One thing we’re not good at–and I’ve said this before–is making sure the Cabana Boy and I have time away from the kids with other adults. It’s something parents of special needs children really need to do as often as they can, to replenish their own sense of identity. As the folks at Hopelights say:
Think of it this way… when travelling by plane the flight attendants tell you one very important thing – if the oxygen mask comes down, put one on yourself first, so that you are then able to put one on your child. Respite is oxygen. We hope you find some room to breathe.
Usually if we can get away, it’s usually just a couple of hours with each other at a movie or dinner, hurried through, worrying the whole time what the children might be up to. Since the children have been diagnosed, we have cut back our interaction with others in the community, for a variety of reasons. Church became difficult when behavior issues broke out in Sunday school class. It’s hard to ask parent volunteers who are untrained to deal with the Captain. Even his regular special-ed certified school officials gave up this year, you know? Our other interests tend to be solo pursuits, writing, and gaming, so our time with others is limited.
Both of us have worked with the Meadville Community Theatre, both on stage and behind the scenes, but whereas before the diagnoses, both of us could even be in the same show (even though we were never on stage at the same time….weird…) or do lights and sound together, now, it’s usually just some quick exchange. E will program the sound for a show or design the light setup, or I’ll do a review or some sort of PR thing. We miss it, but finding responsible child care for a 15-year-old who can’t mind himself is tricky.
All the same, the annual awards get-together came along last night, and we decided to go for the first time in 10 years. We sat with my friend Pam, who’s helped me with book promotions, and saw a lot of friends we hadn’t seen for awhile, including my Steel Magnolias co-star Ann DeWalt, more recently featured here as an anti-war protester, feistily scuffing it up with a bunch of whiners.
The party was dedicated to 30-year MCT veteran Jim Snyder, who with his wife Cindy are moving to Seattle later this year to be near their kids and grandkids.
Many people wore costumes from shows they did with Jim– like the guy in the yellow flower, who was eaten by the monster flower Seymour when Jim did Little Shop of Horrors. Or the dreidel costume he wore in one holiday show. Yes. A giant dreidel. Only theatre people…
The evening progressed with a lot of folk re-connecting, and a lot of theatre talk. The time when Jim did… the time when Megan did… digging old wood out of the Hole…Emmy running all the way around the building after she went off stage to sneak into the audience to catch Patti’s performance in Flamingo Road.
I’d forgotten what a great group of people these are, and how good it felt taking some time away from not only my office and its emotional toll of broken families, but also the broken family we have at home.
The evening definitely sparked my conscience to make a more determined effort as the summer and fall come to pass to join in some activities outside of work and home. The kids are getting older, and even though they’re not as responsible as other kids their ages, they can be left together to watch each other for a few hours.
One project we’re very excited about is the possibility of helping the Unitarian Church to set up a social place for gay teens in our community to hang out–somewhere welcoming that they’re hard pressed to find now in this town. I’m sure the experience of acceptance my daughter had when she came out is not what the average young person finds in this somewhat conservative community. I’m really looking forward to seeing how we can make this happen.
And who knows? The kids are old enough to help with productions, although their attention spans are limited. And sporadic. But it could happen.
And I guess it should. Because we can best model how to be whole people if we actually are—instead of only being people who live behind a label. Maybe we don’t have the diagnosis, but “parent of child with X” sometimes carries its own difficult burdens. Better to have a chance, every so often, for this kind of a smile and time to breathe that oxygen, for everyone’s better interest.
(Thanks to Pam Micosky for these fantastic pictures!)