After last week’s hotel story, I looked over this less cheerful one in my notes. I wrote this at about 5:30am on Veteran’s Day weekend of 2013. It’s a bit despondent. The truth is, this rarely happens anymore. Look at this like looking at a “before” picture; the current “after” may not be extreme-makeover-after, but it’s still better than the following “before.”
Dar’s therapist has said that it’s important for Dar to keep seeing/doing new things. We like to travel anyway, because it helps us escape the sometimes depressing routine of our regular lives. We decide to take a long weekend in San Luis Obispo. San Luis Obispo? Well, it’s November and we’re chasing the nearest temperate beach (in our case, Pismo Beach). Also the Madonna Inn has always looked fun. What the heck, may as well be able to say we tried it once.
The Madonna Inn rocks in more ways than one. Part of it is the yellow rocks that form so much of the decor…they’re fun.
During dinner at their cafe, Dar goes into complete meltdown. Not really that big a deal, happens. It’s my wife’s turn, so she tells me to box up half her dinner while she takes Dar on a walk. Fine. We walk back to our room and Dar goes to sleep around 7. That’s a little early; that usually means he’ll wake around 5. We adjust, get the other child to sleep post haste, and go to sleep ourselves around 9.
The hotel is a little noisy, though, and Dar wakes up around 1:30. He is absolutely screaming like a banshee. Wife gives him every item we have, and then some. Nothing stops his wailing.
I volunteer to walk him around the hotel grounds. Which was my intention. Dar and I put on clothes, go outside…but he sees our car and demands to get in. So we do. I strap him into his car seat in the back and I get in the driver’s seat.
I hadn’t meant to, but we wind up driving around SLO for about an hour, from around 2 to 3. I know people drive like this to get babies to sleep, but Dar is 4. I see their entire coastline and all the little houses that aren’t unlike similar ones in Santa Cruz. The town is still pleasantly small-town California, like Fiddleton or something; many of the signs aren’t even lit this late at night. The problem is, I’m really tired and something of a road hazard. At one point, near “downtown” (I mean, if you can call it that), a cop pulls me over. I don’t even have my license, or wallet; I’d left them in the hotel room. He is warning me that lights are off in the back. Oops. I don’t play the autism card – no it’s not for everything. He’s very nice and lets me off with a warning.
After Dar finally nods off around 3:10, I bring him back into the room, carrying him like a Pieta. I put him in bed, and he fidgets, but seems to want to sleep.
But no. Around 3:30, he wakes again and now screams and screams and screams and screams and screams and screams and screams.
Wife takes over again, because hey I just drove around for an hour. She presents choices – as opposed to just saying “what do you want?” (The theory is that since he has no language, not being able to answer that just makes him more frustrated. When you present two things you give him a chance to succeed.)
Absolute misery. As a friendly reminder, Dar is not screaming for an hour like your 4 year old; there are zero words, not “no”, not “mom,” not nothing. Just the sound of the last ten minutes of a horror movie…for another ten minutes. And another. And another.
Somehow I manage to nod off for ten minutes or so in there. At 5:15 my wife is on her last nerve. She holds her hand on his mouth when he screams. She expresses worry that we’ll be kicked out of the hotel. She says we need to medicate him for sleep. We’ve always avoided that, but maybe it’s time to go there.
I say I’ll drive him around again. This time I get my wallet. We both handle him rather roughly as we get his shoes on and get him out the door. I drive him around and he falls asleep about 30 minutes later. I pull over and let him sleep. I think of carrying him back to the hotel room, but I’m afraid of waking him and bothering his mom. She was about as upset with him as I’ve ever seen her. And she’s the one who forgives him everything, much more than me. But just try keeping a calm tone with someone who responds by acting as though you’ve put a knife in his ear. For hours. If the Dalai Lama can do that, I’d like to see it.
As I write, it’s exactly 6:15; it took me 30 minutes to type all that into my phone. I’m watching the sky get white – too overcast for a sunrise. Let me tell you how I feel at this frayed moment. Absolutely nothing has changed for Dar in 2 years. Every lesson, every piece of advice, every “have you tried…?”, every expert, every bit of protocol, every one of the hundreds of hours of therapy…it’s all been entered into the systems of our family. None of it, not one shred of any of it, made tonight any better or any different than it would have been 2 years ago, than it would have been if we hadn’t done any therapy at all. Dar has learned nothing. He’s Leonard from Memento. I hate to say wifey and I have learned nothing…but let’s say you’ve taken two years of Chinese and you’re suddenly in rural Korea. Not as helpful as you thought it would be, eh?
I mean that whole “it gets better” thing? I don’t feel it right now. We are living in hell. Fire, brimstone, rocks, a devil with a pointy spear. And I don’t see a lit-up exit sign anywhere.