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!

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.)

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.

The Beginning of a Long Conversation (Hopeful Parents)

I'm over at Hopeful Parents today (!!) trying to answer some questions Oscar has about disability.

Come check it out, and stay and read other entries too. 

My Baby Rides the Short Bus

I finally got to listen to last Friday's KQED Forum hosted by Dave Iverson with guests Shannon Des Roches Rosa, Jennifer Byde Myers and Sarah Talbot talking about their lives and contributions to their new book:

My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities

I highly recommend you listen to this:


Whether you have a kid with special needs or would like to understand or support a family who does, this is a great show.

And then go buy the book of course!

You can also follow Shannon and Jennifer's blogs, like me. (And who wouldn't like to be just like me?)

Also, due to popular demand, I finally installed an email feedy thing.  Enter your email address in the little white box down on the right hand side to get a very nicely formatted email whenever I post.   (But don't forget to come back here to leave your comments!)

Skiing

We're in the mountains for a few days of skiing.  The blue skies, tall green pines, and soft mounds of white snow blanketing the hillsides fill me with a much needed calm.  Today from the top of the lift I could see Lake Tahoe, sparkling blue and surrounded by snow tipped peaks. Paul can point to each peak and tell me where we have skied and where we have backpacked and where we have hiked, but I am happy to just stand there in silence and appreciate the raw beauty.

We often come to Tahoe with Paul's parents to ski this time of year.  We skipped last year because Abe broke his arm so badly in November '08 that he still wasn't medically cleared for skiing last February. It's been two years since any of us have been on skis. 

Two years ago, at age three, Ruby could barely shuffle her skis along. This year she couldn't wait to get out there. She coaxed Abe into her room right after breakfast yesterday and enlisted his help pulling on her ski socks and long underwear.  She started the morning skiing between Paul's legs and then graduated to wearing a bright red harness around her chest.  Paul held the reigns from behind and she skied out ahead, falling frequently but also learning to shift her weight slightly for turning. She's far from skiing independently but her wide smile, contagious giggles and enthusiasm foretell years of skiing ahead.

Abe now skis the black diamond runs with Paul and Grandpa. He races down steep terrain and through clusters of trees with an aggressiveness that borders on recklessness.  When he got home yesterday he collapsed in a cushy chair by the window and just sat.  He was sated. But tomorrow I know he will be the first one dressed and ready to hit the slopes again.

Oscar started skiing when he was six years old.  Skiing was one of those things I'd crossed off the list for our family.  When Oscar was diagnosed with PWS I felt my world collapse around me leaving only faint paths in a field of craters.  Family ski trips sunk into one of the craters, along with Christmas cookie baking, parties with buffet tables, family backpacking trips, and a million other things I'd taken for granted until then.  As time passes, many craters have filled back in -- things I'd erased have re-emerged as possibilities. Perhaps not exactly as I had imagined them, but often close enough.

Disabled Sports Far West made skiing a possibility for Oscar.  We signed him up three years ago for his first series of lessons, not knowing how it would go.  Besides having rather low trunk tone, low energy, balance and motor planning issues, he's also prone to anxiety, can be rather rigid, and is not exactly fond of being cold.  On the rare occasions we are somewhere with snow he's proven to be a reluctant sledder and not so into snowball fights.

But he loves to ski! Disabled Sports has all sorts of adaptive equipment to accommodate skiers with a wide range of physical and developmental disabilities.  Yesterday a very young girl who cannot stand independently was skiing with a walker type device.  Wheelchair users are accommodated with monoskis, and some skiers have two instructors to help with the equipment and encouragement.  When Oscar first started skiing he had a rigid bar connecting the tips of his skis so they wouldn't cross. He wore a harness held by one instructor and steadied himself with a ski pole held across his trunk by another instructor. I'd mentioned his love for animals, so as they inched down the hill they looked for imaginary lions and giraffes among the trees that line the beginner run adjacent to the adaptive ski school. 

The instructors keep detailed notes of each lesson documenting Oscar's motivators, the equipment he used and their thoughts on his progress.  The notes remain in his folder and are reviewed each morning by that day's instructors. I remember thinking that this could easily turn to babysitting -- Oscar would probably be fine doing the same run with the same equipment, lesson after lesson. But each day the instructors challenge Oscar to progress to the next level with minimal frustration and anxiety.  He's actually learning to ski! At the end of his two and a half hour lesson he is exhausted but always seeks reassurance that he can return the next day.

So many of us raising children with special needs write about how frustrating "the system" is. We fight for appropriate educational accommodations, we spend hours in doctor's offices, we attend dozens of meetings, send zillions of emails, and we are buried under piles of insurance claims and paperwork.  Everything is just harder when you have a kid with special needs and so few people really "get it".

Disabled Sports Far West is exactly the opposite. Sure there is a little paperwork to fill out, but just one page and the questions are relevant.  And they read it.  Yesterday I pointed out to the intake person that I had written on the form that Oscar can only have the food and drink that we bring for his snack at ski school. She smiled kindly and said "no problem, we'd already seen that".  It was clear too that they were aware of his anxiety.  His name wasn't actually on yesterday's skier list, but instead of telling me that in front of Oscar, she discreetly called her supervisor over to the back door and they summoned an additional instructor.  Oscar never picked up on the mistake and it was rectified immediately.

Somehow skiing with Disabled Sports is also cheaper.  Oscar gets a private lesson and a lift ticket for far less than we pay for Abe or Ruby at the regular ski school.  And we can use the disabled parking spots right in front instead of walking for miles through the Alpine Meadows Ski Resort parking lot. 

Yesterday was Oscar's first lesson of the year.  Like Ruby he couldn't wait to ski.  I was a little concerned to see that he had just one instructor and no extra equipment this year.  But Oscar's instructor Linnea used a ski pole or her hand to give him confidence and by the end of the lesson he was skiing very short bits on his own.  She worked on weight shifting for turning, calling his left leg "Lion Lefty", and his right "Rhino Righty", capitalizing on his love for animals.

Today's ski lesson was with Clayton, a twenty-something athletic man. Oscar loves young athletic men.  At school he does secret handshakes with the men who teach PE and afterschool and he works harder with them than he does with anyone else.  They are cool and Oscar wants to be cool too.  He responded to Clayton in the same way and emerged from his lesson turning better and skiing faster.  I found out afterward that  instead of looking for imaginary giraffes they spent their time on the slopes looking for "cuties", which, in Oscar's words, are "tallish, youngish girls".  In order to spot "cuties" Oscar had to turn, so turn he did!  I don't know how Clayton knew Oscar was already a little into girls...it's just part of the magic of this ski school I think.  Clayton also got Oscar to agree to ride a different chairlift and together they tried a harder run.

Even though they call it Disabled Sports, Oscar is just a kid here and I think that is what I love best.  Each skier is treated with such respect and kindness and their needs are completely and safely met.  I realized this morning as I was skiing with Abe and Grandpa that I wasn't even worried about Oscar. I'd dropped him off with virtual strangers and knew he was completely fine.

Family skiing is definitely back on the list. In a few more years I predict that Oscar will be riding the chairlifts with the rest of the family. He might be taking the easier way down but I'll do that with him...I can enjoy the beautiful scenery better that way anyway.

Birthday Eve

Oscar's birthday is tomorrow -- November 16th.  He'll be nine.

I remember clearly the night before he was born. I wasn't in labor, but we were headed to the hospital anyway because I was going to be induced in the morning for reasons which aren't so clear anymore but seemed to be more about convenience than concern.

I remember sitting at our computer, awkwardly stationed in the entryway of our two bedroom bungalow, impatiently waiting for Paul to get home from work so we could leave for the hospital. The day, like today, was somewhat warm but grew dark so early as it does this time of year.  I kept turning around in my swivel chair to check if the approaching headlights were Paul pulling up in our '95 green escort wagon.  He finally called to say he had gotten distracted researching baby names (at work!) but he was on his way.

Paul's parents had flown in from NJ a few days earlier to stay with Abraham and even though they were incredibly familiar with our routines I'd written them thorough instructions about Abe's favorite foods, books and parks.  I listed rainy day activities and kid-friendly restaurants. I'd given them the phone numbers of all of our friends, directions to his music class, and probably songs to sing at bed time.  From the length and detail of the list you'd think I knew what was about to happen.

You'd think I knew they would need every last shred of that information.

You'd think I knew that I was going to spend the next night sobbing and clinging to Paul in the narrow hospital bed in the same exact room we'd elatedly shared with our newborn Abraham two years earlier.  In the exact same room, but this time the baby was hooked up to monitors in the NICU a couple of floors up.

You'd think I knew I was going to spend almost every waking hour of the next two weeks in that NICU questioning every pediatric specialist and trying to nurse an inexplicably and profoundly floppy baby.

I didn't. I didn't know anything.

As far as I knew we were going to the hospital to have a healthy baby. He was going to be just like Abe.  Strong. Smart. Perfect. Normal.  (Ahh those words!)

I think of this evening, and about what I knew and didn't know, every time I look at this picture which was hastily snapped as we hugged Abraham goodbye and rushed off to the hospital. I call it the "before" picture. 

Before Oscar. Before PWS. 

Years ago this picture would cause my grief to rise with the speed and destruction of a tsunami.  I'd fantasize about going back to this moment, about being innocent again, about not being burdened by disability.  I don't feel sad anymore when I look at this picture.  But I also don't recognize myself -- I look so young, so naive, that it's almost like I am looking at a different person.

More talk

We're just all about talking about disability here these days.

After dinner tonight, as Abe was empyting the dishwasher, he casually asked me if I knew what the chances were of someone being diagnosed with autism.

I knew it was high, but couldn't remember exactly. "One in 100?" I guessed. "One in one hundred fifty," he told me.

He saw a commercial on TV by Autism Speaks that caught his attention and was wowed by the high incidence. I wonder if he would have paid attention before we read Al Capone Does My Shirts?

Next he asked when we found out Oscar had PWS.  The answer rolls off my tongue easier than my own birthday. "We learned about PWS for the first time when Oscar was just five days old. The diagnosis was confirmed when he was two weeks."

"Hmm", Abe mused. "So he got it after he was born?"

"No, it happened in utero, when he was still inside me."

"So, you did it?"

"Well, kind of, but not really...." And then I launched into a discussion of how my egg had two chromosome 15s by accident and Paul's sperm only had one, as it should.  We talked about how the wrong chromosome 15 (Paul's) got kicked out, leaving Oscar with two maternal copies, and thus PWS.

I told Abe that Oscar would probably not have survived if one of the chromosome 15s hadn't kicked out. He would have had trisomy 15.

A shadow fell over his freckly face and he looked up at me from where he was chucking tupperware haphazardly into the cupboard.

"Wow," he said, "That would have been really sad. To not...have him."

We both got quiet then.  I felt my throat tighten and my eyes well up, again. Because Abe does love Oscar so much. And because I remember that when Oscar was really tiny I was looking for any way out of what I considered to be the horror of PWS.  I remember being pretty angry that the wrong chromosome kicked out...and also that any chromosome had kicked out at all.  Back then I was pretty sure a miscarriage would have been a hell of a lot better than PWS.


Later as I was putting Oscar to bed I read him some math problems that I made up for him today because he had to leave school early and didn't get his homework sheets.  I called it "Zookeeper Math" and there were four word problems on the sheet. We never got around to actually doing them, but I knew he would enjoy hearing them, because, you know, he's going to be a zookeeper when he grows up.

This one was his favorite:

Zookeeper Fred needs to feed the giraffes. He brings 7 acacia tree branches to the giraffe exhibit. But when he gets there he sees that there are 12 giraffes in that exhibit. Silly Fred!!! How many more acacia tree branches does he need to go get?

By the time I'd read all four word problems, Oscar was giggling so hard I thought he was going to have a cataplexy incident.  He hasn't had one in a long time...and they don't worry me like they did when we thought they were seizures. These days they are just a sign that he is really enjoying a joke or a story.

I teased him them. "You love your Mama, don't you Oscar? You love your Mama!!"

Oscar just kept laughing, unable to stop, while I pulled the covers up higher and dotted kisses all over his cheeks and forehead.

Siblings

Abe and I finished Al Capone Does My Shirts last night. A great book with a great ending.  We had a good discussion afterwards too, the kind that had both me and Abe in tears. I spent a good while writing about it here last night, but it's just not appropriate for my blog without Abe's permission. I can say I learned about the depths of Abe's love for and commitment to Oscar....and about how moving onto middle school where no one knows Oscar isn't as straightforward as I would have thought.  He is thinking about his own boundaries and requirements for new friendships.  There was a certain comfort for Abe that came from sharing a small elementary school with Oscar, where everyone knew.  So, even though Oscar isn't at the same school anymore, he's there affecting the way Abe looks at his world.  Of course. I just didn't get it before.

And then today, on the way up the hill to her preschool Ruby started talking about Oscar too. Abe was about the same age when his questions about Oscar and disability really ramped up.  Ruby is annoyed, frustrated, and perhaps even grieving a little.  Having been down this road with Abe, who was angry and sad at age 5, I'm remembering that siblings are processing the disability at their age appropriate level and that, in a way, their grieving is more prolonged because they continue to grieve as their understanding matures. We adults can get the whole picture faster, but little kids grow into their understanding.  For now, Ruby is grieving the brother that doesn't "play farm" with her the way she would like, the brother who talks funny and chews with his lips open.  All I can do is listen, and maybe gently remind her that Oscar is trying, even when it seems like he isn't because everything is just so much harder for him.

Mostly, I want her to know she can feel anything, say anything to me.  Over the years, with a lot of hard work, Abe and I have developed great communication and trust...but Roo is a different kid.  This morning I definitely had that feeling of "here we go again..." but that's not really true. I don't know what Ruby's path to understanding Oscar and PWS will look like.  All I can do is support her along the way.

And of course, I'm looking forward to getting to read Al Capone Does My Shirts with her in six years or so.

Ice Cream

I caved this year and signed Oscar and Ruby up for the all consuming summer-sucking swim team. Well, sort of. Their level is called minis, and it's for kids age 6 and under who can't yet swim across the pool. So it's not really swim team, but swim lessons. Oscar and Ruby need to swim -- it's so good for their muscle strength and not at all taxing on their compromised bones.

It's fine. It would be a lot better if it didn't cost a million dollars. But since I already paid the million, we go. Every day we arrive just in time for the 12:30 call for MINI STINGERS! and trudge over to the spot on the far side of the pool where kids are assigned to their coach of the day. After I pry Ruby off my leg and help Oscar remove his white socks (pulled knee high of course) and blue crocs, it's just under a 1/2 hour of turn-taking with 3 other kids and a kickboard, endlessly practicing side breathing. My kids are nowhere close to side breathing, but they just keep at it, day after day.

At the end of the 1/2 hour all the minis come together for a quick song and a cheer. Last Friday, though, was promotion day. Each kid's name and swim level (1-10) was announced and, as they exited the pool, each was handed a lollipop as a reward. A frackin' lollipop!!! This week's reward for swimming a lap --licorice! I actually thought swim team would be a food-safe sport. But, apparently they use candy as motivators at the pool, handing it to the kids as they climb out. It's bad enough that every day, as we leave the pool, we have to push through a long line of shivering wet kids grasping soggy dollar bills and talking about which crappy "ice cream" they're going to get at the snack shack.

Oscar always notices the artificially colored frozen sugar on a stick and is distracted. He stops walking and stares, at the kid, at the confection, back to the kid. He'll sometimes say "We're not having that, right Mom?". "Nope", I answer. "That's not healthy for our bodies". I know that at least half the time I say it comes out as if we are somehow better. We make better choices, we take better care of our bodies, or, we're too good for that. Oscar buys the propaganda. He can get behind any slogan or cause. But we're not better. We just can't.

Ruby always whines.

"Mammmmmaaaa, why can't we have some?" she asked today referring to the melting rainbow popsicle in the hands of a chubby-legged three year old.

Today was a particularly hot day and the kids swam for two hours straight. Ruby, known for her lack of exertion in all things physically straining, was purple-lipped and wrinkled when I finally dragged her out, kicking and screaming. (Literally. I have witnesses.) She swam and swam, from me to my friend to my friend's daughter and back. I tossed her far and she swam back. She learned to do a dolphin kick with her sweet little arms tucked behind her back. She got tons of exercise today and loved every second. And so did Oscar.

So I really wanted to say yes, just this once, to a snack shack indulgence. But I know better. Ruby gets carsick before she gets in the car because she remembers that I once gave her gum under those circumstances. She knows that the school district special ed office has a fun water cooler in the copy room and starts whining about how thirsty she is as soon as we park outside the building. She's a savvy one. If I give into one of these treats today, I'll hear about it the rest of the summer.

It is times like these that I especially despise Oscar's diagnosis Prader-Willi syndrome and whatever is causing Ruby's constant hunger and slow metabolism. I feel my anxiety level creep up, right alongside my self doubt. I get snippy and frustrated and resentful of all those other families with their sticky-fingered kids.

I ruminated all through naptime and finally hatched another plan...a plan that did not involve the pool or any place we frequent on a daily basis. A plan that was not responding to the whining or questions, but my own need, once in a while, to not feel like a mean old ogre.

So I told the kids after dinner that we were going out for ice cream. We do this about once a year, never for any good reason (lest that good reason be an excuse for future outings) and today seemed like the day. Because what is summer without an ice cream cone?


(When I whispered conspiratorially to the ice cream scooper to only give 1/2 scoop to Oscar and Ruby, he bellowed, "I can make it smaller, but it still costs the same!")

A Very Cool Kid

Yesterday I found myself in a conversation with the manager of the pool we belong to about Oscar's swimming ability and whether or not he should be allowed in the shallow section (a.k.a. the baby pool). He was in the process of kicking Oscar (and Abe, and all the other big kids) out when I approached him. Oscar was sitting floppily on the steps. He had just finished his lesson and was pooped.

Before I knew it, this guy was describing Oscar's "look" to me. He referred to the way Oscar's goggles slip down making his ears stick out and smooshing his eyes. He swept his hand over his own face in a downward motion to indicate Oscar's low affect. While I was the one who mentioned that Oscar had special needs (and therefore should be allowed to stay in the shallow area since he could not yet swim a lap)...I was still somewhat offended.

Today, at Target, Abe got Oscar to try on some mirrored sunglasses. He had chosen a pair himself, needing something for his evening baseball practices and games when the descending sun can be so bright and distracting.

I debated about whether to let Oscar get them. They were $20. And they will get lost or broken. But, with these on, Oscar's low affect looks purposeful, even cool. And so I bought them. Because he is, you know, a very cool kid indeed.
And, for that matter, so is his big brother.

ps. the manager only had Oscar's safety in mind. he was letting me know he had noticed Oscar swimming in other areas of the pool. he was not, i don't think, intending to be disrespectful.

Play Ball?????

Last Saturday's baseball practice did not go well. Paul called me from the field about 45 minutes in and I think his exact words were "This is a DISASTER". Oscar was having a terrible time catching the ball, among other things. Honestly, I don't think his fingers are strong enough to close a mitt (slight problem). The coaches gave him a tennis ball to work with (great idea!) but then Paul accidentally bonked Oscar on the chin with it. As in, Paul lightly tossed the ball and Oscar didn't try to catch it or protect himself. When Paul called me, Oscar had retreated to behind the backstop and was having a "private conversation".

Oscar has a lot of private conversations. Generally, I think they are a good thing. He gets really upset and stomps off to a quiet space to argue his point about why we are all wrong and he is right. I've spied on him a few times and I see lots of hand gestures and overhear "See!?" and "I'm right!" and "You don't know!" In his private conversations he gets to create an alternate reality and he wins the argument. When he returns, he is often tired, but calm and resolved. Most private conversations happen in his bed and we usually just go about our day not paying too much attention.

It's a little trickier when the private conversation happens in public. It's just not exactly "private". If we try to talk him down the situation just escalates - more stomping, yelling and pulling away. If we ignore him...well, it can be a little uncomfortable that your kid is freaking out, yelling at an imaginary person while you stand by trying to look bored. I'm ok with it. But I completely understand why Paul called me in that moment. Shame, exasperation, desperation.

The coaches noticed of course and inquired. I'd sent them a big email about Oscar before the first practice, ending it with a cheerful "but don't worry, one of us will always be there...".

Oscar rallied eventually. Paul had been thinking of just putting him the car and heading home, but I disagreed. "Remind him how much he wants to be on this team. Remind him of his promise to work hard and not give up". It worked, but both Paul and Oscar looked exhausted when they got home.

I couldn't believe there was practice again on Monday. Paul had planned to be there at the start but got stuck in a meeting so I was down at the field with a super cranky Ruby waiting for him to show. Ruby didn't want to get out of the car, so I backed the car into the space so that we could look directly onto the field. I could keep an eye on Oscar while staying with Ruby in the car. Practice started off ok with running laps. Oscar was slow, and kids were passing him, but he was trying hard and looking happy. A few minutes later Oscar was warming up with one of the three incredibly patient coaches. She would toss a ball to him and he would try to catch it. And then he would take no less than a full minute to position the ball in his hand (gotta line up those stitches just right!) before he would throw it back. I never saw her flinch. She just stood there waiting. If it had been me, I would have been frustrated and trying all of my tricks to get him to move through it faster. A game perhaps -- pretend the ball is made of fire and you have to get it out of your hands quickly. But from my front row seat in the car there was no way to communicate. I could only watch. And I was so grateful for her patience.

As the minutes slowly ticked by, and Paul still hadn't arrived, I really tried not to watch anymore. The kids had moved into the field for fly ball practice. One coach popped balls up from home plate while the kids tried to catch them. They placed Oscar in the pitcher position, but he kept turning around, looking away from home plate. He was looking at the other kids to see what they were doing, but also at me, in the car. I think it was really really hard for him and he needed someone to tell him what to do. I turned around, toward the back of the car and Ruby, hoping that he would go back to concentrating on practice. But he didn't. He just kept looking towards the other kids, towards the car, towards me, lost. It was painful, but I was stuck...no way to get on the field with Ruby in tow. I really needed Paul.

Paul arrived what seemed like an eternity later, but he was only 1/2 hour late. He sat on the bleachers for a minute assessing the situation, but it was clear almost immediately that he needed, in his words, to "get in the game". Oscar needs the 1:1 support of someone telling him what to do out there, and still it is a huge challenge. We probably shouldn't have let him talk us into this. It is just too hard.

Today is opening day. The Blue Jays play the Mariners at 3pm. Oscar is anxious - we know because he's collecting all the pieces of his uniform and every few minutes he'll ask a question or offer a concern. He's lost the pre-season excitement he had just a week ago. His eyes reflect his own uncertainty, or maybe he's mirroring mine. I'm not worried about him bobbling the ball or striking out (that's bound to happen), but I am worried about him feeling defeated and lost. I'm worried that if we have to withdraw him, for his safety and sanity, that it will be a bigger blow than if we hadn't tried at all.

Maybe it will rain.

Play Ball!

Oscar's first day of Little League practice was Thursday. He's playing Single A, on a team with typical kids a year or so younger. We're just a tad nervous...he can't catch, his throws come with a lot of effort and not too much accuracy or speed. His timing on hitting is waaay off. He's been know to argue or cry when he is out. And last year, in t-ball, he spent a good portion of every game crouched down by second base playing in the dirt. He rarely saw a ball coming his way, and I'm surprised one never hit him. So yes, we're nervous.

I tried to switch Oscar to the Challenger league -- to the baseball team for kids ages 5-19 with all types of disabilities. I thought it would be a better match. But he was adamant -- his heart was set on Single A. He wants to play on the same fields as his brother, as his friends. He's been sitting in the stands, watching, for years, and now he wants his turn and it has to be the full Albany Little League experience. He is clear.

For the first time ever I tried to talk Oscar out of something because it might be too challenging. Usually if he wants to do something I jump aboard and figure out a way to support him. This time, though, I told him frankly that he'd have to really listen to his coaches, that he couldn't argue the calls, that he couldn't "opt out" of activities, that he'd have to practice, that he'd have to be a good teammate, and that he might not always get on base. I didn't tell him he couldn't play Single A, but I felt like I had to be honest and let him know this one could be a real challenge.

We don't talk about his disability too much. We talk about abilities and strengths. And of course we all have things we are working on. I don't ever say "You can't because you have Prader-Willi syndrome". But I sort of did say that when I told him all the hard parts about playing Single A, didn't I?

When I was done, he looked me straight in the eye with more resolve and wisdom than I'd ever dreamed he'd have and said:

"Mom, I'm up for it. I can do it, I know I can."

He understood my concern, and was telling me that he was going to work past his disability on this one. I was so proud of his fighting spirit...that flame we've seen burning in there since birth. Of course I said yes.

Still, I was sort of jittery and nervous on Thursday. Paul stayed down at the field with him "to facilitate". When I left, the kids were all lined up playing catch with a partner. Oscar's partner was one of the coaches and Oscar wasn't catching any of the tosses. I didn't care about that...I was just so proud of how hard he was trying.

One of the coaches emailed this picture Thursday evening. He took pictures of all the kids running the bases so it took me a minute to see that this one was Oscar. I still can't believe that's my kid --he looks like he might even have a little speed.

Go Blue Jays!

What made you happy today?

A few weeks ago I was talking with a mental health professional about a happiness study she'd heard about. Unfortunately, though I gave her my email, she never sent me the link to the research. The gist, from what I remember, was that if you take a few moments each day to focus on what made you happy that day, your overall sense of happiness increases, especially as you start to recognize the joy in the actual moment and not just later, upon reflection.

At at first I was skeptical that this pollyanna approach would teach the kids to tamp down emotions surrounding anything hard in their lives, but I was also intrigued. I actually do a really good job of letting the kids express their full range of feelings, so I decided perhaps this was an idea worth pursuing. So, a few nights a week, when we all happen to sit down together for a relaxing meal, we go around the table and share what made us happy that day. It's only been a few weeks, but we've stuck with it, and some neat things have happened.

First, we've actually learned a little more about each other's inner lives, goals and priorities. For me, it has been a chance to share with the kids that I have started writing a little and how happy and grounded that makes me feel. I also use the time to complement them on their kindness, or to share how much I appreciate the special time I have with them. Abe, our self-defined pre-teen, has been surprisingly revealing, especially about his peer interactions. For Oscar this has been a wonderful way to help him feel more comfortable sharing in a safe setting, something we are working on at school. And now we can't get him to stop talking -- he has so much to share. I think Ruby loves our new tradition the most -- she is often the one that reminds us. In typical Ruby style, she always attempts to control the order of sharing and time spent on each person. In the long run I think this will also benefit Ruby the most. She is fiery and quick tempered and prone to upset. Perhaps, just perhaps, focusing on the joyful moments in her day (she got to play "babies" with her best friend T.) will help her take the little disappointments (spilling a teaspoon of cold coffee on her pants) less seriously. I can always hope.

We are only a few weeks in, but I am definitely liking this addition to family time. Here are just a few things that have made me happy in the last couple days. Feel free to share yours in the comments.

1. Receiving "presents" from Ruby -- little drawings wrapped in paper with more tape than you'd use to wrap all your christmas presents.

2. Watching Oscar sing and play zampona in the recording studio. It was hard work for him, but he was such a champ and just loved the experience.

3. Hearing Abe try to relieve Oscar's anxiety over getting xrays, urine and blood draws today. I said to him privately "Abe you're so wonderful, but I want you to know I don't see this as your responsibility" He looked at me earnestly and said "But I'm his big brother, Mom. It is my responsibility", and went back to talking Oscar down. Guess what? It worked. Best blood draw EVER.

4. Paul, who desperately needed to work this afternoon, put on one of my favorite CDs for me while I was cooking. A simple way of looking out for me that I truly appreciated.

So, what made you happy today?