Finding Joy in Simple Things

A Glorious Day

2012-01-17T15:13:00.000-08:00

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

2012-01-14T00:10:00.000-08:00

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

2012-01-04T00:01:00.000-08:00

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?)

Happy New Year!

2012-01-01T09:26:00.001-08:00

It's been years since I sent out a holiday card. We used to have such fun creating newsletters with pictures, crosswords, jokes, and articles. One year Abe wrote a funny piece about Ruby's toddler-isms and Oscar dictated all the facts he knew about giraffes. I hope someday we'll rediscover our creativity, but until then I'm considering it a victory that I slapped this together today (with the help of Shutterfly of course).

I am hopeful about 2012 -- I am promising myself yoga, long walks up the staircases that slice through the blocks in our neighborhood, read-alouds, card games and bike rides with the kids, time for writing and creative pursuits, and (please, oh, please) a whole lot less anxiety.

Happy Happy New Year to all!

The Other Shoe (Hopeful Parents)

2011-12-28T14:27:00.000-08:00

It's been months since I posted here, but I hope to be back soon with a really long update. In short though, my mother died in July and I just didn't feel up to posting in the months preceding and following her passing. And then, in a fit of madness, we decided to finally take care of all the deferred maintenance on our beloved "dilapidated castle". This fall we packed up all of our belongings, moved out, renovated our house, then moved back in. It's one of the crazier things we've done. We are still stepping around boxes and can't find the hardware for the bedroom blinds, but life goes on.

In the meantime, I did finally post over at Hopeful Parents. (Thankfully they hadn't changed my login or revoked my privileges in my absence!)

A Rare Tuesday

2011-05-03T17:19:00.000-07:00

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)

2011-04-27T23:38:00.000-07:00

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.

Seeking Calm (Hopeful Parents)

2011-03-27T23:38:00.000-07:00

I'm over at Hopeful Parents today, writing about anxiety again (and my first attempt at meditation). I'm tired of the anxiety and I'm tired of writing about it. I figure you might be tired of reading about it too, so after I drafted that post last night I wrote a whole other, more hopeful, post about Oscar. I'll share that here sometime this week...but the truth is the anxiety is ruling me right now, so that's what I posted after all.

De-lurking for Japan

2011-03-16T00:23:00.000-07:00

Like many people I've spent the past few days reading and listening non-stop to news about Japan, and still it is all so inconceivable. The effects of the earthquake and tsunami are utterly devastating and I think of all the people now living in fear of nuclear meltdown too and wonder how I would cope with all of that loss and uncertainty. A photo of a mom holding her young child up to be checked for radiation exposure sucked the wind out of me.

Ruby asked a lot of questions tonight, particularly about the tsunami. Her blue eyes grew big and round when I explained that the force and height of the water experienced in Japan's coastal areas would topple our house and push all the cars in the street around. She wanted to know how many people died and if we know any of them. She wanted to know if anyone we know has ever even been to Japan. She wanted to know how a tsunami starts in the first place.

My doctor has been posting on her blog about possible radiation exposure where we live. It seems almost disrespectful to worry about some low level we might experience here but all the same I've increased our leafy green vegetables and sea vegetables to pump up our non-radioactive iodine levels. I've heard before that most Americans are deficient in iodine but it never really seemed relevant before. (Or, rather, so many other things seemed more urgent.) Last night I made a lovely miso soup from homemade dashi with shitake, wakame, and kelp noodles and felt that the meal was both a tribute to the Japanese as well as the start of some protection against whatever radiation we may or may not be exposed to someday.

Two of my friends, Kate at mother words: mothers who write and Elizabeth at a moon, worn as if it had been a shell, are making a donation to the Red Cross for each reader who leaves a comment who has never left one before. I think that's a grand idea, and so I am borrowing it too. If you are a new or infrequent commenter, leave one this time, and in a few days I will make a donation to the Red Cross.

Rowing

2011-03-07T13:20:00.000-08:00

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

2011-03-06T23:09:00.000-08:00

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!

Back!

2011-02-28T00:10:00.000-08:00

We're back from our wonderful trip to Hawaii, and I will definitely post some pictures this week. But for now here's the post I wrote for Hopeful Parents on the plane ride home!

Ready!

2011-02-17T12:43:00.000-08:00

I'm really really ready for our trip to Hawaii tomorrow. We're not packed, but we're close. The couch and the chairs in the living room are covered with neatly folded clothes sorted by kid. One chair holds the long pants and sweatshirts they'll wear on the plane but everything else is shorts and bathing suits and water shoes. I've chosen small games for the condo, pulled out some markers and paper and books for the plane and even remembered to dig the life vests out of the depths of our garage.

The last time we went to Hawaii Ruby was only two years old and still in diapers. Her hair was really blond then and the freckles that dot her face now had yet to appear. She spent a good part of the trip obsessed with the song B-I-N-G-O and sang it over and over B-I-ENGINE-O, B-I-ENGINE-O. She cracked up when we showed her a video of her two year old self singing those modified lyrics.

Four years later she still sings as she plays. Just yesterday, while Oscar was in his after-school music class, she and her friend made a cube shaped drum out of large colorful plastic puzzle pieces and beat it with shovels while parading around the school yard singing in Spanish. They sang for an hour, sometimes joined by others, and it made me so happy to see her so engaged and comfortable at school.

Oscar was in Kindergarten four years ago, and the exact age Ruby is now. I remember that it took days to convince him to try modified snorkeling. I knew he'd love watching the brightly colored fish swim around him but he was resistant. He was scared. When we finally got him out into the bay with a boogie board for support wearing just the mask and not the snorkel he couldn't stop giggling. He was still anxious, working at the brink of his ability, but loving the experience too. I pulled up this picture last night to show Ruby, very well aware that knowing that Oscar snorkelled when he was only six would ignite her competitive spirit.

This time Oscar can't wait to swim with the giant sea turtles that reside in the bay outside the condo. He's talking about it perseveratively and I had to remind him on the way to school that his classmate who was smooshed next to him in the backseat of our little Prius for the third day straight listening to Oscar's stories about Hawaii might start to think he is bragging. I switched the subject to today's school-wide book swap and thankfully Oscar transitioned.

This picture also helped Oscar get mentally prepared for snorkeling again. I can sense a little anxiety creeping up (will the turtles bite my toes?) but having proof that he's done it before, as a teeny little kindergartner, is so helpful to him.

And Abe was only a third grader, just eight years old, when we made this trip four years ago. He seemed so old then, as he does now, and it makes me wonder if I am inadvertently pushing him too hard to grow up. (We've been arguing these past two days over responsibilities -- me pushing for more organization and accountability with schoolwork, but is that too much to ask at age 12? I don't know.) At eight he snorkeled from a boat out in deep waters, skim boarded on the shore, played paddle ball and shuffle board and catch hour after hour. He plans to do the same this time, and we've made a pact to try surfing. We need that time together, hopefully laughing as we fall off our boards, as these past weeks have been full of stress and arguments.

Obviously returning to the same area as before is allowing me to reflect on what has changed in the past four years, and what is the same. I also can't stop remembering that four years ago in Hawaii was the beginning of the six months of dizziness that eventually caused me such debilitating anxiety that I called my primary care doctor one night and asked her to prescribe something, anything, to make it stop. Instead of driving the two miles to the pharmacy to pick up the prescription I walked. I walked and walked those six months, trying to calm my body while the dizziness just increased. Evenutally a brilliant neurologist prescribed vestibular exercises that zapped the dizziness in a mere two weeks. I still consider that one of the miracles of the last decade.

I've chuckled too as I've pulled out summer clothes for this trip. The skirt Ruby is wearing below still fits her. It was too long then and a bit too short now. The orange hoody and blue Keens that Oscar had on fit Ruby now and the bathing suit that Abe is wearing above still fits Oscar. There's comfort in that cycling of clothes. (And Paul is wearing that shirt to work today and probably on the plane again tomorrow. I'm not a fan of Hawaiian shirts but Paul is and you will likely see one in every picture I post.)

There's comfort too in knowing that we will swim with the turtles in the bay. That I'll walk the sandy path from the nearby crescent beach and over to the next one and up past the new condo development to the more secluded oceanside path to the north. There's comfort in going to our favorite taco shop and the farmer's market and hiking down to the blow hole and experiencing the water bursting up like a geyser through the holes bored in the lava shelf from years of tide and wave action.

When I was younger the thought of returning to the same vacation spot probably would have bored me. But so much in our life now is unpredictable and often stressful that I'm looking forward to visiting a favorite spot and relaxing into the familiar soothing routines. We really need this vacation.

So one selfish wish: Obama, I know you are flying out of SFO tomorrow at the exact time that we are. Please please don't close the surrounding roadways so that we can't get to the airport. I don't mind if you have to freeze the air space for a little (little!) while...but at least let us get on our plane. This vacation means too much to us to miss.

Goodbye January

2011-02-11T21:48:00.000-08:00

January was not a great month.

I wrote vaguely about our IEP troubles over at Hopeful Parents, but I left out that Paul was in Spain for ten days and that while he was gone I got sick. Ruby mysteriously hurt her hip and could hardly walk. I spent days preparing forms and collecting files for Oscar's neuropsychological assessment. I still fed and transported the kids. I also spent every evening (or so it seemed) reviewing and commenting on the latest draft of the legal document that finally got filed last Wednesday. The paperwork and advocacy that goes along with having a kid with special needs is mind-boggling.

Oscar's appointment with the orthopedist did not go so well either. His curve has progressed to 30 degrees. Three years ago we started nighttime bracing when he hit the 25 degree mark, but we stopped bracing when he outgrew the device in April 2009. With tons of exercise and luck the curve somehow improved to 22 degrees. For three visits now we've seen an upward trend and it's time to get serious. It's true that Oscar's not getting nearly the same exercise as he was this summer when he was swimming, horseback riding, working out with his PE teacher and riding a bike. At last week's appointment our orthopedist let me choose between a brace with intense core exercise or just intense core exercise. I chose the latter but I've yet to make it happen.

Somehow, though, I'm feeling more hopeful about February.

It could be the weather. February is beautiful this year..more beautiful than any of the previous sixteen I've lived here. The bright sun, warm breezes, pink fluffy plum tree blossoms, and the glowing late afternoon light followed by the orange and pink streaked sunsets are all very soothing.

It could also be that baseball season has started again and that we spent last weekend watching Abe's travel team play five exciting games at fields that are replicas of big league stadiums. The team played with such heart, coming from behind to earn three of their four wins. Oscar happily chatted with his many favorite adults, Ruby jumped rope and drew pictures of fairies, and I relaxed with friends and cheered the team on so enthusiastically that my voice was scratchy for two days.

It also helps that the "the document" is filed and the neuropsych testing is now behind us. While I fretted all weekend about Oscar being well rested for the eight hours of intense testing this week, he was more energetic and zippy during the testing than we've ever seen him. I even worried that he was too energetic -- giving an inaccurate picture of his arousal levels and ability to focus. I think though that he just demonstrated again what a complex kid he is.

And I know it helps that we are going to Hawaii next week. Looking at pictures from our trip there four years ago I feel the tension of the past few months dissipating. I can almost feel the water lapping over my back as I attempt to swim from one end of the crescent shaped bay to the other. Almost.

And even though I know I don't always have to write about the good stuff I do feel freed up to write again. When my brain is muddled with deadlines and anxiety I do have trouble finding my words. Or the words I want to write are too hard to face....their harsh reality more jarring than helpful. Something to work on I guess, but for now I'm just grateful that January's gloom did not follow me too far into February.

Christmas in Pictures

2010-12-31T17:46:00.000-08:00

I was busy this month with the holidays and preparing for our trip east for Christmas...and now it's already New Year's Eve.

Here's a recap of our month...

Oscar and Ruby visit with Santa. (Ruby's one wish - a candy cane. She'd never had one)

Christmas tree tied to the top of our old wagon. (In our version of the punch-buggy game Ford Taurus wagons are worth 10 points.) Abe is dressed for baseball tryouts later that day.

Reading Christmas stories in bed. (And yes, it's so cold in our house that some of us wear ski hats to bed)

Oscar with his "First Christmas" ornament

Abe wears the Santa hat all over town and even to bed. Perfect for tree decorating.

Ruby's year to put the star on top

School ice skating trip -- both Oscar and Ruby spent as much time on the ice as possible. Oscar didn't want me to take this picture, he told me later, because his friends were watching, and "it isn't cool for 10 year olds to take pictures with their moms".

Watering the Christmas tree with a tea pot.*

Ruby writing her letter to Santa.*

Candy cane at the top of the list.*

Walking on a frozen pond in Pennsylvania

On the way to Philadelphia with cousins.

Cousins lined up, watching for the train.

Christmas Eve at my parent's house.

Ruby gives Abe a present

Oscar opening a present containing some more of the animals he collects. (He must have hundreds of these now...a clear example of "enough is never enough" in PWS, but they make him SO happy, and hey, it's not food!)

Abe excited about a gift

Oscar and cousin A. relaxing with A's dog Penny

A blizzard with over two feet of snow in NJ! Abe was thrilled and played in the snow for hours and hours

Ruby and cousin A jump aboard the sled

Oscar throws a snowball at Paul -- he thought he was so sneaky

Oscar walking Penny the day after the blizzard. He giggled and jogged along.

(Maybe a dog isn't such a bad idea?)

Ruby built a snowman with Grandpa

And Abe dug a tunnel (with cousin A and Grandpa)

We had a great trip, relaxing for a few days with each of our families. Thankfully the snow didn't affect our travel and we are home again now enjoying the last few free days before school and work and all those other responsibilities start up again.

Wishing you all a Happy Happy New Year!!

* photos by M. Roark

Grandpa took most of the snow photos and many others too!

Good Friends

2010-12-01T00:30:00.000-08:00

My friend Lindy and her three kids surprised us with a visit last week. They moved to LA a few years ago and we hardly ever see them, but we have one of those distance-proof friendships. Brooke, her daughter, was born with PWS just three weeks after Oscar in the same hospital. Most of those doctors had never seen a child with PWS before Oscar was born and actually delayed testing Brooke for it because the odds were so low that two kids would be born with this diagnosis at the same hospital in such a short period.

I remember the moment I got the call that another baby had been diagnosed. My heart sank and soared at the same time. I was devastated for the mom, but I also suddenly had company in my grief.

I spent many an afternoon curled up in the faded green chair in my living room talking to Lindy on the phone while the boys napped. We cried and shared feeding tips. We said things we couldn't say to anyone else.

Our kids presented differently with the syndrome...another reason we confused the NICU doctors I think. Brooke had better muscle tone and moved and rolled and batted at toys long before Oscar. Oscar had an easier time with eating and gained weight more easily (a good thing in the early months, but it still scared me).

Here they are in February 2001 -- Brooke was nearly two months old and Oscar just over three months old. Whenever I look at these pictures I remember how much I wanted Oscar to move. His shoulders were glued to the floor and it took every ounce of energy just to turn his head the slightest bit. Brooke, on the other hand, had more muscle tone -- look how her position changes in each picture and how she's tucking her body in to Oscar's. Notice how her arms are up and her fingers slightly curled. Oscar did move his head!

I spent a lot of time comparing Oscar to other kids (with and without PWS) in those early years trying to figure out how he was going to fare. I wondered obsessively if he was "mild" or "severe", terms I no longer use. I finally realized, after many many months of pouring over articles, talking and emailing with other moms, and interviewing doctors and therapists, that PWS is a syndrome comprised of many symptoms, each with its own spectrum of possibility. Just because a kid develops more quickly or slowly in one area really does not mean they will fare the same in another. A kid with super low tone, for example, is not necessarily going to struggle more with skin-picking or food-foraging. It is true, however, that a kid with better muscle tone can explore and learn from their environment, which can aid cognitive development. (I lost a bit of sleep over that.) It amazes me how this one set of pictures brings back all that angst.

Anyway, here are Brooke and Oscar at age four, re-enacting that baby scene. (Silly parents obviously put them up to this!)

And here they are now at age 10.

Still good friends!

Coming Together Again (Hopeful Parents)

2010-11-27T16:54:00.001-08:00

I'm over at Hopeful Parents today, writing more about Oscar's tenth birthday. Come check it out and leave me a comment here or there!

Holidays

2010-11-26T11:58:00.000-08:00

We spent a lovely Thanksgiving with friends yesterday. The festivities started with a flag football game that, amazingly, even Oscar and Ruby were coaxed into playing. Abe was a ringer, of course, and Paul's team saved his skills till late in the game and secured a win. I didn't add much, but I was out there, holding Ruby's hand and trying to look open for a pass.

Later, warmed by our friends' hospitality and soothing fires we lounged and talked and played cards while the bird roasted. Oscar managed well the uncertain timing that accompanies roasting a turkey. It is so hard for him not to know exactly when things will happen, especially big things, like the Thanksgiving meal. Well-meaning guests engaged him in lots of talk of hunger and favorite dishes while I tried so hard to distract him from thoughts of food. I finally had to explain my seemingly odd behavior and they were ever so understanding and curious about his disorder.

Today we started off the holiday season with our traditional 7am viewing of Elf. The kids excitedly dragged their pillows and comforters out to the family room and Paul and I bundled up on the couch. Afterwards we queued up our favorite Christmas tunes (Christmas Jug Band!) and started the annoying task of sorting through drawers and shelves for clothes and toys we don't really need any more. By mid-morning the kids were all tired of my nagging so we headed out the door for a walk and a round of haircuts.

Tonight we drove up to the local park's Christmas Fantasy Carousel. Santa was there too and both Oscar and Ruby eagerly climbed onto his lap though neither really had settled on a toy to request. (Ruby did say she was going to ask for a candy cane -- she's never had one, which I do feel terribly guilty about). I remembered to ask the elves not to offer them candy and thankfully neither noticed the overflowing basket of sweets at Santa's feet.

Abe, sporting reindeer antlers was too cool to play along. But he did ride the carousel, after trading Ruby for the Santa hat.

And so we begin the holiday season! We'll start on outdoor lights tomorrow and perhaps some decorating too. It's early, I know, but we're heading back East before Christmas so we want to have some time to enjoy the season at home as well.

A Decade

2010-11-16T12:16:00.000-08:00

Oscar is TEN today.

For the past few years I've occasionally thought about how I would honor the passing of Oscar's first decade. I'm not talking about the standard birthday cake, balloons and presents. I'm talking about going back and really acknowledging the journey -- the bumps and the triumphs.

I considered writing letters to all the amazing and compassionate people who taught me so much and supported me in those first couple of years as I battled fear, sadness and grief.

I thought about fundraising for the organizations that led me gently into the world of disability and fortified me for the advocacy and planning and patience required to be Oscar's mom.

I envisioned a huge party at which I publicly and tearfully thanked every person we've encountered on this journey, from our very first home visitor to the boy in O's class who yesterday came up with a new nickname for him, "Oscar the Awesome".

I thought about hiking to the top of Mt. Tamalpais and screaming in celebration that Oscar thrived and that I survived.

Most likely today will be just like any other day. I haven't arranged to do any of these things but I am giving myself permission to make this an entire year of acknowledgment and celebration.

I feel compelled to mark the end of this decade, I think, because I am keenly aware of how far we've come, and also that our journey continues. Oscar will always have Prader-Willi syndrome and it will always be our job to keep him safe and to help him develop into the happy, confident, earnest person with lots of ideas and goals that he is already clearly becoming. It's daunting, honestly, and while ten years ago today I was gripped with fear over the prospect of raising a child with a disability, today I am full of hope.

Oscar, you taught me so much about hope!


3 hours

6 days


3 months

7 months

9 months

One

One and a half

Two

Two and a half

Three

Four

Four and a half

Five

Six

Seven

Eight

Nine

Nearly...

Almost...

TEN!!!!!!!!

I love you Oscar!

Conference Eve

2010-11-05T23:59:00.000-07:00

Tomorrow is our annual state Prader-Willi conference and this year's speakers are fantastic. Dr Linda Gourash and Dr. Jan Forster are my favorite PWS experts. Their work has formed the basis of our approach to Oscar's food and behavior, and I credit their brilliance for our success so far. Their work helped us create a food security protocol that keeps Oscar safe at home and at school. They also helped us realize that telling people that Oscar was always hungry didn't really elicit the desired response. Instead, if we say that "enough is never enough" people won't be tempted to try to placate Oscar with more food...No matter how much you give him he could always eat more. It's a hard concept to grasp, and it applies to more than food. For years Oscar would try to wear two or more pairs of socks. He would wear layers and layers of pajamas and as many as three shirts to school. His plastic animal collection is probably worth thousands. (ok, that's an exaggeration). But we see it across all domains -- enough is never enough. So simple..but I would have never thought of it myself.

I own four copies of their Food, Behavior, and Beyond DVD. One is on permanent loan to our school district and I brought two more with me to share with local elementary teachers that will be attending tomorrow. Oscar's two aides are coming, as well as his former preschool teacher and the district behavior specialist. I just know I'll be sneaking away from my post at the education table to chat with everyone!

I drove down to San Jose tonight to attend the pre-conference "Meet and Greet" and got to talk briefly with both Dr Gourash and Dr Forster. They are so lovely and generous with their time and attention. I found out in the four plus years since I've seen them present they've revamped their talks to include more up to date material. I thought they were pretty well up to date before so I'm excited to see what tomorrow brings. I'm hoping it includes another song or two -- they always mix in a couple of duets they've written about PWS into their presentations -- definitely a highlight! I'll be sure to report back here.

School Conferences

2010-10-29T13:58:00.000-07:00

Oscar and Ruby were home from school on Monday and Tuesday for conferences. Our meetings weren't until Tuesday afternoon so Ruby asked to visit her old preschool. She spent Monday morning there while Oscar and I walked in the hills, talked and worked on our computers.

Later in the day we drove a few towns over to Abe's cross country meet. It was a gorgeous fall afternoon and we hung out in the shade of the eucalyptus trees. Oscar and I cheered on the runners while Ruby practiced the monkey bars at the nearby playground. Abe ran well and was exhausted. He plunked down on the team bench after his race and couldn't get up to cheer on his teammates, which was unusual. (Good thing soccer practice was canceled due to the previous day's rain.)

Oscar cracked me up when, after Abe's race, he begged to stay and watch the 7-8th grade girls run. We all know he has a crush on the fastest girl at Abe's school and we tease him endlessly. I tried to capture his embarrassed smile.

Mom!

Stop!

I'm getting embarrassed!

On Tuesday Ruby, Oscar and I went for a bike ride. I'm still awed by the fact that we can do that with relative ease. We rode to the local bike shop where I finally got my brakes fixed (for free!) and then headed uphill to the coffee shop for steamed milk (Ruby and Oscar's snack) and a latte for me. Ruby doesn't have gears on her bike but she just pumped and pumped without complaint.

Conferences were in the afternoon. Ruby and Oscar drew pictures and read up in the school office while Paul and I met with their teachers. What a treat! I love the care and attention given to each student at this school. Ruby is adjusting well to kindergarten and feels comfortable and confident with her new friends. She's working on her inventive spelling and writing notes and letters to me, her friends, her teacher. We've noticed a huge improvement in her mood, behavior, and even her obsession with food since school started and I'm sure it's because she's finally getting to go to this school. She's been visiting her brothers' classrooms every morning for her entire life and always hated to leave. Finally she has a place there too.

Oscar's two teachers glowed with praise for him. Even though they've both known him for years, none of us really knew how this transition to fourth grade would go. It's definitely a step up in expectations, organization, and content. We'd all expected some more bumps -- but it's been pretty smooth so far. (I knocked on wood at the conference and I'm knocking again now.)

We learned that he's finally excited about writing. He's had more tantrums and episodes of willful non-compliance about writing than anything else over the years. We've spent hours working with the behaviorist and coming up with new approaches and reward systems but his executive functioning and anxiety really impeded the creative writing process. He started this year off using his computer with a couple of adaptive programs -- Co-Writer and Kidspiration -- but writer's workshop time was turning into typing lessons because he's really just learning to navigate the keyboard. The humanities teacher and aide switched tactics -- they're still using graphic organizers to help Oscar plan his writing but now Oscar's doing a lot of dictation. I was amazed at the details he incorporated into his memoir piece about our family bike ride in Sea Isle this summer. He also used techniques and agreed to let his teacher share it as an example with the class even though it wasn't finished. (Oh the flexibility that required!!) I'll put the finished piece up here when he "publishes" in a few weeks. His teacher also shared how much fun he is to teach, and that she's found that some of the modifications she's made for Oscar have proven to be really helpful for other kids in the class too. She's so great at meeting each kid where they are and has helped Oscar settle on a "just-right" series of books where he can really focus on building his comprehension skills.

We also learned that Oscar seems to be really understanding the science curriculum (electricity and magnetism) and while he has trouble physically creating the circuits himself -- those wires are tiny and require fine motor precision - he's very observant and helpful in group work. He got 100% on the quiz! (Abe said he failed that one in 4th grade). The math and science teacher has also been creating modified math worksheets for him to do with the class so he has that sense of being in the group even though his math skills lag a couple of years behind. As I mentioned in my Hopeful Parents post -- Oscar is so motivated by this and is finding math very fun despite knowing that he's behind. Pretty fantastic.

We also learned that he's enthusiastic, hard-working, and well-liked...all stuff we knew but it's so nice to have confirmation. My favorite anecdote -- one time, towards the beginning of the year when everyone was still settling in, the math teacher was working with Oscar individually and congratulating him on really working through a problem. His classmates were eavesdropping protectively, not sure yet if the teacher would "get" Oscar (they didn't realize just how long she's known him!) and also unsure about how Oscar would do with this more difficult curriculum. When they heard the praise they apparently cheered "Way to Go OSCAR!" and "Yay Oskie!" It was heartwarming to hear, again, how much they look out for him.

Working on homework before music class

I'm so filled up with gratitude for this little school and the way they are able to meet the academic and social-emotional needs of both of my wildly different kids, and Abe before them. And I'm amazed by Oscar's peers who adapt, encourage, and include so naturally.

Middle school is just around the corner -- I'm starting to consider the options. I really don't know how we'll create a safe, supportive, and inclusive environment in an entirely new school. We'll just have to...we'll just have to.

The Beginning of a Long Conversation (Hopeful Parents)

2010-10-27T11:13:00.000-07:00

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.

Six

2010-10-06T23:59:00.000-07:00

Ruby -- my third, my last, my baby -- was born six years ago today.

I remember seizing with joy and relief as I clutched her tiny body to my chest for the first time. It had been four years since Oscar's nightmarish birth, but the images of his blue floppy limbs lingered at the edges of the room until Ruby's lusty cry chased them away.

The boys were in school when she was born but came directly to the hospital afterwards. Oscar arrived first and enjoyed some moments with his new sister. He wasn't jealous, just curious.

"How did the doctor's make the fingers?" he wanted to know.

Abe arrived a little while later and immediately wanted to hold Ruby. He carefully inspected her long delicate fingers and caressed her mottled pink cheek.

He was only two when Oscar was born and though I doubt he recalls the details, I'm sure the shadows of that scary day were lurking in the depths of his memory too. He was also starting to grapple with the reality of having a brother with PWS. Ruby's birth, in all its loud and sleepless glory, was probably as healing for him as it was for us.

After holding her for a long while he gently laid her down beside me and said "Mom, can you keep an eye on Ruby while I go to the bathroom?" (These boys of mine took this big brother business seriously from the start.)

Tonight at dinner we honored Ruby, following a tradition borrowed from school. Abe honored Ruby for trading sillybandz with him. Oscar honored Ruby for playing farm and pretend house. I honored Ruby for her strength and for always speaking up for what she needs even though she's the youngest in our busy household. (Everyone laughed at that because Ruby is the loudest, most outspoken person in our family and doesn't really need any more encouragement to state her needs.) And Paul honored Ruby for the nice conversations they have while hiking and biking.

Happy birthday sweet girl! We're so glad you're here!

7th Grade

2010-10-03T10:05:00.000-07:00

Do you remember 7th grade?

I do.

I remember my greasy bangs, prank calls and notes to my two best friends signed in code, folded into triangles, and passed secretly in the locker-lined hallways of my small town Ohio jr. high. Seventh grade was also when I had my first crush -- on the boy who sat in front of me in English class. He had blue eyes, wavy sandy-brown hair, and such a mischievously melting smile that I didn't even mind that he repeatedly rummaged through my little khaki purse with the turtle ribbon trim. We never "went together" but we did swap pictures. (I slept with his under my pillow for probably a year, maybe longer.)

I'm remembering 7th grade right now because Abe is celebrating his 12th birthday today and my living room is completely overtaken by 11 and 12 year old boys sporting sillybandz and skate shoes. They spent the afternoon playing mini-golf and laser tag and then returned here for dinner and what is turning into a rousing game of dart tag in the middle of our small house. The furniture has been shoved to the corners of the room and they are smiling, yelling, pushing, laughing, chasing, joking, diving.

I can't help but wonder if the girls have noticed them yet.

Probably, right?

And that makes me feel so darn old.

The Kind of Mom..

2010-09-30T23:36:00.000-07:00

Yes, I am the kind of mom who dictates spelling words to her kid in a restaurant while waiting for the food to arrive. Gotta squeeze the homework in sometime, and that gets tricky when O takes a power nap like he did today. He looks happy though doesn't he? Or maybe it's proud.

Ruby wanted homework too, so I dictated a sentence for her to write and illustrate in her "napkin book".

"I BIT THE APL"

It turns out that I am also the kind of mom who asks the kindergarten teacher for homework. I did, I really did, because each night, as soon as the boys start on theirs, Ruby begs me to make up some for her too. She wants so badly to be big...and I really love that she isn't, yet.

Hopeful Parents

2010-09-27T20:38:00.000-07:00

I'm over at Hopeful Parents today writing about the importance of community in helping the first child diagnosed with autism reach his potential in life. Of course it's also really all about me.

If you haven't checked out Hopeful Parents site yet, please do! I'm continually impressed with the skill and authenticity of the writers I see over there.

A Pretty Good Day

2010-09-25T22:51:00.000-07:00

Another busy Saturday... Paul's company was sponsoring a shoreline clean-up so he scooted out of the house at 8am with Oscar and Ruby and a collection of buckets, gloves, and shovels. Oscar was a tad reluctant at first and really wanted to know how long they would be cleaning up trash. We made the mistake of specifying an amount of time -- one hour -- so then he was fixated on how that seemed like way too much time. In the end though he had a good time and felt great about all the animals and birds he helped by cleaning up their habitat.

After shoreline clean-up, they joined me at Abe's soccer game, arriving just a few minutes after Abe, who plays goalie, had a big save...and jammed his fingers. Ruby plopped down on the moist grass and announced that she was going to change into her soccer uniform. When I looked up from helping Abe with the ice, Ruby was sitting right there on the sidelines in her candy-cane striped panties pulling her white soccer socks up over her thighs as high as she could get them, which was almost all the way. I wish I'd had the camera.

I scrambled off with Ruby to her game, where she ran around in a tight pack in 4 on 4 competition. This group doesn't play with goalies and is just learning the concept of passing, but the growth from last year in focus and stamina is amazing. Just before the second half the coach said "I know you're going to score a goal this half, Ruby, whaddya say?" He held his hand up for a high five and she jumped to slap it. Three minutes later she scored on a long kick through the pack. She was beaming!

When we finally got home I settled into a cushy living room chair to write while Paul headed outdoors to attempt to tame the garden. Oscar took a nap, Abe read, and Ruby played in her room. After his nap, Oscar joined Paul in weeding the front walk and I wandered out a little later to tackle some overgrown bushes. (These projects are so long overdue that we usually just stand at the edge of the yard, shake our heads, and go back inside.)

Right around 6pm, the time we should have been thinking about dinner, but weren't, Oscar started asking to go to the park to ride his bike. I was still outside clipping the rosemary and Paul was pulling out a rose bush that had damaged our fence. Oscar felt strongly and tears started springing out of his eyes as he made his case. This is not a terribly unusual scene, but what struck me was what he said in the best calm voice he could muster:

"I just don't get why every one else in the family got to do something they wanted to do today except me. This is the one thing I wanted to do today!"

While he was maybe being a teeny bit rigid, he had a darn good point and he articulated it beautifully. His siblings probably would have just said "It's NOT FAIR" and stomped off to their rooms.

So, guess what's at the top of the to-do list for tomorrow?

Oscar recovered quickly from his disappointment and we ended the day eating burritos atop a hill overlooking the San Francisco Bay. The sun set a bit to the right of the Golden Gate Bridge, disappearing through bands of pink and orange behind the shadowy Marin Headlands. Ruby and Abe kicked the soccer ball up and down the hill while Oscar counted the dogs and giggled at my silly jokes.

And Paul said, "Today was a pretty good day."

Time

2010-09-22T22:22:00.000-07:00

Oscar's obsessed with his watch. I've posted here about his dangerous habit of walking across streets with his gaze fixed on the small blue digital face attached to his slender wrist. This summer I had to confiscate the darn thing during his educational therapy sessions because he was checking the time so frequently that he couldn't concentrate on his work. Today, when I picked him up from school at noon for his weekly OT appointment he looked at his watch, smiled and said,

"You're early. It's only 12:01. You don't usually get here till 12:05." He was talking as if he'd caught me in the act. Of what, I don't know.

He wants to know the exact time for everything -- what time will we leave for school, when will our friends arrive, how long does he have to spend on homework? It drives me a little nuts.

Our biggest issue with time, though, is around naps. Oscar still needs a nap -- he's exhausted after a long day at school where he works so hard physically, cognitively and socially to keep up. He rests every afternoon for 1.5 to 2 hours and if he misses that nap, or stays up too late, we see it almost immediately in his behavior. More meltdowns, less flexibility. Or he falls asleep. After a busy day and late night on Saturday, he just curled up on the couch and dozed off on Sunday morning while Abe and Ruby jumped on the trampoline and built Wedgit structures that inevitably crashed inches from his head. He'd shift or stretch but his eyes stayed closed.

As tired as Oscar gets, he resists the transition to nap. Every single day, as I'm tucking him in, he asks me, "How long?" I never answer with an exact time because I know that if I do he won't go to sleep. Instead he'll just obsessively check his watch until the appointed time and then pop out of his bedroom, pleased but unrested.

Every once in a while one of us will slip and say, as a way of coaxing him into his room, "C'mon Oscar, just a short nap." That one little word -- short -- can set off a 15 minute discussion of what that means exactly. Half-hour? Hour?

Today, as I was tucking his yellow down comforter around his narrow frame and straightening the hand-made quilt on top, Oscar hesitantly asked, "So, when can I get up?"

He knows that some days my patience is gone by tucking time. Some days I've already spent thirty minutes talking him through the pre-nap bathroom routine: sit down, no talking, wipe, flush, wash hands (rinse, soap, rinse, dry). Some days I've emptied and refilled the dishwasher, sponged off the table and counters, taken out the garbage, and thrown in a load of laundry and he's still in the bathroom.

Today was no different, but I was feeling patient.

"Oh, I'll know when you're done napping," I replied with my special all-knowing smile.

"You will?" he asked, smiling back, no doubt relieved at my light response.

"Oh yes", I joked, "I peek in on you when you're sleeping and I can tell. You're like a turkey in the oven with one of those temperature thingies that pops up when it's done cooking."

"I am? Really?" he asked, giggles erupting around the edges of his red lips. I know he was trying to tell if I was teasing him. He was also enjoying the turkey metaphor, even though he's never seen one of those thermometers. (I so rarely reference food when I'm talking to him that the reference alone is worth giggling about.)

He ended up sleeping for two solid hours.

At dinner tonight I challenged him to not look at his watch. Every time he did I would yell "AHA!" and he would laugh and bury his wrist back in his lap. It quickly became a game, with Abe, Ruby and me all baiting him with questions like "So, Oscar, how long, if you had to guess, until bedtime?" and "Daddy said he'll be home in 20 minutes. What time will that be?"

He fell for each silly question -- first lifting his elbow in his slightly exaggerated fashion, then jiggling his wrist to work his sleeve down his forearm to uncover his watch. But, just when his eyes would come to rest on the little blue face, he'd realize and start giggling all over again.

It's taken me a while, but I really think humor is a great behavior management tool for Oscar. Everything we read about PWS when Oscar was a baby emphasized that people with this disorder are too literal and have trouble understanding the humor in situations. Yes, Oscar definitely struggles with subtler social cues. He doesn't get all the jokes, but he actually really enjoys humor and gentle teasing. And I think all the giggling releases some of his pent-up anxiety and wards off tantrums. That's my theory anyway!

Transitions and Paperwork

2010-09-20T14:30:00.000-07:00

I'm sitting on the scuffed hardwood floor in my bedroom right now, surrounded by piles and piles of stuff. Paul and I have decided that we have to "address" our bedroom. Binders, books, newsletters, files, printer cartridges, spare change, financial records, and dust, lots of dust, cover every flat surface. And while there's a large armoire desk in here, it too is so weighed down by odds and ends that I can't work there. Instead I move my laptop from room to room, leaving bills on one table, school forms on another. I can't find the stamps, or the envelopes. It's time to deal.

The problem is that "dealing" isn't easy. So many of the binders, books, and files stacked on every shelf and corner contain information about Prader-Willi syndrome or Oscar and I actually have to go through them sheet by sheet to figure out what I should shred, recycle or save. I've been avoiding this for years.

Paul found a large plastic bin in the basement that I can use to save the stuff I don't need every day but am afraid to part with. So far it's filled with VHS tapes: four from previous PWS conferences, one Discovery Channel show on PWS, and a documentary "Maribel" about a young woman with PWS. I don't need these every day -- they don't need to be in my bedroom or even on the main floor. I'm trying to decide what else will go in there -- the developmental tests from 2001 on? The nearly 10 years of PWSA and PWCF newsletters? Medical records and notes from therapy sessions starting in December 2000. IEP files starting in what year?

Sometimes I actually do need to look at this stuff. Just last week I scoured through five years of speech notes to find the recommended interventions for stuttering. And the week before that I lifted several paragraphs of verbiage from a 2007 IEP mediation agreement.

School started a couple of weeks ago and all three kids are settling very nicely into their classrooms. Abe is a 7th grader now and cracking me up with his sudden interest in choosing his outfit, combing his hair and learning to text. He's also working hard in his classes and playing a new sport. Ruby's a kindergartner now, and I really have never seen her transition so smoothly from home to school and back. Instead of clinging she's hugging, instead of growling she's waving. She bounces into her classroom in the morning, and when I pick her up, unintentionally late every day, she's cleaning the tables with a soapy sponge and a wide smile.

Oscar's a fourth grader now. His classmates are the same ones he's been with since Kindergarten and his teachers have all known him for years. His transition has been smooth too -- no major behavior outbursts or fits of non-compliance. Sure there have been a few sticky parts, but with his aide and teachers, we're on it. Still with any transition, even in circumstances as familiar and friendly as these, there's a lot of work. I'm coordinating with therapists for his OT and speech services, getting his computer programs up and running, creating new ways for us to communicate. (I got that website going!) I still need to write a letter to the school staff reminding them of Oscar's issues. I think they're doing great but they requested a refresher. (Yes, this school ROCKS). I also need to revise his lunch activities chart and fill out a form about my goals for him this year. Our IEP is still not resolved and I'm waiting to hear back from the lawyer on that.

It all gets a little overwhelming.

On Saturday I attended our local PWS support group meeting in San Franciso. Paul and I started going to these meetings when Oscar was just two months old, and these people are like family to us now. We've supported each other through tricky times -- surgeries, dealings with school districts, concerns over food and behavior. We share information on doctors and the best place to get a sleep study. Most of the time we bring the kids -- there's free childcare -- and that gives Oscar, Abe and Ruby a chance to interact with kids who face the same challenges, whether as a sibling or as a kid living with PWS.

I hadn't been to a meeting in a long while. The kids' sports and school schedules often conflict and I sometimes find myself choosing a "saner Saturday" for the whole family. This week, I left Paul juggling two concurrent soccer games and a birthday party. I was so glad I did. We welcomed two new families and a group of three film-makers who are starting to work on a documentary about PWS. We took turns giving updates and requesting help on difficult issues.

As overwhelmed as I have been with what it takes to keep a kid with PWS going, I didn't find the need to even talk about our family very much. In part I sensed that others needed more time. But also, when I looked around the room at the new and familiar faces I realized, again, that my experience is their's. I am not alone. They know all about the piles of paperwork, books and medical records. They know all about school transitions and unresolved IEPs.

I didn't need to give my overwhelm a voice. And I left calmer, more grounded, and also assured that we are on a good path with all things Oscar. We just need to keep going.

Things I learned on vacation

2010-09-02T23:46:00.000-07:00

Did you know that you can lift up that metal LAVATORY plate and slide the knob over to open an occupied airplane bathroom? It's an excellent trick if your child with special needs has been in a locked stall F-O-R-E-V-E-R with no sign of emerging.

Also, even if you ask very very nicely, the Fudgie Wudgie Popsicle Man will definitely not move his ice cream cart, not even a few measly feet, from his spot spitting distance from your beach towel where your child with Prader-Willi syndrome sits, mouth gaping and glazed eyes fixed on the frozen treats that every other child in Sea Isle seems to be enjoying.

And, with enough coaxing, you can convince your very stubborn child to change his putting stance from this:

to this:

by pretending to change his last name to "Woods", even if you are not a fan of that particular golfer. Technique works best if administered by athletic older brother.

("Oscar Woods" now enjoys mini-golf so much he wants to have a mini-golf birthday party.)

Hopeful Parents

2010-08-27T07:00:00.000-07:00

I'm very excited to be posting at Hopeful Parents today (and on the 27th of every month).

Hopeful Parents is a wonderful online community of parents of kids with special needs. Come read my post and check it out!

Sea Isle

2010-08-23T07:27:00.000-07:00

For five years now my family has rented a place in Sea Isle City on the Jersey Shore in August. We fly out from California and meet up with my parents, brothers, partners and kids to spend the better part of a week before heading to Connecticut with Paul's family. I always look forward to Sea Isle, especially the long days at the beach reading and body-surfing. Tumbling in the waves, I surrender in a way that seems impossible in my daily life.

The weather was beautiful this year (just one rainy day) and I finally got some exercise. I was sore for days after Beach Boot Camp but it felt so good to work my long-ignored muscles. Later in the week we found a yoga instructor to do a morning class on the beach for our family. We laid our towels in an arc on the sugary sand and faced the ocean. After a summer of thinking at every turn that "I'm not doing it right" it felt so good to gaze out into the waves in tree pose.

The highlight of the vacation though -- after the clam and cocktail-filled happy hours, riding the roughest waves, and watching the six cousins create hama bead designs -- was our family bike ride.

As we set out from the condo, our three kids miraculously riding alongside us, I turned to Paul and said, "Look at us! A year ago I never thought we'd be able to do this, but look at us!"

The ride was not without incident of course -- just after I celebrated the milestone with Paul, Oscar's tires slipped on the sandy sidewalk and we looked back to see him sprawled on the ground, tangled up in his bike. He'd cut his lip, and the blood mixed with his tears and ran down his chin.

And yet, somehow we managed to go on. It took an eight block walk to CVS for water and paper towels, but Oscar did recover from the fall and remount his bike. He overcame his resistance to using coaster brakes and stopped dragging his toes when Abe and Ruby demonstrated the technique for the 100th time. He overcame his anxiety about pedaling into the wind when Paul explained that the winds were wimpy in the morning. (That's why Grandpa always sails in the afternoon!) He overcame fatigue in the last twenty blocks when I distracted him, first by looking for punch buggies, and then by watching the block numbers whiz by.

As I coasted beside Oscar on the last leg of that four mile loop (with stops for mini-golf and lunch), I realized that the bike ride was a perfect example of how things tend to go for us. For any endeavor, whether it be participating in school, playing with friends, or learning to ride a bike, Oscar supplies an enormous amount of perseverance. And the rest of us -- teachers, coaches, friends, family, even Abe and Ruby -- contribute mountains of patience and scaffolding and encouragement and humor and shaping. It's exhausting, but our collective efforts often pay off. And I am grateful for that.

Baggage

2010-08-18T17:51:00.000-07:00

Hello out there! I took an unintended four month break from this blog and don't know where to start. Four months is a long time. So much happened...and yet everything is the same. Here's what I wrote last week, on the eve of our vacation:

I'm packing for our annual big trip east, stuffing way more shorts, tees and hoodies into my suitcase than I really need, and reflecting on the summer thus far. It's not gone exactly like I planned.

For one, I've completely neglected this blog and writing in general which has left me feeling rather unmoored and completely disconnected from my special needs community. I've compensated by overloading a few "typical" friends with all sorts of "life sucks" anecdotes. They're patient but I'm sure it's getting old.

The sucky stuff has had mostly to do with medical appointments, IEPs, and associated boatloads of paperwork, emails and phone calls. I also scheduled too many therapies and activities (all important ones) with too little time for transition so that too many days I found myself careening around tight corners on my way up and over the steep hill to warmer climes where the kids swim, only to find that the last spot in the pool's teeny tiny parking lot had just been taken. Swearing under my breath (or sometimes not), I'd push a whiny and clingy Ruby out of the car into the arms of the ever responsible Abe so that she'd make it to swim team practice on time. Oscar and I would then park the car down the narrow windy road and hike back up. I had to keep my hand twisted around his swimshirt collar to keep him from straying into the middle of the road because he's been in one of those phases where he's checking his watch every five - I kid you not - seconds so that twice he almost gone flattened by a speeding car even as I screamed at him to stop checking the damn watch. As we reached the pool I'd glance resentfully at the never used disabled parking spots and berate myself twice -- once for never inquiring about getting a blue placard and another for even having the nerve to think we should qualify.

Now there have been some incredible times as well. Like Abe's baseball team winning their very first tournament in four seasons. For reasons completely inexplicable to me (given my non-sports upbringing and never before interest in baseball) I get completely consumed by this team. I think it's an island of sanity in the sea of craziness. I let my worries slip away at baseball games, and I swear, for five months of the year, it saves me. One family said they'd never seen as pure a smile on their son's face as in those moments following that big win. I saw the same smile on Abe's face...and wonder too what mine looked like.

And Oscar learned to ride a bike without training wheels. Really learned. Gears, brakes, kick starts, up hills and down, ride-around-town-with-confidence learned. This is high on the list of things I never thought he'd do when we first digested PWS, and to think that now we might be able to ride bikes to school, or rent them at the beach and ride as a family...well, this just floors me.

Ruby learned to both swim and ride a bike. (She wasn't about to let Oscar outdo her). And she's starting to spell words on her own, which is fascinating. I don't remember her first spoken word, but I'll always remember her first written one: BTRFLI. Her lengthening legs and interest in spelling and playdates remind me that kindergarten is only a few weeks away.

And, yet, even with all these wonderful moments, I still feel resentful at times. It would be dishonest to say otherwise. I'm tired of the incessant coordinating and scaffolding it takes to keep a kid like Oscar going. (And now Ruby's been seeing an occupational therapist too, so we have more exercises and home programs to follow.) I know I should be grateful and I really truly am...but right now the resentment is eating me and my usual gratefulness right up. I'm snippy and short and distracted and really no fun to be around.

Something has to change, and I think it has to be me. PWS is not going away, and, thankfully, neither is Oscar. He has a dream team of people working with him privately and at school. He himself is motivated and fun, two traits I'll never take for granted. The IEP and the school stuff will sort itself out. I just have to make sure it doesn't overtake me first.

What I need is a shift in thinking. If I could mentally pack up the unsavory parts of our life and put them temporarily aside so that my mind was free to appreciate all that is working so well, I'd probably be a whole lot less irritable. If I could open that suitcase only when I needed (say, when the lawyer is on the phone advising me about "stay put" and "10 day notice" letters) and then zip it right back up again I think I'd be a whole lot happier.

This is what came to me as I overstuffed my suitcase with books and clothes for our trip east. I think I will pack another bag -- a bag full of mental crap -- and leave it right here so that vacation might actually be vacation.

Prader-Willi Walk-Along

2010-04-19T22:41:00.000-07:00

Ok, so I've been pretty absent from the blog-o-sphere. I started a post a few days ago about being home last week with Oscar during his spring break. I wanted to complain about all the medical crap we took care of and how it led to more tests and questions for me but thankfully resulted in less stuff for him. (glasses: optional, scoliosis brace: no). I was going to go on and on about how Oscar's spirits soared all week, even when he was struggling with horrendous disfluency and fighting for every word, while mine just plummeted, tired of the doctors, tired of the stuttering, and how it made me feel even worse to be the one complaining. But then I cut my hand with a butcher knife trying to remove an avocado pit and when I got to the ER a family was in distress over the attempted suicide of a loved one and, well, I finally got some perspective.

Instead of that post, I steered my efforts toward our annual Prader-Willi Walk-Along fundraising letter. The walk is this Sunday and we're gearing up. Boxes and boxes of sky blue t-shirts sit in our basement, along with thirty some informative signs and their accompanying stakes which we place along the mile plus walk route that looks out over the San Francisco Bay. We'll drag out our huge white tent to use as the registration booth and print out several pages of labels with Oscar's picture to be worn by friends and family who join us for the walk. I'll make lunches for our family and our Southern California PWCF leaders who always come north to help our local support group pull off this event. We'll help set-up, we'll walk, we'll sit and enjoy the band, we'll talk with other families while the kids play picnic games and get their faces painted. And at the end of the day we'll feel grateful for who Oscar is, for our friends and family who support us from near and far, and for the wonderful people we've met on this unexpected and admittedly unwelcome journey. It'll be good.

Tucson

2010-03-31T15:12:00.000-07:00

We're in Tucson for Spring Break. Paul and I have only been to the Southwest once before and never to Tucson. We've learned the names of so many of the beautiful native desert plants and cacti-- ocotillo, palo verde, barrel cactus, prickly pear. But the saguaro cacti are especially stunning standing tall on the hillsides against the reddish canyon walls in the early morning light.

Hikes in the canyons and side trips to Biosphere 2, the Desert Museum, and a spring training game (sadly, not the Oakland A's) have filled our days here along with afternoon marathons at the pool and tasty dinners out.

Today's adventure, though, was the highlight of the trip. Paul, Abe and I hiked an ambitious 6.5 miles roundtrip up Bear Canyon to Seven Falls. In addition to seven falls at the end of the trail, we also crossed the stream seven times on our way up. Scouting for the best route and then boulder hopping without once falling into the rushing stream became our game. Pressed for time, we hustled up passing other groups, and paused only for a few moments at the top to enjoy this stellar sight:

I wish we could have sat and bathed in those cool pools but we were late so we ran much of the way back down the switchbacks, dancing around the rocks along the trail. We crossed the stream deftly in all seven spots, experts now. Our water bottles clanked from their caribiners as we happily raced on the sandy paths between crossings.

At one point Abe said "This is so fun! No one is crying, no one is complaining and no one is worrying about anything!"

The "no one" he was referring to, of course, was Oscar and Ruby who we'd left with Paul's parents this morning so we could do this challenging hike quickly. I know our energy sprang in part from the freedom we all felt, unencumbered by the younger two who would have struggled. Unconstrained we could push our bodies while our minds, so used to answering questions, allaying anxieties, and creating games to coax O and R along, could relax.

It was a wonderful feeling and I'm thrilled Abe acknowledged it.

We've had very little internet access here in Tucson, so while I meant to join a conversation about siblings and responsibility started by Louise's great post over at Bloom last week, and continued on Elizabeth's wonderful blog, I've just not had the time. I also think that I've been composting (to borrow from Natalie Goldberg) my thoughts. I write and think a lot about siblings, but conversation, even in cyberspace, forces one to examine assumptions and rethink.

Though I have tried hard to protect Abe from feelings of responsibility over Oscar's current and future care, a certain amount is just unavoidable. Abe certainly is a deeper thinker and more compassionate person because of his experience as Oscar's older brother. And while I do at times wish for something different for him, I know his life is ultimately enriched.

But I also know that, as much as we adore Oscar, we need to have more adventures with Abe alone to regroup and reconnect away from the distractions and burdens of PWS. Today's outing was a wonderful reminder that Paul and I need to create these opportunities at home, and not just on vacation.

Oscar's Clay

2010-03-23T23:11:00.000-07:00

Oscar loves to work with clay. Last year, in second grade, his teacher integrated clay work into so many aspects of the curriculum that by year's end his dresser top was full of projects -- owls, butterflies, a frog sitting on a lily pad, and a clog-like shoe to name a few. He's most proud of his bowl though, the one he made for soup days at school. He etched the names of his favorite animals into the center and glazed it orange, his favorite color.

Art was something I'd written off as a goal back in kindergarten or probably before. As a preschooler, Oscar was never that interested and his fine motor skills and executive functioning deficiencies always seemed to get in the way of starting (or finishing) a project. Aside from some finger painting as a toddler he pretty much avoided the art scene.

Until kindergarten. I clearly remember telling his kindergarten teacher that we should just skip the drawing stuff and focus on letter formation. Thankfully she didn't take me seriously. It took a lot of behavioral and OT work, but by the end of that year Oscar was drawing simple figures and loving the twice weekly kindergarten art class. The lower grade art specialist told me several times a month how much she enjoyed working with Oscar and how he seemed to have "an eye". She'd pull me into the art room before school and dig through the piles to find Oscar's piece and point out her favorite parts of his work. His work was always more rudimentary, more spare, than the other kids but she'd see past that and focus on what was there, in a way I couldn't before. She'd worked with kids with disabilities before and had that ever-precious skill of knowing when and just how hard to push. Oscar responded to her approach and started to love art.

Now a 3rd grader, art is one of Oscar's favorite things about school. He's gone from hiding under the tables when the markers come out to jump-up-and-down-excited. I wish I could take some credit for his enthusiasm or skill -- but I'm pretty sure he got his genes from his Nana, who is a painter, and his Grandpa, who is a sculptor.

When he heard that his now-retired 2nd grade teacher was offering an afterschool clay class he begged me to sign him up. Oscar so rarely insists like this so I was inclined to honor the request. But the logistics were complicated as usual. He'd have to skip his nap, and he would need an aide -- to meet him after school, give him his snack and then escort him to class where he'd need help staying on task. He would need an aide to answer his never-ending questions and talk him through the inevitable anxious moments or meltdowns. And I really wanted that aide to be able to drive him home too so I didn't have to schlep across town yet again.

While I sat spinning my wheels, the clay teacher herself steered a former student - now a high school senior who drives -- in my direction. (Oh how I love our school community!) So every Monday afternoon Oscar stays after school for clay class and I get to spend an extra hour or so with just Ruby who craves that "special time". Oscar comes home exhausted but sated. It's a great set-up, and I've been so caught up congratulating myself that I finally have some after-school things going and time alone with Ruby that I really didn't think too much about what Oscar was actually doing in class.

So, I was rather surprised when I saw Oscar's pieces in the Clay Show today. It's clear he had some help. And yet, the pieces are also so very Oscar.

Here is Oscar's heart -- filled with the carefully etched names of his favorite animals, just like his soup bowl. I knew our aide was a good fit when she told me how hard Oscar worked on this heart and that he was very anxious that it wasn't red enough. "If he asks," she said, "just tell him it's VERY red." Exactly, I thought.

And here are Oscar's hands. We all love the hands. Even Abe went on and on at dinner tonight about how awesome they are while Oscar sat straighter and straighter and nodded proudly in Abe's direction. And they are definitely Oscar's -- so thin and delicate with those inexplicably curved fingers. He told me he picked the glaze closest to his own skin color. "Yes, you, after a month in Hawaii," I joked with him, but he didn't get it. That's ok.

And, finally, the proud artist! Artist. I never thought.

PWS featured on Discovery's Mystery Diagnosis!

2010-03-21T17:02:00.000-07:00

PWS is featured on Discovery Channel's Mystery Diagnosis tomorrow March 22nd at 10pm. "The Boy Who Couldn't Stop Eating" is the story of Conor Heybach who is now an adult (and serves on PWSA's Adult Advisory Board). From the show's description I gather Conor wasn't diagnosed until he was a teenager.

When Oscar was first born and for several years after it seemed like the only media attention that PWS received was sensationalist and depressing. As I remember it, kids were often portrayed only as food-seeking monsters and parents were depicted as clueless and desperate. (Admittedly my memory is poor and I was particularly sensitive in those days) We in the PWS community used to tell ourselves that any awareness is good awareness, and it is true that some people were subsequently diagnosed with PWS because of those shows.

In the past few years, though, I feel like there is interest in more sensitive treatment of PWS in the media. A month or so ago I was contacted by a television producer who is putting together a show on PWS, also for the Discovery Channel. When I spoke with her she was thoughtful and bright and genuinely interested in all aspects of the disorder. I'm definitely not opposed to exposing the more difficult parts of PWS, but I do care that treatment of PWS be thoughtful and thorough and that the individuals with PWS and their families are shown the deep respect they deserve.

I feel like we are in a new era, and so I'm hopeful about this episode of Mystery Diagnosis.

My Baby Rides the Short Bus

2010-03-16T13:37:00.000-07:00

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!)

Baseball Season

2010-03-16T01:25:00.000-07:00

It's baseball season again! The house is littered with aluminum bats, muddy cleats, white and gray polyester pants in three sizes, and long navy blue socks. I've spent hours entering five teams worth of practice and game times into my calendar. I'm team parent for two of those teams so I am also creating and updating rosters, assigning snack shack shifts, and communicating game and team photo times. So much work, and yet, it just feels right. Seven months without baseball was way too long.

Abe had practices and scrimmages almost every day last week and a tournament this past weekend. He tapes the rosters and schedules for his three teams to the kitchen door and marks his games on the family calendar. Ruby's first t-ball practice was Saturday morning and she showed up at breakfast in full uniform. Her pants, which are supposed to be knee length, reach her ankles and I had to cut a full foot off the bottom of her navy and white baseball t-shirt so that it didn't bunch once tucked in. She's especially excited about her new pink bat with the words Girls Rule emblazoned on the side.

Oscar is playing Single A again this year and has already had two practices. With Paul in Brazil last week I played the role of shadow -- keeping him focused and moving him from station to station where he's learning to properly throw, swing a bat, and field a grounder. I'm hardly the right woman for the job. I make a great team parent but I've never really played the game. Baseball is so hard for Oscar but he insists. I love his determination and so I do whatever I can to make it work, including learning to throw right alongside him.

The manager of Oscar's team is a close friend and Abe's travel team manager, as well as the manager of yet another team. D is awesome -- and I mean that in the full sense of the word. I am fully in awe of his ability to manage three baseball teams so thoughtfully and skillfully and still spend time considering how to coach Oscar and every other kid (while also managing his business and raising four kids of his own with his equally wonderful and busy wife). He requested that Oscar be on his team, and the commissioners who also know us happily honored that request. We were thrilled, because D is such a fantastic coach, because Oscar thinks the world of D, and because his daughter L, also on the team, has an energy and enthusiasm that just lights Oscar up.

We got double lucky (or is it triple?) in that Oscar's classmate and good friend Ben's little brother is also on the team and their dad, is also awesome. He helps out at practices too, as does Ben, who anticipates and quells Oscar's anxiety better than most of us.

With all these supports I guess it's not too big of a surprise that the practices actually went pretty well. Oscar still takes forever to find his grip on the ball before he throws it. He argues over the right height of the tee and how to follow through on his swing, but he's paying attention and trying. He makes contact when pitched to, he's more "in the group" than he was last year, and I even saw him move his body towards a ground ball. Whenever he gets stuck or seems resistant to an activity I put on my serious face and talk about how Major League Baseball players do these exact same drills, including hitting off a tee. He was skeptical, and I definitely saw tears brimming at the base of his dark lashes, but he proceeded to hit balls off that tee without a meltdown.

Even though we know a few of the other kids and families on this team, I decided to send an email last week about Oscar, to explain. I didn't do this last year, or the year before when Oscar played t-ball. I'm not sure why, though I am sure it has something to do with vulnerability and commitment and protection.

Here's the email:

Hi Mariner's Families!
I wanted to send out a quick email letting you know a little more about Oscar. As some of you may have noticed I've been shadowing Oscar at practice, and it is obviously not my baseball skills that drive me to do so. Oscar was born with a rare genetic disorder, Prader-Willi syndrome. PWS is a complicated disorder -- the hallmark of which is insatiable appetite. I know it's hard to believe since Oscar is rather thin, but his diet has been painstakingly managed since birth. On the field you'll notice Oscar's reactions and processing are quite a bit slower than a typical kid. It just takes him longer to do everything. He also stutters, perseverates and has some anxiety. I'd feel remiss if I didn't also add my (clearly unbiased) opinion that he is also an endearing and awesome kiddo that works so hard at everything he does. Baseball is challenging for him but HE LOVES IT. This is his second year in single A and he is so proud to be a Mariner.

Paul (my husband) or I will be with Oscar at practices and games just to make sure that his extra needs don't get in the way of other kids getting the coaching and play they come out for. Coach D (L's dad) and D (F's dad) have also both known Oscar for years.

We are happy to answer any questions you or your child may have about Oscar. We talk about PWS a lot and are very comfortable with anything that comes up. We also feel like kids are so understanding when difference is acknowledged. If your child has questions, here are a few things we often say with younger children -- Oscar was born with very weak muscles and he's worked hard to get stronger. Also, sometimes it takes longer for words to get from Oscar's ears to his brain and then back to his muscles (slow processing and reaction times). Oscar's brain gets stuck on an idea and it's hard for him to stop thinking about it (perseverating). And regarding food, Oscar's body doesn't know when he's full so his parents always give him the right amount of food to keep him healthy and strong. (insatiable appetite)

The only thing we really ask, for Oscar's safety, is that he never be offered or given food. We'll always be around too, of course.

Ok, in the end, not a quick email... Anyway, we're really excited about this team and look forward to a fun season!
Go Mariners!
Mary (and Paul, Abe, Oscar, Ruby)

My email set off a flurry of other emails. One from coach D to the team saying wonderful things about our family and Oscar, and Oscar's love of the game. I was really touched, and had that feeling I get sometimes that we have a whole army of supporters. I got several other emails, including one from another dad who coached Oscar as a t-baller. He said that he remembers Oscar's determination and success with hitting and that he was such a pleasure to coach. (I remember only my sleepy kid on the bench waiting for his turn to bat and my spacey kid sitting in the dirt at 2nd base watching balls go by...). The other Mariners' coach emailed to say what a great kid Oscar is and how glad he is that Oscar is out there doing what he so clearly loves. And finally, I got an email from a mom saying she's so happy her son is on Oscar's team, "literally and figuratively". Talk about getting it.

The point of this post, if I can finally get to it after so much rambling, is that I truly believe in giving people the information they need to interact with your kid with special needs. Over and over again, at school, at camp, and now at baseball, I am often initially hesitant to share but when I do I am stunned at the compassionate and thoughtful responses, first from the adults and then from the kids as they get to know Oscar and are supported by their parents, teachers, and coaches in understanding O's struggles.

It is hard to put myself "out there" in an email to people I've never met. Not because I am a particularly private person -- if you know me you know I am not -- but because it is hard to turn all of the attention onto our family. I feel bad clogging up strangers' inboxes. I question whether people want the full story. Perhaps I don't want to bias people against Oscar before they've actually met him. And yet, when I do share, the attention we get is the perfect kind. People in our community seem to be genuinely glad we are here and that Oscar is out in the world insisting on doing what he loves (baseball, clay class, Los Mapaches, zoo camp). And they genuinely like having the information so that they can help Oscar be successful too.

And so begins baseball season. Three very happy children and one grateful and busy mama.
Go Raptors! Go Mariners! Go Braves! Go Thunder! Go Cobras!

Fine

2010-03-08T23:03:00.000-08:00

This past weekend was a blur of baseball practices, a kid's "rock" concert, dinners with friends, and a school auction (one of three to attend this month). Paul left for Brazil Sunday morning, and I let the kids watch two straight hours of Scooby Doo while I finished cleaning our bedroom. I had no fewer than twenty books piled next to my side of the bed, all of which fall neatly into three categories (essays/memoirs written by mothers, writing, fiction). Unfortunately by the time I stagger into the bedroom at too-late-o'clock each night I'm too tired to read more than a couple of pages. So the books sit on the floor and on the bedside table and collect blankets of thick dust until the site of it depresses me and I grab a rag.

I allowed the TV on Sunday because we all needed the downtime, especially Abe. Saturday, after an early morning baseball practice, he came home to an empty house, made a snack, changed his clothes and rode his bike two miles across town and competed in his first track meet. He was the only kid from his school who showed up for the meet. He waited outside the entrance gate, confused I imagine, until his coach spotted him and lent him the $4 entry fee that I had failed to provide. When we arrived an hour or so later he had just finished the 1500 meter, running his personal best (6'15") but still coming in last in his heat. I spotted him from afar -- he was the only one in the huge crowd wearing his school's navy t-shirt and baggy shorts. His hands were on his hips and he was pacing, gingerly, wincing maybe, and blowing air from his red puffed cheeks. I could read his disappointment from mid-field, but he was rather nonchalant about it when we finally reached him on the opposite side of the track.

We stayed for a bit, sitting on the crowded bleachers in the surprisingly hot March sun, eating mediocre california rolls and watching young runners streak across the finish line. These were serious runners, years younger than Abe, and dressed in sleek tight shorts and shirts, patterned knee highs and those shoes with the spiky cleats on the bottom.

"Real track shoes," Abe said with an uncharacteristic hint of jealousy.

I felt like I was watching future Olympians. I saw arms pumping with perfect precision, chests thrust forward, cheeks rippling in the wind, heads dipping as they crossed the finish line to grab that extra 1/10 second. We stayed until Ruby had to pee, until Oscar's friend got politely bored, until Oscar's mouth and back started drooping signaling major fatigue. We'd already carted this troupe to the Dan Zanes' concert up at UC Berkeley earlier in the day and they were starting to melt.

When we left Abe was sitting at the edge of lane six learning how to time the 100 meter dash with his coach who had taken him under his wing. I whispered through the chain link fence that I'd be back in a little bit after I dropped off the friend, ran an errand, and got Oscar down for a nap. Abe nodded -- he was fine. He was totally fine, despite being the only kid from his school, despite knowing no one but the high school coach who was working the event, despite not having any cool running gear, despite never having competed in these events before. He ended up running the 800 meter (which I also missed) and the 300 meter, breaking his practice record by four seconds.

Paul and I reflected on this a lot this weekend. We wondered if we were pushing Abe towards too much independence, forcing him to take charge of his stuff and his self at such an early age. On the other hand, he chose the meet over the concert. He chose to stay at the meet when we left. He chose to run in those events, a newcomer among veterans.

Earlier this week at the dentist I learned that Abe's dental hygiene continues to lag behind that of Oscar and Ruby and that while they can return to six month appointments, Abe still needs to go to the dentist every four. I was frustrated when I heard this...

...in part because Abe's clearly not taking appropriate care of his teeth
...in part because I'm clearly not helping Abe take care of his teeth
...but mostly because if you have two kids going to the dentist every six months and one going every four months that pretty much means we're all spending way too much time at the dentist.

So I asked the dentist if Abe could come by himself. After all, he rides his bike to school most days and her office is practically on his way home.

She whispered that technically kids were supposed to come with an adult, but that it might be ok. She could send him home with a report card, as long as he promised to show me. Of course he'd show me, I promised her.

I asked her then when kids were finally allowed to come alone. "At eighteen," she replied, "but they usually start at about sixteen".

Abe is eleven. ELEVEN. Maybe we are asking too much of him? Maybe having two other pretty high needs kids has made me lean too heavily on Abe? Maybe Abe feels that we need him to be independent? I don't know. I've been pondering this, and looking for more ways in which I can let him be a little boy once in a while too. I acknowledge all he is doing on his own and ask how he feels about it all. He says he "feels fine" and seems a little surprised that I ask. And when I think about seeing him talk to strangers at the track meet, sitting comfortably and chatting with the adults over appetizers at our friends' house, and especially goofing off with his good pal, I realize he really is totally, perfectly, fine.

More Retreat

2010-03-02T19:48:00.000-08:00

Here's a picture of the large common room at Faith's Lodge where I attended the Mother Words Retreat. Early on in the weekend I staked out a spot on that leather couch on the left where I could gaze at the fire or through those tall windows at the blue sky and bare trees. From that spot I worked on an essay I feel like I have been writing f-o-r-e-v-e-r, but that's because I still expect things to come out great the first time. (Ha! See how new I am to this writing thing?) In any case Kate's guidance renewed my enthusiasm for that piece and I started the typically painful process of reworking, expanding and deleting. Except this time I was having a blast! I think I will print out this photo and tape it to my desk (wait, what desk?) to trigger that peaceful place when I am writing.

Kate wrote a terrific post with more details about our weekend. She also wrote about how the process of writing memoir can be therapeutic but how that doesn't preclude the carefully crafted result from being art. As Kate says, "you can experience a transformation in the writing process and still end up with art." Yes! Listening to the powerful and beautifully written pieces the other women wrote this weekend, I couldn't agree more.

Ever since the retreat, post ideas have been popping into my head more frequently. I spent a good portion of the plane ride home Sunday night drafting a response to an article I recently read in the PWS newsletter The Gathered View. My mind is definitely looser -- nicely oiled from all of the discussions, readings and writing exercises. Look out for my thoughts on that article and more about daily life with Oscar in the next little while.

Retreat

2010-02-27T22:36:00.000-08:00

I'm back in the snow -- in the Midwest! When Kate Hopper announced a few months ago that she was planning a Mother Words Retreat in February, in a beautiful lodge just a few hours northeast of Minneapolis, I wanted to hop on the plane right then.

Kate's a fantastic teacher -- thoughtful, insightful and attentive to both our written and spoken words. I took her online Mother Words class last summer. You know, the one where I basically had to drop out halfway through because I was trying to cart the little kids over the hill to sunny Orinda for swimming and get the big guy to camp or baseball practice and back every day. I was also just a little caught up in the administrative aspects of baseball tournaments. It was a fun summer, but it didn't include a lot of writing. Still, I printed out every one of Kate's wonderful lectures, inserted them into my neatly tabbed binder, and kept up with the reading as best I could. Even though I didn't write much then, the class got me thinking, over some mental hurdles, and ready to write once the kids were back in school.

Kate's Mother Words retreat, and the pictures of the cozy lodge weren't the only draws. My friend Shannon, who moved from Berkeley four whole years ago lives here (for another month anyway). As does my dear friend Elizabeth who I hadn't seen in eight years. I spent the first three days of my trip visiting these friends...chatting and chatting and chatting. Even separated by all these miles for so many years, with only occasional phone calls, we still connect in the ways we always have.

I also got together with a high school friend, Michelle, who I hadn't seen in 19 years. We found each other again on Facebook several months ago and before I knew it we were sharing our favorite poetry (remarkable in that I don't read too much poetry) and connecting over life changes, grief, and children. To meet up with her in person yesterday morning in a busy Minneapolis cafe was such a treat, and still not enough.

And now I am here, at Faith's Lodge, in rural Wisconsin with five other writers and Kate. The lodge is beautiful and homey -- leather couches and fireplaces bring warmth to every common room and guest room. I'm writing and writing, on my favorite notepad, in my small blue notebook, and on the computer, for hours on end. And we're sharing -- me and these these six extraordinary women -- the stories of our lives as we read and talk about our writing (and a few other things too!)

I head home to Berkeley tomorrow evening and my goal, of course, is to find ways to keep my writing moving forward amidst the chaos of my real life. This retreat provided a huge boost and lots of inspiration and now I *just* have to sustain it.

Skiing

2010-02-16T16:30:00.000-08:00

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.

Sadness

2010-02-03T23:25:00.000-08:00

I've been consumed with sadness and grief these past two weeks -- my thoughts revolve around my bereaved friend and her family. Her husband was a kind man with a generous heart. When Oscar was first born and I was steeped in the shame and grief of having a child with a disability, he did not shy away. Instead, he gravitated toward Oscar. He would gather my floppy and unresponsive infant from my arms and hold him, calling him "Sweet Oscar". For nearly two weeks now I've been hearing his voice softly calling "Sweet Oscar! Sweet Oscar!" I hope I thanked him. I hope he knew how important that was to me. I hope he knew that gestures like his opened my heart to love and the possibility of a happy life, even with PWS. I hope he knew.

I spent the weekend in their new hometown, amongst throngs of friends and family that gathered for his memorial service. We supported our friend the best we could, but then we had to board our plane for home. Leaving there was one of the hardest things I've done, ever, and I found myself doubled over on the sidewalk outside her house sobbing "I can't do this. I can't leave her. I -- can't -- leave -- her!!" I just wanted to crawl into her bed, wrap my arms around her, and shield her from the frightful, searing pain. Patient friends and her wise mother helped me see that we had to leave. She needed rest and quiet days with her family. This will be a long journey and leaving her then was not abandoning her forever. We will go back, we will listen, and we will remember. I think that is all we can do.

Tragedy

2010-01-24T19:00:00.000-08:00

My dear friend's husband died on Thursday. He died unexpectedly and tragically. I am grieving so deeply for her and her children and struggling with being so many miles away when I know she is in her darkest hours.

Today as I spoke with mutual friends here and one friend in her "new" hometown there, a million thoughts circled around but one image kept pushing its way back into my mind:

It's my friend in a wedding dress, surrounded by us, her deep pool of friends. She's walking somberly with us trailing behind, like bridesmaids. But instead of her train we are each carrying a heavy boulder.

If only it were so easy. If only I could step in line and carry some of this weight for her. I'd lug a huge boulder around all day, every day, if it would somehow ease her burden even just a little.

Small Steps

2010-01-22T09:00:00.000-08:00

My frustration levels are soaring lately. There's no single thing bugging me, just the usual million small ones nipping at me like mosquitoes on a camping trip. The overgrown woody hydrangea bushes with their dessicated flower heads taunt me as I trudge up the front steps each day, the piles of incomplete and overdue paperwork stacking up on the counters and the desk that is more a storage bin than a place I can work, the usual rain-dampened jackets, sweaty socks, and odd toys littering the house, the peeling exterior paint, the squeaky bathroom door that will not close, the bare drafty windows that with this latest storm allowed rain to squeeze through in dime-sized droplets. Each is small but the accumulation overwhelms me.

And then there is Oscar. Sweet Oscar who since my last post is lingering noticeably more on the edges of the kitchen watching me, lips parted, eyes glazed over, prepare our meals. I remind him that he needs to stay out of the kitchen and he obliges but then later stealthily moves through, peeking into open pots and on counter tops for clues to the next meal.

Sweet Oscar whose ears are so attuned to any conversation even three rooms and a blaring radio away. He cannot filter out background noise. I know this but it annoys me when he races out of his room, anxious and stuttering, repeating back jumbled pieces of a conversation he overheard. He hears us talking but gets it all wrong. He shouldn't have been listening anyway so I yell.

Sweet Oscar who plopped down into a crying w-sit right on the bayside bike trail on Saturday refusing to get on his bike. On the wings of last week's family exercise success we decided to try a bike ride this week. Oscar's initial enthusiasm -- stiff legged jumping, flapping arms and excited shrieks -- blew away with the mild bay winds by the trail, even though there were dogs there. So Paul walked with Oscar through the dog park while Abe, Ruby and I rode hard and fast on that long marsh-bordered route.

My unofficial New Year's resolution was to take small steps toward my goals (the usual -- exercise, writing, decluttering, house projects etc) each day, and stop letting the physical and mental clutter of my life weigh me down quite so much in the process. I wanted to stop obsessing about what I wasn't doing, and enjoy, or at least appreciate, what I was doing.

But it wasn't working.

By January 14th, a full two weeks in I was already in despair and on the verge of losing it. Hell I was losing it. I was short and sarcastic with the kids. Silent screams echoed in my brain and tugged on the nerves in my neck and shoulders as I guided Oscar through the door each afternoon, into the bathroom, pants down, shoes off, wait, wait, wait, wait, pee, pants up, turn, flush, turn, water, soap, bubbles, rinse, dry, to the bedroom, no the bedroom, head on pillow, question, not now, head on pillow, nap.

I argued with Abe which so rattled Ruby that she retreated to her art table to draw pictures of the two of us smiling, willing me to be happy again. All I could muster was "Not now Roo-boo, not now" as the disagreement with Abe dragged on.

Last weekend was better, filled with dear friends and wonderful food and drink. Though the daily demands did not disappear, they lost their urgency in the laughter and conversation. I remembered that we have friends who love us and enjoy our company and things are not so bad.

And, with help, I finally acknowledged, again, that our life is just more complicated because of PWS. While I long ago accepted that Oscar has PWS it seems I never really accepted the impact of having a child with a disability on our life. I work hard at this acknowledgment. Isn't everyone's life more complicated because of something? But I'm learning that not acknowledging, not truly accepting that PWS is a real burden that complicates our life, every day, just fuels my frustration and paralyzes me so that I get nothing done and become even more frustrated. I need to break that cycle.

And so I am trying. Small steps.

I beheaded the hydrangea. I cleared the basement of old toys and bikes and dropped them off at the consignment store. I filled 12 bags with clothing for Goodwill. I bought a shoe rack for the boys' shoes and cleaned the bathroom shelves. I re-organized the linen closet and finally fixed the print button on my blog. Not all at once. In short bursts over several days.

And instead of berating myself for all the things I didn't do while I was doing those things I stepped back and appreciated my work.

100 Dogs

2010-01-10T16:32:00.000-08:00

Ever since we watched The Polar Express (again) this year, Oscar has starting counting the dogs he sees each day with a tone that is reminiscent of Santa's when he shouts: The FIRST GIFT of CHRISTMAS! as he hands the young boy the jingle bell.

Whenever we leave the house, whether it be at 8am for that early morning OT appointment or not till late afternoon on one of those lazy winter break pajama days Oscar will call out: The FIRST DOG of the DAY! with the same joy and importance that Santa conveyed.

And then he keeps going...

"Mom, there's the FIFTH dog", "the 17th", etc. All day long. Every day.

Many years ago, when Oscar was only 20 months old, we attended a Prader-Willi conference in Utah. In my early hyper mode of trying to understand every nuance about PWS so I could be prepared for any possibility, I didn't shy away from the sessions geared toward families with older kids. In one such behavior session, the speaker emphasized that we can sometimes take advantage of our kids' behavioral traits, using them to our advantage. It sounded too easy, too optimistic, but another mom shared an anecdote about accidentally taking a wrong trail while hiking with her teenage son with PWS, extending the hike by several miles. While, if memory serves, exercise was very challenging for this kid, she got him to happily finish a very long hike by getting him going on his favorite topic: motorcycles. He talked about motorcycles for hours, but didn't complain about food or the long hike!

Listening to a kid perseverate about one subject for an excruciatingly long period of time, as some people with PWS are known to do, can be annoying and boring, especially when it is the same topic day after day. Some days I feel as though I am going to pull my hair out if I hear one more word on the topic du jour. And it's not just the perseveration, it's Oscar's complete inability to do anything else while perseverating. He can't get in the car and put his seatbelt on, get dressed for the day, or brush his teeth when he is perseverating. He follows me around chattering on, oblivious to my body language and everyone else's needs. Oscar will ramble on undeterred, even asking me questions, while Ruby shouts that she needs help in the bathroom or Abe is recounting a rare story from his day or while I'm trying to measure ingredients for a recipe so that we can eat dinner before bedtime. Truthfully, many times I have to tune him out, because otherwise I would probably have to run to the nearest window and scream and I don't think the neighbors would be too fond of that after a while.

Many families we know live with the constant perseveration about food. When is snack? What's for snack? Can I please have some more food now? I'm hunnnngry! Repeat.

Oscar doesn't do that very often, yet. He does perseverate about food, but in a different way. He'll talk for hours about the dairy farm he's going to have when he grows up and what vegetables he'll grow and whether to raise his cattle on grass or corn or some mix.

Oscar has a whole list of topics. Dogs are one, but thankfully that is mostly a counting thing with an occasional venture into how he is going to have dogs when he grows up and is in college.

Anyway, I was thinking about that mom and her son with PWS and that long hike today. I woke up feeling like we all needed to get outside and get some exercise together. All five of us. A rather lofty goal with our varying ages and abilities, but I remembered that there is a 2.7 mile paved loop around a local resevoir. We've done it before, though the kids were younger and even with jogging strollers and backpacks it was a struggle.

We decided to try anyway. I brought Ruby's bike but wasn't sure how we were going to keep Oscar going. Once we arrived, though, I realized it was going to work out just fine. Oscar shouted out "The FIRST DOG of the DAY!" before his feet hit the pavement. The promise of another dog (or two or three) around the next corner kept him going up and down the gentle hills, even jogging occasionally. Paul and Abe ran ahead a couple of miles and doubled back. I chased after Ruby on her bike and pushed her up some of the steeper hills. Oscar kept a steady, though slower pace, while he counted, but he never once complained. We all got exercise!

And Oscar counted 100 dogs. He saw the last one as we arrived back at the car. I don't think he'll ever tire of counting dogs. As I said to Paul, this could easily still work when he's fifteen.

Three Kids and a Wedding

2010-01-05T16:51:00.000-08:00

Winter break is over, the kids are back in school, and I finally have a moment to send out a post.

We arrived home yesterday from a quick trip to New Jersey for Elizabeth (Paul's cousin) and David's wedding. Ruby was one of three flower girls and Abe and Oscar were ring bearers.

Ruby took her cousin A's arm as they walked down the aisle. Check out those proud smiles!

Abe and Oscar handed out tissues to the guests on their way down the aisle. Oscar was a little slower but Abe waited for him so naturally, so patiently.

Elizabeth was glowing, and her dad (Uncle Mike) looked so calm!

Paul's sister Susan is a newly ordained Episcopal priest and she performed the wedding ceremony -- her very first one. She was awesome! I think I'd probably start going to (her) church if we lived closer.

Elizabeth and David make a wonderful couple and our kids just adore them. Elizabeth is holding her niece "Baby F"...the star attraction, after the bride of course.

At the reception we danced and danced and danced...till nearly midnight. The wedding party all received black converse sneakers as gifts from David and Elizabeth and wore them as their dancing shoes.

Oscar made it through the whole reception, falling asleep only toward the end. He tolerated the loud music, the tuxedo, fancy shoes, walking down the aisle and then later being introduced on the dance floor. He did it all with such ease and grace that I almost forgot that so many of these things can be hard for him, especially when he is sleep deprived. He was so thrilled, so honored, to be part of the wedding that he happily went along with all that was asked. He didn't want to dance much, and that was ok, but I got him to play drums with his butter knife to some of the more rockin' songs.

It was a wonderful wedding!

National Prader-Willi Awareness Month!

2009-12-27T12:34:00.000-08:00

I just found out that the House passed HR 55 which establishes National Prader-Willi Awareness Month and encourages continued federal research.

This is HUGE -- the increased awareness will pave smoother paths for all kids with PWS as they struggle with the challenging aspects of this syndrome. Awareness has changed O's life -- but educating people is so hard. This will help Oscar, but it will really help babies yet to be born, and families who are struggling in their own schools and communities to be heard, to be taken seriously.

So I send a big thank you to all the parents, local and national PWS organizations, and legislators who obviously worked so hard to make this happen!

Here is a video of Representative Ed Royce (R-CA) presenting the bill that he co-authored with Representative Jean Harman (D-CA):

Open the DOORS!

2009-12-24T15:21:00.000-08:00

I took the kids dress shopping in San Francisco on Tuesday. I know that sounds crazy -- three kids in a department store -- but I needed a fancy dress for Paul's cousin's wedding in NJ next week. The boys are ring bearers and will be wearing tuxes. Ruby and the other flower girls will be wearing matching black and white polka dot velveteen dresses with a red bow around the waist. After much debate Paul thankfully decided to rent a tux as well, but I was going to need something fancy too. I tried to squeeze into the black taffeta skirt I bought back in, uh, college. 1989? I shouldn't be depressed about the 6 inch gap in the zipper when I tried to get that thing on. I tossed out my velvet dresses from my professional days in the early 1990s long ago, but I bet I wouldn't have been able to coax their slim silhouettes above my knees either.

So, off into the city we went, with the promise of BART train rides and ice skating in Union Square after dress shopping. I did find a dress...one that Abe picked off the rack actually. (The kids scoured all the racks in the dress department gathering all the black dresses in my size. We collected two armloads and settled into the dressing room for a long fashion show.) It was pretty painless, if you don't count Oscar practically falling asleep on the dressing room floor and Ruby crawling underneath the doors taunting Abe and Oscar. But that's all to be expected.

With my sleeveless dress with an embroidered taffeta skirt nestled in the shopping bag we took off for Union Square for a gander at the red and gold ball decorated Christmas tree and the outdoor ice skating rink. On the walk there Abe asked me repeatedly if the ice was real -- a reasonable question because it wasn't exactly cold outside and because four years ago we went skating on plastic "ice" at a different shopping center here in northern California. It was horrible.

The ice in Union Square was real and the rink large enough but the lines wrapped around the temporary building. One line was for ticket holders -- those organized people who pre-purchased earlier that morning or online. The other sad line was for people like us -- anxious kids and exhausted parents who realized the journey through this line to buy tickets and then back through the other was a two hour ordeal. Ruby scampered up on top of the adjacent wall in her black and ivory Christmas dress while Oscar stuck to my side asking repeatedly "So are we going skating? How long is this line? When are we going to get in there?" It was the kind of anxious rapid-fire questioning that doesn't allow time for me to answer, and my answers, if not carefully crafted, can lead to higher anxiety levels. I can't think when Oscar is asking questions like that so I usually ask him to calm his body while I come up with a "plan".

The "plan" was to blow off the skating. Maybe come back over the weekend, with Daddy, with pre-purchased tickets in hand. Oscar and Ruby were on board with that plan but Abe's enthusiasm turned to a sulk and my guilt over dragging the kids all the way into the city just for dress shopping overwhelmed me. I tried to salvage the morning by suggesting we head across the street where there was rumored to be a giant gingerbread house displayed in the Westin St. Francis Hotel. The rotating "sugar castle" turned out to be so huge and so professional looking and not at all ginger-bready that none of us believed it was actually made of gingerbread until I read the sign. Twelve hundred pounds of gingerbread, 60 pounds of flour, 300 pounds of sugar, 400 hours of work...it was certainly real. When I spotted a few missing gum drops along the surrounding train tracks the kids finally believed me (and wanted a gum drop, of course.)

We spent maybe three minutes looking at that marvelous sugar castle and then started on a quest for a lunch spot. The streets were crowded with shoppers and holiday cheer seekers and it was hard to keep track of the kids. Ruby kept falling behind and I was so glad I topped her dress with her cherry red fuzzy jacket, the one with the hood and large pom pom buttons. Aside from being adorable on her it was easy to spot her little body among all the dark pants and tall boots on the sidewalks. Abe was voluntarily keeping an eye on Oscar which sometimes meant grabbing his arm and pulling him out of the way of oncoming walkers. Oscar was getting mad at Abe and Abe was frustrated with Oscar. I beckoned Abe to the side and gently told him that I could keep track of Oscar. Oscar was fine. He was keeping up ok and yes sometimes he didn't notice people walking directly into him, but he was fine.

After much more grumbling and whining we found a decent lunch spot -- a yummy mexican place where they serve warm tortillas with salsa and make guacamole right at your table. Abe's mood improved with food in his belly and I felt like I had partially salvaged the morning. After lunch we headed down to the BART station. As we went through the ticket gates we heard a train approaching and rushed down the escalator to catch it. It wasn't our train, but an eastbound train arrived on the adjacent track a few seconds later. I wasn't sure if we wanted to take that one either because I didn't know where we would have to transfer. After a second's hesitation we got on anyway. I figured that we could get off at the next stop if needed. As the doors started to close I realized that Abe had just barely jumped on the train in time, but that Oscar was still on the platform. We tried to stick our arms out to stop the doors but they closed anyway leaving me, Abe and Ruby on the train and Oscar on the platform, alone, in downtown San Francisco.

I started screaming:

"OPEN THE DOORS! OPEN THE DOORS!"

Abe and I pounded frantically on the doors and I looked desperately around the BART car for an emergency lever but I'm not sure I would have left my post at the door even if I saw one. Ruby stood up on the seat and screamed in panic. I remember being worried that if the train jolted forward she would go flying. Other passengers jumped up and started yelling and banging too. Oscar was frozen. His arms were at his sides (not flapping wildly like when he is upset) and his large brown eyes were wide with fear. Someone must have found a switch, or a lever, or a call button, because after 10 seconds (you could convince me it was two hours) the doors parted and I pulled Oscar into my arms.

The other passengers fell back into their seats with relief and I huddled at the knees of my kids who had scrunched into the two cushion seat reserved for people with disabilities. Ruby kept screaming so I held her while I talked soothingly to all of them. Oscar was still somewhat frozen, but he did say "I was really scared Mom". "Of course you were sweetie, of course you were!", I replied, and I pulled him in for another hug.

Ruby was scared too, and it took her a long time to recover. She begged me to carry her on and off the trains as we transferred in Oakland, and then off again at our station. She also awoke that night with a nightmare about being left behind on the platform. She didn't want me to leave her alone in her room.

I was scared too, but my heart didn't race, my legs didn't turn to jelly. Despite my screaming and banging I was pretty calm inside. And I can't figure out why. Was it because Oscar wasn't outwardly panicked? Was it because I just couldn't believe the train would pull away leaving him there? Did I not have time to process? Or is it because we have already been through so much that this seemed small in comparison?

I do think I knew on some deep level that he would be ok, that he wouldn't try to hold onto the train as it pulled away, like Ruby might have.

I think I knew he wouldn't get on the next train that pulled into the station, like Abe might have, but that he would stay right there waiting for me.

I think I knew that we could just go one stop and then hop the next train back. We'd be back in just a few minutes, ten tops. He's nine. He would have been fine. I keep telling myself that is why I didn't panic.

And maybe I was also in a state of disbelief that I let this this happen. I should know better.

He is nine, but he has PWS and he just doesn't react quickly in these situations. I should know better.

He gets overwhelmed in crowds and new places. I should know better.

Next time I will know better.

We are all fine now, even Ruby. And we've spent a lot of time talking about what to do if you get left behind on a BART platform. Not that it will ever ever happen again.

Published!

2009-12-17T23:01:00.000-08:00

The 3rd grade publishing party was today. Each of the kids published their first memoir piece in the class anthology. Oscar, my Oscar, was beside himself with excitement. Last week he nearly had a meltdown because he didn't feel his six "chapter" account of his trip to his grandparents' Lake House in Connecticut this summer was complete. He wanted to add three more chapters ("Breakfast at the Lake House", "Swimming in the Pool", and "Getting Babysitted by Lynn and Emily"). I finally convinced him that the six chapter version was perfect for the class anthology and that he and I could work on the expanded nine chapter version with photos over the winter break. Thankfully he agreed to that plan.

This is only earthshattering because Oscar has so much trouble writing. The blank page is overwhelming and leads to lots of dawdling, yawning, and crying. When he does get started he has trouble stepping back and describing the bigger picture. His printing is tiny and he erases and erases until each word is perfect. His executive functioning delays really get in the way of organizing paragraphs and his anxiety leads to perserveration about neatness. At one point in October his two aides (job share -- not two at a time!) were joking that Oscar had finally gotten through airport security on the way back east. He was painstakingly writing about each little detail afraid to leave anything out. But at that rate he would never get to the stories he really wanted to tell.

We finally decided to take another approach. First, Ginger (one of his wonderful aides), had him dictate one of his Lake House adventures -- the day the pig escaped at the local zoo. She entered his dictation into the computer then deleted phrases so he could go back and fill in the details by himself. Brilliant! This provided a framework and got Oscar excited about writing. Next, I divided the whole trip into six separate adventures or "chapters" and typed out questions to accompany each chapter. By answering the questions Oscar was writing the story of his vacation. When we removed the questions, the chapters stood alone as separate stories in a larger piece. Oscar then went back, with our help, and expanded and added sensory details. With all of this scaffolding he fell in love with writing and developed confidence in himself as a writer.

So today he proudly sat next to his piece as parents and classmates circulated around the class reading and writing comments to the authors. About halfway through the hour he left his post to recruit more readers. A couple of times I saw him approach one of the other parents and say "So have you read my piece? It's right over there!" Lovely parents that they are, they smiled and headed towards Oscar's piece to read and leave him a comment.

I love the enthusiasm. Just love it.

Here he is, smiling proudly with Ginger.

Grateful

2009-12-16T22:26:00.000-08:00

Time sure flies around the holidays...but not writing in a month has been hard. I like to put my stories down and develop them but instead they are fluttering around in my brain taking up space but losing their nuance and details. I know, I know, I should just carry that little notebook with me and jot things down but it is never satisfying enough. If I start I will want to finish and there is just so much other stuff I am supposed to be doing. "Supposed to"...a phrase I sure need less of.

In any case, as I race around town checking out all the local toy stores in between my usual medical rounds my mind keeps wandering back to a feeling of gratitude. Thanksgiving is several weeks past but still...

Every single day I'm grateful for Oscar's school (which was also Abe's and will be Ruby's), which supports and loves him, providing "just right" challenges and somehow fostering continued, even mounting, enthusiasm about school. Each morning, as he walks into the classroom, he checks the schedule on the board and has been known to jump up and down upon seeing that writer's workshop, or Native American posters, math centers or a spelling challenge is on the list for the day. The teachers, his aides, and the staff really know what they are doing and it really works for Oscar. Four years in and I still pinch myself every day. This stuff is hard for him...he's just barely (and often not) keeping up and yet he is learning and loves it.

I'm grateful for Oscar's friends who know, really know and like him. It took me a long time to believe he had friends and even when I would say it out loud there would be a big "but...." lingering on the tip of my tongue. I'm catching myself now, admitting that these kids want to play with him, are choosing to talk to him. The other day his friend Lara was supposed to come over. He hadn't seen her in 6 months because she switched schools and both kids were so excited to finally get together. The playdate ended up getting canceled (for good reasons) and both kids were devastated. Lara called on the phone instead and I could hear her enthusiastic "OSCAR!!!" booming through the phone as I stepped out of the room. The smile on Oscar's face was precious -- he said she just kept asking him question after question and he could hardly answer before she asked another, let alone ask her anything. And then there's Angie who shares Oscar love of animals and will scheme for hours with him about the zoo they're going to run when they grow up. She's patient, kind, so mature and talks to Oscar in the most matter of fact, non-alarmist way. She even orchestrated his Halloween costume, passing tips to me through her mom. I didn't know Oscar wanted to be a cow till I heard it from Angie's mom! And I can't forget Ben, his first friend at school. Ben was Oscar's de facto aide in kindergarten, before we'd convinced the school district he needed a real one. Ben is the one who nicknamed Oscar "Oskie" and now all the kids call him that, even Angie. Ben always knows what Oscar needs and can pull him into just about any social situation with his enthusiasm. Oscar knows he is safe with Ben. I think that's really it, with these kids and all the others in his class, he feels safe. Safe enough to contribute to class discussions, safe enough to do his best and not worry too much about messing up. He knows he belongs and it makes all the difference to him.

And, finally, I'm grateful for this community of bloggers and readers. I started off here a little less than a year ago and though I'm not writing nearly as much as I would like I am loving the new connections, the cyber friendships, and the wonderful writing I am reading on your sites. I am constantly moved by your stories, your struggles and your triumphs and can't believe it took me so long to get here!

So with that I'm hoping that I've ended my unintended month of silence and can get back to a more regular blogging schedule!

Birthday Eve

2009-11-15T23:39:00.000-08:00

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.

Overwhelm

2009-11-12T22:40:00.000-08:00

Whenever I'm quiet here it almost always means I'm overwhelmed. I'm lacking time for reflection and writing and instead I'm speeding through the days in a fog. Last night, after I'd given Oscar his growth hormone injection and brushed my teeth, I started to put my contact lenses back in. This morning, when I dashed home between appointments to drop off a half-baked pizza for dinner I took it straight to the bathroom utterly convinced it belonged atop the white wicker hamper. With the pizza finally stored in the fridge I hopped back in the car and drove across town, right past my destination. That was the third time this week I'd lost track of where I was going and had to do a u-turn.

Overwhelm is:

A husband in Brazil and three kids in Berkeley
Posting an ad for a new aide and receiving 80 responses, conducting phone screenings from the car, and squeezing interviews in around 19 other commitments.
Watching my nearly 9 year old stutter so badly his whole face contorts as he wrestles with each word
Not having a plan for the 9 year old's birthday in 4 days.
Reading about PWS deaths and H1N1 and deciding, still begrudgingly, to get the vaccine
Scheduling that vaccine and three other MD appointments in one week.
Wondering why the 11 year old has been so quiet and lethargic for three days.
Writing a two page letter to my 5 year old's pediatrician about her obsession with food because I can't possibly explain all of the nuances of the situation with her present at tomorrow's checkup.
Wanting to edit my workshop piece for the class anthology but knowing I'm not going to have time.
Wondering why my hair is falling out, I've gained 10 pounds, and I'm dizzy again.
Other things I can't write in a blog for fear of upsetting certain individuals.
Wanting to just forget it all and crawl into bed with a good book.

Heck. I think I will do that.

Check back tomorrow for an update. Will I use sunscreen to brush my teeth? Put the milk in the cupboard? Confuse the school start time and deliver the kid 15 minutes late? Or will I add a new blooper to the list? I bet you can't wait to find out!

Dreams

2009-10-22T00:35:00.000-07:00

Oscar had a bad dream tonight and woke up crying. We found him, all wobbly and tear-streaked in his green striped pajamas, peering through the paned glass door that separates the bedroom hallway from the rest of the house. It was only 9:30 so he hadn't been asleep that long. The details of the nightmare eluded him, but the corners of his mouth turned down and his lower lip trembled every time an image popped back into his consciousness. He was dazed and disoriented so we escorted him to the bathroom for a pee and water break, hoping to erase those scary images.

Never one to miss a party, Ruby hopped out of bed a few minutes later and feigned having to pee too. Oscar sat on the toilet sipping water from a yellow plastic cup, pajamas pooled at his ankles, while Paul murmered comforting words. Oscar, still stuck on the dream, sniffled between sips.

As I turned to the task of getting the Rooster, as we affectionately call her, back in bed, I reminded Paul with a wink to blow good dreams into Oscar's ears when he tucked him back in. Oscar smiled knowlingly as I described the correct technique for dream blowing.

"You blow the dream gently into his right ear while cupping your hand over his left to keep those good thoughts in there," I instructed.

"Yeah yeah you gotta make sure they don't escape out the other ear", Oscar added haltingly from his throne.

I thought he'd be ok, then. His sense of humor was back and the good dream, whatever Paul would choose, would distract him. A few minutes later though, Oscar was back in the hallway, crying again. The bad dreams had returned.

I helped him over to his bottom bunk, which he shares with no fewer than 14 stuffed giraffes of various sizes, and pulled the covers up under his chin. I placed my hand on his cheek, pressing gently, and told him I would blow in a bigger dream, one to combat that bad dream that wouldn't go away.

I see you Oscar, standing by the chimpanzee exhibit at the Oakland Zoo. You're wearing your Oakland Zoo t-shirt and a little oval tag with your name on it. Underneath your name is the word "Docent".

Oscar didn't know what a docent was so I explained that a zoo docent is an animal expert who talks to visitors and gives presentations. Oscar nodded contentedly, his face finally relaxing. I return to the dream.

You're tall now, you're not a kid anymore, Oscar. You're wearing a backpack that holds your water bottle and you take a nice long drink because it's hot out there. Just then a school bus unloads at the zoo entrance and a river of kindergarteners flows into the zoo, headed straight for you at the chimpanzee exhibit. You see the children coming and are excited. Their energy is palpable and you remind them gently that the chimpanzees don't like loud noises. They respond to your calming voice and gather around you. You invite them to ask questions, and a little boy's hand shoots right up. You enjoy his enthusiasm and answer his question easily. Next a smaller girl, with toes pointed slightly inward, shyly raises her hand. The way you speak to the girl with such respect and care, brings a smile to her teacher's lips.

After a few more questions you slip away to the giraffe exhibit where you are giving a talk on the difference between reticulated and masai giraffes at 10am. You arrive early, Oscar, and unfold the piece of paper in your back pocket that lists the differences. But you don't really need to look at this paper -- you know it all by heart.

You turn then to rest on the black fence of the giraffe enclosure. Your right elbow is propped on the fence and your chin is cupped in your hand as you lean over and gaze at those oddly graceful creatures. You know these giraffes intimately. You study them every day. You know the tall one can reach the highest branches but he shares the leaves with the shorter giraffes. You know the calf who likes to stir up trouble, and the smaller one who sticks close to his mom. You know who comes near the fence and who seeks shade. You know these giraffes and they know you. You smile to yourself, happy, and turn back around to see that a small crowd has gathered now. They've heard about you -- Oscar, the giraffe expert! You clear your throat, take a sip of water and greet your audience.

Oscar eyelids grew heavy as I painted this scene. I kept my hand pressed lightly on his face and every once in a while he nodded knowingly as if to say, "Yes, that's right. That's right mom. You know. You know."

Tears slipped silently from my eyes, thankfully hidden from Oscar by the dim lighting. I do know. It is so simple and I can see it all so clearly. Oscar and I dream the same dreams.

Counting Cookies

2009-10-20T11:20:00.000-07:00

Have you ever noticed how pervasive food is in our culture? I never really paid attention until Oscar was born with PWS and its signature insatiable appetite. Now I see food everywhere. There are the obvious things, like every birthday, soccer game, or five minute meeting requires food. We encounter lollipops at the barber shop and orthodontist, tootsie rolls at the video store, mints at the dry cleaners. Surprise halloween treats at my daughter's school at the beginning of October. Ice cream for returning signed forms in 6th grade. Random people on the street offer my kids cookies. And finally the more subtle but still distracting references -- the seemingly innocuous cake in the chapter book, candy canes in the preschool workbook, endless tv commercials advertising humongous messy hamburgers.

When Oscar was in preschool I did my best to remove the food references from his environment. We tried not to sing "Who stole the cookies from the cookie jar", for example. He perseverated over anything involving food, especially those toy kitchens with the plastic delicacies. Rubbery chocolate chip cookies, pink-iced cakes, miniature fries...all so alluring to a preschooler with PWS who had never eaten any of those items. He was fascinated and couldn't concentrate on anything else when food (pretend or real) was nearby. Teachers eventually replaced those play kitchens with pretend veterinarian offices and the like.

Oscar's still pretty focused on food, but it's not horrible. I do expect it to get worse. We have an elaborate "food security" plan that we follow. In short, Oscar gets only the food we give him, when we give it to him. It's the No Hope-No Doubt plan. No hope for more. No doubt he will get what he needs. We follow a rough schedule of breakfast, snack, lunch, snack, dinner so he is always assured of his next meal. We have locks on the cabinets and eventually the fridge will be locked too. We kick him out of the kitchen when we are preparing food. It helps that our kitchen is tiny and there is no room for food-gazers.

Oscar's teacher asked me recently how we do it. She knows we keep food out of the environment -- he's been at the school for 3+ years and boy do they get it. No extra food, not even for birthdays or holidays. It is so smooth at school that I hardly think about it. But this week she asked if we also screen every book he reads. He'd been reading one book at school that had a list of food in it, and every time she checked Oscar was reading that same page again, and again, and again. I was grateful she picked up on it, and even more grateful that she helped him smoothly transition to another book. Knowing how and when to interrupt his perseverative tendencies is a finely honed skill.

Last night's math homework gave me a good laugh though, and reminded me how impossible it is to police the food references. The food yes. I absolutely police the food and make sure that Oscar is always in a food secure environment. But oh those references...

Here are last night's word problems (photocopied from a national math program):

1. If you have 7 cookies and give 3 to your friend how many do you have left?
2. If you have two cookies and your sister has 18, how many do you need to have the same number of cookies as your sister?

EIGHTEEN COOKIES? What's wrong with acorns, or pennies?

Oscar got the first problem without hesitation but got stuck on the second. He was trying to use the grid that was provided to solve the problem, but misunderstood, and ran out of space.

He finally came up with an answer, an answer I loved: ZERO cookies. For a moment, I dared to imagine his reasoning:

I need zero more cookies, Mom, because if you gave me two then that is the right amount for me. It doesn't matter that Ruby has 18.

Or, better yet:

Zero, Mom! You know cookies aren't healthy for my body!

Of course he didn't say either of those things. He was just confused. I considered letting it go... letting him keep that answer at ZERO, but he persevered and figured it out. Sixteen cookies. He would need 16 more cookies to have the same number as his sister.

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

No Wonder

2009-10-17T22:12:00.000-07:00

Most of my day revolved around the storytelling festival at the kids' school. Well, technically, it is just Oscar's school now...with Abe in middle school and Ruby not yet in Kindergarten. But I see it as our school, our community, regardless of how many children are technically enrolled at any one time.

I worked most of the day, picking up sushi for the event, and (wo)manning the food booth for three hours. I always find it ironic when I end up on food duty given our family's strange relationship with food. Not that I mind...if anything PWS has made me more obsessed with food as well. Back in the shady parking lot made festive with colorful California Sycamore leaves scattered about, I drank two cups of decaf Peets with three sugars and an ample amount of half and half. I chatted with fellow food workers and patrons. I ate California rolls and fresh ginger cookies. There are definitely worse jobs.

At 3pm, when my shift was up, I settled into a folding chair in the warm sun to listen to Joel ben Izzy. Oscar was up front with a friend, and Ruby was sitting with Paul. I lucked out, sitting with just our friend who popped down for the event, and Abe. I'd heard Joel ben Izzy's stories before, but live is always better so it was nice to relax and listen.

By the 4pm break though I was tired and ready to go. Abe was coughing and feeling a bit sick, and neither Ruby nor Oscar had had a nap so leaving made sense to me. But Oscar apparently wanted to stay because when I told him the plan he started screaming and crying so loudly he startled everyone around him. Even his 1st grade teacher who has seen her share of Oscar tantrums over the years looked surprised at the intensity. All I could do was take his hand and lead him out the gate. The screaming continued all the way down the block, drawing stares from neighbors and passersby. At one point I picked him up and carried him to move our show along. At the end of the block I handed him off to Paul because I still needed to shop for dinner. He screamed the rest of the way to the car, and all the way home. When I finally arrived home 45 minutes later his eyes were still red. He wanted to talk about it some more with me, so, of course, his screaming started again.

Instead of feeling compassion for this kid who thrives on routine, advance warning, and predictability (none of which I provided this afternoon), my frustration rose when he launched into his argument all over again. And when Oscar is upset he fabricates -- so he embellished, exaggerated, and lied about the afternoon's events trying to convince me that we should have stayed to listen to the next storyteller. I spoke calmly but inside I was steaming, impatient. I shuffled papers and sorted mail while he yelled at me. I wouldn't look at him. I just wanted him to stop. I reminded him three times that if he had spoken calmly while we were at school we might have been able to work something out. He only screamed louder.

Eventually we insisted that he take a break in his room to calm his body down. He did, and it worked. It always works.

But while he was resting and I was making guacamole for our chicken tacos, I realized how much energy this consumes, and how we suck it up and don't talk about it that much. We are so used to it, so much so that we wonder why we are tired and stretched and why nothing ever gets done. Okay maybe I am exaggerating a little...but when you add it all up -- the extra doctor appointments, meetings, food planning, tantrums and naps, well no wonder. NO WONDER.

More talk

2009-10-14T22:19:00.000-07:00

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

2009-10-14T10:54:00.000-07:00

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.

Two Books

2009-10-13T01:19:00.000-07:00

I plowed through Joan Ryan's The Water Giver this weekend in Tahoe, reading in the car, curled up in the bean bag by Abe's fire, on the deck in the cool fall air, and in bed late into the night. It's the story of a mom getting a second chance at being a mother when her teenage son suffers a traumatic brain injury. I keep thinking Joan Ryan is being just a little too tough on herself regarding how she parented her son before his injury. I see myself in her parenting style both before and after the accident, so maybe I just need the validation that as imperfect as I am, I am doing the best I can. To me, it seems like she was! Anyway, it's a beautifully written book and I just couldn't put it down. It got me thinking again about how I might write my story of becoming Oscar's mom. I have so much trouble getting started, always, because I don't know where I am going. I've started now, every so barely, and I just need to keep on writing without having it all figured out. I'm hoping that will get clearer as I write.

I'm in the middle of my second writing class...another wonderful experience -- this time with Susan Ito. Once again there is more to read and write than I can manage, but my faithful interest barometer is telling me that this is what I want to be doing, even if there are so many distractions, always, in my life. I'm trying to learn to be patient with myself but I'm also going to try to get back to my Oscar story for my next workshop. I sidestepped that a bit and wrote about Ruby for my first workshop last week. I was so unhappy with that piece, to the point of run/walking for a few miles unable to think about anything but paper shredders. Interestingly I cared less about sending it out to the group (a super encouraging group of writers led by Susan) than I did about how I felt about it, how it didn't say, yet, what I wanted it to say, how I wanted to say it. In the end, though, with the great suggestions I got, I think I might go back to it eventually, or fold it in to something bigger about Oscar. In other words, I survived.

The other great book I am reading is a kid's book -- Al Capone Does My Shirts, by Gennifer Choldenko. I am reading it aloud to Abe. It's been sitting on his shelf for three years now, ever since my friend who also has a child with PWS got it for her older daughter. He wasn't ready for it then, but is now and keeps reading ahead of me. He listens again while I read aloud the sections he's already read, so I think he's enjoying it as much as I am. The main character, Moose, is a 12 year old boy who lives on Alcratraz in 1935 with his parents and his sister Natalie, who these days would be diagnosed with autism. It's intense at times -- Moose's mom is set on trying everything she can to help Natalie, so their world revolves around her needs. Moose is forced to give up his own interests and often ends up in charge of Natalie while his Dad works two jobs on Alcatraz and his mom teaches piano in San Francisco. Moose's love for and shame about his sister are authentically written and I am sure Abe can see himself in Moose. (Certainly helps that Moose is also a baseball fanatic!) Moose shoulders way more burden for his sister than I ever intend for Abe...I'm trying to feel Abe out about this, but I think he is still processing. I wonder if there is a guide that accompanies this book, or suggestions for dialogue somewhere. Usually Abe and I can have some frank discussions about disability and siblings...my rule has always been that he can say anything to me, but just not in front of Oscar. I hope this is a book we can go back to, if he's not ready yet, and talk about later. In any case, I like where I see this book going in terms of an emerging acceptance and support of Natalie by even this mostly unlikely community on Alcratraz.

Back Again

2009-10-11T20:15:00.000-07:00

I've been really grumpy lately, and it's been getting in the way of posting. Kinda sucks that I named my blog "Finding Joy in Simple Things". Doesn't leave much room for complaining.

What has been making me so grumpy? I ask myself that 100 times a day, and I still don't really know. I think it has something to do with having so many things to do and not feeling like I am doing any of them well, or efficiently. If I was more efficient I would have more time for writing. If I was more efficient I would be able to focus on the kids or Paul when I am with them. I wouldn't have piles of papers on my desk, my chair, my dresser. The shower leak would be fixed, and the kitchen wouldn't still be pink and green. My attention would be less divided and I would be more present. My house would be organized, my files in order, the bills paid. Instead I am perpetually distracted, and none of those things are ever achieved.

We are in Tahoe now...the lake ("aqua blue" according to Oscar) is just visible from the cabin we rented this weekend. Tall conifers boasting humongous pine cones surround us, and the air is cleaner, fresher. Yesterday we managed a 5 mile hike with all 3 kids. Quite a feat, made possible only by Paul's willingness to carry Ruby on his shoulders a good part of the time. Oscar was a trouper, and Abe probably could have done the whole thing in half the time, but he was patient and encouraging of his siblings.

And yet, I was still grumpy. I cannot easily step away from my responsibilities even 3 hours from home. Today, during nap time, I spent at least an hour replying to emails from Oscar's therapists about events of the past week. We have a great team again this year, but transitions are always hard. Oscar's new OT is energetic and full of ideas, but Oscar keeps having huge tantrums during his sessions with her. I want her to know it is not her fault. I want to give her some strategies. It was important to write that email.

I also got an email from Oscar's behavior specialist. She is the best in the school district, and I'm still not quite sure how we got her because these days she only does trainings and has only a small handful of children that she follows directly. Oscar is one of those few kids. She's been working with us since Kindergarten. I interviewed her before I even consented to her working on Oscar's case. Even in K I knew that we could waste a lot of time with someone who was not adequately trained. This woman far exceeded my greatest hopes for a behaviorist. She watched the full five hours of PWS videos I gave her before she even met Oscar, and came to the table with a great understanding of the challenges PWS presents. She is about to go on maternity leave and has been observing O in the classroom, talking to his aides and teachers, and making suggestions to tide us over until she returns. Usually I would be there when she walked out of the classroom after an observation to catch the debriefing. Usually we would strategize together. But this time I forgot she was even coming until the day after. Sure we were celebrating Ruby's 5th birthday at school and packing for Tahoe, but I FORGOT.

So I sent these emails off today, Sunday, while in Tahoe, and within an hour had heard back from Oscar's aide, his OT and the behavior specialist. It was really pretty amazing. I know I am lucky, I know Oscar is lucky, to have such a dedicated team. More dedicated than me sometimes. I felt the weight lift just a bit, and I forgave myself for not always being on it. Today I was, and that is good.

The weight lifted a tiny bit more when Paul made us both a cocktail and together with the kids we watched our old photos in a random slideshow on my new computer. It was a miracle to me that the computer didn't crash, as the old one would have. It was a miracle that the kids weren't bickering. We were all together in this beautful spot, enjoying being together. For once, I was "in the moment" enjoying what IS, rather than thinking about what should or would or could be.

So, in the end, I am reporting on the joy in simple things, like an excellent team and good cheese, olives and a derby while watching old pictures, even ones of Oscar as a baby, and feeling happy, connected, and grateful for those near me and also those who work so hard to make Oscar's life so much smoother.

And with that I am hoping to be here more regularly again, grumpy or not. Because you know, even when I am really really grumpy I still like to write. Beware!

BIG news!

2009-09-20T21:04:00.000-07:00

I'm in the middle of about 3 posts. So little time with Paul in Brazil these last two weeks and me holding down the fort (and attending all the back to school events) alone. I'll get to finishing those stories soon, but couldn't let this day pass without announcing the big news:

Oscar learned to ride a bike today!

I was in the middle of an email to a mom of an infant with PWS (trying to remember, ironically, when it was that Oscar could finally hold up his head) when I got the phone call. Paul, who arrived home yesterday, had taken Oscar and Ruby to the park to give me some time to catch up on a few things, and apparently they took bikes. It's something Paul tries with Oscar every six months or so, but as far as I knew he'd never gotten close. His balance reactions were slow, his motor planning a bit off. I'd pretty much given up on it ever happening without some huge intervention. In fact, I've been keeping an eye out for another trail-a-bike so we could do family bike rides again. I figured we'd get a tandem some day. Tandems are cool. I was totally ok with him never riding a 2 wheeler bike.

So the call came as a surprise. I threw on my flip flops, hopped in the car and raced to the park to see for myself. And sure enough, he WAS riding a bike. Look!

I dissolved into a puddle of hysterical laughter and tears. Paul squatted down in front of me and wrapped his arms around me. His eyes welled up too.

So great are the joys. So high are the highs.

11 years

2009-09-13T23:34:00.000-07:00

Eleven years ago today I heaved my swollen body out of our green Ford Escort wagon and waddled up Solano Avenue with Paul and the crowd, stopping to listen to musicians, sampling the spicy fare at ethnic food stands and browsing the booths of local artisans. The 2nd Sunday in September is always the date of the Solano Stroll, a street fair that extends 1.2 miles and spans two cities. On that Sunday in 1998, I was 9+ months pregnant, and three days past my due date. Stimulated by the long walk and all that spicy food, Abraham decided to start his campaign that night and finally arrived 20 hours later on the evening of September 14th.

Now, 11 years later, I watched from the window as he left the house armed with just $10 and his cell phone, off to meet a friend at the Stroll. He was reluctant to leave the house at first...dragging a bit from our already busy day. But once he and his friend agreed by phone on a meeting place, his pace and mood picked up. I could see his energy change from my post at the window.

Eleven years later, then, I am still pushing him out, though with less fanfare and pain. He walks or bikes to school now, meets up with friends in public places, and shops for groceries at our local market. Sometimes he needs a nudge toward independence, but mostly he's ready for this freedom and is responsible enough to have earned it.

And while I'm helping him gain independence, I'm also holding him close, aware that he's growing up quickly. After the "little kids" go to bed, we've fallen into the fragile habit of a nightly chat. We sit companionably in the family room....me with my computer, he with his book. I'm always poised for conversation but don't want to appear overly eager so I wait for him to initiate.

He talks mostly about middle school. His transition to the bigger more chaotic environment has been stunning. New friends, new sports, new confidence and calm. I've trained myself to relax noncommittally into the cushions whenever his enthusiasm peaks or frustration rears and listen calmly and openly. I'm trying to say "hmmm" and "oh" a lot, even when I want to say "WHAT!?" or "WOW!" because I've heard that "hmms" and "ohs" are more likely to earn you a seat on your child's "advisory board".

I'm relishing his maturity and openness and wondering how long he'll let me stay in this inner circle of his thoughts.

Hopefully another eleven years....at least!

Transitions

2009-09-10T23:13:00.000-07:00

I've been thinking a lot about transitions lately. Seems everyone is posting about them in some way or another and I too am struggling with my own end-of-summer back-to-school blues. I'm actually excited for school to start (two down, one to go) and to finally get some time to think, exercise, organize, write. Instead of elation, though, I feel burdened. Three schools worth of forms and meetings, a computer that crashes twice a day, a tweaked shoulder, a needy preschooler, a dripping faucet, a half-dead frog (must buy worms tomorrow!), a sad weedy garden, and oh, a husband in Brazil for two weeks.

Then there are all the doctors' appointments that I shelved for the summer and will have to schedule for this fall. Two endocrinologists, three pediatricians, one orthopedic surgeon (or maybe two), a periodontist, a dentist, a radiologist, a psychiatrist, an ophthalmologist and a nephrologist.

There's also another transition going on -- one of hormonal changes, disrupted digestive systems, acne, thinning hair and weight gain. I keep thinking I am too young (or too old?) for this, but we all know what chronic stress does to the body.

None of it is earth-shattering. Little of it is new. But it's dragging on me like bowling balls in my pockets.

My sister-in-law is being ordained a Priest in the Episcopal Church in NYC this weekend. We were there in March for her ordination to Deacon, but are sadly missing this weekend's momentous event. I called her tonight, to wish her well, and to get the scoop on the final preparations. She's preparing her remarks for the post-ceremony brunch and mentioned that she's going to end with a prayer about transitions.

I'm going to have her send me that prayer. And then I'll post it here.

Middle School

2009-09-01T23:20:00.000-07:00

Abie's off to middle school tomorrow. After 5 years in a really small elementary school, he's moving on to the largest public middle school in Berkeley.

Three hundred 6th graders. Ten 6th grade classrooms.

Back in March when we were in the midst of the big school decision I wasn't so sure this school was the right fit. I thought it was too big and way too hectic. Even the kids were huge. I was worried about the large classes, the standards pushing and the lack of art and music. When I observed lunch recess it seemed to me that the kids were all voluntarily divided by racial background and that really bothered me.

But, when Abe observed recess he said "Mom, I like that its big. I like that there are lots of different groups of kids. It looks like there are lots of ways to be cool here and that makes me feel comfortable."

I liked his viewpoint. I loved that he was so observant and knew what he needed for this next step.

That was months ago and the stress of the decision has long since passed. The more I hear about this school the better it sounds. Terrific programs, awesome teachers, great kids. I am thrilled that he can walk or bike there, and that he knows kids from baseball and from around town who are going. It's the home of the famous Alice Waters' Edible Schoolyard. Abe's read up about the garden, tried some of the recipes, and can't wait to work in that gorgeous school kitchen. We also just found out he can play his electric guitar in the 6th grade band.

It all sounds great....except I feel like we're sending him off to college. Between before-school band, and after-school sports, I feel like I'll hardly ever see him again. Plus with a nearly 9 year old quirky brother that still naps and a little sister who could be Dennis the Menace's twin, I doubt he'll be begging to bring kids home. So, these last few days, I keep filling him up with advice just in case he really doesn't come home again. Strangely, he seems to be listening.

Things like, "So, Abe, if someone says hi, remember to smile and say hi back...If you mumble or don't look up, kids will think you don't want to be friends."

and

"Find your baseball friends and hang out with them. They'll probably be with other kids from their elementary schools, but don't let that stop you. I'm sure those kids are nice too."

I sound like an idiot. What do I know about the middle school social scene? I spent those years peering out from behind greasy bangs, trying to figure out what was so cool about Gloria Vanderbilt jeans. (It was the stitching, and at my school it had to be gold). My brand new Sears denim skirt did not cut it.

My nickname during those years? Scary Mary. Seriously.

Yea, I should probably keep my advice to myself. He's going to be just fine.

Shining

2009-08-29T11:04:00.000-07:00

When Oscar was first born (and for many years afterward), vacations, especially those to the east coast to visit friends and family, were very difficult for me. I often felt like there was a spotlight on Oscar, on Prader-Willi syndrome, and on us. I know I often created this spotlight myself with all my blabbering, but I felt like it was necessary to explain PWS, our food routines, Oscar's sleepiness, his lack of affect, his various delays, his behaviors. I got tired of hearing my voice drone on, but kept talking anyway, and was exhausted by vacation's end. And since we only saw some of these relatives one or twice a year I also wanted to show Oscar off....and, yes, I admit it, I wanted him to shine.

The thing is: Oscar does not shine on vacation. Countless transitions, disrupted sleep, uncertainty about the schedule and food often combine to make for an even more zoned out, inflexible, anxious, perseverative, and tantrumming boy. He ends up spending time alone, or with the adults because it is just too hard to keep up socially and physically with the other kids. Usually I start counting the days till we get home and back to our "normal" only a few days after we've arrived, because seeing him in that exacerbated PWS state is just so painful.

As we packed for this big trip east, I reminded myself of these challenges...and was finally at peace with who Oscar usually is on vacation. I decided to let it go...to accept what comes. That it's ok if he falls asleep at odd hours, is sluggish, has loud stomping tantrums, opts out of activities, or doesn't play with the other kids. At home he is working hard all the time. He probably needs a vacation too, I thought. A vacation from trying to keep it together all the time.

But that's not how this vacation turned out. Sure, all of the usual things still happened. But they happened less and Oscar was just a bit more in the middle of things. He tried new activities, he played with the other kids more of the time. He was funny, perceptive, kind and articulate.

In Sea Isle, he "disappeared" soon after we arrived, causing me a moment of panic. I found him out riding the surrey around the block with Abe, Ruby and their cousins. This was our first clue that this vacation might be different.

He spent hours making colorful star and circle and square perler bead creations at the big kitchen table with all of the other kids. He shared beads (except with Ruby, but she eggs him on so that doesn't count), and didn't freak out when his design got bumped and the beads scattered.

He insisted on going running with Paul, and lasted a mile in the 90 degree weather. He went swimming in the OCEAN and learned to jump over the smaller waves, and duck under the big ones. And then he rode a few gentle baby waves back to shore. He scootered on the boardwalk with the other kids, enthusiastic and energetic the whole time. As we struggled to follow along in our ill-chosen flip flops, Paul puffed in my direction, "He's actually keeping up!"

In fact, all vacation long, Paul and I just kept looking at each other, wondering if we were fabricating this change. Was our hope and love for Oscar clouding our perception? Did letting go of expectations allow us to see Oscar in a different light? Maybe, except everyone else noticed too. And he kept it up when we headed north to Connecticut.

There, instead of waking before dawn and slipping into bed with his grandparents, he slept later (yes I fiddled with the clock again) and then read till the rest of us were awake. Or played Wii with Abe. For a couple of days I left out math or phonics workbook pages for him to complete before playing Wii....and he DID.

He spent two days with his cousin Audrey, playing nicely with her, when I went to New Hampshire. Apparently they talked and talked, about animals, of course.

He disappeared after dinner one night to play Sorry with the other kids in the loft. Again, I was surprised to go looking and find him playing in a group and not alone. On a different day, when the rest of the kids wanted to play croquet, he asked me a few questions about the game and then said, unprompted, "Well, I think I can stay in the game. I want to play."

At the local amusement park, he asked to go on rides that I never thought he'd want to try, like a roller coaster, or flying tea cups. "Who IS this kid?", I kept thinking. (And, less enthusiastically "am I going to have to start liking amusement parks?")

He was stretching himself in so many ways that I decided that I was going to "help" him swim in the lake in Connecticut. He loves the pool, but there's something about the lake -- not being able to see through the water perhaps -- that was making him resistant. So one day, towards the end of our vacation, I zipped him into his life jacket and told him he could jump or I could throw him in. His choice. He wasn't happy, but I kept it light, and he was laughing despite himself. I picked him up, all skin and bones, and gently lowered him. When he got back up on the dock, I tossed him back in. And then I let him push me in, which was, of course, hilarious. He was a little mad at being coerced, but he got back into the lake voluntarily and swam around, even venturing away from the dock, with the other kids, to climb on Grandpa in the inflatable tube. When it was time to dry off, he asked if we could go swimming again the next day. (Of course it stormed the next day)

And on our last day, Abe, with his special sibling connection, somehow convinced him to try tubing. Oscar sat in the front of the tube with Abe right behind. We attached their rope to the motor boat and started off slowly, very slowly. Every couple of minutes Abe would give me the thumbs up sign to indicate that Oscar wanted to go faster. His grin grew wider with each increase in the boat's speed. My own cheeks were sore from smiling so much that I had to take a break and think of sad things to rest my face muscles.
That night, I asked everyone to share their favorite memory of this vacation. Abe shared that he loved learning how to water ski. Audrey shared that she liked watching Abe ski, which was very sweet. Oscar usually passes, especially in larger groups like this. But he piped right up with, "Well I have three great memories of this vacation. I liked going to Action Wildlife (a little zoo). I liked when all the other relatives came to visit, and I really liked going tubing." While no one dropped their margarita, we all noticed. (Ok, I was stunned.)

I don't know why Oscar was so freed up to enjoy himself and to try new things this vacation. But that's how he seemed -- free, unencumbered, and happy. He shone from the inside out.

And somehow this all makes me a little sad. It is only in times like these that I wonder who Oscar would be if he didn't have PWS. I know that Oscar has been shaped and made stronger by PWS: his perseverance and kindness most certainly are a result. And I know that I appreciate his every success and milestone a whole lot more because he has PWS and works so hard for everything. But still, I wonder.

I wonder too how I will always provide him with interesting opportunities within the confines of the disorder. Will I always be able to frame and scaffold so that he feels good about who is and what he can do?

Will he be happy just volunteering at a zoo, and not being a "real" zookeeper?
Will he accept that he can't ever be in charge of his own food?
Or live independently?
Or drive a car?
Or have children?

I try to remember to just think about today, because during those first years after his diagnosis when everything about his future was clouded with uncertainty and fear, it never occurred to me that he would be the happy, confident, capable kid he has become.

It never occurred to me that I would care less about him shining to impress others and reassure me, and care only about his lovely spirit shining through the encumbrances so that he can enjoy his life.

Interruption

2009-08-20T21:24:00.000-07:00

I'm interrupting my vacation silence because --

It occurred to me last night, as Ruby, Abe and I were driving south along I-91 in Vermont, that there is no way I could have done that two years ago: I could never have taken two kids from northwestern Connecticut to Vermont for two days, and back, by myself. I could never have left at dusk with a 3 hour drive ahead with conflicting navigational instructions, by myself. I certainly could never have followed those curvy Connecticut roads, names changing every 2 miles or so, in the dark, by myself.

Two years ago I was suffering from debilitating anxiety, provoked by the stresses of having a child with PWS, a demanding toddler, and some unexplained but persistent dizziness. No task was small. A trip to the pool was overwhelming, as was making dinner, or even a night out with friends.

So last night, as the sun was setting and a gentle summer rain just starting, I noticed that I felt hopeful and strong, not anxious, as I set out from my friends' verdant and peaceful Vermont home, towards Connecticut where I'd left Oscar with my inlaws just the day before. It was an easy trip and we were treated to a near-full rainbow and views of rolling hills and leafy trees painted in the deepest summer greens. We sang along to the Weepies and the Indigo Girls and the kids each took a nap. I joked with Abe that 18 years ago when I used to make this trip routinely to visit Paul in graduate school I didn't have mapquest directions, let alone a GPS or an iPhone. And yet, last night, I was using all three to help me navigate the last hour of dark and twisty backroads. I chose my route after consulting all three sources because it was fun and staved off fatigue.

It was a bit of an experiment for me to stay east while Paul returned to Berkeley for work. (Again, no way I would have volunteered to make the cross country flight solo with three kids, 2 years ago). The experiment is going well. Abe and Ruby loved our side trip north and it was very satisfying to me to share Dartmouth with them. The campus is so different from anything Abe has seen before -- so small, so contained, and so beautiful. We played frisbee on the green -- that large rectangle of grass crisscrossed by gravel paths in the center of campus where Paul and I played many an afternoon during our sophomore summer. We visited my dorm, and then Paul's and bought t-shirts at the co-op.

At my friends B and D's house, Abe and Ruby got to experience rural life. B and D have created a wonderful retreat-like home on 26 acres of Vermont land -- a spacious, airy, and light-filled house perched above their outdoor ice rink and, farther down the hill, their pond. My two kids romped and wrestled on the grassy lawn with their three girls with no worries of cars or other urban menaces. They raced off to the garden to pick bright orange carrots and sweet blueberries. We donned swimsuits and made the short trek down to the pond with its soft sandy shore. Ruby delighted in the newts and frogs they caught while Abe kept up a never-ending game of chase with an ever-changing fraction of the remaining girls.

This side trip is just a small segment of our vacation, sandwiched between time at the Jersey shore with my family and time at the lake in Connecticut with Paul's. And yet it stands out to me because the last time I was back east in the summer I was just starting to recover from those six disorienting and often disabling months of dizziness and anxiety. Last time I was here I was still fragile, and cautious. B once noted that I use the places I've lived to keep track of my life. Having moved so much as a child, place became a natural way to remember the small as well as significant events in my life. Now, living in one location as I have for so many years (14 years in Berkeley, 8 years in this house), it is harder to keep track of what happened when. Being east in the summer again has triggered this memory of anxious times and I remembered last night, that two years ago, when I was last here, I would not have been driving down I-91 with two kids in the dark and rain, alone.

And, even if I had, I would not have been singing loudly and enjoying the beauty of my surroundings and my children like I was last night.

5 Hours

2009-08-05T23:10:00.000-07:00

I had 5 hours to myself today. It was rather remarkable, all that time, with no one whining or perseverating or questioning my every move. I was tempted to feel guilty but I shoved those thoughts aside and tried to just enjoy. Of course, I had many errands to do -- photocopies, drop-offs, returns, shopping, etc, in preparation for our trip East, but I got to do it all alone.

We're leaving Friday for a week in Sea Isle City NJ, where my brother and I will amicably argue over the air conditioning (I'm a windows open, ocean breezes gal, he's a full blast fake air guy), but my lovely sister in law is letting us have the better bedroom so I'm going to try to suck it up this year. We'll eat lots of shellfish, but I won't try clamming -- the bay swallowed my left Keen 3 years ago and Paul peed his pants laughing at me and my muck-covered legs. We'll spend long days at the beach playing in the waves, building sand castles, and sitting under umbrellas with books. I already feel the pull of the sea and it's salty crashing waves.

After Sea Isle, we'll head to CT to spend time with Paul's family on Woodridge Lake. The cool(er) mornings are perfect for long walks and thanks to excellent planning on the part of Paul's sister, I will have some time to myself, to exercise, read, and perhaps even write while Ruby and her beloved big cousin keep two babysitters on their toes with their antics. Paul will only spend the weekend with us before returning to CA for work. I'll stay on with the kids, and take a little trip up to NH to visit my dear college friend and her family. I'm excited for Ruby to romp with B's three girls, one exactly her age. And I'm especially excited to introduce Abe to my alma mater. I'm not sure why -- I don't want him to go there...I just want to share it with him..show him where Paul and I met, where we went to college.

There's lots of packing to do, and I don't seem to be able to just toss a bunch of shirts and shorts/skorts into a bag and be done with it. I have to try it all on and see if it still fits. This past year of little exercise and too much good food hasn't helped. And I don't wear these warm weather clothes so often in Berkeley so I practically have to dust them off. But I will push forward and get the bulk done tonight as tomorrow I'm going to be raising a glass of champagne with my wonderful friend W to celebrate her birthday and her new house and then racing off to hear Vicki Forman read from her newly released memoir This Lovely Life . I can't wait! And now that I think about it, that means I'll have another 5 or so hours sans enfants tomorrow too!

Enough?

2009-08-04T22:05:00.000-07:00

Oscar and I raided the "zoo" section of the library today. I admit I was annoyed when he said he wanted to check out zoo books. He says that every time we go to the library. I snapped at him and reminded him that he's already read all of the zoo books a zillion times. He would not budge, so I caved, and searched "zoo" on the library computer. You'd think I'd have the call number memorized by now.

I'm not sure if we discovered a new stash or what, but we'd only seen two of these books before. There were some great "new" ones sitting on the shelf, including one called "Dear Bronx Zoo" featuring answers to kids' most asked questions about the Bronx Zoo. Perfect for Oscar, or what?

So, as he stood there with arms outstretched, I piled them on. Eight, ten, I'm not sure...a LOT of books, until he said the most remarkable thing.

"Enough Mom! I think that's enough!"

Since when has Oscar ever had enough of anything, especially anything to do with animals or zoos?!!

Time

2009-07-31T22:25:00.000-07:00

Oscar is an early riser, by my standards anyway. It's all part of the disability package. For years we've been trying to teach him to stay in bed till 7am. But still we find evidence of stealthy early awakenings -- books or toys scattered on the floor of the cramped closet or a light on in an odd place. Sometimes we hear him, or worse, Abe yelling at him to be quiet, as early as 5am.

Now that he is starting to learn how to tell time, things are getting a little better. But it's summer, and 7am is too early for me when I am not nodding off till past 1am. Last week, Oscar begged me to put a clock in his room so he didn't have to get out of bed to look at the clock in the kitchen. I obliged, but I tried to trick him by setting it back a 1/2 hour, thinking I could catch some extra sleep.

I should have known better. Tonight as I putting Oscar to bed he told me that he didn't like that clock I'd placed on his bedside shelf. When I asked why he said that that clock was "slow". Although he was right, I was surprised he used such accurate words to describe the clock -- his accuracy didn't fit with his tenuous understanding of the concept of time. Curious, I asked what he meant by "slow".

"Well, when this one says 6:20 the kitchen one says ten minutes to 7." He's right. And I'm impressed.

And then he says, "Yeah, it's slow, Mom. It just takes too long get to 7:00 so I only use it when I want to sleep in. I use the kitchen clock when I'm ready to wake up."

So much for trying to throw this kid off. Still, it's clear he doesn't really "get" time, and my shenanigans certainly haven't helped. Just goes to show how desperate I am for sleep! Maybe I should go to bed earlier...

Baseball Fever

2009-07-26T23:19:00.000-07:00

It would be perfectly understandable, after five baseball tournaments and never progressing past the semi-finals, if Abe started to get discouraged. He's been playing baseball nonstop since February, first with his regular league team, and then this summer with All Stars, and now with his tournament team, the Thunder. We're at tournaments most weekends, and some weekdays too. And when they don't have games, they're practicing, up to three times a week. More for Abe if you count the two weeks of baseball camp and a couple of extra private sessions. They've won games, many games, but they've never won it all. Despite all the hard work, the excellent coaching, and the deep pool of talent, they seem to always lose in the semis.

Today, though, I witnessed something really hopeful, something way more important than getting to the finals. Something I'd been waiting to see. The Thunder came back from being down 1-3 to tie the game and then win 4-3 with a walk-off single in the bottom of the sixth. I was so proud of them all, and their perseverance. It would be so easy at age 10 or 11 to get discouraged when you're down by a few runs. But today they stuck with it, battled hard, and won the game that deservedly landed them in the semis. I jumped up and down on the metal bleachers, screaming "I'm so proud of you THUNDER! Way to stick with it". I'm pretty sure Abe was too busy celebrating with his team to notice his kooky mom. At least I hope.

Abe didn't hit well this weekend. I didn't keep close track, but he did of course. "Four pop-ups today, Mom" he said as we got in the car. "All I needed was a ground-out (his specialty) to bring in a run, but I couldn't even do that." I reminded him that last week he was striking out a lot and that he didn't strike out once this weekend. He battled up there, forcing the pitchers to throw him a lot of pitches. Sometimes runners even advanced. And he really excelled at catcher in his first full-running tournament. But he's not satisfied.

Let me be clear --while he's not happy about his hitting, he's neither tired nor discouraged. If anything he's even more motivated. His first words, upon leaving the dugout after the 9-1 loss in the semis, were "Can we please go to the batting cages? I really want to work on my hitting." He was enthusiastic, almost cheerful, despite the loss not 10 minutes earlier.

And tonight, after returning from a marathon wii baseball tournament with friends, he walked in the front door and immediately asked Paul to throw him some wiffles in the backyard.

He's in a great mood, full from all the baseball (the wins and the losses) and fun times with great teammates. No, he's not discouraged...he just wants to get back out there and play.

Even as I type, he's standing in the living room throwing phantom pitches, and demonstrating the full concept of a "balk" to Paul. And I just heard them make a plan to hit the batting cages at 7:30am tomorrow. Abe's not an early riser, so this is serious.

I was talking with another parent this week about how baseball is really a metaphor for life. Whether they win or they lose, these kids are learning so much about working hard at something they love, about learning from and then letting go of mistakes, about supporting a teammate in a slump or in a streak, and about respect for their coaches, the umps and their opponents. I never played on a team as a kid, but I think if I had I wouldn't have been so afraid to mess up every once in a while. I might have learned to persevere even if I wasn't particularly good, just because I loved it. Abe is good, but what matters even more to me is that he loves this game and he keeps asking for more opportunities to play.

I'm afraid to break it to him that he starts basketball camp tomorrow.

Ice Cream

2009-07-17T23:37:00.000-07:00

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!")

Bling

2009-07-16T21:42:00.000-07:00

I am a Hopeful Parent.
But I cannot get that Hopeful Parent bling onto my blog.
I've cut and pasted and cut and pasted and pasted and pasted.
Nothing nothing nothing happens.
Then, it shows up in the wrong place.
I cut and paste again -- the code and bling both vanish.
I'm getting frustrated
I want that damn blog bling.

But before you come to my rescue, go read today's post 2 Per Bag.
It's a fabulously written and very moving post.
And as long as you are helping me, add that blog bling to your blog too.
Lots of great stuff over there, every day!

A Very Cool Kid

2009-07-10T17:17:00.000-07:00

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.

Ruby Chuckles

2009-07-09T23:58:00.000-07:00

So much of what I write about Ruby has to do with my frustration, angst and uncertainty over her temperament and food obsessions. She's a fiery little kid who likes to be in control and has a quick temper, but she is also hilarious and a source of great joy.

Yesterday, I was busy chopping veggies for our dinner salad while Abe was emptying the dishwasher ( I just had to sneak that in there...with baseball sadly on break for a few days I am cooking and Abe has time for chores.) Anyway, Ruby and Oscar were in the living room and Ruby had somehow convinced Oscar to engage in some non-zoo imaginary play. I wasn't paying too much attention -- after all they were occupied, together, and not fighting. But there were clues that she had The Three Little Pigs on the brain. She had built a tiny house for one with couch pillows, and there was vague talk of a wolf.

Now Oscar is not a particularly loud kid, so Abe and I shared a brow-raising glance when Oscar bellowed in a deep booming voice, very very unlike his own sweet tone, "And I'll HUFF and I'll PUFF and I'll BLOOOOOOW your house DOWN." And then, immediately following, before the "n" in "down" had stopped ringing in my ear we heard Ruby's impatient ever-controlling reply, "OSCAR! You're not BLOWING!" Abe and I erupted into hushed giggles in the kitchen.

And then today, she had us in fits again. Ruby is creative and bold, and insists on doing everything herself, her way. She chooses her own outfits -- brightly colored polka dots layered with stripes in a different color scheme. She buckles her own seat belt no matter how late we are, must pack her own backpack, and pinches 4 or 5 barrettes into her uncombed hair then admires herself in the mirror. She's also incredibly perceptive and sensitive. So any suggestions or corrections, if not carefully handled, can easily end in a tantrum.

So, today, when she ran from her bedroom yelling, "Look, Mommy, I put on my badysuit all by myself!" it took every ounce of self-control to congratulate her without a hint of a smile. She stood proudly while I snapped her picture.

Character Sketch -- Oscar

2009-07-08T00:15:00.000-07:00

As I've mentioned only a bazillion times, I'm taking an online creative non-fiction writing class this summer. It's interesting, fun, and challenging...and I am so thrilled to be doing something that feeds my soul. My favorite days are ones I can escape for a few hours to my favorite cafe to read the assigned essays and try the writing exercises. Here's what happened when I found myself not alone, but with Oscar, in a cafe on the day the "Character Sketch" exercise was due.

***
The cool breeze on this foggy morning is a relief after a few days of uncharacteristic heat here in Berkeley. I’ve exchanged my silver flip flops for my scuffed silver flats and donned frayed jeans and a navy t-shirt. Oscar is wearing his orange fleece, the one he insists on every day. As usual his jacket is zipped all the way up and his hood is tightly cinched around his sweet, though noticeably inexpressive, face. I didn’t check, but if I had to guess I’d bet he is wearing at least three t-shirts underneath. Some days he wears two pairs of underpants, or two pairs of socks, and every once in a while I catch a glimpse of his favorite blue and green striped pajamas peeking out from under his pants. “Remember to take the old clothes off before you put on the new”, I remind him. “Oh, I forgot”, he always replies. But he didn’t forget -- enough is just never enough, whether it be food, plastic zoo animals, markers, or, apparently, underwear.

We’re at my “office” – a café in Berkeley with foamy lattes, a large outdoor patio with clangy metal tables and generous umbrellas, and a smaller indoor space with wooden tables and repurposed dinged up church pews providing seating along the walls. We sit next to each other on one of the shorter pews, each with our very own small round table on which to work. His dark blue backpack is partially unzipped revealing two Magic Treehouse books and the phonics workbook I packed for him. I have visions of the two of us working companionably for an hour or so, me on my writing, he on his phonics, while Ruby is in school and Abe is at camp. He, though, keeps asking when I’ll get his snack and when we will leave, starting a few moments after we arrive. Kids with Prader-Willi syndrome don’t do well with uncertainty. “Mommy always has a plan, right Buggy?”, I say, using my affectionate name of the month. “You’ll have your snack here, we’ll do some work, and then we’ll head to the market.” “How long?” he asks again, looking up at me. His brown eyes, round and deep like those of a fawn, distract most people from noticing the blackheads and tiny red bumps that cover his forehead, nose and chin. At eight he is already showing some signs of puberty.

I set up my computer and check a few emails while I wait for the coffee line to go down. The barrista is chatty today and the line keeps growing, as does Oscar’s impatience. He clears his table off, quietly refusing to read or do any workbook pages, both favored activities. He gets up to twice to check on the line. “It’s dow dow dow down to four people, Mom” he reports, his face contorting with the effort of getting the words out. Waiting, especially for food, is not his strong suit.

I finally haul myself into line, leaving Oscar at his table, within sight, and return a few minutes later with my breakfast and his snack. “What am I having?” he asks, anxiety lacing his words. “An egg and some baguette” I respond. “Oh, no milk? Why no milk?” he wants to know. I used to always get him milk when we came here, but ever since he and Ruby got diagnosed with hypophosphatasia (soft bones) as well, we’ve had to cut down on his calcium intake. It’s just another wrinkle in our family’s already complex food situation.

With his snack finally in front of him, he relaxes and takes a bite of the baguette. “Mom, why why why why do you just keep looking at me?” he says with a smile. “Cause you’re cute”, I reply. “Well, stop!” He’s smiling, but he means it. He turns away from me now, and the hood of the orange fleece masks the back of his head – one leg twisted onto the bench and the other in a half kneel as he continues to savor his snack, privately. He has eaten the rubbery white of his hardboiled egg and is leaving the greenish yellow yolk behind for now. With his small slightly crooked index finger he pokes each remaining toasted crumb, and licks it off his finger…crumb by crumb. The look on his face is one of ecstasy, as if he was savoring his very first bite of chocolate after a long period of deprivation. Sometimes, he “forgets” and goes after some of the crumbs that have fallen onto the grubby brown laminate table. “Nonononnononono” I scold. Caught in the act, he visibly startles, and mutters “Oh yeah, I forgot.” I only have to remind him twice more.

When all the crumbs are finally unearthed, poked, and licked from between the bits of shattered egg shell on the small white plate, he returns his attention to the now crumbled yolk. He does not like the yolk, but it is there so he will eat it. I know this. But he does it slowly, as if I am forcing him, taking breaks to fill his plastic cup with water from the nearby brown jug. I’ve given up hoping he will not finish every last morsel on his plate, just as I’ve stopped expecting him to remember not to drink the salad dressing after the lettuce and tomatoes are gone. People with Prader-Will syndrome don’t ever feel full and most experience constant hunger. Since he was a baby we’ve been following a strict routine around food. Oscar only eats what we give him, when we give it to him. No amount of whining or crying or tantrumming will change our approach. He has come to accept the routine, but he certainly makes the most of every meal.

Occasionally, while working on the yolk, Oscar buries his head in the corner of the pew, his feet poking out behind him awkwardly. He closes his eyes for a moment and then returns to the yolk. Ten minutes later all that remains on his plate are the white bits of shattered egg shell.

Relieved from the call of the yolk, he now seems energized and pulls up his blue backpack and gets going on his phonics workbook. Finally we are where I’d envisioned. Hard at work, side by side. I sneak one more peak at my beautiful boy. He sticks his hand up to say “STOP!”, but he can’t keep that smile from escaping and we dissolve into giggles, together.
***

My aim in the sketch was to portray some aspects of Prader-Willi syndrome to an uninitiated audience. While I think I'm on the way to achieving THAT goal, it doesn't feel like a complete picture of Oscar. So until I write the rest, here's another side of my middle boy, proud of the bird exhibit he built with his kapla blocks.

Still Perplexed

2009-07-07T16:38:00.000-07:00

Rummaging through my collection of partially written posts this afternoon, I stumbled up on this from May 29, 2009:

*********************************************************************************
Ruby asked for a snack this afternoon, like she always does.
I reminded her that she'd had her afternoon snack at school.

She didn't have a meltdown.
She just nonchalantly told me that, actually, she didn't.
She passed on the school snack because she wasn't hungry then.
She wasn't insistent, just informative.
She wasn't lying.
She looked at me as though that was the most normal thing.
To pass on food.
To not feel hungry.

Maybe the modeling and the language are helping.
Maybe she's realizing that Oscar isn't her only model.

Maybe I can relax a teeny bit.
*********************************************************************************

Well, we all know that "relaxing a teeny bit" is not my forte. I did, though, for a couple of days. Ruby continued to tell me that she was passing on afternoon snack at school and I continued to give her snack at home. I was downright thrilled she was starting to hear that voice in her that had never before grown louder than a whisper saying "Hey, I think I'm full".

On day four I got suspicious. I started asking her if she was SURE she didn't have snack at school. She was calm, clear, believable. But I still asked her teacher.

"Ruby? Skip snack? Never. No, Ruby always eats snack," she replied.

And so I am back to the beginning. Wondering whether we've created this obsession with food with all the restrictions we need in our family to keep Oscar safe, or if she feels the constant hunger too. Today, she started asking for snack at 9am. She asked every 5-10 minutes until it was finally time for snack. I know, some kids are just always hungry, but I can't can't can't give her food every time she is hungry. It is too complicated in our Prader-Willi household and her metabolism cannot handle it. I'm concerned about the extra weight on her slightly compromised skeleton. I'm concerned that she also has some sort of genetic eating disorder. And I'm mostly concerned that however we handle the situation will only exacerbate her obsession.

Where did I GO?

2009-06-26T23:18:00.000-07:00

If you've been wondering where I've been (cause I sure have...how hard is it to post an update now and then?) here's what's been happening this past month.

At the end of May, I attended both showings of the 5th grade play -- The Courthouse Catastrophe. Here is Abe playing a "nerd". He was actually rather convincing.

A few days (or weeks?) later I sat proudly at 5th grade graduation. Abe chose a navy blazer and a cream colored tie covered in baseballs, of course. Each graduate was called to the podium while their uber-talented and ever-patient teacher spoke about them. (She managed to make them all sound angelic and brilliant.) After they received their diplomas, they were individually congratulated with a handshake or hug by every member of the school staff. I watched Abe walk through that receiving line and realized, again, how rich the elementary experience was for him. Lucky boy, lucky us!

Somewhere in there, I listened to Oscar read his poetry to groups of classmates and parents at the 2nd grade publishing party. The school director and fellow parents celebrated alongside me the huge progress this kid made again this year. Such confidence he has! And he's reading, really reading, now.
In honoring circle, on the last day of school, he thanked his classmates for being good friends and supporting him this year. Wow!

He also said "so long" to some beloved teachers: He's a third grader now!

(Sean, one of the teachers, gave Oscar his giraffe hat...Have you ever seen a happier boy?)

Of course, I've also been watching a lot of baseball. Abe's into the post season and playing on the 9-10 All Star Team and the Thunder, a travel team. He's at the fields for hours each day and has never been happier (or dustier, or sweatier).

In his spare time he's reading Alice Water's Edible School Yard (he'll be working and learning in that garden next year at King Middle School) and trying out new creations. He called me on my cell today to report the smoke alarm was going off. Perhaps I should not have left the soon to be 6th grader home alone cooking? Hmmm.

I'm watching Ruby become more of an artist every day. She paints, cuts, glues, tapes, and draws for hours on end. She makes presents for every occasion. If you are lucky enough to receive one, it will likely include a drawing of you with a few adornments (flowers, a rainbow, a butterfly, or perhaps a sun), a Prader-Willi awareness bracelet, possibly some spare change, and either short length of pipe cleaner or some googly eyes. She will have wrapped it herself (leaving my wrapping paper a mess all over my bedroom floor) and asked me how to spell your name so she can write it and tape it on to the package. If this sounds appealing, I think just one little hint will ensure receipt of such a package.
She's also been sporting some frilly dresses (mostly hand-me-downs from her cousin and friends) and not letting that stop her from riding her scooter, swinging from the monkey bars or climbing rocks.

When the kids are happy and occupied, I'm trying to finalize the IEP, complete respite forms, find an aide for next year (almost have that worked out -- YAY!) and keep up in my writing class, which I am thoroughly enjoying. In a good week I get to spend a couple of hours alone in my new favorite "office"...a cafe in Berkeley with small wooden tables, generous windows, free internet, outlets (!!), and a quiet buzz that somehow helps me focus on the task of the day.

Things are going well....just busy. I look forward to getting back to writing here more regularly!

No time like the present...

2009-05-29T17:00:00.000-07:00

I'm excited and nervous! I decided to sign up for an online summer writing class called Mother Words with Kate Hopper. "No time like the present", Paul said, when I asked his opinion.

Am I nuts? The summer is full of baseball, swimming lessons, more baseball, zoo camp, baseball tournaments, a few visitors and more baseball. So, yes, Abe will be playing A LOT of baseball this summer. I love it -- I love the kids' excitement, their hard work, their camaraderie, coaches, the families, and, of course, the games. It's a great community for our whole family. I don't want to miss a second of it.

But still, I'm going to distract myself slightly from all that baseball and also take a writing class. Have I ever mentioned that I have absolutely no writing training? Well...unless you include that time Senior year in High School, where I somehow got chosen to compete in a county-wide writing contest. In the van on the way over to the school where the competition was taking place the smart kid English teacher (not my teacher) gave us some general guidelines. "Use lots of sensory details and imagery", he said. So, I did. I remember the adrenaline rush and sitting on my knees as I crafted my piece. It was a fiction piece and it unfolded in my head faster than I could put it on paper. The experience was almost magical -- and I came in 2nd place! (The girl who won, for the record, supposedly won every competition, and is probably a very famous writer now). That was my shining moment. But that was 1986.

I don't care though. I've been wanting to write for a long time. I might as well learn HOW.

Today's version of a daily conversation

2009-05-21T22:40:00.000-07:00

Ruby: Mom, I'm really hungry.

Me: I know sweetie. But you just ate lunch. (about 1/2 hour ago.)

Ruby: Guess what!? We made pizza for snack at school! Not like pizza store pizza, but with a circle kind of bread. I put cheese, then sauce, then more cheese and more sauce. I made two layers!

Me: That sounds good. (calm but mentally berating myself for packing big lunches when they eat these high calorie snacks at preschool)

Ruby: And you know, we also went to the "blue room" and ate honey. I got two pretzels with honey. Not everyone got two, but I did.

Me: Hmmm. (acting neutral)

Ruby: Where are we going now?

Me: Just to the grocery store to get some things for dinner.

Ruby: What's for dinner?

Me: I think we'll have salad and bread.

Ruby: I LOVE bread. Can we have bread with thick cheese spread all over?

Me: No, not tonight, just regular bread with our salad.

Ruby: What's in the salad?

Me: Roo! (I lost my patience) Dinner is still 5 hours away! (I take a deep breath.) You don't need to worry about dinner, sweetie. I'm the mom and I can take care of the food.

Ruby: Well, when I'm a mom and I have babies I'm gonna...

Me: Gonna what, sweetie? (I'm calm again)

Ruby: I'm gonna live far away. (but she's not calm. she's hurt) I'm gonna live next to GrandMary and Grandpa (in NJ).

Me: Oh, ok. (i'm striving for unfazed)

Ruby: I'm not going to live near you.

Me: Hmmmm. (I heard somewhere that saying "Hmmm" a lot keeps kids talking)

Ruby: Can you drive me there?

At that point I burst out laughing. And poor Roo was so mad, so ashamed. She hid her face in her sleeve and wouldn't look at me. I told her I was laughing because when Daddy and I drove from NJ to CA it took us five full days. (It did take us 5 days, but of course that's not what was funny) She knew I was lying. Now I felt bad.

Ruby is always talking about food. I don't know if she is really experiencing hunger all the time or if she is just tuned into the PWS food vibe in our house. Did she learn to drink her salad dressing by copying Oscar or is she also programmed to do that?

I didn't think too much of Ruby's voracious appetite until two years ago when her linear growth slowed and her weight increased. She went from 75% height/50% weight to 35% height/95% weight. And she's stayed right around there..despite a lot of very healthy portion-controlled eating and not much access to dessert or sweets.

The hunger plus the slowed growth and metabolism just sound too much like PWS to me (it's not, we checked) and therefore gets me at my weakest place. All those horrible stories that I read in the NICU when Oscar was born about kids with PWS and the lengths they will go to for food come rushing back.

The literature made kids with PWS seem like monsters.

Eating frozen meat, digging through garbage cans for rotten leftovers, prostituting to earn money for food...

I know differently now, but I can't quite shake the images or the fears. So when Ruby perseverates about food more than her brother who actually has PWS, and we don't know why, I feel the uncertainty and fear rush in again.

I was researching her metabolism and appetite last February when one of her top baby teeth became loose. She'd already lost the bottom two. I asked the dentist if she knew of anything that could cause both premature tooth loss and metabolic issues. That's when we learned about hypophosphatasia -- we discovered the HPP while looking for something to explain her hunger and metabolism. The symptoms aren't, as it turns out, related. HPP might help explain the slowed linear growth, and certainly the lost teeth, but most kids with HPP are super picky eaters and parents in the yahoo group share ideas about how to help their kids gain weight.

Ironically, because we have a child with PWS we think we know what to do about Ruby's obsessive hunger....and yet we really don't. Ruby will live independently in the world and make her own choices about food someday. Oscar will never be in control of his food. As well as he is doing, uncontrolled access to food will put him at serious medical risk and only heighten his anxiety and behavioral challenges. But that's not the case for Ruby. At least I hope not.

So how do I raise her in this Prader-Willi household? I'm concerned about the food issues she might develop because I am restricting her now. But at four she is too young to make all the decisions.

And my gut tells me there is an imbalance of some sort causing her hunger but I don't know how to chase it down.

Meanwhile, I am saying "yes" whenever I can. I sometimes give her small treats when Oscar isn't around. I'm trying to be patient. And I'm always talking about how all of our bodies are unique and we all need different things. "Oscar's body doesn't know when he is full so I help him. Your body can tell you when you are full. You don't need to finish your food if you are full. We can save it for later." I congratulate her on good choices.

I'm doing the best I can but I wish there was someone out there that could help me navigate this tricky area.

At bedtime tonight she was cuddly and asking for lots of hugs and kisses and trying to keep me in her room as long as possible. We play the "Guess How Much I Love You" game a lot, each of us trying to outdo the other. Tonight I went with silly and said "I love you all the armpits in the world". (I know, that doesn't make sense, but we giggled hysterically anyway).

And then she said, "I love you all the way to GrandMary and Grandpa's...and back".

In these moments, the concern melts away and, with love as my guide, I trust that she will be okay.

I'm still here!

2009-05-15T10:14:00.000-07:00

I've been quiet on my blog lately. There is just too much going on.

Some triumphs: The Los Mapaches concert was Saturday in San Francisco. All three kids performed! Abe sang out and actually moved his body to the beat. He played guitar for the first time on several numbers, drum on another. He looked so happy, so confident up there. Oscar's stage overwhelm is gone. He was "on" the whole time, and his face, while singing, emanated a beautiful mix of passion and sincerity. He led one song on stage with the bombo, helping to keep the beat for the rest of the musicians. And Ruby was a ham. She made sure each one of the 300 people in attendance noticed her as she sang, played zampona, and did the motions. What a night!

And some struggles: Oscar's IEP was also this week which is always a source of major stress for me. (Placement has historically been very very hard-fought.) This year was smooth but no one could tell me beforehand that that would be the case so of course I went through all the pre-meeting anxiety and post-meeting decompression. Abe's been having a very hard time at school. We're so sad, but also proud of him for how he has been keeping his chin up and continuing to try. I wish the last weeks of his elementary years could be sweeter but I also know that it is a gift of sorts to be ready for the next adventure. He is. I just wish he could take his 5th grade teacher with him to middle school. Oscar's stuttering is at an all-time high. He can stumble over one syllable ten times before he gets it out, his face contorted with the effort it requires. I love though that he can calmly admit that he is frustrated and I can reassure him that it will pass, because it always does. I feel blessed (and if you know me you know I rarely use that word) that he has the ability to converse so maturely. Finally, Ruby's tantrumming peaked last week to the point where Abe stood by my side and told me in a soothing voice that he had seen what happened. I was crying but I am not sure why. Because I don't always know how to help my 4 year old when she rages, or because my 10 year old can step out of his pre-teen fog and angst to validate my experience?

I am ok, just drained. PWS walk and 5th grade play this weekend on top of all the baseball games and practices that are the respite in our busy life.

Fog of Disbelief

2009-05-01T20:34:00.000-07:00

Yesterday I visited Oscar's 2nd grade class and read a "book" I wrote about him and Prader-Willi syndrome. I write a new version each year and always include lots (and never enough) pictures of him having fun with his school friends. His wonderful teachers allotted a whole hour for the book and discussion, which really allowed us to delve deeply into the topic of Oscar, his challenges and how to support him as a friend. Oscar was not there -- we arranged for him to be with the learning specialist so the kids could speak freely.

The kids expressed such care, concern and compassion. Their questions were sweet and thoughtful. In the book I aimed to touch on things that distinguish Oscar from a typical kid. I wanted to validate their every observation and help them understand the challenges PWS presents. I was fully prepared for lots of additional observations -- things his brother points out all the time -- like "he chews with his mouth open", "he talks to himself", "his stuttering is really annoying", "he forgets to flush", "he can't run fast", "why does he get to take breaks and do less work". Nope. None of that.

These kids wanted to talk about whether Oscar was okay with me talking about him without him present. They wanted to know whether he'd like more play dates, and if he'd prefer to play "crazy chimpanzees" or "mad monkeys", games they made up because they knew the name alone would be appealing to him. They talked about ways to include him in games, even when it seemed like he wanted to play alone. His aide, his amazing aide, led this part of the discussion, allowing the kids to present their ideas and validating them, and also stretching their concept of inclusion to mean more than not excluding.

We talked about how Oscar knows he has PWS, but that we always focus on the positive. We don't say "You can't" but instead try to say "You can..." so he feels good about who he is and what he can do. One child chimed in and said, "I get it, you always put him on the bright side".

They did get it, on a very deep, and mature level. I knew, I really did, that this was a wonderful and supportive group of peers.

I knew, and yet I am still in a fog of disbelief.

Words are failing me. I cannot adequately describe how beautiful and incredible the experience was for me. I spent the remainder of the afternoon shaky and on the verge of tears. Tears of utter joy but, also, unsettling sadness. It took me a while to figure out why: It just can't get any better than this. I just can't imagine how it could.