

We tried our best to help him see and hear and feel the world like a typical baby.  But it was exhausting feeling like there was always something more I could and should be doing to help him develop his muscles and his brain.  So sometimes we just had to let it go, let him sleep too long, let him lie in one position too long and focus on Abe or ourselves.  Finding the right balance, one that can be sustained, is one of the hardest parts of having a child with special needs.









Tuesday, May 6, 2014

PWS Awareness Day 6: Never Full

This is what "never full" looks like:

Oscar's siblings would tell you about the repetitive scrape of metal on ceramic, a spoon chasing the last shreds of cabbage in tonight's soup bowl.  Or the sneaky finger swipes through the cup of yogurt at snack time.  The apple reduced to seeds and a stem.

"I think you got it Oskie," I've heard us all say a million times.


Monday, May 5, 2014

PWS Awareness Day 5: Siblings

Abe met his baby brother for the first time just a few hours after he was born.  We entered the NICU, Abe clutching a huge green stuffed frog under his right arm -- his gift for Oscar.  Dr. Sandhu, the neonatologist, was examining Oscar, checking his muscle tone. He held one of Oscar's arms at the elbow, let go of his fingers, and shook his forearm.  Instead of staying tightly curled in a fist, Oscar's fingers and wrist flopped limply back and forth. I stood there, paralyzed, panicking, not knowing what any of this meant.

Abe saw something different.  "Look Mom, the baby's waving at me!" he said. 

Dr. Sandhu heard us then, and smiling, he waved Oscar's hand once more, making Abe giggle.

Even then I understood the importance of this gesture.  Even then I knew that Dr. Sandhu saw that Abe's relationship with Oscar trumped the need to figure out what was causing Oscar's symptoms.  Even then I recognized that we became a family in that moment. 

Here are a few of my favorite early photos of Abe and Oscar. 



(I can't believe I let a two year old feed Oscar. His suck/swallow wasn't coordinated and he could have choked. Yikes.)