My kids get home from their activities, and they don't like to talk about them. My nine-year-old is monosyllabic in the extreme when he walks in the door:
"How was school?"
"Wha'd you do?"
"How are your friends?"
Thing is, we'd kill to get even a single syllable from Tess as she comes in. There isn't any report from her. Luckily, her special ed teacher and her ed tech from school send us long emails every day--all about what worked, what she did, what she liked, and how it went between her and her classmates.
But what about places that aren't school? How are we going to know how it went? She went to a birthday party the other day, and her BHP took her to it. (A BHP is a behavioral health professional, somebody who's with T for a bunch of hours each week to work with her on goals like self-feeding, hitting the potty when necessary, and figuring out how to be social.)
The party ends. Tess returns home. And then I get this great email, from the mom of the kid whose birthday it was. She gave me the lowdown on the party, how Tess did, what she did, and how much fun she had. It was a really detailed email. And then the mom added a side note, about how she personally interacted with Tess. She called Tess "a warm, loving spirit."
I wrote back to the mom and thanked her profusely. But sometimes a thank you is just not quite enough. After all, it's what you say to a stranger when they hold a door for you in public. Words couldn't convey how grateful my wife and I were for that email. The very idea that Tess could be like any other kindergartener and go to a fall birthday party and play in the leaves and laugh and have fun--to hear that yep, that's exactly what happened, well, that made not our day or month, but our entire fall.
And most important of all, we come away from that invitation and that party, that email and that openness from the birthday mom, and we mentally note: check. You, mom who sent that email, you are in the Tess army. You're part of our tribe of well-wishers.
On another front, Tess's speech-language pathologist from school reached out to us. We've recently stepped up our game on Tess's communication. Her SLP heard this and matched our enthusiasm. She essentially said: I'll see your AAC plan, and I'll raise you a trip to Boston. She wants to do more, wants to push T a little bit harder. And part of that is coming with us to our next appointment with Dr. Berg in Massachusetts in a few weeks. Above all, the SLP said, we need to give Tess a system to communicate with us. Not a handful more signs, but a whole system. What's most important to T? What does she need to express? Let's get all that stuff going now. Tess army. Welcome, SLP. So glad.
Now, while some join the army, there are inevitably others who choose not to. I don't want to call them deserters or anything, to belabor the army metaphor, but let's just say we don't want to rely on those folks. I'll give you an example. We were in our most recent IEP meeting, a followup to make sure Tess's services are working out. And during that meeting, somebody was saying something nice, like, "Hey, you guys aren't alone, Tess isn't the only one getting these services at school." Something along those lines. And my wife said, "No, she just has the pushiest parents." And someone at the table smirked and said, "No comment." And we thought, "Really? Is that where we are now?" I think a year or even six months ago, that sort of remark would have bothered us. But not anymore. Fact is, we just don't care. We're already moving forward, away to bigger things. I've said it before and I'll say it again: if you're not really with us, that's okay. We've gotten good--really good--about figuring out who we can count on and who we can't.
If you're an army and you're at war, what's your objective? What are we trying to do? Is there a single achievement that'll signal, okay Tess army, stand down? No. This army's nonviolent, it's just a united front, really. Our objective is clear: we want Tess to have the best life she can. Do the most possible. If there's a playground, let's get her on every piece of equipment she wants to explore, from the swings to the jungle gym, to that swinging bridge thing made out of suspended planks. If it's a birthday party, show her ways to play the games, sing the songs, and get her laughing like the other kids. So what if she's not talking? She still knows how to make friends. She's still a social little bean. So what if she can't run? Her walking's gotten pretty fast, I can tell ya. Just try to outrun her. She's like an Olympic speed walker.
The best thing about the Tess army is that they understand that goal. Some of those people have only known Tess a few weeks, but they get it. My wife and I can't be everywhere--we can't go to school and fight Tess's battles for us. We know a day is coming when someone's gonna throw down an insult, put Tess down, maybe with an unkind word or a label. But we hope that someone from the the army will be there to back Tess up. To see her through.