This piece originally appeared in:
Ps and Q: Parenting, Productivity and Quarantine, September 16, 2020
I have been writing this blog for a LONG time. As I’ve said many times along the way, I’m doing it for a few reasons. One reason is that I do want to capture a slice of what this time was like. My tendency is to remember things in broad strokes with little specific memories along the way. By writing about the experience of living and working in relative quarantine during this time of pandemic, I am getting down to a deeper level. I want to be able to share the experiences of this time with my kids someday, and I feel like this is one way to do it.
I also did it as a challenge to myself. I wanted to grow as a person and a writer, and I dared myself to keep this up. There are lots of days I don’t want to do this. More than I ever imply here. But I don’t want to flinch and crack on that dare to myself. I want to build a writing habit, and I have had some success in that. I also wanted to be more honest as a writer. So I have written about my experiences, my feelings, my frustrations and fears. Baby steps, yes, but progress.
That said, there is a lot of the story I have not been telling and I am perhaps not crushing that “honesty” goal. I want to start to change that dynamic today. It strikes me now that, in terms of an author/reader interaction, this would like being halfway through reading The Odyssey, and Homer suddenly writing, “Oh, did I mention that Odysseus has been on fire this whole time? I know he’s had all these otherworldly challenges and struggles, but he’s also literally been in flames while doing it. Wasn’t sure whether to mention it or not, but FYI. Anyway, the Cyclops!”
Like all families, ours has had plenty of obstacles this year. But there is an added dimension for us. Let’s go all the way back to Day 43. In that day’s post, I made some jokes about being old and having back pain, referenced the Monkees, and made one of my many “just another day” posts. Except it wasn’t just another day.
I still remember writing that post, feeling torn and broken inside because of news I had gotten but didn’t know how to talk about. That was the day that Erin and I got the news that Henry was diagnosed with autism spectrum disorder.
Henry has always been unique. I still have a distinct recollection of our first night together in the hospital. It was late at night, Erin was resting and I was spending time with my newborn son. He was a little agitated, and I could not soothe him. I used all the tricks that worked so well with Amelia, but nothing worked.
His first year gave Erin and I PTSD. He would scream for hours, he wouldn’t sleep, there seemed to be one issue after another. We saw doctor after doctor and specialist after specialist. Henry always seemed to defy explanation. One theory back then was that he had acid reflux, though even that was more a guess than anything.
After he reached a year old, he did seem to level out. He calmed down, the screaming, sleepless nights got better, but we still had our struggles. He crawled and walked quickly, he was always extremely clever and mischievous. He was always impatient and on the move. His pediatrician theorized that he just didn’t like being a baby. He was also speech delayed and we had some concerns, so we got him involved with a great early intervention program through the state of Colorado where he got speech therapy and occupational therapy until age 3.
He made good progress, but when he reached 3, we had to stop. Without further diagnosis, we couldn’t get insurance support for more therapy, and at that time we didn’t have particular concern for autism. Henry likes to defy definition. He communicates, he makes eye contact, he does a lot of things that would imply everything is fine. But in preschool, he always played more alongside with other kids than truly with other kids. There were always little flags that kept us wondering.
Last fall, we talked to a few of our doctors who suggested maybe we get him screened for autism. If he did get a diagnosis, the thinking went, at least we’d get insurance to help cover therapy. The waiting list to get screened could be as far as a year out, so we figured we might as well get in line. In all that time, it was always up and down. Sometimes there would be stretches where he’d seem just fine, and we thought he’d turned a corner. But then he’d regress and have us wondering again.
Then COVID came. He had been doing really well in preschool, and actually engaging more with his classmates, but we had to pull him out. It broke our hearts, but we knew the kids had each other, and that definitely helped.
We suddenly found ourselves able to move up the line a little for that autism screening through Children’s Hospital because we were willing to do the screening through telehealth. We spent several hours talking with a specialist, who listened intently and also observed Henry a little.
As we went through the process, answered tons of questions and relived so many moments, I remember having feelings in both directions. On one side of things, the kinds of questions being asked made me think maybe he wasn’t on the spectrum. He can, after all, communicate well and he has lots of skills that impressed the screener.
On the other hand, there were certain tells along the way that did start to make it feel like there was something here. His repetition and inability to move on from something he wants. The way he constantly pinches my hand and arm when he is trying to soothe himself, and other sensory cues we’ve picked up on.
We ended the nearly 3-hour session and scheduled a follow up a few weeks later, where we’d get the results of the assessment. At that point, I think we kind of left it to fate and didn’t know how to feel. With Henry, so often we’d meet with doctors and get him tested for this and that convinced we’d get an answer, but we have become pretty accustomed to inconclusive results. Like I said earlier, Henry has always strongly defied definition.
Then came April 27. Day 43 of this blog. That was the day we got the diagnosis. Henry is level 2 Autism Spectrum Disorder (ASD). The definitions are a little muddy, and the spectrum today covers a wider range of issues than it did in the past. But what we have basically been told is that he is high functioning, but needs support in certain social, behavioral and sensory areas.
It was a heavy dose of news, and it was only the beginning. We had a lot to learn about ASD, about what resources could be available, what insurance can and can’t do, and lots more. And all of this while the world was shut down in a terrifying pandemic, all of us cooped up together, and uncertainty all around. We were stressed out already, and I would be lying if I said this timing didn’t make everything feel even scarier.
So all of this has been in the background of everything I’ve written for the past 140 or so days. Admittedly, this stretches that “honesty” pledge I made for my writing. I would say a few things in my defense there. First of all, when I started this in March, I would not have seen this coming. Secondly, I would have expected this blog would have ended before the end of April. And third, to borrow a thought from Mr. Spock, this wasn’t so much a lie as it was an omission.
But seriously, it has taken a lot of time to properly come to grips with this diagnosis. Our first instinct was to keep this among ourselves and close family only. We know there can be stigma attached to this label, and we didn’t want Henry to have to deal with that. So we decided to fight the fight quietly, and I made the choice to walk around it in this blog. That has been exceedingly difficult. I’ll get more into that in part two of this post, which I will write and share in the coming days..
A few weeks ago, however, Erin and I had a conversation about this and came to the conclusion that we are in fact probably doing Henry a disservice by not talking about it. This is not something we are ashamed of. It is not something he should be ashamed of. It isn’t something anyone anywhere with ASD should feel any negative feelings about. It is simply part of who our son is. And it is just one part of a much larger whole. Henry is neurodiverse and simply processes things differently than others of us do. We are doing our best to better understand him and help him better understand us.
I know that there are plenty of parents out there with kids on the spectrum or working through other challenges. Parenting is never an easy path, and we all face our own obstacles along the way. I want to be honest about the ones we have to contend with. This is the beginning of that journey.
Henry is an amazing little boy. He is incredibly funny, smart, clever, deeply caring, passionate and strong. I believe his hyper focus and unrelenting willpower will serve him very well in the future. We just want to do everything we can to help him channel his strenghts and support him in being his very best and happiest self.
As a nerd who grew up reading comic books, I know that oftentimes the heroes with the greatest powers also face the greatest challenges. Henry absolutely has incredible abilities and will do great things. He makes us proud. We are at the beginning of a long path. It’s already had plenty of twists and turns, but Henry is worth every moment of it.
