Thanking our village

I just spent the morning dipping Oreos for teachers and helpers, which is apparently now my signature teacher gift. (Can something be “signature” after only two times?) It got me thinking back to last year’s post, which is still completely relevant for my frame of mind today:

My friend, who is also the mother of my daughter’s classmate, asked me a couple of weeks ago if I wanted to join in on a group holiday gift card for their teacher, thus setting off my annual tailspin of panic on how to appropriately gift the many folks who care for and about my kids.

While I absolutely can’t begrudge my daughter’s regular ed teacher the $15 worth of Target goodies she would have gotten if I participated, I had to decline. Or more precisely, my wallet and my sense of fairness did. If I can’t do it for everyone, I shouldn’t do it for anyone.

I’m not going to whine about how expensive it is to give gifts to all the people who work directly with my son: the six behavior therapists, the special ed teacher, special ed director, BCBA, two clinical directors, school nurse, physical therapist, occupational therapist, and his beloved bus driver. Having a lot of people to thank is a good problem. Most kids receive too few services. That’s not the case for us. But it does make me feel like a cheapskate.

It’s not just the awkward feeling of inadequacy around my limited gifting capabilities that is uncomfortable at this time of year. This deep revealing of obligation is unsettling. I am starkly reminded of my son’s vulnerabilities and how dependent he is on so many other people to get through life.

I too am dependent: on our education consultant, the special education administration, the lawyer, the financial planner, the school committee members, the other special ed parents in our district, the special needs parents who advocate and change policy we couldn’t live without, the agency professionals, the doctors, the nurses, the front desk folks who make sure we have referrals and prescriptions, the pharmacists, the diaper delivery man, the transportation coordinator, the newsletter writers, the conference planners, the breakout session presenters, the support group coordinators, the bloggers, the friends, the family members, the neighbors. Even you, dear reader, on whose community I have come to rely to get through this unexpected life. I am dependent. I cannot do this alone, because he cannot do this alone.

To be honest, part of me resents that dependence. We live in a culture in which independence is strength, independence is freedom. The ideal American life is free of obligation, of reciprocity, of dependence. As I have come to learn, that freedom is an illusion. A delusion even.

So this year, the kids and I have been whipping up batches of chocolate-covered Oreos as token gifts for the school personnel. (Luckily we are able to make them slightly faster than we can eat them.) Three a piece, decorated with sprinkles, in a cellophane bag with a candy cane. Even my daughter’s teacher will get some.

It’s not enough. But it will have to do. I am getting comfortable with being indebted.

To the rest of you, I say simply thank you. I hope I get to say it in person, maybe even with a hug. But if not, please know that I know that I couldn’t do it without you.

It’s all still true: the dependence, the latent desire to be free of dependence, the acceptance of it, the appreciation of it, and of you. Thanks!


Water, water everywhere

I’ve been quiet, but life hasn’t. Returning from some back-to-back conferences, I dive into our latest round of potty training my 10-year-old son, who confounds us by being successfully able to stay dry at school but not at home. You can imagine that by now, we’ve tried nearly everything. Quitting diapers cold turkey, sitting on the toilet every five/10/30/60 minutes, sitting on the toilet until he goes, sitting only when he asks, rewarding him when he sits on the toilet, rewarding him when he goes, rewarding him when he stays dry—stickers, M&Ms, iPad time—as if we’re one ingenious bribe away from getting this to work, potty books, social stories, pretending to ignore it completely.

We’ve received advice from countless experts: behaviorists, toileting clinicians, gastro-intestinal specialists, neurologists, developmental specialists, pediatricians, other parents, teachers, day care providers, nurses, grandmothers. It’s not like we’re trying to solve world hunger, but it’s a complex problem to us. Our school says that he’s the most complicated toileting case they’ve ever worked with.

Every few months we pump ourselves up for a renewed effort, one that requires patience, detachment and strong legs to make the trips up and down the stairs to the washing machine. This latest effort started yesterday. We’re trying something new this time, getting help from the behaviorists at school who have agreed to come to our house after school through bedtime to help us do what is working successfully for them. Less than 24 hours later, we’ve had major success—bringing him to the bathroom an hour after he fell asleep actually worked—and a morning filled with tantrums, flopping, crying, refusals to sit on the toilet, and refusals to walk to the bathroom. After my husband lifted our son from the breakfast table to take him to the bathroom, my daughter welled up in tears and said, “That doesn’t seem like a very nice way to treat a child.” Ouch. And with that, I remember every other time we’ve stopped trying.

Sitting down to write today, I wondered the point of today’s post would be. I like to have an insight, a solution, a resolution. But today there is none. There’s lots of ambiguity—can he really do this? Can we?

I’m getting used to this ambiguity. Often special needs parenting (and living in general, as you all insightfully point out) is about learning to thrive in that in-between feeling—being clear about what you want, having faith that you’ll get there, but not being attached to getting there. It’s like floating. I let go of the shore, on my back looking up at the sky, not getting too caught up going in any particular direction, occasionally paddling my feet to steer me in the generally right way, but not so much that I get a cramp. Just being. Just floating. Just appreciating being wet.

Do you float? How? When?