Saturday, May 31, 2014

PWS Awareness Day 31: Wrapping Up May (and a Giveaway)

I did it!  Thirty-one posts! 

I really had no idea what I was getting into back on May 1st when I somewhat spontaneously decided to join the chorus of parents posting daily on Facebook in honor of Prader-Willi Awareness Month.  I stayed up way too late to finish posts. I fell behind on the bills, the paperwork, the remodel decisions, the laundry.  I forgot to answer a few emails.  But it was worth it.

Thank you to everyone for reading, and for the comments and encouragement.  I'm diving back into the book project now -- but am planning on posting here at least weekly.  Sign up over on the right sidebar to get the posts emailed to you directly.

In the meantime, if you are interested in reading more I do have an essay in the newly published anthology Mamas Write: 29 Tales of Truth, Wit, and Grit.  Our twenty-five contributors share stories from their lives as writers and parents....beautifully written stories that will pull you in with their authenticity, strength, and humor.  (Full disclosure: as one of the editors I might be slightly, but only slightly, biased.)  If you are interested in a copy, leave a comment here and I will do a random drawing. 

And, with that, I'll bid farewell to May wtih a few pictures from a wonderful four days in Gualala last Fall.  I'll always remember that vacation for how normal and relaxed it all felt -- long walks along the coast, football and soccer on the beach, yoga on the deck.  We read aloud, and we played games. (Oscar was a pro at the card game Pit, winning far more than everyone and reducing us to giggles with his enthusiastic bidding.)

 









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.