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.