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.

Yosemite

Oscar left on a 5-day field trip to Yosemite on Monday.  (He’s a 7^th grader now at a small school for kids with learning disabilities about 20 miles from home.)  Way back in October when the teachers asked me whether he’d be going I felt like the question was theirs to answer.  Did they feel like they could support him there?  The food part is easy – three meals a day and a strict  “no extra food allowed” policy.  No gum, no candy, no granola bars in the backpacks.  Two teachers who accompanied Oscar's class last year are going again, and they are comfortable (and trained) at dishing up Oscar’s food. But Oscar is slow. Slow to get his clothes on, slow to walk up a hill, slow to get his words out.  His stamina is reduced, he sleeps a lot, and, of course, there are the behavioral challenges that are exacerbated by changes in routine and interrupted sleep.  Were they up for all this?  Oscar’s 7^th grade teacher was surprised that my hesitation was about burdening him.  “I think it’ll be great!” he replied. “I have no concerns,” he added, smiling.

But last week Oscar realized that Paul or I wouldn’t be going along.  He melted down at school, and then again when he got home.  “But Mom, what if I get homesick?”  he managed to ask between sobs.   

Oscar will get homesick - he got homesick the last time he went to camp and he ended up coming home early.  This time I had to figure out how to get him through it.  So I did what I always do in these sticky situations. I created a story that Oscar could buy into.  “You probably will get homesick Oscar,” I started.  “But part of the reason the school does these field trips is so kids can get used to being away from home. That way, when it’s time to go off to college, or move out, you’re ready.”  Sometimes it doesn’t take much to flip the switch in Oscar’s brain, and this was one of those times.   “Really!?” he replied, excited that this trip would help him achieve his bigger goals.  “Yep, and that’s what your (beloved) 5^th grade teacher always said too. It’s good practice.” 

Oscar didn’t mention his anxiety about heading off to Yosemite without us after that.  He helped me gather together the clothes he would need for day-long hikes.  Rain pants, waterproof boots, wool socks, two fleeces, mittens. He chose down-time activities – Harry Potter and The Half-Blood Prince, his dot-to-dot book, his Oakland A’s magazines. He even helped me show his teacher how to inject his growth hormone.  By the time he left he was super excited.  "I can't wait, Mom! I can't WAIT!"  Fingers crossed that he’s exuding the same enthusiasm when I pick him up tomorrow!

Ah, Summer

Doesn't he look relaxed?

Oscar's school let out on June 28th, finally, a full three weeks later than he's accustomed to.  He managed the longer school year well, only bordering on tears when certain siblings taunted him with their beginning and mid-June releases.  He bought into the story that the school year was longer so they could fit in all the amazing field trips, including an all-school "olympics" in a beautiful redwood park, a class trip to a local beach and pool, and a mini golf excursion.  (Yep, it's a fun school!) 

Oscar thrived this first year of middle school.   His teachers were energetic and creative and he came home pumped up about everything from Chinese dynasties to salmon spawning.  He was placed in slower-paced math and language arts classes since his processing speed rivals that of a snail.  But he was a champ and worked hard, cheering on his classmates too through tricky problems in math and occasionally taking a lead in History discussions. 

And this was O's first year without an aide. With great food security, a small environment, plenty of structure, many layers of academic and social scaffolding, not to mention a whole emotional wellness team, he managed beautifully. 

Now we're relaxing into summer.   Oscar begged to see his learning specialist over the summer, so he is there twice a week working on writing and math, his favorite.   He's taking swimming lessons again and boy do I hope this is the year he nails side breathing so he can swim in the deep end and get across the pool without touching down.  And he's reading, a ton.  The kid who couldn't "walk and talk" is now walking and reading.

(Yes he's carrying two Harry Potter books.  Didn't want to be without book 3 when he finished book 2.)

Oscar and Alyssa (part 2)

(I'm finally posting the second part of this story...)

"So, Oscar," I asked at dinner that night, "how did you know you had a crush?  Do you feel different when you're around Alyssa?"

I was curious if Oscar felt some deep level of connection based on shared interests, or whether it was purely physical attraction -- did his heart start beating faster or did his face turn hot?  Would he even be able to articulate any of this?

Oscar skirted the questions, embarrassed. But I persisted while Abe and Ruby exchanged giggly glances.

"But Oscar, how did you know?"

He looked up shyly, and kept his voice low, hoping his siblings wouldn't hear him.

"Mom," he whispered, "Mom, she told me."  

Ruby and Abe cracked up then, and I too tried to suppress my urge to laugh.  Oscar got all embarrassed and yelled "STOP!" which only made Ruby and Abe laugh harder.  I knew he was smitten with Alyssa - he just misunderstood the subtleties of the word "crush".

But listening to the two of them chatter on for a half an hour last night, a good nine months and several breakups and make-ups later, I was struck with how great Alyssa has been for him.  They really do have a sweet connection and lots of shared interests.  And he can now sustain phone conversations with far fewer awkward silences --  he says "yes" and "uh huh" instead of just nodding into the phone, and he's getting better at asking Alyssa questions. 

Paul and I used to pass him post-its with prompts like "ask what she did this weekend" or "what kind of music does she like?" but he's even needing those less.  Last night I watched him settle comfortably into our squishy brown chair and chatter on about his dog walking business and then they giggled while Alyssa told him about the moth she was chasing around her house. The line got silent when Alyssa went to feed her fish, but Oscar waited and the chatter started up again.  

I know he's thrilled he has a girlfriend, but I'm just plain happy he has such a close friend. 

Oscar and Alyssa (part 1)

Last night, as Paul and I were scrambling to get dinner on the table, the phone rang.  We didn't have to look, we knew who it was.

"Oscar!" Paul shouted, "that's probably Alyssa*! You should answer it!"

Alyssa is Oscar's girlfriend. They met in the hallway outside their classroom on the first day of middle school way back in August.  Oscar had been standing there smiling awkwardly at his new classmates when Alyssa came bounding around the corner.  Her brown curly hair and wide grin immediately captured his attention.  Oscar turned to her with a smile, stuck out his hand and said "Hi, I'm Oscar" just like we'd practiced in the days leading up to the start of school.  Alyssa smiled back brightly, her sparkly brown eyes locking with his. 

"Mom, mom, I have big news!" he said as he got in the car that afternoon, looking sideways over at Ruby.  He didn't want her to hear, but he couldn't contain his excitement.  His eyebrows danced and his lips were clamped shut to prevent him from blurting out the news. We were still in the school parking lot when he couldn't hold it any longer.

"I have a crush!" he whispered.  "I'll show you when we get home, she gave me notes!" Sure enough, his backpack was full of heart-and-flower-laced love notes and Alyssa had scrawled her phone number at the bottom of one in red crayon.  

Oscar's had many crushes before, starting in kindergarten, but he's never admitted it, despite our endless probing and teasing. Last year he would blush whenever Kaley* came near him and he started standing so close to her in PE that his aide and teacher intervened.  But he never admitted that he liked her.  So it was rather curious for him to announce at the end of the first day of 6th grade at a new school, that he already had a crush.

I had to learn more.

(To be continued)


*Names changed, of course!

"S" is for Siblings (Write On, Mamas!)

I'm over at Write On, Mamas! today with the "S" post in the A-Z blog campaign. Be sure to check out all the letters of the alphabet and poke around the site a bit.  You will love the writing and the clever photographs that accompany each letter.

I finally joined Write On, Mamas! a year ago when my then new friend J practically dragged me. J won't remember it that way - she'll just remember me asking to carpool with her or something.  She didn't know then that every few months I'd pull up the website for the previous incarnation of WOM and think about emailing the coordinator.  I did a lot of thinking. I never emailed.  I never went to a meeting. But now I stake out those Sundays, leave my family in the midst of important Sunday afternoon activities (like baseball watching and weed pulling) and get myself over to Marin.  I find a spot at a table and I write, surrounded by other mamas just trying to get some words on the page.  After an hour or so we pull our chairs together for announcements, and then we are joined by our guest speaker. Last month we were treated to a panel of our own members sharing thoughts on building a platform.  And we also cheered on a few writers who auditioned for Lit Crawl in October.  I was blown away by the writing, and also by how much writing these women squeeze in between all the mothering and, in many cases, working.  I refuse to consider what took me so long.  I'm just glad I finally got there!

The Play

Oscar is graduating from fifth grade TOMORROW and I'm hell-bent on writing about these days, these last days of Oscar at his elementary school.  Every time someone mentions graduation, tears pool on my lashes, my throat tingles and I feel my inner core start to dissolve.  

Pictures won’t be enough to capture and savor these precious moments.  So, this week, while I was frantically trying to find a special tie for Oscar to wear (preferably a giraffe tie), a dress for me to wear (wait till you see!), while I attended his last publishing party, helped him gather materials for Monday’s fourth grade vs fifth grade egg drop contest, and assembled pictures for his graduation tribute poster, I also did attend my writing group, compelled to write, to get these moments down.  Here’s what I wrote about the fifth grade play at last week’s writing group: 

Two weeks ago you performed in the fifth grade class play – three (three!) one-and-a-half-hour shows with countless transitions on and off the stage. Seven speaking lines!  I knew you played the bumble bee – I’d taken your black sweatshirt and wrapped the body with wide strips of yellow duct tape while you stood with your arms straight out to the sides and turned slowly so I could keep your stripes straight. I’d stolen one of Ruby’s headbands and twisted black and yellow pipe cleaners around it and glued a black pompom on the ends to make your antennae.  I’d practiced your lines with you over and over - at the baseball games, in the car on the way to school, and at the breakfast table - until you could say them without stumbling.  I figured you’d been assigned that part because the buzzing would mask your stuttering, which I thought was brilliant.  I didn’t know though that there were other animals in the play.  I thought you were the token one – that you’d been relegated to this role because you love animals and because it was all you could really manage. The entertaining side show -- a show I would thoroughly enjoy!

But I didn’t know that you also played a student and had many other non-speaking gestures and transitions to manage.  I didn’t know that you would hastily sit down when the “teacher” came on stage and snapped you all to attention. I didn't know you would keep your head down and pretend to scribble in your journal as if in writing class. I didn’t know that when you came back on stage as the bumble bee that you’d flap your hands down low next to your hips to imitate your wings. I didn’t know that your friends would gently touch your arm to prompt you if didn’t jump in right away with your line.  I didn’t know that you really could act!

I sat in my seat in the third row at that first show on Friday night and watched you walk onto the stage in that first scene.  I put my hand to my forehead to press away the tears of joy, just the way you did last month, after that marathon IEP, when I finally told you that you’d been accepted to that awesome school* for the Fall and that Daddy and I would do our very best to send you there for middle school.  (You were so confused by those happy tears – you’d only ever cried when you were sad and we stood there on the corner hugging, me crying too then.) 

On Friday, I pressed and pressed, just like you did, but I felt the tears prick at the corners of my eyes anyway, just the way they did at that musical performance back in kindergarten. Do you remember that performance? There you stood, up on the stage with your classmates.  Up on stage with your classmates! There was no adult helping you.  You mostly faced the audience.  Sometimes you sang!

Someone took a photo of Daddy and me watching that kindergarten you and I saw that photo this week while making your graduation poster.  Our eyes are shining, our cheeks are flushed, and our faces are lined with those wrinkles that appear when you are smiling through tears and trying not to sob. 

Over the years at this amazing school I’ve gotten used to you reaching farther than I thought possible.  I really didn’t think you could surprise me with the play. But you did, walking onto the stage like that on that Friday night.  Sure I noticed how you immediately scanned the audience, looking to see who was there and where we were sitting.  Integrating all that information is hard for you but you did it quickly and then switched back into your student role. “Middle School! What’ll it be like? What’ll it be like?” you sang with the rest of the “students”, clapping your hands and moving confidently across the stage to your next spot.

I looked around the audience then. Daddy smiled and wiped away a tear.  Somebody gently touched my shoulder. Someone else nodded to me with a smile.  I wasn’t the only one noticing how far you’ve come.  And then the tears flowed harder.  Just look at you!

* a small non-public school for kids with learning disabilities where all the therapies and structures are integrated into the curriculum and food security is already in place!

The Walk

A few Saturdays ago we held our 11th Annual Walking for PWS event in Northern California.  Oscar was only 18 months old when we held that first walk and I remember how Paul carried him on his shoulders for most of the two mile loop around the Berkeley Marina. (I remember thinking it was good trunk work for Oscar to hold himself upright like that -oh how we start to think like therapists when all we do is take our kids to therapy.)

In the years that followed Oscar was eventually able to walk the entire 1.75 mile loop, and then, later ride his bike.  The Walk became a way to keep track of those hard-fought milestones and we celebrated with our PWS community, as well as our friends and family that joined us, that Oscar was able to do just a little more each year.

This year though marked a different milestone.  Oscar's class is graduating from 5th grade next week and moving on to different middle schools.  So, at the urging of Oscar's teacher and the director of our school, I invited all of Oscar's classmates and their families to join us for The Walk.  I hesitated to extend a group invitation like that because, as I keep saying, these teachers, families and their children, our dear friends now, have been "walking with us" for years already -- including and accommodating Oscar, keeping him safe, urging him to join games, listening patiently through mind-boggling stuttering, inviting him to watch a basketball game or go to the movies.  They admonish me for thanking them.  They just don't see it that way.

Nearly 50 people walked for Oscar this year at our new location - Crissy Field in San Francisco. Over half the class was there with their families, along with two families from Ruby's class, three teachers and the school's director.  We made t-shirts with the 5th grade class picture on the back for all to wear.  It was almost too much -- that sea of people wearing "Walking for Oscar" shirts on that clear blue sky day in the shadow of the Golden Gate Bridge. All those people there, for Oscar, for us! I felt my body tighten, not wanting to sink into the moment lest I melt into a puddle of tears. 

Our group was asked to lead off the walk.  I wish I could post the picture of Oscar with his friends and Ruby with hers pausing under the green and white balloon arch that marks the start of the walk but I didn't ask everyone's permission.  I wish I could post the picture of Oscar heading off down the path sandwiched between two pals.  It would show his proud shoulders (but not the slight bounce in his step as he walked off.)

I wish I could share the picture of Ruby and the two boys from her class as they wandered slightly ahead, chatting amicably, looking older than their 7 years.  When Ruby heard that Oscar was inviting his class to come and support him, she wanted to ask the 1st graders to come and support her too.  I sent an email explaining PWS to her class, realizing as I did so that I hadn't really ever taken a moment to formally educate all of those families about PWS and what that means for Ruby as a sibling.  I've been feeding them tidbits for two years now, not wanting to burden them either I guess.  I was so glad Ruby was open to sharing, and mostly that she asked for support too.

I wish too that I could post pictures of the elaborate face painting, our group with the Golden Gate Bridge in the background, the kids playing chase on the banks of the amphitheater, the teachers chatting and remarking on the day.  I'll hold this day always in my bank of memories from these amazing six years.

Here, though, are a few pictures I think I can post:

May (Really?)

I looked at the calendar just now, and was shocked to see it was May 11th.  I mean, on some level I know it's May, but you could have convinced me it was still March.  Not writing - not whipping out a quick blog post, or taking a moment to scribble a few notes on a post-it - seems to make time speed by even faster.  Memories blur and are then lost. Suddenly we are in May.

On those rare days when I do pause, even just for a minute, to jot down a few words about the proud look on Oscar's face when he tells me he was invited to the movies, or Ruby's sweet giggle when I offer to push her baby stroller, our crazy-paced life slows for a second. Writing allows me to gather and relish memories that we can then carry forward with us as life's pace picks back up.  I have trouble remembering this.  I am going to keep trying.

Here are the things I didn't write about this month:

Oscar choked on a hot dog at a baseball game and I had to do the Heimlich.  Very scary, especially when the water I had him drink (bad idea, don't do this) gurgled and then ran down his chin while he stood there, frozen, his eyes fixed on me.  This incident was a blatant reminder that all the choking warnings with PWS are true. I realized too that it's not only the rushing to consume unauthorized food that leads to choking in PWS, but the lack of muscle tone to cough or encourage food to come back up.  It was four weeks ago now.  He's ok.  I'm still shaken.

On that same night I found out my essay was not chosen as a finalist in the Children's Hospital Notes and Words contest.  I was not surprised -- I didn't have as many votes as the lead essays and it would have been a difficult essay to showcase.  And yet of course I was disappointed.  Over the past few weeks I've continued to hear from people about how deeply they were affected by it and this is spurring me on to write. 

I am writing, a tiny bit, with a writing group I just joined. We sit in someone's living room - today it was mine - and write to prompts for random amounts of time over two hours. Five minutes, twelve minutes, or longer when I forget to set the timer.  And then we read what we wrote. No commenting, which I find so difficult because the writing is beautiful and I want to say that. It's fun and it's hard and it's exactly what I should be doing. 

What I am also doing, but don't want to be doing, is dealing with Oscar's IEP.  We had his triennial IEP meeting back in December and I finally signed that document last Monday, the morning of his 3.5 hour transition to middle school IEP meeting.  I don't write much about his IEPs here because I don't want to discuss anything that is deemed confidential or could in any way hurt his case.  I can say that I truly believe that everyone sitting around the table - all 16 of us - wants what's best for Oscar.  But the law doesn't mandate "best", it only mandates "appropriate".  And so I spend a lot of time documenting what constitutes appropriate for Oscar.  I'm hopeful that we will come to some agreement on the appropriate placement (which in my opinion is also the one I consider to be the best) but sadly it won't be without many many more meetings. 

Meanwhile the school year is rushing to a close and I am thinking daily about the ending of Oscar's elementary years in that sweet and supportive school. I will be writing about that a lot here, plus our amazing Walk for PWS last week, and my friend and teacher Kate Hopper's newly released book Use Your Words: A Writing Guide for Mothers.  So exciting!

I won't let these extraordinary moments pass without getting them on paper, but I may have to use those post-its (or the back of my hand) as a temporary measure till I can transfer the words here.

The Power

Abe's not the only sibling struggling right now. Ruby too, in her own way, is coming to grips with PWS, but instead of retreating she's started pick-pick-picking on Oscar.

"Chew with your lips closed!"

"Stop sticking your elbow into me!"

"Hurry up Oscar, it's your turn in the game!"

Honestly, she's noticed my (decidedly more gentle) reminders and is imitating me with an added punch.  I'm working with her on just taking care of herself and not worrying about Oscar, but that's not in her nature.  She's highly attuned to her environment and just can't turn off the noticing.

Last night at dinner was no different. We were at our very favorite Mexican restaurant and the three kids were squeezed together on the bench side of the table. Ruby balked at having to sit in the middle and took out her frustration on Oscar.  Elbows! Lips! Stop squishing me!

Instead of reprimanding Ruby again I decided instead to compliment Oscar.  "O-man", I said, "I want to honor you for putting up with all this criticism day after day and not letting it phase you one bit".

I reached across the table to give him a fist bump. He returned the bump with a triumphant smile and said, so eloquently,

"Mom, I have two choices in these situations.  I can ignore her, or I can walk away.  When I do either of those two things the power bounces back to me."

"WOW", I said. "Where'd you learn that?" hoping it was something I'd said in some moment of brilliance that I'd clearly forgotten.

Nope - it was one of his amazing teachers. Of course.

Costa Rica

We’re in Costa Rica with Paul's family this week, visiting my sister-in-law who is living in Monteverde with her daughter while on sabbatical.  While all of us were excited to get here, Oscar was especially ecstatic about this trip.  As a little guy he was obsessed with rainforests and has been begging for years to visit one.  I reminded him yesterday that his preschool teacher turned the classroom’s play kitchen area into a rainforest on his behalf. (He doesn’t know this was also because otherwise he would have spent the entire school day in the kitchen, making plates full of plastic fruit mixed with all sorts of forbidden foods like pink frosted donuts, three layer chocolate cakes, and miniature fake fries.)

Oscar’s been so engaged and energetic here in the rainforest.  He’s the first one to volunteer for any walk – to Quaker Meeting, a mile up the big hill to breakfast, an extra two mile loop in the local reserve.  On Sunday he hiked the steep, rocky, and, at times, slippery trail to the impressive San Luis waterfall.  He hikes slowly in the back of the group with whichever adults feel like strolling, while the other kids race ahead, bounding up hills and leaping across makeshift bridges. Oscar doesn’t leap or bound, but he does just keep on going without complaint.  When we got to the waterfall he happily squatted on a damp rock overlooking the deep pool and watched his dad, cousin and brother jump from the face of the rock into the water right next to the misty fall.  I don’t think he ever thinks about wishing he could follow in their footsteps, but sometimes I do.  Not for my sake, but for his.  What would it be like for him to be out there jumping too?  What would his dogged determination look like in a body that complied? Or, I often wonder, are his determination and positive attitude also a result of learning to persevere through the challenges that PWS presents?  I’ll never know of course.

On Monday we went to Selvatura, a nearby adventure and wildlife park.  Oscar insisted on visiting every exhibit - he toured the reptile house, saw the hummingbirds, and visited the butterflies and insects.  And, amazingly, he agreed to a ziplining tour through the rain forest. I didn't know, and neither did he, that it would be thirteen ziplines through the rainforest canopy that would take 2.5 hours to complete.  I had chosen the hanging bridges walk instead but arrived at the last platform in time to wait for Oscar and the rest of our crew to complete the last zip. I stood there waiting, pacing, hoping he'd had fun. Hoping it wasn't too strenuous or stressful. Hoping we hadn't stretched him too far.  Hoping he and Paul hadn't had to hike back on the trails instead.  I looked out across the valley in search of the starting platform but it was hidden among the trees over one kilometer away. Another family was waiting too, and we took turns checking the cables for vibration, our only sign that they were on their way. When Oscar finally zipped in to the platform he was waving and beaming.  “Mom, mom it was so cool -- we were so high up in the trees!"

Here he is mid zip. (I was relieved to learn he did every zip with a guide).

And here he is beaming. (You can't see me, but I'm beaming too)

Exsanguination

Exsanguination -- why, you are wondering, is this word spinning around in my head?  Exsanguination is the bonus word that Oscar correctly spelled on today's spelling test. Really.

I stopped by school this morning to drop off Ruby's car seat and ran into Oscar's teacher. Her huge smile forecasted good news -- I'm not sure what I was expecting but it wasn't this.  My brow furrowed in disbelief as several thoughts raced through my mind.

He must have seen the word before.

Nope. 

Someone must have told him. 

Nope.

Did he cheat? 

No way. (I feel horrible that this even crossed my mind)

I looked over at Oscar's aide who nodded, smiling, confirming.  By now the director of the school had joined the conversation and the marveling.  She, like all of Oscar's teachers, has been celebrating his successes with us since kindergarten.  (In second grade, when Oscar was reading his poems aloud at the class publishing party, the poems he had written himself, her eyes were wetter than mine.) 

As we discussed what exsanguination actually meant, Oscar bounced over and said, "let me see if I can do it again."

Without hesitating he rattled off the letters -- E-X-S-A-N-G-U-I-N-A-T-I-O-N.

I must have still looked surprised because when he finished he said confidently, "It's easy Mom. You just go syllable by syllable."

Syllable by syllable. Little by little. Step by step. He's so right. It's how he has gotten here.  It's how he learned to walk. It's how he learned to read, and ride a bike, and draw a giraffe. It's how he'll always move forward.  It's how he'll always accomplish his next goal.

I used to be so impatient, anxious even, waiting for Oscar to reach the next milestone.  When he was an infant I compared him to my memories of a precocious Abraham who took his first steps at 8 months. When he was a toddler, I'd pull out the developmental tests and check his progress against skills for his age group.  I'd argue to the early intervention therapist that he could stack those 1" cubes if he had better trunk strength and fine motor control and therefore he shouldn't be penalized on his cognitive scores.  I'd talk incessantly with other parents about what their child could or could not do.  I'd lie awake at night thinking about ways to help him along.

At some point though I stopped charting and calculating and wondering and worrying.  I still supported him. I still taught people how to break down tasks into smaller chunks so he wouldn't get overwhelmed and could feel a sense of accomplishment each step of the way.  I still took him to all his therapies and advocated fiercely for his placement at this amazing school.

But mostly I relaxed into the knowledge that he would eventually get to that next place and that it wasn't a race. Mostly I just started believing in Oscar.

It seems corny now but the very first book we read to Oscar when he was a floppy infant in the NICU struggling to stay awake long enough to feed was The Little Engine That Could.  There weren't too many books lying around the NICU but this little dog-eared copy was a staple and we read it no fewer than a dozen times in his two week stay.  We read it to ourselves as much as to him. We read it to glean hope that he'd someday be able to eat, to walk, to talk -- things we didn't count on in those early pre-diagnosis days. Oscar knows this, and sometimes when we express surprise at his latest accomplishment he reminds us that he is the little engine that could.

He reminds us to believe.

It doesn't get old

I'm not going to tell you about our tantrum-filled weekend with new records set for screeching and duration or my impatience with the slow processing or, for that matter, that just after I posted last we got lice (yes, me too) but that I still managed, thanks to my amazing inlaws, to get away to a fantastic writer's retreat with Kate Hopper and then when I got back Ruby got a stomach bug and now my hands are cracked and bleeding from over-washing and sanitizing and I'm still not letting anyone use the bathroom Ruby is using.  Nope, someday I'll tell you about all that, maybe, but for now I'm taking a class that is going to help me recognize and enjoy some of the small pleasures in my life rather than always fearing the next tragedy (today's back to back pre-dawn earthquakes did not help) or always focusing on what needs to get done or be fixed.  And so I'm going to tell you this instead:

Last Friday, like every weekday at a minute or so past three, I punched in the five digit code on the school's keypad, yanked down on the handle and pulled open the heavy gate.  Parents had already gathered loosely to chat and wait for their children to appear. The younger kids often stand at the top of the schoolyard with a teacher and then come bounding down the slightly inclined blacktop when their parent appears. The older kids walk a little more slowly, self-conscious pre-teens already, and slide up next to their parents rather than rushing into their arms.  Ruby does neither -- she marches or skips confidently towards me and, as she nears, bellows out a request for a playdate with one friend or another.  She balks when I say no, and pushes her flowered lunchbox, her purple fuzzy jacket and her backback into my arms before disappearing once again to climb on the bike rack or giggle with a friend.

Oscar always arrives several minutes later, slowly descending the steps one at a time from the upper classrooms with the other stragglers from the 4th and 5th grades.  He peers down at the crowd from under the hood of his brown fleece jacket.  It takes him a while to process the scene, to find me in the crowd, but his face lights up when he does.  He always has something to report and starts talking without introducing the topic first so that I spend the first few seconds trying to guess what he's referring to.  Or he'll forget to notice that I'm already speaking to someone, usually his teacher or aide, and start his story anyway.

On Friday though, Ruby stayed home sick so I was standing alone at the bottom of the steps when Oscar appeared. His backpack was slung over his right shoulder and in his left he clutched a red three-ring binder containing the script of the play his 5th grade class will perform in May.  With a huge smile he reported that they had just had their first blocking rehearsal.  He and his classmates moved around on a makeshift stage and delivered their lines for the first time.  To my surprise he was beaming. He was excited.

It doesn't get old....this reveling in things Oscar can do, in things Oscar wants to do.  Things that years ago I'd never imagined possible.

These past couple of days I've been listening to the recording of December's triennial IEP so that I can be sure to get all the nuggets of brilliance included in the IEP document notes.  Yesterday I heard his private OT and his neuropsychologist sum it all up beautifully -- because the space-time demands are fewer at his school and because structure and calm are embedded into the environment and because he has excellent food security and because he has formed caring relationships with his peers and teachers, and because his teachers have the patience and training and flexibility to meet his needs, his progress in the five or so years that each has known him is nothing short of astounding.  His OT said that he is one of the most earnest kids she has ever worked with, and that if Oscar is withdrawing from an activity then you immediately have to look at the sensory demands being placed on him.  After all, said the neurospychologist, he is the kid who begged his math teacher to teach him to multiply big numbers. (She did.) After all, chimed in the OT, he is the kid that insisted on learning to touch type with proper finger placement, not just two fingers. (He does.*)

And now the kid who five years ago sat in the lap of his kindergarten teacher sobbing with his hands covering his ears whenever there was clapping, the kid who refused to join his class in singing a song at an all-school community meeting, the kid who hid under the table whenever a challenging task was presented, is excited to perform in a play in front of the entire school and their parents and grandparents and friends. He's excited to learn his lines and remember where to be on stage. He's bounce-all-the-way-to-the-car-and-talk-about-the-play-the-whole-way-home excited.

Nope, this reveling in all he can do, in all that his wonderful school has supported him in doing for nearly six years now, will never get old.


*(We just got his Certificate of Completion from the Mavis Beacon typing program.  Accuracy -- 96%.  Words per minute -- 4.  I love it.)

A Glorious Day

This weekend we hiked (some of us reluctantly, the 49ers were playing!) 1.7 miles to this dark sand crescent beach in the Marin Headlands. Frothy waves crashed against the cliffs creating mini waterfalls down the lowest portion of the rock face. Blue skies, warm sun and still air had us peeling off the three extra layers any savvy northern Californian wears to the beach. We've been here before, in all seasons, and never have we had more perfect weather.

Oscar was one of the reluctant ones but he came around when I reminded him that he could hunt for semi-precious stones among the dark pebbles.

After lunch Paul and I were reading but Ruby and Abe itched for adventure.  They wanted to climb up that crack in the grassy hillside. 

We let them go.  Five minutes or so passed and I realized I could not see them. I figured I should check on them but I wasn't worried. I slowly laced up my shoes and headed across the beach to the base of the hill. 

 

I gasped when I reached the crack.  I had no idea how narrow the space. How steep and crumbly the walls.  I started climbing, and my feet slid on the rocks that covered the trail, rocks that had been pulled out of the dirt walls by previous climbers. I climbed faster - slipping, stepping - up the deep and twisty ravine, calling up on decades-old rock climbing skills to grasp tiny rocks poking out of the walls to hoist myself along.

My heart pounded. My legs shook. I worried about Ruby slipping backwards into Abe and the two of them sliding on rockfalls all the way down. Partway up the climb, the walls grew shorter and I could spot them sitting on the old military bunker looking down over the cliff. I hoped Abe knew to keep Ruby from the edges of the sheer cliffs.

Of course they were fine. But definitely not the best idea to let them hike alone.

The views from the top were breathtaking.

 

We stayed a while just breathing it in.

When I returned to the beach Oscar was eager to show me that he'd found more green and white stones among the black pebbles.

He put them in his pocket for safe-keeping and laid down on the blanket with his book, Diary of a Wimpy Kid.  He read, I read, and Ruby buried her legs in sand. 

Paul and Abe hiked to the top of the peak above the bunkers and around to the next peak.  When I squinted I could just barely make out their slender figures along the ridge before they disappeared. Later, Ruby and Paul hiked up the crack again while Oscar and I read some more and Abe ran along the shore in and out of the waves.

 

The sun edged slowly toward the horizon and still we stayed.  Oscar, who usually begs to leave the beach after an hour, was happy on this rare windless day.  I rested my head against a rock and closed my eyes and let the warm sun wash over my face. 

We considered staying on through sunset and hiking back to the car in the dark.  (If only we'd brought our headlamps and an extra snack.)

 

On our way back we stopped to take this family portrait.  That's me on the left, then Ruby (with her hat and bucket), Paul, Oscar and finally Abe.  

Our glorious day was made even more glorious by an uneventful walk back. No complaining, no whining, no requests for food. Just five hikers, holding hands, chatting, and tossing the football back and forth along the way.

Another Conversation with Oscar about PWS

Every few months Oscar and I seem to find ourselves in one of those conversations about Prader-Willi syndrome and how it affects his life.  I've largely protected him from the scary information and try to frame any limitations he might encounter in terms of what he can do, not what he cannot. 

This morning, as he cozied up in front of the heater in his jammies, I should have reminded him to get dressed for school but instead I casually asked if he'd be interested in a sleep-away camp for kids with Prader-Willi at Camp Harmon this summer.  I think that conversation would have gone fine if I had not, in the very same breath, asked his 7 year old sister if she was interested in circus camp. Oops.  

Oscar's heard all about circus camp from our babysitters who are counselors there.  They've told him about the friendships and the art projects and the circus activities and the big show.  But what he remembers most about circus camp, I finally cajoled him into telling me, is that at circus camp you get ice cream as a reward for doing the dishes. Every night. Based on that alone he has decided that circus camp is for him.

I tried to tell him that I didn't see him being interested in learning to walk a tight rope or riding a unicycle or swinging from a trapeze high off the ground. 

I tried to tell him that I know he likes art projects, but that he also likes animals and basketball and that I was thinking about a camp that had those types of activities.

I tried to tell him that the Camp Harmon was like the family camp we go to every summer except that he gets to go with friends.

With tears brimming and lips quivering he asked why he had to go to a camp with all the "Prader-Willi people".

(I spent the next several minutes lecturing him on people-first language and not calling himself or letting others call him a "Prader-Willi" while he stared at me with a stunned look on his face.) 

And then I answered his question.

"Because, sweetie, at Camp Harmon they understand Prader-Willi syndrome and they know how to keep you safe.  Even if you went to circus camp you wouldn't be able to have ice cream every night as a reward for doing the dishes. Eating all of that ice cream would be dangerous and make you sick."

He formed a little circle with his index finger and thumb and said he'd be ok with only having a tiny bit of ice cream every night.  "I wouldn't need a lot, Mom, I swear."

He calmed down only a little when I reminded him that so many of the kids he looks forward to seeing at our fundraising walks, and support group meetings, and even yesterday at a middle school he was visiting have Prader-Willi syndrome and that many of them attend this camp. He smiled when I reminded him that Emilie and David and Owen would probably be there.  And he looked maybe a little relieved when I told him he didn't have to go to camp at all -- that I was only giving him the option.

I'd like to say this conversation ended elegantly but it didn't.  When I finally stopped talking sadness overwhelmed him again and the tears flowed harder.  So I tracked down his iPod, found his favorite Green Day album and plonked the headphones on his ears.  And I hoped that the abrupt transition to something he loves would distract him enough so he could get ready for school. (It did.)

We'll revisit this conversation again soon I'm sure. As Oscar heads toward adolescence he will undoubtedly notice more differences between himself and his typical peers.  He will have more questions. There will be more tears.

I am hopeful, though, that the opportunities he will have in life will always be meaningful and satisfying, even if not exactly the same as his typical peers.  I will insist.

Wordly Wise

Of course, the day after I posted on Hopeful Parents about Oscar's recent amazing flexibility, maturity, and participation, it all fell apart.  He fell apart.  His processing speed slowed. His anxiety skyrocketed. He started asking a zillion questions in his high-pitched "emergency voice" and became increasingly inflexible about everything from socks to family outings.  By 9am on Sunday he'd already had two big tantrums and Paul and I were scheming about forcing a morning nap. 

We never know what causes these swings in behavior and function. Maybe it was the interminable plane ride home from the east coast on Thursday. Or the jet lag. Or anticipation of school starting back up. Or post-holiday blues.

So I was surprised to hear that he actually had a good first day back to school.  And even more surprised when the first thing he did today when he awoke from his nap was get started on his vocabulary homework.  He even forgot about snack.

O's class uses a 5th grade Wordly Wise vocabulary and reading comprehension workbook. It's a stretch for him, but he's keeping up far better than we'd all anticipated. Usually the first couple of exercises with the new set of words are challenging.  Until the words are ingrained in his brain (darn working memory issues!) he has a tendency to get overwhelmed and shut down.  I've been working with him on developing strategies -- like trying the words one by one until he finds the one that fits -- before overwhelm strikes.

This afternoon, though, he pulled out his workbook, grabbed a pencil, squatted on the living room floor and banged out all ten questions in his Wordly Wise in what seemed like five minutes flat. He didn't ask me any questions. And he got them all (mostly) right.

 And then he immediately asked if he could have his screen time.

(When oh when am I going to remember just how motivating screen time is and use it more strategically?)

A Rare Tuesday

It's a rare rare Tuesday -- no baseball game for Abe tonight.  No dinner with friends. No meetings about teen alcohol prevention, no science fairs or school concerts. No soccer practice or music rehearsal. And so we are home. Oscar is napping and I'm making dinner for the first time in over a week. 

Ruby made fruit salad, cubing apples and oranges and bisecting tiny frozen blueberries till her fingers turned blue. She topped the salad with sliced almonds and divided it into two bowls - one for her and one for Abe. They sat at the breakfast table and chatted and made silly sounds while I scrubbed carrots for the stew.

Then Abe tuned the little toy guitar he got when he was two and handed it to Ruby. He picked up his own guitar and they strummed together, Abe stopping every couple minutes to reposition Ruby's still chubby fingers on the frets. And now they are playing a board game. Abe is explaining the rules to her in a fake British accent and she is giggling and hopping like a frog in the orange jumper that she's wearing with purple leggings and wool socks.

I love Abe's baseball games. I love the evening sun on my face and the cheering and chatting with friends in the stands. I love watching Ruby invent ball games with other siblings or wheel around on her scooter in the adjacent basketball court. I love how Oscar cheers for his favorite players on both teams, watches the umpires and keeps track of the count.  I love rooting for Abe (who is playing with a cast on his wrist and somehow still contributing) and seeing the energy and excitement he brings to the game.  I love it all.

But I do love a quiet afternoon at home, too.

To Not Have Him (Hopeful Parents)

Another month gone by and I haven't posted a darn thing here.  As usual it is not that nothing has happened, it's that too MUCH has happened and that by the time I process one thing and start to write about it I either get interrupted or a new crisis erupts.

I will tell you that Abe broke his wrist playing baseball at a tournament and that when I saw him crouched on the field holding that limp wrist I jumped up and down on the clangy metal bleachers and screamed every swear word I know. Yep, I'm calm in a crisis.  After a couple of nerve-wracking days of uncertainty over what was broken (or not) we landed with a most fabulous hand surgeon, who thankfully did not suggest surgery, but fashioned a beautiful cast with which Abe can still play baseball. I found myself jumping up and down on a different set of clangy metal bleachers a week later when he hit a single and a triple after switching back to righty hitting (after three games of lefty bunting he decided that just wasn't his thing) wearing the cast.  It's amazing he can play at all, and believe me I asked the doctor fifteen different ways if he was sure he didn't risk further injury. 

And I'll tell you that Oscar, that same weekend, performed so beautifully with the Latin American youth ensemble Los Mapaches, leading the group onto stage confidently playing bombo, a traditional drum made from wood and sheep's skin. He sang out earnestly, played zampona, and did his best with the dances.  After the concert, a member of the adult Latin American music ensemble complimented Oscar on his bombo playing and all I could think was "he doesn't know!"  That man doesn't know that Oscar has a disability and that he worked extra hard to learn that complex beat that might have come easier to someone else. He wasn't just being nice. (If he'd complimented Oscar's dancing I'd know he was just being nice). Oscar idolizes the adult musicians and just beamed up at him emitting a barely audible "thanks".

And I'll mention that Ruby's perseverance and stamina on the soccer field is astounding me.  Before this season she liked soccer, but now she seems to love it and runs harder and longer than I thought she could.  Some parents from her old preschool formed an all-girl team this season and she's so thrilled to be with her old buddies again twice a week.  Last week, after playing for nearly 45 minutes without a goal, her team finally scored against a dominating squad.  The girls, all just 5 and 6 years old, immediately rounded into a joyful celebratory circle, red sweaty cheeks pressed together, and laughed and whirled around. I got all teary-eyed as did my good friend B, not because her daughter scored the goal, but I think because like me she saw in that spontaneous celebration how our girls are already understanding perseverance and teamwork and friendship on such deep levels.

So that's a slice of our month.

Today is my day over at Hopeful Parents. I posted an essay I'm working (or should be working on) that I adapted from a blog post here a year or so ago. 

Rowing

Oscar's scoliosis has increased again -- he's now up to a 30 degree curve.  I know I've written here before about the various opinions we've received about how to treat.

Brace? Surgery? Exercise? Ignore?

Our main orthopedist - the one in San Francisco who always takes the time to talk to Oscar about their shared interest in basketball -- has been telling us since Oscar was three that rowing would be great for Oscar's back.  I didn't think a three year old who was just learning to pedal a tricycle could row, and neither honestly did he, but he did suggest therabands and tug-of-war and all kinds of other things that engage the back and core in the same way.

Well, we didn't do any of it.  We have done horseback riding in the summer, and swimming (which he also recommends) and various other things, but nothing consistent.

At this last appointment Dr. Gray gave me the choice -- brace again or drastically increase the exercise and see if there's improvement. He said that he treats dancers with scoliosis whose curves increase when they get injured and then improve as soon as they start dancing again. He believes in strengthening the muscles around the spine to help it align which is why we started seeing him in the first place.

And of course he recommend rowing, again.  I took Oscar to check out a WaterRower on Saturday. Oscar LOVED it. He quickly figured out the motion and then did not want to get off.  He talked about it for an hour afterward -- about how strong he's going to get and about how fun it is.  Ruby loved it too, which is great because she too has low trunk tone.  Honestly, we all need the extra core and upper body workout so I'm really excited. The machine gets great reviews, stores easily (perfect for our small house) and looks nice.  An added bonus -- the swishing of the water circulating in the drum is very soothing!

We're going to rent to start, just to make sure it doesn't stay folded up against the wall unused despite our best intentions. 

Hawaii

We returned from Hawaii exactly a week ago tonight, and yes, it's taken me this long to post! The trip was in honor of Paul's parents' 70th birthdays and so we were there with them, Paul's two sisters and our niece -- and had such a wonderful time.

We stayed in condos overlooking a cove just around the corner from Napili Bay and enjoyed this amazing view from our balcony.  I loved falling asleep listening to the waves knocking against the rocks, and, a whole week later, I still miss the sounds of the water and breezes at all times of the day.

We went to a luau with the men and kids wearing these matching shirts and dresses.  (Notice that I'm hidden in the back in my boring brown dress). We all felt a little silly but it was fun.  Abe enthusiastically responded to the call for volunteers to learn the hula dance up on the stage, Ruby took dozens of pictures of the dancers, and Oscar was wide-eyed and keeping the beat with the drummers all evening long. 

We realized (thanks to facebook) that old college friends were staying just up the road from us and so we enjoyed an hour reminiscing over a glass of wine at sunset on a gorgeous point separating Napili from Kapalua.

We have at least five pictures of Oscar wearing this hat -- is it Paul's or Grandpa's? I'm not sure, but I think it looks best on Oscar.

Oscar wasn't so excited about getting into the ocean (except for snorkeling) but he swam laps in the pool, and then cozied up in towels on the pavement afterward.

We tried surfing, and I thought I'd be really good, but I really really wasn't. Abe did well, and so did Paul's sister and my niece, and Paul too actually. Really, everyone but me seemed to get it.

We snorkeled nearly every day, exploring most of our favorite spots from years past.  We swam with the turtles in the cove, and drank wine on the "grassy knoll" overlooking the cove at sunset.  We boogie boarded (even backwards)...

gazed out at the cove and drew pictures...

...and built sand castles.  Oscar started and finished a castle all by himself one day with no help or suggestions from anyone.  (Sometimes I don't realize how much help, or rather how consistent his need for help is, until he does something completely independently.)

 

Can you see it? He's pretty proud.

And Paul, Abe, and I read most of the Suzanne Collins Gregor the Overlander series. I'd brought lots of books about writing, a memoir or two, and one novel, but I didn't read any of those. Instead I got completely sucked into this five volume series and only finished last night.  I loved diving into a wildly different world, and then discussing plot and character development with Abe.  He says, by the way, that the Hunger Games trilogy is better, so that's what I'll read next.

I found, though, that despite the glorious setting and fun adventures, that I couldn't escape my anxiety in Hawaii. The breathtaking views, warm trade winds, crashing waves and the sugary sand were all incredibly soothing to me during the day but I really struggled at night. I woke in the wee hours and could feel the panic start to fill my head. I practiced my breathing and focused on comforting images but the stomach pains and racing thoughts persisted.  (Our mediation with the school district is on Wednesday and I can only assume that thoughts of that meeting were invading my calm.) 

On our last afternoon, I sat on Napili beach and concentrated on the contented calm that filled me in that moment as I breathed in the swaying palms, shimmering water and billowy clouds.  I promised to start making some changes to help reduce my anxiety and feel more fulfilled no matter how busy and stressful our days are sometimes.  I need a daily practice.  I don't know yet what that looks like, but this photo brings me hope that I can figure that out. 

 

Aloha!