To begin: don’t read this on your phone. Dear reader, kindly wait until you have time to read it on a laptop or desktop. For some reason, when I upload perfectly normal-looking photos from my MacBook’s photo files onto this blog, it flips many of them. It lets me go back and manually fix them for a desktop but not for your phone. Also, it doesn’t let me upload videos. I am running versions of everything (wordpress, Apple, etc) that have been updated as recently as March 2018. Don’t bother with the tech support suggestions. Aloha, baby.
I have a funny relationship with aloha. In some ways I’m too aloha, too casual, too dessert-before-dinner, too low-standards, too ready to give everyone a break. Other times…I’m deathly worried about others and about not doing enough with my life. How is this affecting Dar? Who might parent Dar better, or differently? Not sure.
Going to Hawaii doesn’t change that, it just makes me notice the extremes a little more. You’d think I’d relax. You’d think Dar would relax. They always told us to be sure that Dar tries new things. And I want to help with that, but…
Here we are on the plane going to Hawaii. Honestly not a terrible ride. The way back was much, much screamier. I’m not even going to talk about that.
R loved our convertible car. In our non-convertible experience, Dar likes sticking his head and hands out the window, so we figured he’d love the convertible. He…probably did. He can’t say. But during the times he was screamy in the back, every time I flipped up the hood, he got quiet. It was at least a whole new level of sensory exploration for him.
Dar used to love beaches. This beach, near Nawiliwili near Lihue, got him screaming. Every time we went there (on three different days). Not sure why. It sucks when we have something that seems to work for him, and then it doesn’t. It also sucks when we’re in Hawaii and we can’t do beaches. Sigh. (Pictured: his brother.)
We did go to this beach in Poipu, where Dar’s brother thrilled to get this close to a turtle who swam up onto the beach and very actively moved his head. Dar screamed when I tried to get him anywhere near beach or turtle. Luckily there was a playground near the beach where Dar spent an hour dribbling sand onto a plastic slide (not pictured).
Pictured: three walking pandanus next to three walking pandas.
Grand Hyatt Luau, not very well-pictured. Dar’s brother at right. Can’t take Dar to these things, because he’ll just scream and waste his $100 entry fee.
This is from Daddy’s scuba excursion. Mommy watched Dar and brother. Mommy is a saint. I swam with giant turtles (not pictured).
We used to go to Hawaii all the time, but until this trip we hadn’t been in five years. Basically, it became too difficult with Dar’s condition. Dar’s condition has paralyzed us and made us wonder what we’d do if he didn’t have it. But…we try to overcome that. This is all part of it, perhaps.
Has Hawaii changed in five years? Of course not. Except now there are a lot more “Moana” references everywhere.
Waimea Canyon. Dar still doesn’t know anyone is taking his picture. He doesn’t look at photos of him when we show them to him. There’s nothing to be done about it but keep trying, right? Is it possible Dar is actually filing all this away for some amazing memoir to be published later? Sure, anything is possible, just bloody unlikely.
Y’all wish you had my skills with the selfie pano:
This photo isn’t exactly faked, but it gives Dar a wistfulness that his behavior didn’t earn. He was just doing his usual sand-hand filtering, and someone off-camera got his attention. Still, I know a good fake picture when I get a chance to take it.
Meanwhile this photo was taken because I liked the colors, but it makes Dar’s brother look like a loner; no, he’s very social. But…maybe there’s more truth in both these photos than I tell myself. Maybe Dar is a thoughtful dreamer, maybe his brother is growing up lonely without a brother to talk to. What will these photos mean to me in a year, in a decade?
Another important question: Why did the chicken cross the road? Dar’s brother said “to become our dinner?” That’s my boy! (I would like there to be more “that’s my boy” moments for Dar. Hard to find them, though.)
That’s like hypnotizing chickens…
(Kauai has wild chickens everywhere in case you hadn’t heard.)
Here’s Dar’s brother feeding the fish. I wish I could get Dar to do something, anything like this. I wish, I wish, I wish for fish. One fish, two fish, red fish, autistic fish.
This was terrific – a high-school friend who flew over for a day from Oahu (the next island over). He has an autistic brother to whom he sends money every month. In some ways the issues are comparable, in other ways not; Dar is far more severe. I was glad my pal got a chance to hear Dar scream, really scream it out for an hour. I said to him, “I think on the blog when I talk about the screaming, people think it’s like hearing their kid say ‘Dad, that’s not fair!’ or ‘Dad, he started it!'” My friend laughed and said, “Not that, but when you actually hear and feel the screaming…it’s different.” I said something about how we’re programmed to respond. You could call it Darwinian evolution, although I didn’t. It’s hard to just let Dar be Dar, especially in front of people. So, the solution is to shut him in? My friend’s brother, an adult, is a shut-in who likes it that way. But…let’s just say these issues aren’t easy.
We had a LOT of rain. But we also had a lot of rainforest. Dar here in the rainforest wears a shirt that says “Big Jungle Safari.” But is your life a safari if you can’t articulate it? Dar’s existence brings up many harder existential questions that resist easy answers.
Dar’s brother is so affectionate with me and his mother, he almost makes up for Dar. He projects the light of two suns (sons?). But still, I can’t help but notice a moon named Dar.
At the Kilohana plantation, we took their train ride. We liked it!
Dar’s brother fed the wild pigs. These pigs stomp over the babies to get to food. They’re terrible, actually. Dar behaves better than them. So, that’s something. Right?
I leave you with a behind-the-scenes picture of our REAL time at the Hanalei Bay Resort. Dar screams at the hotel room, screams at the beach, screams at a restaurant. WHAT DO YOU WANT, I ask him. IPad doesn’t help. So I let him take me by the hand. He walks me to the golf cart depot, probably the least scenic part of the island. He wants to watch as the golf cart drivers come and go. He wants to feel the rain fall off the roof gutter onto his head. I want to let him and stay dry(ish). I get in a parked golf cart and hope the staff won’t yell at me. Luckily, they’re aloha.
Let’s all be aloha.
What can I say except you’re welcome?