It doesn't get old

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

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

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

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

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

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

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

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


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

Goodbye January

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.

Transitions and Paperwork

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.

Small Steps

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.

Overwhelm

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!