Colorado - Biking!

We're up in the mountains of Colorado this week with family and everyone is excited for the hiking, biking and swimming.  The house we're staying in backs up to Gore Creek and with the windows open we can hear the swift rush of the water over rocks.  The living room looks out onto the mountains, tall pines and colonies of quaking aspens shimmering in the light breezes.  I'm relaxing into this gorgeous setting, allowing myself the break, as next week marks the beginning of school for Oscar, sports practices for Ruby and Abe, and, of course, assessments for an upcoming IEP. 

Abe and Ruby and their cousin A raced down to the creek as we were still unloading cars but Oscar was more hesitant.  I urged him to go find his crocs, to put in just 5 minutes of "explorer time" but he balked and dawdled.  Before long the other kids had found their way back to the house and the moment was gone.  This happens often -- the convincing and readying of Oscar just takes too long and he misses out on the opportunities.

Yesterday we decided to rent bikes -- there's a paved path that winds through the valley for miles in either direction.  It's perfect for family bike rides, short jaunts to the village for lunch, to the hotel for swimming.  But Oscar was resistant.  While the other kids hopped on bikes perched against the metal racks and wound precariously through crowds of pedestrians, Oscar crouched on his heels inside the rental office rubbing his head and crying, "Why do I have to rent a bike, I don't want to!"

"Just try on this helmet Oskie," I pleaded, but none of them felt right. The padding was all wrong.  "It's digging into my head!" he insisted.

My patience waning I stepped outside to referree the other three kids while my sister in law negotiated rates.  Paul took over then, and somehow we got Oscar to at least try the bike Ruby was renting, to see if it was the right fit.  He hated it, of course.

I didn't want to give in.  Oscar can ride a bike, and the paths through these villages are nicely paved and only moderately hilly.  He's negotiated harder terrain at home.  It would be so easy to slip into letting him opt out.  We'd all ride faster and go farther without him.  But that's not inclusion.

So we did what we sometimes do.  We took a break.  We walked the rest of the way to the village for lunch and returned to the bike store a few hours later.  By then Oscar had wrapped his brain around the biking idea. The first helmet he tried (the same one he'd tried three hours earlier) was perfect and so was the first bike.  He happily rode the rest of the way back to the house, with Paul ahead and me trailing behind. 

It'd be easy to say it was lunch that made the difference.  He had been tired from the walk to the bike store, the jet lag, the lack of sleep earlier in the week, but honestly the key to overcoming his resistance was just simply time.  I'm learning that part of including him means allowing him the time to adjust to new ideas, to summon his resources, to process.  Once he does he's often on board, and away we go....!

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!

Oscar's Business

A few days ago a friend contacted me on facebook - she'd heard Oscar had started a dog walking and cat sitting business and wanted to know if he was free this weekend.

"Oscar!" I called to the other room. "Word is getting around! You have another request for cat sitting."

Oscar came out of his room, sporting a wide-eyed grin.  But when he spotted me sitting on the couch, smiling broadly, he narrowed his eyes and studied my expression. I knew what he was thinking - it sounded too good to be true, and this is exactly the kind of joke I'd play on him.

"Wait, Mom," he said, "are you joking?"  A giggle erupted from between his lips.  I'm not sure if he was laughing because he'd thought he'd caught me in a fib, or because he might actually have a new cat customer.  I burst out laughing too which made it only harder to convince him I wasn't teasing this time.

For years now the family has been bugging me to agree to a dog. Or a hamster.  Or a gerbil. (No one has ever begged for a cat, but that might change now!) And then a few months ago money-obsessed Oscar got the idea to start a dog-walking business.  He could earn money for his future* and get to spend time with dogs. He was downright giddy about this plan and spent weeks on his flier, working on slogans and strategies with a few super patient adults at Abe's baseball games.  We took this picture of him with one baseball friend's dog to use on the flier.  Adding cat-sitting to the flier was a last minute decision but has landed Oscar three jobs already.

I had an aha moment during this whole process.  Since Oscar was born we've tried to find ways to help him lead a fun and interesting life, doing the things his peers would do.  It took a year to learn to ride a bike, but now we can go on family rides.  Recently, with help from Abe and Ruby, he's learned to play a few board games, and can sustain a game with a friend without a huge meltdown.  So, I finally realized, just because he can't walk a dog by himself or handle a cat-sitting job alone doesn't mean he shouldn't get to do it at all.  We just have to help him.

This weekend Oscar cleaned out the litter box, re-filled water and food bowls, and played with my friend's two cats.  I saw him working on so many new skills.  When he spilled water it took him a few moments to realize he needed to clean it up, and then went in search of a paper towel, all without consulting me.  When one cat was wary of him he sat on the floor next to her hiding place and talked gently to her.  He learned how to engage them with their toys, something that doesn't come as easily to a kid with compromised social skills.  And then tonight I had him dictate an email to my friend with a summary of the weekend.  He struggled with articulating his thoughts but finally managed a heartfelt note.

None of this has changed my mind about getting pets of our own right now (sorry kiddos!), but it did make me realize that these jobs are far more than "just" indulging Oscar's interests and helping him save for the future. 


*Oscar's future dreams include getting a degree in zoology, marrying his girlfriend, buying a big house, having three children and five dogs, and purchasing and running a zoo.  (Helping him reconcile these dreams with a more realistic future will undoubtedly be one of the most challenging aspects of parenting we'll face.  But we'll figure it out, right?)

Finding My Way Back...

I've been trying to find my way back here for months. Yes, months.   But it's so hard (for me and my compulsive nature) to jump back in without relating every minute detail since last June when I fell off the blogosphere.  

Last June.  Last June when Oscar graduated from our amazing school, he in his giraffe tie, me in my giraffe print dress.  Scenes still replay in my mind -- Oscar standing proudly while his teacher honored him, her voice cracking ever so slightly.  Oscar walking through the receiving line of teachers - every teacher since kindergarten - each one enveloping him in warm congratulatory hugs.

And then last August. Oscar's transition to his new school, complete with girlfriend, long but fun van ride commutes, just right curriculum, and thoughtful and talented staff.   I'm still in the "pinch-me" phase. How did we get so lucky, again?  

And the time he played a joke on me, the kind I always play on him.  Oscar made up some fantastical story and tried to get me to believe it, and then burst into giggles when he realized he'd succeeded.

And the hard stuff too.  A couple of months of digestion related stomach pain, sometimes so severe that he couldn't sleep at night and spent hours curled up on the cushions at school.  The time we (and by "we" I mean Paul) piggybacked him down the mountain on skis because we'd way overestimated his mental and physical stamina.  And the time, just last week, right after I returned from a big trip, that he was so outraged that I'd caught him in a lie that he tantrummed for two hours -- screaming, pacing, stomping, ranting until he was so exhausted he climbed in to bed to rest and didn't emerge for yet another hour, still fuming.  It was terrible, but I can already tease him about how at one point he yanked open his bedroom door and screamed:

"See, THIS is why I don't miss you when you're gone!!" 

And I didn't even get to those other two rascally kids who live in this house.  There was so much to write about these past months and I poured most of it out in my Tuesday morning writing group and left it there, raw and ignored.

But those stories will come out. I just need to get started again, right?

Right. 

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.