And now for something unprecedented: a guest post on this blog. As you might imagine, then, this is something pretty special.
My dear friend Daniel gave me a unique and cherished opportunity to guest-write on his blog, so here goes.
I think, among the reasons why he’s allowing me a spot, is that I begged him, and I’m not ashamed. Another is because he knows I have a five-year-old child, Pocoloco (it’s a family name), who has ASD (Autism Spectrum Disorder) much like Daniel’s own son, Dar, whom you all have gotten to know and love.
There’s probably a hint of expectation that I’m to write about Pocoloco and his autism. The problem is, I don’t really understand his condition. Hell, I don’t know HIM well enough to dig through the trenches of his mind, and report accurately on what I see. This lack of understanding should explain why this story is only partially about him. Its focus, as will be evident later, is on similarities between him and me. I feel these comparisons are important, especially because sometimes similarities, in general, can simultaneously be a liability and an asset. The dissection of this duality is what I’d like to explore a bit. Incidentally, what you may find in reading what follows is that I enjoy both being at the center of attention and exploiting Pocoloco as a muse.
It’s pretty obvious, almost upon first glance, that Pocoloco’s affliction is more on the severe side. He is the worst-off developmentally in his Kindergarten “Autism Special Day” class. He is very loud and babbly and often repeats the same syllable over and over. He has been flapping and darting about as of late, but mostly what grabs people’s attention is his loud, loud, voice. Incidentally, I earned a B.f.a. in Vocal Performance, studying opera mostly. This is the first comparison between him and me that I’ll make.
I watch Pocoloco’s progress from between my fingers, and I always carry Daniel Smith-Rowsey’s sentiment of “…trading hope for acceptance…” around with me each day. I have defeatist visions of my wife and I not stressing out so much on education, and just having him cuddle with us all day. It might be potentially better for him (and us) emotionally. Is it so wrong to treat him like a complicated pet? Don’t answer that.
After the initial 12 stages of mourning that accompanied the news about Pocoloco’s ASD diagnosis, I swallowed hard and began to slowly ease into information-gathering mode. I read a bit about autism online, and tried to stay away from fringe sites and stuck with the established orgs. Through my early deductions, no entity is on the same page with the next. We, as laymen, are forced, in this uncertain climate, to come to our own conclusions as to how my son caught ASD. For all I know, autistic vampires bit him in the night. More likely, autistic vampires bit my baby-momma during her 2nd trimester.
I know I was a bit old and fat to have a kid (38, 6’1”, 245lbs), and these conditions statistically are worth noting, but the most convincing thread that connects nearly all expert theories is there may be some genetic component to it all. Things like hair color and heart disease often “run in the family”, why can’t mental illness?
A neurotypical kid might have been easier to handle, but even so I may not have been ready for all of the questions and problems he/she would have had. I think about ‘what ifs’ a lot. What if I had a normal kid? A kid who knew what day of the week it was, a kid who could tell me he was in pain, a kid who won’t be magnetically-compelled to jump into the nearest visible body of water, a kid who could empirically rationalize. What if I had a connection with my son beyond just cuddles?
Every expectant father wonders what kinds of traits will be genetically recognizable in their arriving baby. I say “father” only because I relate to fatherhood -not to say that mothers and grandparents and great-grandparents don’t do the same. Once the baby is born, we sort out the obvious genetic flags. Over time, dads get more and more in-tune with it, adding new perspectives and new data to the mix. I can alsosee likenesses to Pocoloco ‘s, detriments in my own, like I’m looking at an out-of-focus projection of myself. Although I feel a connection to my son in a way that most people see genetic traits shared with their offspring, my recognition of these traits also flashes on my own inadequacies, and on the stark realizations of how I got screwed as a kid out of a normal upbringing. I will do my best as a dad to not let Pocoloco get screwed like me. No son of mine. No sir.
The ASD diagnosis also gave me a desire to dig into my own childhood to search for clues and significance. I asked people who knew me then about how I behaved, and since, at the time I asked, I was 41 years old, none of the key players could remember anything relevant. This was very unsatisfying, so a couple of years ago I decided to find out more for myself. I recalled having gone to a psychologist when I was a kid for about a year, so I sent away for my medical records at “the institute” and, much to my surprise, got back a 30-page document that had a compiled report of my outpatient sessions there.
My continuing personal memory puts me in therapy for no longer than a year, but the reality I discovered in this document was that I had almost 200 sessions over five years. I obviously had been in denial about the amount of therapy I really got;repressed memory for sure. The Pandora’s box the report opened gave me shocks, conclusions, and a little peace. I also became aware of possible links between my son’s mental condition and mine.
In reading the report, I was doomed to remember some experiences of physical and mental abuse that it outlined. I guess a teacher at the school I was attending, The French-American Bilingual School (San Francisco, CA), thought I should seek help, and had me go to see a psychologist at an outpatient mental facility in SF. This is how the chronicles of my mental state all began.
Nobody knew what to do with me. Quite frankly, I wouldn’t have known what to do with me either. I was a mess. I was disruptive and often in another space and time. I straddled dimensions. For those keeping score, I still do to this day.
Starting at age seven, I commuted alone three to four hours round-trip a day into San Francisco from East Oakland via crowded busses and trolleys. This journey made it very difficult to complete homework assignments on weekdays, on top of exhaustion (from hyperactivity) and depression. Spending a lot of time on public transit seemed worth it to my mother for the valuable and expensive education afforded to me. It was a privilege that I was constantly to be reminded of. I mean, it’s French after all. Frrrennnch. Somehow this fancy, fancy school was supposed to cure me. It did the opposite. I strengthened a once-innate disdain for not just education, but for authority in general. Pocoloco also doesn’t like to be told what to do.
I predictably slipped through the cracks and I think people noticed, but they couldn’t be bothered to do anything about it. My outbursts were probably too mild to send me to a mental institution, but I was too much for them to handle. My mother was told if I wanted to stay enrolled, I’d have to repeat the fifth grade.
This threat must have worked, because my mother yanked me out of there, and I immediately became part of the Berkeley Unified School District. I was in public school from 6th – 12th grade, and although it was a positive change, it was too late for me to develop healthy lifelong learning habits.
I think back on my pre-college education with shame and hurt, but I am not a victim, judging by all the wondrous bi-products and splendid side-effects of great things and people that have dug their heels into my life.
Granted, ADOS tests and evaluations don’t go into my kind of non-scientific analysis. I just like comparing things like all humans do. I also like making lists. Here are some other ways I’m mentally similar to Pocoloco:
1. I don’t like to make eye contact with people I don’t know, like, or who are asking something from me. Pocoloco doesn’t mind it, but he is often so distracted, that he forgets to hold eye contact. Different means, same end.
2. Issues with “…motor-planning for speech” was cited in the report I got from my childhood therapist. Pocoloco says very few words well.
3. Learning things conventionally is super-hard. For example, I’m not a strong reader. To this day, I force myself to read books. I actually have to put it in my schedule or I won’t do it. Pocoloco bites his hand when he gets frustrated in learning something. He’ll often withdraw if things are not making sense to him, or if he is not getting enough praise for his accomplishments.
4. I have a strong disdain for authority. Pocoloco does not like taking direction, unless it’s followed by a reward, like a cookie or a peek out the window during session. It’s so hard to know how to be a good parent to a child with ASD. There is no universally accepted way. You really walk a line, I think moreso than with neurotypical kids. One can be too hard or too soft, and could very easily be at fault in either direction. For example, I want to engage him, but I don’t want him to resent authority like I do.
5. I don’t do things unless they are fun or enlightening. I have to make things fun by turning mundane tasks into games I like to play. The whole idea behind ABA therapy is taking things that they like, and using them as motivators to perform tasks. This is Pocoloco’s prescribed path to greatness.
6. I have been diagnosed with OCD (Obsessive-Compulsive Disorder). I hear that ASD people often have it. I am a door-lock-er. I started taking Sertraline (SSRI-class antidepressant) for it, and it all but cured me. We’re thinking of putting Pocoloco on this same wonder-drug as kind of a third attempt at waving a magic wand after trying Ritalin and Aderol. Maybe a drug might have helped me as a kid.
7. Sensory seekers unite! I love to feel things. As I get older, the more I seek pleasant sensations, like fluffy sofas, gin martinis, and sex. Pocoloco likes all tactile feelings, anything from sticky hands to being drenched fully clothed. He even likes some painful ones, like being on the precipice of tall ladders leading to slides. He often “regulates” himself by biting the back of his hand hard enough to leave wounds.
8. There are a number of family members who are nerdy / socially awkward, and my feeling is this may add to the whole soup of predisposition for Pocoloco.
9. We both go through phases in every area. I go through three-week sudoku and drawing phases, Pocoloco goes through three-week Youtube and scooter phases.
I have tremendous sympathy for Pocoloco. I feel so bad that he will have a hard time expressing himself, getting people on board with his plan, convincing someone to make-out with him (which he wants to do with people he’s close to). To have the strength required for deflecting sympathy, you need to have a mind that works well with other people’s. Pocoloco does not have that kind of brain. This difference is the biggest point of comparison between him and me. Coincidentally, in dealing with it so much, it has become the closest connection I have with him. Besides cuddles, of course.
All animals judge differences in things and each other, because this is how we survive. We go for the riper fruit. Humans are very good at this and can’t help comparing things. To make a comparison, you need to use judgment. Conversely, I say, internal in-depth judgment requires -no, BEGS FOR – comparison. Nearly always when I judge someone, I automatically compare them to myself. If you swear you don’t judge people, please write in the comments below, I’d love to hear from you.
“Do people really have to judge people on whether they’re gay or straight? Can’t we just judge them on the type of car they drive?” -Ellen Degeneres.
I argue that we can’t help judging people, and when we do, we always compare them to ourselves consciously or not. I think we often make ourselves half of the equation when we scrutinize someone. What that looks like to me is, when I look at Pocoloco from a judgmental standpoint, I almost always think of myself as the other half of the equation. Being that other half requires introspection. Now, I have to be careful, because being too introspective can paralyze me. I have to be aware of using introspection for good. This can be daunting, but can be helpful to me in the overall philosophies on my approach. I want to teach him and challenge him, but I also want him to trust me and like me. I think I have an edge, knowing our similarities.
It’s very possible that I’m childishly impressionable. I may be following Pocoloco’s lead in symptoms, just like an Aries might want to be a natural leader because they read it in a horoscope as a kid, and therefore subconsciously go that direction. I AM an Aries, BTW. Maybe because I’m missing a connection with him, and want one so badly, I play up my own symptoms to look like ones of an autistic adult.