Tuesday, January 17, 2012

A Glorious Day

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

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

After lunch Paul and I were reading but Ruby and Abe itched for adventure.  They wanted to climb up that crack in the grassy hillside. 
We let them go.  Five minutes or so passed and I realized I could not see them. I figured I should check on them but I wasn't worried. I slowly laced up my shoes and headed across the beach to the base of the hill. 
I gasped when I reached the crack.  I had no idea how narrow the space. How steep and crumbly the walls.  I started climbing, and my feet slid on the rocks that covered the trail, rocks that had been pulled out of the dirt walls by previous climbers. I climbed faster - slipping, stepping - up the deep and twisty ravine, calling up on decades-old rock climbing skills to grasp tiny rocks poking out of the walls to hoist myself along.
My heart pounded. My legs shook. I worried about Ruby slipping backwards into Abe and the two of them sliding on rockfalls all the way down. Partway up the climb, the walls grew shorter and I could spot them sitting on the old military bunker looking down over the cliff. I hoped Abe knew to keep Ruby from the edges of the sheer cliffs.
Of course they were fine. But definitely not the best idea to let them hike alone.
The views from the top were breathtaking.
We stayed a while just breathing it in.

When I returned to the beach Oscar was eager to show me that he'd found more green and white stones among the black pebbles.
He put them in his pocket for safe-keeping and laid down on the blanket with his book, Diary of a Wimpy Kid.  He read, I read, and Ruby buried her legs in sand. 

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

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

We considered staying on through sunset and hiking back to the car in the dark.  (If only we'd brought our headlamps and an extra snack.)
On our way back we stopped to take this family portrait.  That's me on the left, then Ruby (with her hat and bucket), Paul, Oscar and finally Abe.  

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

Saturday, January 14, 2012

Another Conversation with Oscar about PWS

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

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

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

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

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

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

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

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

And then I answered his question.

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

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

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

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

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

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

Wednesday, January 4, 2012

Wordly Wise

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

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

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

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

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

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

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

Sunday, January 1, 2012

Happy New Year!

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!