Long before I was the Autism Dad of Skylar, I was a fledgling novelist not yet 30 years old. I had what appeared to be success almost out of the gate, procuring a coveted literary agent just a few months after sending out query letters for the manuscript I’d finished (ha-ha!). In mid-2001, I entered into a six-month contract whereby the agent would pitch my work to publishing houses. The future looked bright, even when the agent wasn’t able to sell my book within the agreed upon time frame. She claimed it wasn’t the material but a suddenly volatile book market and that I should keep at it.
Keep at it I did. I left my job as a Day Program Director at a program for adults with special needs, in part, to provide shared living to my favorite individual there whom my wife Jen and I wanted to become a part of our hopefully growing family, and, in part, to have free time during traditional working hours while still drawing a good salary. The free time not only meant our future kids wouldn’t need to be placed in day care, it also meant I could have more time to pursue agents and tweak my finished (ha-ha!) book in the unlikely event it needed any fixing. I even began work on the next one.
I sent out dozens of query letters but instead of getting the positive responses I’d anticipated, I mostly received form letters rejecting my proposal. Still, I remained undaunted, as virtually every successful writer I knew of experienced the exact same thing. The agents who didn’t ignore my proposal asked for material such as the first 50 pages, which I was happy to oblige. Similarly to when I’d gotten my first agent, I figured the work itself was my surefire entry into this exclusive world.
I was dead wrong. I received vague-but-polite rejection letters in response, praising aspects of the writing but claiming it “wasn’t a match” for what they sold. I wasn’t terribly upset, however, as my priorities changed dramatically when Jen gave birth to Skylar, our firstborn. I had no intention of giving up on my writing dreams just yet but I did need to take a short break. Little did I know the short break would last nearly six years.
The first several months of Skylar’s life was a challenge unlike any I’d ever faced. I’d never even been around a baby, let alone served as the primary caretaker for one. I had very little idea what I was doing and, unlike writing, nothing came naturally to me. Unfortunately, things I believed to be challenges at the time paled in comparison to what was to come.
When Skylar reached nine months, we began to notice her development had not only stalled but was heading in the wrong direction. She was no longer meeting milestones and appeared extremely detached, staring incessantly at ceiling fans and not responding to much of anything verbally. She tapped things for hours on end and displayed little emotion or ambition to explore her surroundings. Jen and I were both in the human services field but only my wife had the foresight to suspect autism. I, on the other hand, suspected Skylar’s struggles were the direct result of being stuck with an inexperienced, unskilled father during the day. Even though I was trying extremely hard to be a good parent, what the hell did that matter? There are no points for effort when it comes to parenting. I had to improve, leaving me no time to sell a stupid book.
Our pediatricians—as they were trained to do—downplayed the possibility that Skylar’s delays indicated autism. In fairness to them, the intensity of my concerns didn’t exactly match those of my wife, making Jen look like the type of worried first-time parent who needed constant reassurance everything was okay. And in defense of me, Jen absolutely did fit such a profile, as autism was hardly the only malady she’d diagnosed Skylar with during our daughter’s first year of life.
The pediatrician suggested bringing Skylar to an ear specialist, as she’d had several infections over the previous few months. The ear specialist looked in her ears and immediately remarked they “looked like hell”, so much so it was questionable if she could hear much of anything. It was a huge relief, as the run of infections lined up perfectly with the time she began to fall behind developmentally. That had to be it. She didn’t have autism and I was off the hook for sucking as a father. The tubes the doctor was to insert would solve everything. I was so relieved I even began to think about resuming work on selling my book to agents.
The tubes he inserted improved Skylar’s hearing but solved nothing. She continued her detachment from the world around her, making no eye contact and developing zero language skills. She played with toys incorrectly by spinning wheels or slapping them and had no sleep pattern to speak of. Meanwhile, her cousin Jenna, born just two weeks after my daughter, seemed likely to go on a spoken word tour and teach at a university before reaching the age of two. Jen continued to insist it was autism but nobody else seemed to agree, most of all me. Skylar’s problem was her awful father but I was getting better and so would she. Any other possibility was too horrible to consider.
Reality was forced upon me when Skylar was diagnosed with autism at 18 months by not a doctor but a comprehensive study at Boston University. People immediately told me how lucky she was to be born to parents who would know what to do. Right. Maybe she was lucky to be born to Jen but I sucked so much that I couldn’t even admit my kid had autism until it was way too late. I’d been a delusional coward and my poor little girl was probably doomed to a life of solitude because of it. I would never connect with Skylar.
For obvious reasons, I continued to ignore my book but that didn’t mean I didn’t spend a ton of time reading. I needed to educate myself about what my little girl was facing and how to best help, as all of my professional autism experience was with adults, not kids. My hopes were raised when I noticed that more than one of these books spoke of a miracle diet that had “cured” kids with autism. It occurred to me that the claims were farfetched but, then again, how could more than one person have the same story? It didn’t seem harmful so why not give it a shot.
The diet possibly helped regulate Skylar’s sleep pattern and she made great improvements across the board over the next 18 months, though the huge increase in the volume of her direct services resulting from the official autism diagnosis directly coincided with her surge. Maybe I couldn’t help my kid beyond defrosting a delicious Kinnikinnick donut that fell within her gluten-free-casein-free (GFCF) diet but I was going to at least oversee the miracle of her recovery. I even started to dabble in selling my book again, sending out query letters but not bothering to read or edit the material because it was, after all, finished (ha-ha!). I also trained to become an educational advocate for kids with special needs.
We eventually determined the GFCF diet, while not harmful, didn’t make a lick of difference in Skylar’s autism while making her even more of a social outcast so we dropped it. Nonetheless, her improvement, outside of occasional regressive periods, was steady. She was talking in short phrases, fairly well-behaved, and seemed happy enough as she entered the public school system. I spent the next few years working steadily as an advocate and volunteering for non-profit organizations in increasingly high profile, time-consuming roles that kept me from any actual writing beyond the occasional query letter. It was just as well, as I continued to get vague, polite rejections or ignored altogether. It didn’t bother me, though, because who the hell cared about selling a book when I had a kid with autism to save and other kids with special needs to help? It wasn’t until I received a particularly blunt rejection letter that my passion for writing was reinvigorated.
The letter basically said my voice in the book was boring (I was writing in third person perspective) and it contained a ton of clichéd material. What? Sorry but my friends and former agent who’d read my work would strongly disagree, sir. Sorry you wasted your postage to share such a garbage take. Obviously, this particular agent just didn’t get the deepness of what I was conveying and decided to make stuff up to cover for his own intellectual shortcomings. As I dug through his notes, I realized the bastard who’d written these unkind things was…right on the money. Blessed (I guess) with years spent away from digging deeply into what I’d written, I realized the book was failing because it deserved to fail and the agent who’d represented me all those years ago had made a mistake in doing so. As for my friends, well, they were my friends and, thus, far more likely willing to look past major issues, keep reading, and focus on the positive than would a person with whom I had no affiliation.
With Skylar entering first grade and my younger daughter Alyssa thankfully developing typically, I said goodbye to special education advocacy (the money I made wasn’t commensurate with the time it consumed) and set about reinventing the book in a voice that wouldn’t be boring in the least—ten of them, to be exact—in first person perspective. Maintaining coherence, of course, would be a challenge, as I was taking on a literary task more absurdly overwhelming than attempting to cure my kid’s autism by following the lead of 90’s MTV game show hosts and doctors with questionable-at-best credentials.
The initial results of the revamped book— much like Skylar’s development for the few years that followed—were mixed and exhausting, even though I didn’t work on it with any type of consistency. She struggled for the most part at school and home. Meanwhile, nobody who read the updated, more ambitious version of my novel seemed to like it (versus almost everyone liking the lesser version years before).
I took yet another long hiatus from writing to accept a job as a day program director for almost a year and expanding my roles volunteering for everything under the sun. But, as chronicled in previous entries of this blog, my decreased presence in my older daughter’s life, even just as the point person to coordinate and advise, proved disastrous, and I had to leave the new job. Hey, at least maybe I didn’t suck so much as a Dad after all.
Unfortunately, continuing to suck as a writer was something else altogether. Even when I had bursts of effort with the book, I couldn’t figure out what I was trying to accomplish with it anymore. That’s when a conference with the slogan “Write More, Suck Less” caught my eye. It was the Southern California Writer’s Conference (SCWC) http://writersconference.com/sd/
in February of 2013. It was time to put up or shut up.
For those six months leading up to SCWC, I worked tirelessly to make my new version of the book much clearer and more focused on story than technique. I finally started getting positive feedback from readers again, though I still knew them all personally. I went to the conference nervous but confident and, by the time it ended, not only had the mostly positive feedback continued from fellow writers I’d never met but I also had a clue about how the book business worked for the first time. Best of all, I met some people I’m now honored to call friends and have had the thrill of watching them find success with their projects over the past several months.
I returned home on a mission. I spent the next year addressing issues in the book I’d learned of through feedback at the conference and then sending it out to a wide variety of readers (most of whom I didn’t know this time around). The praise continued by and large, so much so that I hired a professional editor with whom I have great chemistry. He’s helped me bring the book to the point where I feel as though it’s one draft away from being a viable candidate for representation and/or publication. I returned to the SCWC last weekend with high hopes for another great experience, hopes that took a big hit when I contracted food poisoning on day two.
When I wasn’t shivering and vomiting in my room while missing out on great workshops and seeing people I’d been looking forward to seeing again for a year, I moped. The food poisoning was the perfect symbol of my star-crossed journey with this book and as a writer. It didn’t matter how much I’d improved, how hard I’d worked, or how I’d shown courage to get my stuff in front of others—3,000 miles from home no less. There are no points for effort when it comes to publishing a novel. The book and my writing aspirations were doomed too.
I went on Facebook to leave a post on the SCWC page explaining my sudden disappearance, as walking from my room to tell people in-person in when I was so nauseous was risky (one unfortunate hotel trash barrel learned this firsthand). I was hardly a celebrity at the conference but enough people knew me there to probably at least wonder where the hell I’d disappeared to. Shortly thereafter, Skylar, as she’s apt to do, stole her mother’s phone and decided to also go on Facebook. In the process, she noticed my post. A few minutes later, I received the text in her inimitable style asking if I had thrown up.
Aside from the complete weirdness of the scenario, her text was normalcy personified—a daughter asking her father who was away on a trip if he was okay after finding out he’d taken ill. My spirits were bolstered immediately. Maybe my effort in trying to write hasn’t yet mattered from a publication standpoint but my efforts as a parent do matter. I realized right there that no matter what happens to my book, my writing odyssey has been a success. Skylar and I are connected. She’s not doomed to a life of solitude at all.