Scratching the Horizon
Page 24
Soon, Elah and Danielle drifted off to sleep. Eli, too. And Isaiah was just staring peacefully out the window, lost in whatever thoughts he’d managed to collect that day.
And then the most remarkable thing happened. The Sarah McLachlan tape that had been running all along started to play “Adia,” which was her big hit at the time. The song was everywhere back then, coming through every damn radio, every damn speaker; there was no escaping it. And as it played, I heard a child’s voice singing along with the chorus—a voice I hadn’t heard in years and years. At least, I hadn’t heard it in such a sweet, sustained way, only in distress, in outbursts, in fits and starts. But here was Isaiah, my great big butterball of a son who’d been lost in the fog of autism since he was one or two years old, singing his great big heart out.
“We are born innocent.… It’s easy, we all falter. Does it matter?”
I was totally stunned. At first, I thought maybe there was some ghost, some spirit with us in the car. Then I thought some other kid had snuck into the backseat before we drove off. But it was Isaiah, singing! I nudged Danielle awake, because I knew she wouldn’t want to miss this, and as she opened her eyes she could hear Isaiah in the backseat, singing, “We are born innocent.…”
Danielle and I both started to cry, but they were tears of joy, tears of astonishment. We couldn’t believe what we were hearing. Isaiah knew all the words, and he just sang and sang, and soon as he finished I started pumping Danielle with questions. I wanted to know what they had done all day, how long Isaiah had been in the water, what he’d eaten for lunch … everything. I was scrambling for some way to connect whatever had gone on that day to Isaiah’s calm, tranquil, singing behavior. And as we talked we started to think that whatever was going on with Isaiah had something to do with the beach, with the water, with the calming, therapeutic effects of floating, swimming, splashing, playing.…
Wouldn’t go so far as to say a lightbulb went off in my head as we drove the rest of the way to Glenn’s place, but I could make a strong case that the bulb was in my hand. Now all that was left was for me to find a place to put it and flip the switch.
14
Surfers Healing
I’ve always thought of my life as a series of waves. There’ve been moments of calm and clarity, and moments of chaos and confusion, and in between and all around there’ve been wild, unpredictable swells, followed again by a kind of stillness. Not a bad metaphor, huh? And in my case it works, because my personal life has had as many ups and downs and sideways spills as my surfing life.
Heading home after that curiously wonderful Hawaiian trip, I was starting to think the surf was headed up, only up. Danielle and I were so blown away by Isaiah’s transformation after that long day at the beach we looked to re-create it as soon as possible. As often as possible. He’d always loved the water, always seemed more relaxed and more comfortable splashing around than he did on dry land. More like himself. But we never thought about the calming, soothing effects all that time in the water might have on his overall personality. We never made the connection. Danielle had just been too busy shuttling back and forth between Elah and Eli, and I’d been too busy running away from anything that looked like heavy lifting or heavy-duty parenting of a special kid like Isaiah.
All along, I’d wanted no part of caring for Isaiah … but now I wanted in. I was ready to embrace my son, at long last. Danielle was thrilled to see me finally connect—and not in a going-through-the-motions way, but in my gut, deep down. I was changed, suddenly and profoundly changed. Danielle had been on her own for so long she’d forgotten what it was like to have a partner, and I wanted to make up for lost time.
The most obvious way to do this, I figured, was to take Isaiah surfing. It’s what I knew, right? It was the one thing I had to share with my son, special needs or no. No, Isaiah would never take to the water the way me and my brothers had taken to the water. But surfing would be our lifeline. It would see us through, just like it had always seen us through.
We had some history in the water, I should mention: I’d paddled out with Isaiah on a board before; I’d stood him up for a tandem ride, or held him in my arms while I did my thing; he always seemed to spark to it, in his own way. I never spent the whole day or even a good long while with him at the beach; it was always just a one-and-done kind of deal. We’d catch a couple rides; then I’d hand him off to Danielle and go back out by myself. But the great takeaway from this long, glorious day at Makaha was that the pacifying effects of an open-ended day at the beach, the kind I used to enjoy with my brothers every day of our little lives, were surely remarkable. And that Isaiah was totally up for it.
Soon as we got back to California, I started taking Isaiah out in the water, every chance. All I had to do was walk up to him and say, “Go surfing?” And he’d take my hand and off we’d go. We’d look for reasons to head out—and, once we were at the beach, we’d look for reasons to stay. It wasn’t a cure-all for Isaiah, not by any stretch, but for the hours we were in the water he was a different kid. He was attuned to his environment. He was laughing and happy. Mostly, he was calm. And for a few hours afterwards he was more manageable, more at peace with himself and his environment. He wasn’t singing along to Sarah McLachlan tunes—that was a freaky one-shot!—but he was better able to dial in and follow what was going on right in front of him.
In a short time, surfing became something for us to look forward to, something to enjoy, and something to look back on—so we kept at it. We made it a full-on family affair. Soon, I started meeting friends on the beach with their own kids on the spectrum, and they’d ask me to take their sons or daughters for a ride. We’d hit San O or Doheny or wherever, and folks would wander over to check us out, and before I knew it there were all these special kids lined up, waiting for their turn.
It’s not like there was an unmanageable bunch of families, looking for a taste of whatever medicine Danielle and I had seemed to stumble on with Isaiah. Each time out, there were only one or two kids brave enough to give it a go—the kids of friends, or friends of friends. It grew over time, but in the beginning there was usually a common thread to knit us together, other than the fact that we had autistic children. After a while, word began to spread and there’d be two or three kids wanting in, and then three or four. I was always happy to accommodate, happy to bring a sliver of lightness and freedom into the lives of these good people. It was no longer about friends or friends of friends; the common thread of autism was enough.
Some of my pals came regularly. For a while, I fell into a routine with Cliff Rehrig, who played bass in the band Air Supply. Cliff was a bitchin’ dude, with long hair down to his butt, and I would take his son out every Wednesday. The kid’s name was Sonic Blue, and he was totally into surfing. Big waves or small, it felt to him like we were surfing Réunion Island. We hit on Wednesdays because that was always a half day at Paskowitz Surf Camp. In those days during the summers, I’d pitch in at camp, just to make some extra pocket money. As long as I was at the beach I’d have Danielle come down to meet me and I’d get Isaiah in the water, along with anyone else who wanted a turn.
Sometimes, it was a struggle to get these kids out past the break. In rough surf, I’d have to press them down against the board with my chest, to keep them from slipping off. Some of the kids would be scared; some would be stoked; you could never tell how it would go, but they’d usually calm down once we got on the outside. I’d try to talk to them, if they were verbal; hell, even if they weren’t verbal I’d talk to them, because somewhere in there they were listening. And there was also this: I used to cry all the time for these kids. I’d feel their pain—really feel it. I ached for them, for their parents, for the whole raw deal. But then we’d set about it and for a few moments we’d lift each other from the anguish of autism. We could just surf and hang and have a big old time.
Don’t know when or how or why Danielle and I hit on the idea of formalizing what I was doing with these kids. It just kind of happened, to
ok on its own momentum, and grew and grew. Without really realizing it, without really meaning to, we’d tapped into something bigger than Isaiah … bigger than our own little family … bigger than any of us could have ever imagined.
* * *
It was one thing to get comfortable with Isaiah in the water and quite another to find a way to be with him on land. He was a tough nut to crack—especially for a dad like me, who’d been completely uninvolved in his care up until this point. If you must know, I was making it up as I went along with Elah and Eli, and that was hard enough, but to try to figure things out on the fly with a kid like Isaiah was way past impossible.
One of our turning point moments found us in Cabo. Isaiah was six or seven. He was going through a lot of tantrums. “A lot” is probably an understatement. It sometimes felt like tantrum was his baseline behavior, the most common wave. He wasn’t sleeping. Danielle and I hadn’t yet gotten a handle on how to deal with his mood swings, his temper. With him. That would come, but much, much later. Danielle would figure it out, and a couple months later I’d catch on. But at the time it was an evolving, uncertain hassle.
Despite my halfhearted (at first!) and now full-hearted efforts, I still couldn’t quite come to terms with being a father to an autistic child. Hell, I had a tough-enough time just being a father, but this was a whole other handful. That’s why I’d bugged out, in the beginning. Even when I was home, I wasn’t fully there. I drank, a little more than I should; I stayed out of the house, a little more than I should; and in every other respect, I did a little less than I should.
I’d call in every once in a while when I was on the road and pretend to be involved. My thing was to play at being an active parent, instead of actually being one. I’d call home and hear some noise in the background, which I could convince myself was laughter, and say, “How’s Isaiah?”
Just like any other dad, off on any other business trip, avoiding any other family drama, except the noise wasn’t laughter but screaming. Isaiah, screaming. The bustle of activity I could hear through the phone wasn’t fun, family high jinx, but havoc. Isaiah-made havoc. Danielle would listen to my half-assed attempt at plugging in and say, “Fuck! Why would you even ask me that?”
It was just horrible, what she was going through with him. And I was nowhere, man. Just, nowhere. Turning tail and chasing waves.
Jump-cut to 1997. Isaiah was wearing an Izzy-the-mascot T-shirt, from the 1996 Atlanta Olympics. For over a year, he wore that shirt, until he outgrew it. That’s how the moment has rooted itself in my mind, through this odd, computer-generated character that I happened to share a name with, and in the freeze-frame picture I carry in my head of this one defining road trip with Isaiah, that’s what he has on. Man, he wore that shirt so often Izzy the mascot became the mascot of this one road trip. It’s like he was cheering us on.
Danielle had been having an especially rough time with Isaiah. Each day was bringing a whole new set of problems, a whole new batch of strange, difficult behavior. I’d been trying to make more of an effort, but I had no idea what I was doing. About the only thing I could do was be present, so that was my big thing. To just be there. Hadn’t done such a good job of that early on, but I was getting better at it. I was trying.
Now, in fairness to me, Danielle was much better at this autism stuff than I was. She had a whole lot more practice with it, for one thing. Had a whole lot more patience, too. She was strong, that way. She was the one running Isaiah back and forth to doctors, dealing with his medication, his diet.… She knew the drill, but more than that, I don’t think she really trusted me to take good care of him. But we’d just slogged through an especially difficult couple weeks and she was having her version of a nervous breakdown. She was crying, all the time. I’d never seen her so low, so despairing. It felt to me like she needed a break, so I switched into my wandering Paskowitz mode and figured a road trip was in order. That’s one thing us Paskowitzes had always been good at, getting in the car and driving. Towards something, away from something … didn’t really matter. The idea was just to go.
Turned out my parents were getting ready to head home from their annual pilgrimage to Cabo San Lucas, so I set it up so I would fly down to Cabo with Isaiah and help my father on the drive back to California. He and Mom were still living out of their vehicle; those days, they had a 1963 Chevy, with a cab-over sleeper compartment that slept two, uncomfortably. It was an absolute piece of shit, all rusted out, through and through. Don’t know how these two gentle old souls managed—hey, Doc was in his late seventies!—but they managed.
Couldn’t really drive around town in the Chevy, so my folks traveled with their crappy old Mitsubishi Galant, which was also in sorry shape. The shocks were gone, and you could really feel it on those roads down in Mexico. Any bump in the road, you’d hear, feel, taste the scrape of metal on metal. It drove okay, that car, but it wasn’t the most comfortable ride. Mom wasn’t interested in driving the Mitsubishi back to California on her own, so a plan took shape for me and Isaiah to fly down and caravan back with my dad, while she flew home ahead of us.
Danielle wasn’t too thrilled with this plan, because Isaiah wasn’t really equipped for this type of traveling, but she was so beaten down by this point she would have consented to anything just to grab some peace and quiet. Isaiah’s doctor wasn’t so sure it was a good idea, either, because Isaiah had started having these petit mal seizures—like, constantly. I’d been with Isaiah through enough of these little seizures to think I had a handle on them, but the doctor was worried my kid would throw a grand mal seizure, so he walked me through all these different scenarios to make sure I knew what to do, what to watch out for. It was a huge issue, me taking Isaiah from all these resources we had for him at home, from his routines, but I set it out like it would have been an even bigger issue if he stayed. Because I thought he and I desperately needed to spend this time together. Because I thought Danielle desperately needed a break. I was relentless, to where Danielle didn’t have it in her to fight me on this, even as she didn’t fully trust me on it. Eventually, I wore her down and she helped me throw together a couple things for Isaiah and sent us off, hoping for the best.
I steeled myself with a couple shots of tequila on the flight to Mexico, just to deal with all the weird looks people were flashing me and Isaiah. He wasn’t the best traveler, and he was pulling out all his best, most full-blown autistic moves, flapping his arms, screaming, going nuts. Whenever he was in an unfamiliar environment, his behavior would just shoot off the charts. I’d given Isaiah whatever medication Danielle had set aside for him, to help calm him down, but it didn’t seem to me like it was doing any good, and for a while I thought he’d be better off with the tequila.
Over time, I’d get used to being on the receiving end of the ignorant stares of ignorant people, unfamiliar with a kid like Isaiah, but back then it pissed me off. The tequila helped, but not much, and it came with the downside of having to look like a neglectful, absentee-type father, unable to deal with his own kid without drinking to tune him out, but all I cared about was getting us down to Mexico. About being there for Isaiah until each fit or tantrum passed. About helping him to get through each moment, each adventure, each day. No, I wasn’t exactly the poster boy for how to parent an autistic child, but I was doing my best, putting my own spin on getting it done.
* * *
My parents had been staying down in Cabo on the same stretch of beach for as long as I could remember. For all their noise and fuss about lighting out for the open road and not being tied to any one place, they were now creatures of habit. We kids had all grown. One by one, we’d left the campers of our childhood, the absurdly close confines of our growing up, and lit out on our own. Now it was just Mom and Dad, left to each other, and the shards of the itinerant, surfer lifestyle they’d basically invented.
There was a shack on the beach, alongside the camper, so that’s where Isaiah and I stayed. It was a woefully run-down place. There were scorpions crawlin
g on the mattresses, which would have freaked out most little kids, but for whatever reason Isaiah was more bemused than terrified. To him, the scorpions were a new thing to consider, that’s all. There were plenty of other terrors to keep him occupied—most of them having to do with the fact that I’d pulled him from his familiar surroundings.
Mom stayed on in the camper for a day or so with my father, helping him organize his things before she flew home ahead of us. That left me, Isaiah, and my dad—three generations of Paskowitz men, each of us completely unlike the other, cut from entirely different cloths. Put us together and we made one fucking crazy quilt.
The camper was parked by a stretch of beach that was part of a compound belonging to a guy named Don Hilario. He was a real local character. If you know Cabo at all, you know Don Hilario. He kept a pack of big-ass dogs on the compound for protection, and the dogs were a mixed blessing. They helped to keep our part of the beach safe from the local thugs and no-accounts, so I could get Isaiah into the water, but the barking was a huge problem. Isaiah was hypersensitive to it; he’d put his hands over his ears and start to scream and shake and sweat. If I didn’t stay on top of it, Isaiah would lapse into a psychotic-type rage. He’d bite himself, bang his head against the wall … whatever he could think of to make it stop. He was still small enough that I could fold him into my arms and hold him close until the fit subsided, but it would always leave us both in such a whipped-up emotional state. It was draining, exhausting, constant.
As I held him, I kept thinking, Man, Danielle. I don’t know how you do it. And I didn’t. I truly didn’t. Only explanation I could ever come up with was that she was some kind of angel, heaven-sent to guide our family over these rough waters.
Isaiah was on a bunch of different meds—then as now. The meds were unfamiliar territory for me, because I’d never really been Isaiah’s one-to-one caregiver over an extended period. I’d never seen him come down from these wild mood swings and then get whipped up again into one of his frenzies. It was a real roller coaster. Better—and, certainly, more appropriate—it was like facing down a giant set on a wicked surf day. Yeah, there were moments of calm, but what you remember are the killer waves.