Ahhh, summer. You know, if you're a parent who's home even part of the time, you sorta walk in the door to summer as school ends, and basically hand over your sanity right there at the doorstep, not to be seen again until Labor Day. There's no routine. Even if you manage to establish a routine, then that week of camp or grandparent-babysitting or whatever ends, and you have to set up a whole new routine. It's nice to have your kids around, but damn, it can make you crazy.
Anyway, one thing we tried for the first time this summer is Tess going to camp. Camper Tess. We know there are camps out there for kids like her, camps made to deal with her degree of needs, but we aren't ready to drive her out-of-state just yet. Plus she's in school for this thing called extended school year most of the summer. See, where your typical kid will sorta forget fractions over the summer and it's no big deal because you can get her back on track in September, with Tess, on the other hand, she'll forget how to go potty and brush teeth and feed herself if you don't keep up these crucial skills over the summer. This is a big deal because it can take months to bring those things back.
So we had only a week or so to keep her occupied before the extended school year started up for the summer. So camp.
There's a camp in our town, just a regular ol' day camp for typical kids. And we signed her up for that. We figured several things. First, we'd send her with a one-on-one person, a babysitter that we've known for years, who would stay with her all day at camp. Keep her safe, bring her to the bathroom, all that stuff. Another thing we figured was that even though the camp goes 9am to 3pm, Tess wouldn't last the whole day, but she'd stick around as long as she could. And finally, we figured that there'd be enough activities that she could do. Sure, if they were doing, like, archery, that probably wouldn't be the best choice for her, but she could make her way to arts and crafts or music, and hang out and be happy.
We signed her up for a week of camp. And on two of those days, her one-on-one wasn't the babysitter. It was me. While other minivans were cycling through the parking lot, dropping off their little first-graders, and driving away, I was parking our car and unbuckling the T-Bird and bringing her inside. It was hot as a mofo that first morning, with the forecast promising temps in the high 80s here in Maine. I had water, extra water, sunblock, bug spray, and like fifty snacks ready to go for T inside her bag.
Walking her in, I wondered what it would be like for her. Since it was in our town, my wife and I assumed that the camp would have some kids who know Tess from this past year of school. But from among our friends we hadn't heard from a soul who was sending their kid to this particular camp. None of Tess's classmates. None of her friends. What if there was literally no one who knew her? And even worse, what if no one cared about including her? I knew almost nothing about the program at this camp. I mean, what if we got in there and the whole day, for every group of kids, was filled with stuff she can't do? What if we arrived and they said, "We're gonna start with ziplining, followed by bungee jumping, and then finish up with paintball!" Would this whole thing turn out to be a colossally dumb idea, a reinforcement of one of our greatest fears--namely that there's no place for Tess and that because of how delayed she is, she's destined to be forgotten, stuck in a corner, left behind, while other first-graders play together and call out each other's names, and save each other spots at lunch, and never give her even a thought? After all, we can't make people include her. Even if I'm actually there, in person, at this camp, for every second of that day with Tess, I can't make other kids do a damn thing. I realized all of this, walking in on that first morning.
And things started off not so great, actually. No one knew Tess. We strolled into the cafeteria, where all the other kids were assembled in groups, and nobody came up to her. Not one single kid knew her name, despite the room being filled with hundreds of kids who go to school with her. Tess joined her group, and I met her counselors, who all go to the local high school. One of those counselors was very very interested in Tess. She asked me a million questions about how we communicate with her, and what she likes to do. This was comforting, that at least this counselor would be thinking of Tess. But our group in general--all kids Tess's age--seemed to want nothing to do with her. They basically ignored her.
We moved to our first activity, and they kept on ignoring her.
Honestly, I can't really blame them for this. The game was in a gym, and it involved running at top speed and trying to tag people. Tess can't run. She's gotten to be a fast walker, for sure, but not a runner quite yet. And the concept of tagging, or trying not to get tagged? That's well beyond what she can understand at this point. She only just started to realize LAST WEEK that when I hold up my iPhone, and do that thing where you flip the camera, so you can see yourself on the screen? She only just pieced together that the little girl on the screen in front of her is HER. That that's her self on that screen. That if she moves her hand, that girl moves her hand too, because they're the same person. And it was only a few weeks ago that she discovered her hands, these marvelous appendages on the ends of her arms, and "Whoa, what are these long things? These are my fingers? Holy shit. Mom and Dad, have you seen these hand things and fingers? I can flex these, and, I--I can look at these all day." Yeah. That just happened for her. So tag? Not really gonna happen this summer.
And what did I expect? That kids who are six and seven are gonna go, "Hang on, instead of running around as fast as I can in here and playing this crazy fun game that has me laughing and having the time of my life, lemme stop all this fun, and go over there to that little girl and her dad, and see what her deal is."
Hell no.
I get it.
Our thought was that we should zip around to different areas and try other stuff for Tess, if our group was doing something that she can't do. But on that first day, I decided I'd stay with our group. Maybe she'd be able to play the next game.
And sure enough, she could. This one was called Traffic Jam, or something like that. And the game's premise was that you'd walk all around the gym, and stay on the lines on the floor at all times, and try not to get caught by the two or three cops who were trying to tag people. This we could do. I held Tess's hand and we walked. We walked every line in that gym. She couldn't see the lines all that well, but I guided her. She kept walking. She wasn't getting tired, not asking to be picked up. She kept playing. She was one of the last to get tagged. She did great. She didn't seem to know that this was a game, and that we were evading the 5-0, but she has a sense when she's part of something. When she's in a group of other kids. And luckily this was a fairly quiet game.
There were more games that first day, most of which she couldn't do, so we went on several walks. Much of our day was spent in empty rooms, or walking down echoing hallways. We never really connected with our group much after that first game. Eventually after lunch we went outside, to the playground. It was blisteringly hot. Now, heat sucks the life out of Tess. We live in Maine. Where it's almost never hot. When she gets hot, she shuts down. You look in her eyes and she's simply not there. She acts like somebody who's on the brink of falling asleep. Except she doesn't go to sleep in the heat. She just kinda fidgets and every so often gives out a little whimper. It's not my favorite thing to see in her. As we reached that playground, I looked down at my fitbit, which I'd been wearing all day. It said I'd gone about two and a half miles so far that day. And I realized that I hadn't carried Tess at all. Which meant that she too had walked two and a half miles. All of our walks had added up. Given that distance, and the fact that she was fading in the heat, I called it a day.
It was hard not to feel defeated, driving her home. She went down for a nap, and I tried not to think about how she hadn't really been included by her peers all that much. We'd chosen to send her to this camp, right? Not a special-needs camp. And did we really need her to be the center of attention? A few kids had recognized her--mostly older kids, but still. This is just how it is, I told myself. I'd pick more activities for her the next day, when I'd bring her again.
And so I did. When our group was playing dodgeball, I brought her to the back of the gym. Sure, the place was like a freaking echo chamber of hell, with kids screaming their lungs out, but maybe she'd be able to deal with it. I watched her, to see how she was tolerating the noise, and she seemed fine. So we stayed. There were like 600 dodgeballs--not those red ones you also use for kickball, the ones that feel like you've been clunked with an iron when it inevitably smacks you in the face--no, these were spongy and light and had bright neon colors. I grabbed one of them, and Tess was immediately captivated by its color. And something really cool happened. I showed her the ball, right in front of her face, and then I threw it up a few inches, and then it came down and hit the floor. I did this four of five times, as slowly as I could. And on about the fifth time, when that ball came down, Tess caught it. She wasn't following it with her eyes at all. The ball's super light, so it didn't come hurtling down, but still it was moving too fast for her to follow it. Still, though--somehow she knew to get her arms out in front of her, and get those hands in the right position, and when the ball would come down, she could catch it. This had never happened before.
A little while after that, our group changed gears. They were in an activity that Tess couldn't really do, so we left. I brought her to the art table, where some kids were coloring with markers. They were all a year older, going into second grade this fall. "Scuse me, guys," I said, and made a spot for Tess to sit at the table. We're working on having her grip markers and she could basically do it, and she colored a little while, before trying to bite the marker. It was quiet at the table. There was a kid across from us, who stopped coloring and just stared at Tess. "Hi," I said to him. He didn't answer. He just kept staring.
And then this girl came over. "Hi Tess," she said. She turned to me. "I know Tess from the bus. My brother has autism so he rides the same bus she does. Sometimes I ride with them." She was so sweet. She reached out to pat Tess on the shoulder, and gave her a big smile. I could tell that she knew T because she wasn't waiting for Tess to answer, or do anything, really. This little girl just wanted to come say hi.
Tess couldn't really color anymore, so we got up to move around and walk a little. The girl followed us. And one by one, kids put down their markers and came over. "What's her name?" they asked. The first girl was like, "This is Tess. She rides my bus." And she was really proud that she'd known Tess before this. The others started asking questions like, "Why can't she talk?" and "How do you know what she wants?" and "Will she ever talk?" Pretty soon, almost the entire group was in a tight circle around Tess, each one wanting to give her a hug or hold her hand or help her in some way. The counselors signaled to me from over by the art table, asking, "Are they bothering you? Do you need them to leave you alone?" and I signaled nope, this was just fine. They all made paper airplanes and decorated them, and gave them to Tess. I ended up with a huge handful of them. Eventually we returned to our own group, but for the rest of the day, whenever we'd run into that other group, they'd all say, "Hi Tess," and wave, and give her high-fives.
I met the camp director eventually, and she was thrilled that we'd decided to send Tess to that camp. I came home from my last day there with T, telling my wife we gotta do this camp again next year for her. She'd had fun, found quite a few activities that she could do, and most important of all, she'd done what you're supposed to do when you go to camp. She'd made new friends. A whole bunch of them.