Catching my breath (part 1)

This post has been a long time coming, and it’s been really hard to write. (And it’s getting split into two posts, it turns out.)

Emerson’s version of it is, “I watched some TikToks and said, ‘Ohhh….’ I told my mom, and she said, ‘That’s all normal. Everyone does that.’ I showed her the TikToks, and she said, ‘Hmmm…’ We talked about it some more, and we both said, ‘OHHHHH…’”

This is my version:

For just about everyone on the planet, the last year and a half has been extraordinary. For most, it has been hard. We’ve all seen a lot of changes in our societies and ourselves. Some of these changes are subtle. Others are full-on, in-your-face transformations. No one is quite the same person they were in the beginning of 2020. So our pandemic experience has been nothing out of the ordinary. But also, it has been profoundly life-altering.

I didn’t write much during the past spring, because I sometimes felt like I had nothing new to say. But also, what was new was hard to wrap my head around. And hard to articulate. A lot seemed to happen during the first half of 2021, especially. I’m not talking about us finally being able to come to Mongolia, though that’s certainly a big deal. But before that and since, both of us have been engaged in some serious self-discovery. I guess that’s what happens when you finally have a chance to stop and think, and you’re not just reacting to one thing after another.

Our pandemic started out quiet enough, and I’ve already written about it several times, like this post from last summer. Initially, staying home most of the time suited our introvert selves. Canceling some of our travel plans was hard, especially a planned spring 2020 trip to visit friends and my uncle in the Midwest because I am not sure when I’ll see them again.

The school year felt doable, at least initially. We decided it made more sense for Emerson to go to their Mongolian school online, since we were hopeful we’d make it to Mongolia sometime in the fall. Their school day would be from 5 pm to 11 pm until the school went back to in-person classes in September, when it would go until 12:15 am. They were on a later sleep schedule (ended up sleeping from 3 am to 1 pm most of the school year, until we got to Mongolia in late May). The main problem with their schedule was that it was difficult to find time for homework because, although they were awake for around four hours after school ended, they didn’t have the mental energy to get work done between 11 pm and 3 am. So homework mostly happened before school started, with breaks to walk the dogs.

My teaching was manageable, until spring semester when I started teaching four classes online. For most of the semester, I felt like I was completely unraveling. For each course, we met once or twice a week over Zoom, and I recorded lectures for three of the courses as well (the fourth course was a public speaking course, and we met live for every class). Making sure everything was posted on time in the right place in Google Classroom (the platform we were using at my university since we lost access to Moodle in the summer of 2019) nearly did me in. I was impressed that I didn’t make many mistakes, like posting materials to the wrong course. But I found myself increasingly struggling with all types of work requiring organization, not just teaching but things like doing my taxes, managing our healthcare (we had to change insurance twice), and eventually organizing our move to Mongolia. And, increasingly, I noticed something was up with Emerson that needed more and more of my attention.

I feel like things were mostly stable until our winter break, but when school started up again in January, after a few weeks it was apparent something was off. Emerson was having increasing trouble controlling their frustration, especially at technology and teachers. At this point, they had been doing school online for nearly a year and were thoroughly sick of it. Their school made some adjustments to help students with being online, like shortening class periods from 85 minutes to an hour, having 15-minute breaks between classes, and extending the lunch break to an hour. The overall effect was to shorten the school day by an hour and ten minutes, which helped a lot.

But the amount of homework increased, because the teachers shifted work that would normally have been done in class to homework. In general, the teachers had little appreciation for the strain that learning online placed on the students. They would say things like, “You have so much more time now that you aren’t coming to school that you should have no problem getting your work done,” or, “Online school is so much easier that you should all be doing excellent work.” I’m not sure where this was coming from because it was evident that learning online was much more of a struggle. Emerson had only one teacher (out of eight) who openly acknowledged the difficulty of learning online and would regularly check in with the students to see how they were doing.

Emerson was managing, and sometimes doing very well, though they started missing an increasing number of homework assignments. Several things started happening that made me pay a lot more attention. There were some new things that were obvious. For one thing, they started developing tics. At first, just body tics like uncontrollable hand gestures and facial expressions. These would intensify during school but could happen any time.

Then came verbal tics as well. There were several sounds they would make involuntarily, “Woop!” being the most common one. But then they started with words. The most frequent one was “Shut up!” said in a much deeper than normal voice. Fortunately, they could stay muted most of the time in Zoom, but they were really worried that it would happen when they were unmuted. Hard to explain to a teacher, and one of their teachers had the habit of kicking students out of class when they were upset with them, which added to the stress. It would also happen in conversations with me, when we were walking the dogs or during our nightly walk for exercise, but it was easy for me to just ignore it. This wouldn’t be the case with people who weren’t aware of this development or who didn’t understand about verbal tics, so it was the cause of much anxiety for Emerson. On top of the verbal tics, a stutter that Emerson had had until about the age of five started up again, from repeating syllables to entire phrases or even short sentences.

Aside from the tics, Emerson also developed disordered eating. They would mainly forget to eat, sometimes for most of the day. During the winter break, we ate lunch and dinner together, so it was easy for them to regulate their eating, but once school started again, it became more difficult. I was on a more usual schedule, getting up at 5 or 6 am, and more or less keeping to normal meal times. Dinner was challenging on the days of the week when I was teaching from 5 to 8 pm, which shifted to 4 to 7 pm during the winter (Mongolia doesn’t change its time, so our schedule changed with the “fall back” and “spring forward” that the US still inflicts on its citizens). But feeding Emerson became more complicated because they would often have their first meal at 1 pm, and then eat something before school started, and try to wolf down dinner during their advisory class, the fifteen minutes before the lunch break. We used the lunch break, around 9 pm, to go walking so Emerson could get some exercise. Often I was asleep when they got out of school, so I tried to have things that were easy for them to prepare themselves if they wanted to eat after school. On the whole, it wasn’t ideal, and problems soon emerged.

First, I assumed that Emerson was capable of making their own breakfast or lunch, as I was at the age of 14; the only meal my mom prepared after she started working again when I was around 10 was dinner. Because of the pandemic, I was only grocery shopping every 10 days or so, but I would make sure to have a lot of Emerson’s favorite foods available. They had long had a pattern of becoming fixated on certain foods for several weeks or months, like apples and cheddar cheese, and then suddenly switching to something else, so it was a little tricky at times to follow their preferences. And what often happened was that they would eat one thing as a snack for a long time, so I would stock up on it, and as soon as I did, they would stop eating it. A lot of this was completely inexplicable to me, because I like a variety of foods and I will eat almost anything as long as it’s vegetarian. But not Emerson. They still eat most of the same foods that they did when they were five years old.

Anyway, it soon became apparent that Emerson would forget or wouldn’t be able to prepare their own food. They would open the refrigerator, look at what was inside, and then close it again and walk away. Same with the cupboard. I rearranged the kitchen to make an Emerson shelf in the cupboard and another in the fridge, so all their food was together, and that helped a bit, but I was soon having to remind them to eat after they got up and again before school started, so they wouldn’t crash during school. They weren’t able to eat much for “lunch” before our walk, so I started making them a salad to eat during advisory and then leaving a dinner out on the counter for them when I went to bed that they would eat after school. Things got a lot better once I figured out systems to keep them fed on their strange school schedule.

There was a lot more going on, but anyone who is neurodivergent or with neurodivergent kids might be recognizing some of this already. Around the same time, Emerson started sending me videos, Twitter threads, TikToks, and memes about ADHD. So much in them was recognizable. And, it turns out, not just in Emerson, but in myself. We started talking about ADHD, and they told me about a lot of things that they had been reading about that really resonated with their experience. And we started talking about all the things that they had been doing for much of their lives that, turns out, were common in people with ADHD and neurodivergent people generally. We had long speculated that my brother was autistic, but—and this is the real laugh—I thought Emerson and I were so similar, and I was “normal,” so they were “normal,” too. Right? Wrong.

We still have a lot of conversations about this word “normal” and what it means, and that “typical” is a much better word; finding the right language to talk about this has been one of my challenges. The kids have the language down; it’s how they talk about themselves and each other now. But it was all new to me. I thought I was neurotypical, because by the ripe old age of 54 no one had ever suggested to me that I wasn’t. By extension, I thought Emerson was also typical, and their issues with organization, emotional regulation, and everything else, were because they were a kid. Because so much of it was so familiar to me.

In the meanwhile, Emerson’s two closest friends from middle school had been diagnosed with ADHD, and one with autism as well. They had been doing a lot of chatting online and talking in person when we were in Carlsbad, and they had so much in common.

So, my conversations with Emerson shifted from, “But everyone does that (because I do it),” to “Maybe not everyone does that,” to “Holy crap, I think we both have ADHD.” This was about in late February, I think.

I started to try to figure out what to do about it, asked some friends who had had their kids evaluated, and even, during their annual check-up, asked Emerson’s new pediatrician about it. Boy was that a mistake, and it took us both a while to recover from that experience.

I had had to get us new health insurance when we moved from Carlsbad to Bermuda Dunes in December, and I ended up going with Kaiser Permanente, which I’d never had before. There was only one pediatrician nearby who was taking new patients, and we soon understood why. He was perhaps in his early 60s, very tall, extremely intimidating, and had absolutely no idea how to talk to a teenage “girl.” The exam itself was completely horrifying, and then when he asked if I had any concerns, and I said I was interested in getting Emerson evaluated for ADHD, he was incredibly dismissive. I could feel him thinking, “Here is another woman who read stuff online and thinks she understands something about her own child that can’t possibly be correct.” In the end, he gave me a lengthy questionnaire to fill out and have their teachers fill out (tricky, because Emerson had never met their teachers and they were in Mongolia), send to some office in Riverside, and maybe get some response at some point.

What I decided to do instead was to find someone local who could do an evaluation. I started looking online, but I wasn’t sure how much people would be doing in person because there was still a pandemic going on, but I found someone who returned my phone call, and we were able to schedule an initial consultation.

Our experience with this person was a total trip (our conclusion was that he went into educational psychology because he was neurodivergent himself), but we managed in the end to get Emerson evaluated, and myself as well. Getting a diagnosis was more important for Emerson because they are in school and it’s helpful for us and the school to know what is going on. I finally got their report right before we left for Mongolia and forwarded it to the school with only three weeks left in the school year.

There have been numerous times when I wanted to postpone our move to Mongolia because of all of this. It would have been nice to figure it all out earlier. In fact, years earlier. But that didn’t happen. And it took Emerson to really instigate the figuring out, because it all seemed “just the way things are” to me. It turns out this is fairly common, for girls and women to miss getting diagnosed with ADHD and other neurological differences. We don’t present the same way boys do, and we are better at masking. I grew up before AHDH was a thing, as well, and despite my experience with neurodivergent students at UCSD, I didn’t apply what I knew to myself or my own kid.

In the end, we decided to go to Mongolia, anyway. We both reasoned that things would be better for Emerson once we got here (that has been correct). Also, Emerson doesn’t need medication, so we didn’t have to figure all that out, which can take months. I can help them with a lot of the coping mechanisms I have used over the years. In fact, my masking is so good that when I tell even my closest friends that I have ADHD, they don’t believe me. Some are dismissive of the diagnosis (and there can be good reason to be), and some say, “But you got a PhD!” as if that is proof that I am typical. Some of the most neurodivergent people I know are in academia. Really.

Not that masking is a solution. Trying to appear “normal” takes an immense toll on me emotionally and even physically. But for decades of my life, I thought everyone else had these experiences too, that this was just what life was like for everyone. I am not sure how much knowing what I now know about myself changes things. I’ll figure that out. For now, it just explains a lot. And it explains a lot about my experience raising Emerson, as well. A lot of the coping skills I have developed are useful in navigating the world, so Emerson and I talk a lot about what we are both experiencing and how we can handle it. And they may well have things going on with them that are very different from how my brain works. We talk about that, too.

Well, this post has gone on long enough. There’s more, but I’ll continue with part two later, when I’ve recovered from writing this. Despite my matter-of-fact tone here, this still requires a lot of energy for me to think about, and it turns out, to write about. On the one hand, it makes incredible sense, and it is who we are, and that hasn’t changed. On the other, it makes the future seem quite different, especially for Emerson. I guess we’ll find out.