Tragic Sandwich

You know the maxim. Put your own mask on first.

Often, though, that’s easier said than done. Because the other mask is needed so urgently, and so persistently, that it’s easy to forget that you even have one of your own, much less a need for it.

So people say “Oh, you and Mr. Sandwich need time together. You need to MAKE time. It’s important.” And we know. But it’s also hard in ways that they don’t understand, because they are thinking of their own situation.

When Baguette was a baby, family members could come over and take care of her for a few hours while we went to a movie or out to dinner. But after a very few years, that option no longer worked, for a variety of reasons. Sometimes her day care would have Friday evening babysitting. If she knew the teachers who were there that night, we’d plan to pick her up a couple of hours later than usual. She was with familiar people in a familiar setting–and she was already there, not getting dropped off–so it was comfortable for her.

We learned that she was delighted to stay longer at day care, but only until 8 p.m. That’s when she would start to realize that she hadn’t seen us in a very long time, and would start to get sad. Sad was not our goal.

So by the time we got home, and in the time before we needed to pick her up, it wasn’t really possible to see a movie. We generally would get takeout and watch things from the DVR. And that was fine, because it was time we were spending together as a couple. We don’t need to be in a restaurant or movie theater to do that.

But over time, the teachers she knew weren’t the ones providing extended hours. One of her teachers left the day care for another position and therefore was able to come to our house to babysit–but she soon moved home to her family, who lived out of state.

And then there was no one.

This is common, by the way. Finding babysitters was a snap when I was a kid, but apparently tweens and teens aren’t babysitting in those numbers any more, and there definitely has been pressure on parents to be more selective.

Finding a caregiver with experience with autistic children? We’re in a big city, and Care.com exists–but we’re easily talking $20 an hour, not counting dinner or the movie or whathaveyou. I don’t in any way think that’s unreasonable as a charge, but that’s a lot of money for an evening out. Plus, for Baguette to be comfortable with the person, we’d have to have them over at least weekly most of the time. It would add up fast.

Add to that the fact that Baguette developed the loudest, most piercing case of separation anxiety known to humanity, and we just weren’t willing to ask someone to deal with that.

But then there was “Hamilton.”

Colonial and revolutionary America is my era. I’ve studied it formally and informally most of my life, since visiting Colonial Williamsburg when I was six. And I love Broadway musicals. So when “Hamilton” was in its D.C. tryouts and a promotional video was released, I was instantly hooked. Everything about the production was incredible; the music, the backstory, the creators, the performers, the social media genius of Lin-Manuel Miranda, the #Ham4Ham mini-performances for people trying to get tickets by lottery. I got the soundtrack and listened to it for months during my commute. Mr. Sandwich got me the Hamiltome for Christmas, and I read the entire thing in a day and a half.

So here’s how this works. To get respite care–an aide in a day care program, or in your home–you have to be registered with the Regional Center. That process, with its forms and evaluations and assessments, takes more than half a year. We made it just in time for Baguette to get an aide to go with her to summer camp. And then when school started again, the director of the after-school program at her school refused to admit her. (This is a whole different post, and I don’t know if I want to write it at all, but I certainly don’t want to get into it right now.) We found ways to handle that, at great cost to ourselves (and mostly to Mr. Sandwich, who was the key player). We got another aide for summer. And then, at her new school, the after-school program was happy to admit her.

Once we got Baguette used to staying at school after the last bell, we focused on in-home respite. We were able to get the two women who were providing her after-school care, so they were known quantities to her. We had them over and did not leave, to get her used to having them in the house. We left for short trips, to the drug store or to buy groceries. And then the day came for us to see “Hamilton.”

Within 30 minutes of our departure, she had thrown her tablet across the room and shattered it.

You know what? The show was worth it.

Still, we went back to Square One. We stayed there for so many weekends that the aide told us to go out. We started, again, with short errands. And then the aide ghosted us, and we were back at Square One.

We’ve been through several aides, but Baguette is more accustomed to the idea of being home with someone who isn’t us. We usually have one at-home session and then go out for the second.

What this means is that we’ve had (nearly) weekly childcare for a year, and in that time we have been able to have lunch maybe half a dozen times.

Two weeks ago, we went out for dinner for Mr. Sandwich’s birthday. It was the first time we’d gone to a restaurant, just the two of us, in five or six years.

And last night we got to have dinner with friends. That? I don’t think we’ve done that since before Baguette was born.

We went to an area pub with Bestie’s parents. We ate delicious, bad-for-you food. I drank this Smithwick’s.

And you know what? We talked nonstop, but we didn’t talk about our kids the whole time.

It was incredible. It was rare. I had such a good time.