Hello, Clarice….

I had an entire post written about a memory from my college days that somehow evaporated after two drafts, and I’m not in the mood to redo it right now. Instead, I wanna talk about Anthony Hopkins.

Anyone who follows my thread on Facebook saw my post the other day about Hopkins winning the Oscar on Sunday, and how he’s apparently the first openly autistic person to win it. That blew my mind – WHAT?!?!? Upon reading the article, Hopkins was apparently diagnosed with Asperger Syndrome in 2017, at about 78 years old. He admits to being very high-functioning, but somehow he had flown under the radar his entire life. Almost eighty years. He says that he did poorly in school, he couldn’t concentrate well, and that for most of his early life he just figured he was stupid.

Imagine that. Feeling that something is wrong with you because you’re not like your peers in some way. Feeling inadequate, unable to connect or to accomplish what others around you are doing with relative ease. Sir Tony simply resigned himself to the fact that he probably wouldn’t go far in life. And yet, when he found something that he loved – the theatre – he threw himself into it with incredible focus and drive. He states that, since he knew he was “stupid”, he would have to work even harder to have any chance of success in the field.

As a result, he trained himself to train himself. He disciplined himself to learn his lines thoroughly, backward and forward, with no room for error, because he felt he didn’t have any. The result is an acting style with a delivery that sounds incredibly natural, never forced, and an actor with an intensity that few can top. Silence of the Lambs is the obvious example, but take just a moment to examine his performance as Odin in any of the Thor movies. The man has gravitas. In the first Thor in particular, Chris Hemsworth sounds sometimes like a bad Shakespearean actor, and I think it was possibly intentional for that film. Swaggering, pompous, over-inflected and grandiose, and again, while I do think it was on some level a choice, check out Hopkins. Tony. Barely. Moves. He raises his voice in maybe two places. But his eyes are rock steady, his body never flinches, and you have no doubt of Odin’s POWER. This guy gives Zero. Fucks. And every single word out of his mouth flows out with confidence, ease, and no need to be pushed. He believes what he’s saying, because the actor is in complete control, and since the actor is in control, the character is in control. It’s impressive.

And Sir Tony does this in every. Single. Thing he’s in. Even a more over the top character like Van Helsing in Coppola’s Dracula just sounds so damn natural when he talks, even when he’s rattling off, “Oh, you drive a stake through her heart and you cut off her head”, It’s so casual and matter-of-fact it almost seems like a throwaway. Hopkins rarely fails to give a less-than-stellar performance, and I’ve admired him for years, ever since Lecter first stared into my soul.

And now, I admire him even more after discovering his autism. Because, without even being aware of it, Sir Tony had to learn how to overcome his own inherent challenges to become one of the most effective communicators in the business, in the world. I have a feeling that he probably has always had trouble making eye contact (a common tic in autism), and as an actor he had to learn how to do it, and that is what gives his eyes their intensity, their focus, their power. I remember learning as a child that eye contact was one of the most important parts of communication, and I made a point of looking into people’s eyes, not only as I talked to them but also as I listened to them. It’s what people expect, and if they don’t get it, they think they’re not being listened to. It’s a common issue with Aspies, although Duncan only has this issue if he doesn’t want to talk about what you want to talk about. When he’s leading the conversation, he looks right at you. Eye contact signals engagement, and he wouldn’t do it when he was in virtual school.

In-person school is going great, however. Every day when I pick him up, I get a thumbs up from his teacher, and he’s starting to tell us things about his day. You gotta ask, but he’ll tell you now. He’s had a new best friend every day for three days in a row, so he’s becoming more and more social with his classmates (you’re his bestie if you’ll play zombie hunt with him), and he’s engaging more and more with more than one person at a time on the playground. He still has his aide, but on Wednesday he did all of his classwork by himself, with no aide and no extra prompting. He’ll tell you he still hates school, but his actions speak differently.

At home he’s getting better, too. His tantrums are decreasing, and his questions are increasing. He has two favorite books at the moment: 1001 Kid Jokes, and my own childhood copy of The Charlie Brown Dictionary, which he’s reading front to back. He can’t read it cover to cover because he’s torn the covers off. We had new friends over for dinner last night, and their five year old girl Winslow became his next new bestie, and they played for hours. It was wonderful to see.

Duncan’s journey is just beginning. There will be hurdles, for sure, but he’s a happy, healthy five year old, and he’s doing well so far. And Sir Tony’s openness about his own autism and his obvious success give me hope that, not only can Duncan be happy and successful, but so can so many other kids on the spectrum, if they’re given the opportunity to focus on something they love, and the love and strength it takes to help them along the way.

While I’m a little bummed that Chadwick Boseman (RIP) didn’t win the Oscar on Sunday, I’m grateful that Sir Tony did just because of what it proves to me and to the world about autism. Not every kid on the spectrum will necessarily thank the Academy, but they can do so much more than we think they can. We just need to make sure that their spirits aren’t broken. Sir Tony’s definitely wasn’t, and he didn’t even have any of the resources that these kids do now.

I can’t wait to see what Duncan becomes. And if he ever thanks the Academy, I hope he takes me and his mom with him to the show.

July 29, 2015

I know last time I said I would write about Ryder, but I should have written this post a very long time ago. I had intended to so many, many times, because this date is now one of the most important in my life, and it should have been acknowledged by now. Bear with me, because it’s a long one. But we wiill start with Ryder.

You all know Ryder. Ryder was about five and a half at this point, and he was very excited to become a big brother. We have a video clip somewhere of his reaction when we told him Julee was pregnant, and you should see the joy in his face. If I can ever track it down again after multiple phones and who knows how many backups, I’ll re-post it. It’s lovely.

So Ryder was onboard for a sibling. He was, however, very adamant that he did NOT want a sister. He had to share a bedroom with his new sibling, and he couldn’t handle the thought of there being anything pink in there. A man can only take so much. So, even though we kept Ryder’s own gender a secret from ourselves, we had the OB tell us this time around so we could warn him upfront. The gods showered their favor on him and blessed him with a little brother. Ryder sighed with relief, and then we got down to the business of choosing a name.

P.S.: I am totally in favor of not finding out the sex of your baby beforehand. Yes, I know, it can help you pick colors, blah blah blah, but there are very few true surprises in life, and I feel like this one is worth it. Anyway.

Julee had veto power last time due to the more than slightly harrowing circumstances of Ryder’s own birth, but the name had more or less been decided by the day, and when the time came, I was simply grateful for the good news and could care less about something as trivial as the kid’s name. Like I said, we had no idea whether we were having a boy or a girl the first time around, so we tried to be prepared either way. A girl’s name was easy, but a satisfying boy’s name was elusive. Finally, though, we settled on Ryder Quinn, Julee more than me, but again, on the day, it worked just fine. Julee graciously acknowledged her win for the first kid, so I got a little more pull with the second one. “Duncan” had been on my list for boys’ names forever, and Julee had it as a family name somewhere along the line, so that one worked pretty well. I had also always loved the name Jude, and Hey, Jude is my favorite Beatles song, so that one was my top pick. It took a little work for Julee, but eventually she came around. Ryder, however, was opposed to “Duncan” for reasons known only to him. His own personal preference was to name him “Argentina Neptune” – don’t ask where that came from. However, we won that fight by telling him that he could have Dunkin Donuts on the day of his brother’s birth. It was the perfect bribe, and “Duncan Jude” was settled on.

Duncan was due on September 5, and all preparations were made for the date. My mom and dad both planned trips out here to meet the new little guy, and we replaced Ryder’s regular bed with a massive loft bed with drawers built in so the two boys could share the tiny bedroom in our house at the time. Everything seemed to be going smoothly until July 29.

Julee was going for her final ultrasound that day, and we all went along so Ryder could hopefully see it as well and get a first glimpse at the new addition. He was super excited and felt pretty grown up. At the OB’s office, though, Julee’s blood pressure was abnormally high. It’s usually extremely low, bordering on non-existent, so this was unusual, and it wasn’t the first time during the pregnancy that it had been elevated above even the normal range. She also hadn’t felt much movement in recent days, and she’d been feeling unusually queasy lately as well. She hadn’t really had any morning sickness with Ryder, nor in the early stages of this one, but lately…. The OB was concerned, so she started searching for a fetal heartbeat.

She couldn’t find one.

Within seconds, Ryder and I were rushed back to the waiting room, where we spent the next hour or so with no idea what was happening. Finally, the OB came out and told me that we were having a baby TODAY. This was five and a half weeks before the due date, which meant that Duncan’s lungs were likely not fully formed yet. It was risky, but she knew that if we took him out that day, they could intervene in numerous ways. If we waited until he was full term… who knows? She had no idea what was going on in there, and the only way to know for sure was to deliver. NOW.

This was at 4 in the afternoon. Julee was going to deliver by C-section within the next few hours, and I had to be there at the hospital as well. So I got to work. I started making all the necessary calls. My mom immediately rescheduled her flight for the next day. Ryder ended up spending the night with one of his buddies, and I packed a bag for Julee to stay in the hospital for the next couple of days. I called all the close family and friends, and I prepared myself as best I could.

I knew more of what to expect this time around, since Ryder had also been delivered by a surprise C-section, but the stakes were much higher this time around. We wheeled into the room, and everything went as planned. And then they lifted Duncan up above the sheet, and I could see the fist-sized knot tied in his cord.

My heart dropped. I knew what oxygen deprivation usually meant for a fetus. Brain damage. I thought we could either be facing a lifetime of permanent disability or possibly planning a funeral. I was scared during Ryder’s delivery, but this was a completely new sort of dread. The OB and her team rushed him to the side table to get him breathing, which took several minutes and during that time every nightmare thought possible raced through my head. Finally, though, they got him to start breathing, but it was weak, and they knew they would have to provide support. Also, as soon as he started crying, he peed blood.

A second wave of terror washed over me. What was going on?? They rushed him out of the room and began doing the really hard work of keeping him alive. Julee was moved to recovery, and the attending doctor started interrogating me on family history of kidney issues. Those of you who know me well know that I only have one kidney – my left one was removed when I was three months old due to some serious problems I was having. Another story for another time, but right now it was relevant. The hospital Duncan was born in was small and didn’t have a NICU, so Duncan was going to have to be moved immediately. The larger hospital in nearby Pasadena had more resources. So, while Julee came down from the drugs, I made all the calls again, and they prepped him to be moved by ambulance.

This is Duncan’s first photo. I still have it on my phone to this day, and I’ll never delete it. Tube down his throat, electrodes stuck all over him, Duncan was sealed inside a plastic cocoon for his ride. We were only able to touch him once before they had to rush him away. I followed the ambulance in my car while they moved Julee to a private recovery room. Once Duncan arrived at Huntington, they had to infuse him with blood because of the loss from what he was still peeing out. If you’ve never seen this, it’s yet another parental nightmare. They had to insert a needle into his scalp. I was told his lungs hadn’t fully formed yet, and he would definitely need positive breath support for several days. Basically, a tube into his lungs to gently push air into them and help his still-developing and very weak diaphragm pull air in. Gravity would help him breathe out, but he needed help to start. He was also jaundiced and would need the bilirubin light for a while as well. I was told to go home and get some sleep. Come back in the morning, and they would update me as needed.

The fun continued the next day. When I got there, they told me that the blood in his urine was from damage to his kidneys and the adrenal glands on top of them. In fact, at that moment, they weren’t even sure his adrenals were developing at all. Plus, his kidney function was extremely low. I won’t go into the specifics, but essentially they were worried that his kidneys might never work properly.

I watched him tan under the bilirubin light for a while, and then I shared the news with all the relatives and peeps and went to the other hospital where Julee was recovering. She wasn’t gonna wait aroudn to see him. She hadn’t even held him yet. Less than a full day after having a C-section, Julee dressed and walked out of that hospital on her own two feet, and I drove her to Huntington. She walked into the NICU under her own power, and we were all together again. Except for Ryder, who would have to wait for a few more days to see him.

Preemies are usually much smaller than full-term babies, understandably. They can often have health issues their entire lives. and seeing a ward full of super tiny humans is a humbling thing. But Duncan was a MONSTER. at five and a half weeks early, this kid weighed almost SEVEN POUNDS. He dwarfed all the other babies in the NICU. Had he gone full term, he probably would have weighed around ten pounds. Julee literally would have given birth to a bowling ball with hair. He was a beast. And apparently, a strong one. They kept the breath support for about five or six days, if memory serves, but eventually the tube came out. His jaundice improved within about that same time, and all signs were good. Except that he was still peeing blood. They couldn’t figure out exactly where it was coming from.

After a week in the NICU he was moved into a private room for closer observation, and while it lessened, the blood was still there. His kidney function was low, but steadily climbing, even with the blood. But, after about nine days, they seemed to think he would be okay. We had begun to relax, thinking he would be home soon. Then, on Day Ten, the doctor on his case called me and told me they were moving him immediately to Children’s Hospital Los Angeles. After another ultrasound they suspected he might have a blood clot in his inferior vena cava, which was very bad news. Huntington was good, but they weren’t as good as CHLA. CHLA is one of the best pediatric hospitals in the world, and if anyone could help him, they could.

Another ambulance ride, more waiting, more terror. Duncan got to CHLA, and within an hour he was seen by a pediatric urologist. This dude was the biggest bro I had ever met. He was one of the best, and he knew it. As we waited in terror, he strolled in and told us nonchalantly that it was probably no big deal. It could be a blockage in his urethra, it could be this, it could be that, whatever, bro. It was the most Dude-California doctor experience we’d ever had, and it wasn’t exactly comforting. Doctor Bro left, and then we saw the nephrologist, Dr. Lemley. Lemley was fantastic. We todl him about what Doctor Bro told us, and he smiled and said, “Ah, yes, Doctor Bro. He’s a great urologist. But this is a kidney issue, and I’ve been doing this for a long time.”

In a nutshell, the lack of oxygen had manifested in damage to the kidneys instead of the brain, and the blood was essentially just scabbing from where his kidneys and adrenals were healing. We had very little to worry about in terms of immediate health. He was going to be okay. OH, and it had nothing to do with my own kidney history. Just a weird coincidence.

Duncan spent another week at CHLA, and during that time the bleeding stopped, and his kidney function improved. Julee spent a couple of nights there in the most uncomfortable hospital couch-bed in existence, but we were so close that we just drove down every day. After that week, he came home.

Dr. Lemley’s diagnosis wasn’t all sunshine. He told us that, although the initial damage was healing, it probably meant that his kidney function could be impaired permanently. It all depended on the number of nephrons in his kidneys, the little filters that everyone has that do the work. Nephrons apparently vary in number – the more you have, the better your kidneys are. There was no way to predict how many nephrons his kidneys had, because they would continue to grow as he grew, and all we could do was monitor them until adulthood. Lemley told us that we could probably expect him to need a kidney transplant by the time he was an adult. But, we wouldn’t know until we knew. Not the best news, but it was better than the way we felt two weeks earlier.

We saw Dr Lemley every week, then every two weeks, then every month, then every two months, then every three months until Duncan was about eighteen months old. At that point, he told me that somehow Duncan’s kidneys had fixed themselves. He’d never seen anything like it, and all of the staff referred to him as a miracle baby. He had healed himself with no intervention from an injury that was likely to have lifelong effects. Amazing. He’ll continue to be monitored until he’s eighteen, but now it’s every two years, and so far he’s fine. We went from worrying that he might not survive the night to a perfectly healthy baby boy. SCIENCE!!!

Life with Duncan Jude continues to have its challenges. There’s plenty of work to do to help him develop and grow, but man, is he strong. He’s very big for his age, just like his brother was and just like his father was. He’s whip-smart and precocious. He’s also stubborn, and that’s probably what saved him as a baby. He’s a fighter, and that will only help him overcome whatever obstacles he’ll face as he grows. And being autistic, he’ll have them. But I think he’ll be okay.

Now, the big question: did his birth trauma cause his autism? The answer: who the fuck knows? it doesn’t really matter, except maybe from a scientific point of view. But it’s done, and all we can do is help him figure it out. And he’s still a miracle baby, even when he’s a pain in the ass.

As of this writing, he’s currently dancing to “Zombies Want Your Candy” by the inimitable Parry Gripp, a kids’ musician who is now my mortal enemy. He’s playing with the dog and splashing in the spa because it’s hot outside. He’s come a long way from the baby in the plastic bubble.

Oh, and Ryder finally got to see him and hold him after that first week in the NICU. Here’s a picture of that. And the joy is still there.

P.S.: Ryder got his donuts, as promised.

Calvin, Pt. 2

I’m trying to rebuild the habit of writing on a regular basis – every day is still a ways off, but I’m hoping at the very least to post on this blog every 1-2 weeks. The ideas aren’t flowing freely out of the tap yet either, so I have to flex the muscle to keep it flexing. But I’m in my chair, the headphones are on, and the soundtrack to Braveheart just started rolling. That’s always been good chill-out writing music for me, ever since college when I first bought the CD. Still works. So here we go.

I thought I’d follow up last week’s post with a little more about Duncan, since coping with his autism is a big part of what this blog is now about. Specifically, I want to go back to Calvin & Hobbes and dig into his love for that again. My therapist asked me last week why I thought Duncan was so drawn to Calvin, and, being the deep thinker that I am, I already had an answer ready to go. I saw similarities in Duncan’s personality and Calvin, and that sent me down a path to an interesting revelation: I think it’s entirely possible that Calvin is autistic.

The parallels are strong: wicked high intellect, trouble staying focused in school. A powerful imagination, a focus on one’s inner life to the exclusion of the world. Difficulty communicating, especially on subjects outside of one’s own interests. I mean, Calvin’s best friend is his stuffed tiger, and the life they live inside his little, expansive head is the stuff of legends. I don’t think for a second that Bill Watterson intended Calvin to be autistic – the strip was written for adults to reminisce in their own childhoods with the knowledge they have as adults. It ain’t really for kids. Plus, Watterson is notoriously private (there’s a documentary about just how reclusive he is), so if that was his intent, we’ll probably never know. But the parallels are fascinating, and these days you can see just about anything in hindsight, thanks to the miracle of post-modernism.

I gave my therapist this answer, and he agreed with me that a case could be made, for sure. I felt like I’d somehow Made A Contribution To The World. I was, for a moment, proud of myself and my own obviously prodigious intellect. And then, right after our session, the therapist sent me a link to a reddit thread about the subject, just to keep me in my place.

So yeah, someone else has noticed it, too. I followed the thread he sent me for a few lines, and the poster had some support, and then someone dropped this comment:

“Or maybe he’s a fucking kid.”

This wasn’t the first comment to disagree and to posit that, most likely, Calvin is just a six-year-old, prone to wildly imaginative play, love of his stuffies, and trouble controlling himself. Absolutely. I even said this about Duncan in my last post: he’s five, but amplified. It’s been an ongoing challenge for us to try to suss out exactly where Duncan’s autism blends in with his age and level of maturity, and it’s damn hard to do. Neurotypical children are often short-tempered, have trouble communicating, especially when upset, and can display a lack of empathy for others. All absolutely true.

But the sneer I read into this comment really lit me up. Again, I don’t pretend that I know what Watterson intended when he created Calvin, I just know I see a reflection of my son in him, and that makes me love both Calvin and Duncan that much more. but there is an implied negativity to this particular comment that I can’t overlook. And you can say that all parents love their children, and of course this is also absolutely true. And (hopefully) no one will deny that raising a child on the spectrum can be extremely challenging – just wait til I tell you about dinner Friday night, or Duncan’s first day back in school – and it is this love, this overwhelming, almost frightening, powerful love, that gives you the strength to get up every morning and keep trying to raise that child, and it gives you a perspective on kids that parents of neurotypical children just don’t have.

And this isn’t a slam on those parents – fuck me, raising ANY decent child these days is a goddamn marathon – but this asshole made it pretty clear in his reddit comment that there was something wrong with assuming Calvin could be autistic. And that pissed me off. And it’s the implied use of the word “normal”. More accurately, Normal. Capital N. Granted, the commenter didn’t say that, and he even qualifies later by saying he’s not trying to be aggressive, but it’s there. Normal.

Don’t get me wrong. I’m still new at this, I’m learning to cope with my son’s outbursts and intractability, I’m learning when to hold boundaries firm and when to let some things slide. I’m still learning to love him because of what his condition could give him, and I’m still hoping that he can have a happy, productive life. And I know it’s gonna take a lot more work to get him to some of those places that it would for a neurotypical kid – a kid like his older brother, for instance – and it’s up to me to help him with that. I’m learning to let go of anger when he does something that I don’t want him to do, how to cope with my own fears and disappointments, and how to appreciate his uniqueness, and how to revel in whatever gifts his condition eventually bestow on him.

I DO know that I won’t be ashamed of him, nor will I hide it or treat it like a disease. I know that I don’t ever expect him to be Normal. Fuck that. Looking at the state of the world, Normal was only working for a few people, so then it really wasn’t that normal, then, was it? I’ve always been drawn to misfits, outcasts, weirdos, iconoclasts – these were the kids I was friends with in school, because I didn’t feel exactly Normal myself, either. I questioned things when a lot of my peers didn’t. I called out absurdities when I saw them, I could see when people were in pain. I was just drawn to people who saw the world differently. Normal has never been a thing for me.

As a parent, some of that changes. There are things that have to happen – toilet training, learning to read, tie your shoes, go to school, cooperate – valid, useful, important skills that everyone in the world needs, and a large number of us don’t seem to have, I might add. So maybe Normal doesn’t mean anything at all, and in fact, what we consider Normal might be the exact opposite of what truly IS normal. So I won’t use that word. And most parents of spectrum kids don’t use that word when referring to neurotypical kids, and I totally get it. I slip up every now and then, but, like so many other labels these days, I’m trying to use better ones. I’ll just call him Duncan, because that’s what he says is his name, and I will protect and defend him from anything or anyone who tries to hurt him.

Is Calvin autistic? Actually, like another guy says in another thread, he’s ink on paper. 100% true. Plenty of people have also said he could be a poster child for any number of disorders. Throw open the DSM-IV manual, close your eyes, and point to a word on the page, and he can probably satisfy some of the criteria for whatever you land on. ADHD, sociopathy, you name it. Armchair psychologize the shit out of that and make yourself happy.

But, Calvin gives me a window of understanding and empathy into my son’s condition, and that, for me, is also absolutely true. I loved Calvin a lot when I read the strips in the paper every day, and I loved him when I bought all the collected strips from the bookstore. I loved him when I gave them to my older son, Ryder, to read and to cackle over. And now I love Calvin even more, because he reminds me of Duncan. And Calvin is most definitely NOT Normal. Thank Christ.

POSTSCRIPT: I have to say that we recently hid the C&H books from Duncan for a while, because among Calvin’s vast and impressive vocabulary are a ton of creative insults, and Duncan became very good very fast at using them on us when he gets upset. Not his fault, it’s mine for not thinking about that when I let him have the books, so it’s on me if he ever calls me or anyone else stupid. I’ll own that, and I’ll try to fix that mistake. But I hope he can read them again someday soon. Because I was enjoying reading them again, too.

POST-POSTSCRIPT: I should also add that for the last three days he has insisted that his new name is “Zombie”. it hasn’t stuck yet, but you never can tell…. Thanks, Parry Gripp.

POST-POST-POSTSCRIPT: My older son, Ryder, the main reason I started this blog almost a decade ago, turns eleven tomorrow. I’ll try to write about him next time. Some of the people that follow this blog must be curious about how he’s doing.