Hello and welcome back from Winter Break. I’ve enjoyed the excuse not to update the blog because…this has not been the easiest period in Dar’s life. Suffering is supposed to ease. But sometimes, it gets worse, with no end in sight…for decades.
The most recent period of awfulness began on Dar’s final day at his first-ever camp, sleepaway or otherwise. I won’t say their name because I don’t want to jeopardize his chances of attending in the future. Now, you might say, what is Dar doing going away to sleepaway camp in December? Good question!
We had never even realized that there are overnight camps for kids with special needs. How did we get almost as far as Dar’s tenth birthday without realizing that? See what happens when you don’t have grandparents around?
Day camp was never much of an option for him. But an overnight camp might potentially represent a break for us. One or two nights where we don’t have to worry about waking up at 3am to the blood-curdling scream of a maladjusted ten-year-old boy.
We only just heard about such places in about May of 2019. By the time I got any of them on the phone, they were all swamped for summer 2019. One such place was staffed by a woman who very kindly helped me through the mounds of paperwork. I mean, there’s Regional Center, there’s doctor permissions, there’s medication, there’s writing his name on clothes, there’s ten forms to fill out…
This same woman told me that even though I had missed the summer weeklong programs, I could apply for Dar to attend one of their off-season weekend retreats. Great! Probably best to try Dar on a one- or two-day retreat, see how that went, and then try for longer. We applied and were turned down. Twice. Then we got into their holiday weekend retreat scheduled for the middle of December. Perhaps it isn’t as full because of the weather?
The campgrounds are near Big Basin in the middle of the Santa Cruz mountains, roughly a two-hour drive from our house. Now, the camp provides a bus and I could have put Dar on it. But I chose to drive him, partly to meet his counselors, partly to make us look like we really care, and partly because we figured Dar might freak out on the bus and we wanted him to at least arrive at the camp before any public meltdown.
On drop-off, his counselors looked so nice and friendly and optimistic! On pick-up, they looked…not like that.
On the Sunday, I was driving to the camp when I got a call from the camp.
“Hi, uh, he’s been like this off and on all weekend, but….he’s really out of control. Do you suggest anything?”
I could hear fever-pitch, hysterical caterwauling in the background.
I told them a few tricks that work for me. The main thing I said was that I would be there in thirty minutes.
When I arrived, Dar was better. But he was still whooping occasionally. Most of the other kids were still there, and I noticed that they were all much, much more quiet than Dar.
I packed up Dar’s stuff and got him into the car. And then I gathered with the three aides who’d spent the previous 48 hours rotating duties with him, and also the lead at the camp.
They looked as shell-shocked and drained as if they had just spent the last 48 hours trying to dig people out of earthquake rubble. They mentioned the lack of sleeping. They mentioned a lot of things. They also tried to put a brave face on it.
“We had a lot of giggles! A lot of good times. Here you go.” This one showed me selfies of he and Dar smiling.
“But it was up and down all weekend. High highs, but really low lows.”
“When he tantrums at home, does he leap up and fall down on his butt?”
“Oh yeah,” I replied, which was true, but it was also a relatively new thing.
“I saw him doing it on concrete. Just worried he’s going to break his tailbone.”
After a lot more talking, I finally asked the lead the $64,000 question: “Can Dar ever come back?”
She said carefully, “I want to say yes.” She didn’t quite say it, but I felt she felt we would need to change something on our end.
We had already been trying. But this conversation made me want to redouble our efforts.
Wifey and I had recently watched this Amazon anthology series called “Modern Love,” which stars a bunch of people you know. In one episode, Anne Hathaway is rather impressive as someone with debilitating bipolar disorder. (I love her; screw the haters.)
How did we get as far as Dar’s tenth birthday without thinking of that? See what happens when you don’t have close family around?
Informally, bipolar is exactly what those counselors had described. Informally, we’d observed the same: a lot of wild mood swings. But formally, it turns out it’s not easy for a child psychologist/psychiatrist to meet someone who can’t talk and then diagnose bipolar. Wait, back up. It’s not easy for a child psychologist/psychiatrist to meet someone, period.
Our neurologist had already recommended it. This was five months ago. I said, can you refer me? He said, they don’t work on referrals, just check your insurance and call whoever is in network. I said, uhhh… He googled psychology today’s site. I saw a bunch of names, many in network.
Many don’t call you back. The ones who do call you back are often full. Stanford told me the soonest they could see Dar was six months later.
When you finally reach someone, there’s this “what exactly do you want” tone that I find more annoying than I should. As if I’m making all this up. I might say something like, “maybe medication.” But then I would rush to say “we don’t medicate Dar for behavior. We never have. In ten years. His only two medications are for sleep and seizure prevention.”
I really wonder how unusual our situation is. Camp scared me. 19 other kids WITH DAR’S DIAGNOSIS were relatively quiet. Looking at war-beaten, sleepless faces of counselors trained to deal with kids like Dar…is not a good feeling. Are all these other families pumping their kids full of drugs, or do we just have the most problematic possible child?
After that camp weekend, Dar’s behavior at home got worse and scary. Of course, sometimes he’s okay. But at other times…for the record, he’s trying to hit us. And by “us” I mean his therapist and his mother and I. Mostly he misses, because we like to avoid being hit. But he’s trying. And hitting himself to the point of bruises. A year ago, he barely had hit anyone. Now it’s something he knows he can do.
And he’s throwing things. Large things. As just one example, he threw a metal menorah eight feet across the room into the Christmas tree. (That’ll teach me to be ecumenical!) But what if that tree had been his brother?
He’s leaping up and down on his butt the way that the camp counselors described. Sounds like nothing? He broke two pieces of furniture this way, a large ottoman and a wood coffee table. These were new pieces. We can afford to replace them…but should we?
There’s almost never any antecedent. Nothing is that easy. And a lot of the time he’s absolutely fine. But when he’s not fine, it’s like Dar hates his own body and wants to break out of it. I feel so sorry for him.
So Christmas and New Year’s weren’t exactly as restful as we would have liked. We hunkered down. We spent our first New Year’s Eve with just our family. In the old days of, say, three months ago, if wifey or I wanted to see a movie, one of us would just stay home with Dar. But I became afraid to do that, because Dar might have another one of his Chernobyl-class meltdowns. At one point before New Year’s I did sneak off to “Uncut Gems” (of all things), checking my phone constantly for any updates from wifey. Somehow the UA Berkeley movie theater walls, which never muffle the sounds of the next movie over, blocked my wife’s many texts and calls (even though it looked like I had full bars). So I walked out into downtown Berkeley and saw that there was once again a nightmarish crisis at home.
You don’t live with this many home crises. If you did, your girlfriends would be telling you to leave him. But I. Can’t. Leave. Him. Do I sound like a hypnotized abused wife yet?
On New Year’s Day I chatted on twitter with the guy who runs realclearpolitics.com (you can see our chat online). It’s a relatively conservative news aggregation site. He really seemed to have a situation similar to ours. But he’s been managing pretty well ever since he started medicating his son during the day (we don’t). At what age of his did you start that, I asked.
Six.
Huh.
On January 2, I called Dar’s neurologist the first day that he had returned to his office. I told the admin much of what I told you; I emphasized that I was scared for my younger child. Hours later, they called to offer me an 11:50 appointment the next day.
We all drove there as a family on Friday, January 3. We waited until 12:50. I guess that happens when you schedule something last-minute, but I wish they had just told us 12:50, because Dar was almost literally bouncing off the walls.
After a long chat, the doctor agreed to a new medication. I’m not gonna name it here. But it is supposed to stabilize him. It may take as long as eight weeks to really take effect. We’re supposed to see his pediatrician once a week during those eight weeks, just to watch for side effects. More generally, our neurologist doesn’t feel comfortable working on Dar’s behavior. He says his job is mapping the brain. He says he didn’t prescribe drugs like this in residency, he didn’t really see kids like Dar in residency. He wants to unload us on a child psychiatrist.
I get it. But it’s not fun to get.
Today I did an intake call for one potential psychiatrist. We have a Tuesday appointment with another one.
So that brings you up to date. I’ve been putting off writing this, but now it feels good to say it.
I’ll say what I say to everyone: I do not recommend having an autistic kid. It is not something to be wished for. These ain’t blessings in disguise. It’s messings with dese guys.
Welcome to the 2020s. Personally, I’m ready for it to look less like the 2010s.
