Saturday morning I get up earlier than I’d like – though my body craves sleep my mind longs for peace and quiet, those fleeting moments when no one else is awake. I hear V stir and check in on him. He’s still sleeping but clearly was up during the night. I canvas the room, feeling more like Johnny Depp’s personal assistant than a parent: there are remnants of a pillow he’s somehow torn apart, strewn across the floor and it is hard to see him under the pile of stuff on the bed – I have no idea how or when he tore it open, or went into the bathroom and brought back everything that isn’t nailed down: on top of his comforter there are two towels, two bath mats, a washcloth, and the porcelain top of the toilet, which is not as gross as it sounds but is an odd new addition to his usual accumulation of stuff.
His impulsivity is so exhausting to keep up with- especially a recent compulsion to put on layers and layers of clothes – that we’ve moved his dresser into our room, along with a bin filled with soap, shampoo, washcloths; shelves of towels and sheets; and hooks loaded with sweatshirts and jackets. One room entirely empty, the other so full it looks more like a yard sale than a bedroom. Life out of balance.
Fortunately home therapist R comes on Saturday morning. I’m so appreciative for his time and all that he and V’s other home therapist do to help him with independent living skills, but the truth is we could use two or three times our current 12-14 hours a week. We’re approved for state funding for 18 hours/week but rarely receive that much; we supplement with other help, but it’s an ongoing effort to find people with experience and availability given the need for services.
The amount of supports V still needs are extensive, and the more he gets now the better able he will be to lead a fulfilling life, and the more skills he gains, the more possibilities there will be for adult residential living someday. In an ideal world (like in Canada or most of Europe) we’d have a near constant mix of therapy, mentoring or companionship, tech support, community outings and job training – a degree of help that is out of reach for the average low or middle income family.
R and V tend to their schedule: showering and dressing, breakfast and clean up, leisure time activities: usually a walk, some simple reading and writing exercises, sometimes a baking or art project. I have my own routine, broken into segments of must do’s: walk the dog, breakfast and the first round of clearing his room so he can sweep and make his bed; an hour of writing, never quite enough to hunker down and get in a flow; then back to housework and lunch prep while listening to Wait Wait Don’t Tell me, the funny week in review radio show that feels all the more necessary these last three years.
This week is different because I also have to prepare for our trip into the city with visiting family. It’s wonderful to have my sister- and brother-in-law here (staying at a nearby hotel – no room at our inn) after much too long without seeing them, and it’s a good excuse to go into the city, where we lived as a family for our first 7 years and which is still a short train ride away.
While V loves the city and seems to sense its a place where his difference and eccentricities are accepted or not even noticed, we’ve been going in less frequently the last few years. There’s so much to take in and enjoy but also a lot to keep on top of along the way: train rides, busy city streets, subways, bathrooms and restaurants and other public spaces to navigate in a way that maximizes enjoyment and minimizes anxiety or the possibilities for meltdowns. Being out in the community is important, but it’s also hard work.
The local library now offers free museum passes (let’s hear it for public libraries!) and I pick the Guggenheim – in addition to great art, it’s a spectacular building designed by Frank Lloyd Wright, and even for those not as enamored of its stellar art collection, provides a unique experience for its visitors to climb up the galleries that extend from the ground level in a continuous spiral. And its location right across from Central Park makes it ideal for visitors who can’t last too long in museums.
We enter and slowly ascend the ramp, although we soon enough are going at different paces: V either racing ahead or sitting down as the rest of us take turns keeping up with him.
For me it’s like a homecoming. There are familiar paintings I love, and artists like old friends I haven’t seen in awhile: Francis Bacon! Wassily Kandinsky! Ana Medieta! There are a few artists I’ve met (Glen Ligon, Vito Acconci) and one who I’ve seen perform many times (Nan Goldin). Names that you may not recognize and mean little anymore except to remind me of a time when I used to go to museums and stare at favorite paintings, when life felt so big and culturally rich. It’s a bittersweet pleasure as I take it all in, aware of how small and constricted that life has become.
V gets antsy so the guys go out with him to walk in the park while the rest of us finish spiraling up to the top where I look down and feel for a moment ‘the temple of the spirit’ that Wright conceived of when designing the building.
And then we head back, the same delights and challenges of being out with V, trying to look at architecture and hold a conversation while making sure he doesn’t rush ahead or fall behind or simply stop altogether; each step of the journey punctuated with an explanation point at another triumph. We’re walking here! We’re eating in a restaurant! We’re waiting for the subway! We’re having fun! “There are two ways to live your life,” according to a favorite Einstein quote, “One is as though nothing is a miracle. The other is as though everything is.” Our obstacles lead us to the latter approach, aware of constant little miracles as we navigate the world, grateful to feel a part of it.