In A Stormy Sea

I should start this story by telling you, right away, that I am autistic. Autism frequently comes with side orders of depression and anxiety, and this is definitely true for me. I was first diagnosed with anxiety and depression when I was 20 years old. But realistically, I am certain I had lived with these conditions since early childhood.

I coped, though. I took my medication. Sometimes I would think I was doing great, and I would try to wean myself off of my medication. Other times, I was unable to access my medication due to financial reasons. I had my bad weeks. I had my meltdowns. But I always landed on my feet.

In 2020, I was just one of billions of people in the world whose life was upended by Covid. At the time, I had just started working as a child care teacher in a small, tight-knit center. I had adorable children in my classroom, co-workers I loved, and an amazing boss.

Then Covid came. The center tried to stay open, but most of the parents were keeping their kids home. I was laid off. Six weeks later, we were all told that my center would not be reopening at all. But by the end of the summer, the organization that ran the center had decided to reopen it after all. I returned to the job I loved, only to be told, not even three months later, that the center was shutting down again. This time, the closure was permanent.

Not to be deterred, I applied for other child care teaching positions. I quickly scored a position at a local nonprofit organization that served at-risk children and low-income families. I was excited to be working at a place where I felt like I could make a real difference in the world.

The thing about me is, when I am excited about something, I go all-in. I loved teaching. I took every professional development course that was offered, read books and blogs, and collected books and other materials to use for my classroom. I wanted to be an incredible teacher. I was interested in learning about Conscious Discipline, which I thought went perfectly with my teaching style. I wanted to expose my children to music, give them opportunities to do process art, and teach them about emotional skills and kindness. I spent my own money to buy art and learning supplies, just because I strongly wanted the children to have them, and buying them myself was ten times faster than requesting them from the organization. I even got Facebook friends to pitch in so that I could supply every single child with their brand new Scholastic book each month.

But the center was short staffed. Many of the children had severe behavioral problems. The organization did not have the resources to offer them anything therapeutic. Often, I could not even facilitate the activities I stayed up late at night to prepare. The best I could hope for was to supervise the children and stop them from hurting each other.

In April I was asked to take over a classroom of 2 and 3 year olds that didn’t have a teacher. The previous teacher had quit suddenly, and the classroom was being run by an assistant. I researched themes and activity ideas for younger children, and moved into the classroom with high hopes.

Instead, I found myself in a situation that I couldn’t handle.

The center was more short-staffed than ever, with teachers and assistants quitting every day. The assistant who had been running the classroom after the teacher left was almost always pulled out to help in larger classrooms that were short-staffed. Other days, she was unable to work because her baby was ill and needed to be cared for.

I found myself trying to wrangle eight wild toddlers. They needed so much more physical care than the slightly older children I’d worked with before. Some were potty training, and others still wore diapers. One time I was in the bathroom changing a child’s diaper, and two toddlers ran out the back door. One child, who was physically larger than the others, would randomly walk up to others and shove them to the ground. When I’d be comforting the injured child, she’d shove someone else, or hit someone over the head with a block, or just run around grabbing objects off shelves and throwing them. At nap time, several of the children would not stay on their cots, but would run around playing and yelling, keeping the others awake.

A child who had previously been potty trained started having accidents. She would refuse to sit on the toilet, and then would later wet her pants. The classroom was so busy that I didn’t always notice that the child’s pants were wet. Her mother complained to the director, and I felt inadequate. (Later I learned that the mother was not complaining about me, but about the situation I’d been put in, which she felt made it nearly impossible to care for all of the children.)

On one memorable day, some of my children were absent, so the director filled in their spots with children from another classroom where there was no teacher. (This was strangely common at this particular center.) One of the children had significant behavioral challenges. He ran around grabbing things off the wall, throwing toys, hitting other children, and climbing on tables. At one point a two-year-old walked up to me, and I noticed that her head was bleeding. I hadn’t even seen it happen.

There were several times where I texted the director, saying things like, “I need help,” or “It’s not going well in here.” The director would come in, try to settle things down a little, and then leave.

When the assistant was there, though, I was uncomfortable. In the absence of the previous teacher, she had ruled the classroom with an iron fist. She took pride in being stern, and criticized me for being too gentle with the children. (I was reluctant to raise my voice with them, and instead used the methods I had learned in my child care and education classes. Admittedly, my kinder, gentler methods didn’t seem to work well with these kids.) She would often mutter things like, “This didn’t happen when I was in charge,” and “I had them under control before you came.” I tried to speak with the director about my concerns, but she told me that I needed to talk to the assistant myself… and even hinted that I was being a little racist. (The assistant was African American.)

While all this was happening, I was supposed to be submitting lesson plans two weeks in advance, as well as keeping extensive data on each child’s progress. I rarely had time to sit down at the computer without a child in my lap, so my lesson plans and progress notes were consistently late.

I was not being anything like the incredible teacher I wanted to be. My classroom was not a pleasant place. I was failing. It got to the point where I was having panic attacks every day in the car before I went into the building. Then, I started waking up in mid panic attack every morning. Anxiety was my constant companion. A few times I had anxiety attacks in the classroom, bawling silently behind my mask in the darkened classroom at nap time. I missed days of work because my anxiety manifested in physical symptoms.

I blamed my autism. Being autistic meant that I often had trouble regulating my emotions, and that I struggled with multi-tasking and time management. I decided to request accommodations. I sent a very friendly and professional letter to the director and to the HR person, explaining the accommodations I thought would help me, and how my performance would improve. The accommodations I asked for were to have an assistant in my classroom most of the time, and to have designated time for lesson planning and progress monitoring. The director told me I would need to have my doctor fill out a form explaining why I needed accommodations.

This, in itself, was a problem. I didn’t really have a physician or a mental health provider. I had gone in the past to a physician, but she had left the practice, and I’d never really established care with another physician. Usually when I was sick, I just saw whoever was available. When I needed my depression meds refilled, I would just put in a request through the medical center’s online portal, and the refill would magically appear in the pharmacy. And because I had never found “talk therapy” particularly helpful… plus it was often expensive even with insurance… I had stopped going to a therapist years ago.

I figured I would find a way, though. I would go to the medical center, ask them to assign me a doctor, and hope that the doctor could get enough information from my past medical files to fill out the accommodation request paperwork. It would be okay. I would solve this problem, and find a way to get back to being the wonderful teacher I wanted to be.

And then my dog died.

Lily was not just any dog. She was my service dog, trained to help me when I was having anxiety and depression symptoms. I had known her since she was born, as she had been part of an accidental litter created by my friend’s two dogs. I had trained her myself. I’d never brought her to work with me, because when she was around I had a hard time focusing on anything but her. But outside of work, she was always with me. She kept me steady. We had a very special bond. She was my world.

She had just turned 12 years old, and she was taking daily medicine for Cushing’s Disease, but the veterinarian had told me that with medication she could live several more years. So I did not see it coming when one day I went home and found her struggling to breathe. By the time I got her to the emergency veterinary clinic, 21 minutes away, she was already gone.

My world ended. Grief, piled on top of the depression and anxiety I had been dealing with already, brought me to my knees. I had never felt this much pain.

My family let the director know that I would need a few days off. She was sympathetic. But the following week, I still couldn’t fathom going into work.

I had heard about a local psychiatric hospital, and I told my family I wanted to go there. They agreed that it was a good idea. I went to the hospital, got an assessment, and was admitted to the Partial Hospitalization Program. This was a program that provided all of the therapy and services of an inpatient hospital, but I could attend during the day and go home in the afternoons. Unless a patient was actively suicidal, this hospital usually recommended that people start with the Partial Hospitalization Program. My insurance would cover most of it. I hadn’t yet reached my deductible, so my family pitched in $4,000 for me to attend.

I started going to the program the next day. Right away, I started to feel a difference. Just being there, in that circle of people, led by a therapist, felt safe. I was a wreck. I sat in my seat, clutching a ragged teddy bear that I had adorned with Lily’s collar, and rocking back and forth. But instead of confused stares and eye rolls, which I was used to seeing whenever I acted too ”autistic,” I was met with gentle smiles and whispers of “Glad you’re here!”

Each morning we would fill in a “check in” sheet indicating how we were feeling, whether we were safe from suicidal impulses, and whether anything stressful had happened in the past 24 hours. We would go around the circle and share our check-ins with the group. Then, for part of the time, we would do “processing.” This meant that anyone who wanted to could talk to the group about something that they were struggling with. The rest of us, along with the therapist, would offer feedback and support. The members of the group were very open and genuine, baring their souls fearlessly. We had nothing left to lose. We just wanted to feel better, to be better. After processing was finished, we would usually spend the rest of the time learning. Sometimes we’d learn about how our brains and bodies worked. Other times we would learn a skill, such as a way to regulate our emotions, or a way to cope with stress.

I felt so safe there. I felt as if I had climbed aboard a life raft in the middle of a stormy sea.

The HR person at my work let my family know that, if I wanted to keep my insurance, I needed to come back to work. I could work as few as thirty hours per week, but my body needed to be in that building whether I was ready or not.

I panicked every time I even thought about going back to work. Just talking about it would make me start to hyperventilate. Part of the reason was because my brain still felt as if something inside of it had exploded. If my job had been to sit at a desk and answer phones or enter information into a computer, perhaps I could have dragged myself in for the minimal amount of time. But how could I be in charge of a room full of small, unruly children when I felt like this? They needed me to be all the way there. They would not be able to wait calmly if I felt an anxiety attack coming on, or if I was overwhelmed with a wave of grief or depression.

My aunt convinced me to try going back for just three hours a day, after I attended PHP. The next week, I would be expected to work five hours a day, and then six. The hospital had a second “step down” program that was only three days a week instead of five, so once I finished PHP I would feasibly be able to work eight hour days twice a week when I wasn’t at the hospital.

I tried it. I went twice. Both days, I couldn’t concentrate at all during PHP. I rocked in my chair as if there were a motor inside me, scratching my arms subconsciously and yanking at my hair. My body was exhausted but I couldn’t stop moving. My therapists would help me calm down a little, coaching me to use my coping skills. I would drive to work, then call my mom from inside my car, and she would try to help me calm down as well. Once I was calm enough to go in, I would report to my classroom... But I didn’t feel like myself. My brain felt thick and foggy, like I had taken Benadryl. I tried to interact with the children, but my voice was robotic.

I was happy to see the children. I loved them. Only, something was missing inside of me. Something wasn’t right.

I asked the HR person about FMLA. She said I didn’t qualify because I hadn’t been there for a full year yet, but I might qualify for a state program called Paid Family Medical Leave. This program did not require a person to have worked at the same place for as many hours, as long as they had worked for a total of at least 800 hours in the past 12 months. I would just need my doctor to fill out the paperwork saying that I had a serious medical condition.

The next day, I spoke with my doctor at the hospital, and he readily agreed to fill out the paperwork. He wrote on the paper that my depression and anxiety were chronic, effecting every area of my life. I submitted it to the state. Unlike FMLA, the state would have to approve or deny it, rather than my employer. If approved, I would get 12 to 16 weeks off for recovery time.

I emailed the HR person, sent them a copy of the paperwork, and let them know that my Paid Family Medical Leave was pending. She wanted to know when I would return to work.

At this point, I had just finished my two week Partial Hospitalization Program stint. I was ready to move down to Intensive Outpatient, which meant I would only be at the program for three days a week, rather than five. This did not mean that I was completely well and able to function on the two days that I didn’t go there. The two days were meant to be a trial run, for patients to practice using their skills and coping mechanisms without the support of the therapist and the other group members. A person could stay on Intensive Outpatient for six to eight weeks, or longer. They could also move back up to Partial Hospitalization if it turned out that they still needed more support.

So, I didn’t know an exact date that I would be ready to return to work. I sent the HR person an email explaining this. I could be ready to return in six weeks, but I wasn’t able to guarantee it, I said. I didn’t want to make a promise and then be unable to keep it. I tried putting it into another perspective: If I were being treated for cancer, would I know exactly what day I would be healthy again?

The HR person shot back an email that said, “We are sorry you are having a hard time, but we can’t hold your position forever. Your employment is terminated as of today, and your insurance is no longer active as of right now.”

When I read the email, we were on a ten minute break between groups. My jaw fell, and my stomach sank. I didn’t know how to feel. I went back to the group and said, “I just got fired! And I lost my insurance!”

My therapist assured me that things would be okay. I could apply for Medicaid, and it would be activated immediately. Someone from the hospital’s business office gave me the number to call.

Here is where things get a little confusing. Washington has several different programs under the heading of Medicaid. The benefits for each are slightly different, and doctors and medical centers decide which they want to accept. Some accept all of the programs, and some accept just one. My hospital only accepted Community Health Plan of Washington. I was told to ask for this specific plan so that I could continue my treatment there.

Years earlier, when I had been working at a job that didn’t provide insurance, I had been enrolled in Molina. I had chosen it randomly. Now, when I called the number, the Medicaid person said that they could put me on Community Health Plan of Washington. It would not be a problem at all, they told me.

To my surprise, the next day I was called into the business office. They told me that they couldn’t accept my Medicaid because it was Molina. When I called the state Medicaid office again, I was told that I had been automatically assigned to Molina because I had had it before. It would be switched to Community Health Plan of Washington, but not until the following month. Why? Because the cut off date for changing your insurance was the 29th of the month. If I had wanted my insurance switched for the month of July, I would have had to call by June 29.

I had been fired, and lost my insurance, on June 30.

One of my therapists had an idea. She had me designate her as a Temporary Health Representative, so that she could talk to the people from the Medicaid office. She explained to them that I had been in this hospital for almost three weeks, and that it would be very difficult and harmful for me to have to start all over in a different program, with different therapists and group members. So much of group therapy was dependent on that relationship and feeling of trust that we established.

Unfortunately, the Health Authority people said there was nothing they could do.

I was devastated. I curled up in a chair in the lobby of the hospital, feeling distraught. My life boat had just been capsized, and I had been dumped into the stormy ocean without a life jacket.

The therapists refused to discharge me just yet. They wouldn’t take “no” for an answer. Because I was without insurance, the business office said I wasn’t allowed to attend group. But because I wasn’t officially discharged, my therapists didn’t want to send me away. So for the next three days, I sat in the lobby.

It was strange. I was there, but not really there. I arrived when the other group members arrived, but I didn’t go to group. Instead, I amused myself in the lobby. The receptionist printed off coloring sheets for me, and I colored them in with the gel pens I used to use to do the check-ins and worksheets in group. During breaks, the others would come out and sit with me, or I would trail along with them as they went outside to smoke. Lunch was ordered for me, and I ate with my friends. I actually stayed longer than usual, as my therapists were still actively trying to find a way to not discharge me.

At first, my therapists questioned whether it was even legal for me to be fired while I was being treated in a hospital. We discovered that it was legal, because I hadn’t been there for a full year. If I had been there a year, my employer would have had to let me keep my insurance while I was being treated. They wouldn’t have had to hold my specific position, but they would have been required to offer me a similar position when I returned. While it was legal for them to fire me and terminate my insurance now, my therapists agreed that it was definitely unethical.

They tried convincing my insurance company through my former employer to extend my coverage for a month. The company refused. They tried to get Molina to cover me to stay at the hospital for a month. Molina ignored them.

On Monday, when I arrived at the hospital, prepared to spend another day coloring and playing games on my phone while I waited for my fate to be determined, the program nurse approached me. “It’s ridiculous for you to be sitting here,” she said. “Go to group with the others, so you can at least be getting your therapy while you can.“

”Are you sure?” I asked, afraid of being ejected from the room once I got there.

“If I’m wrong, I’ll be ashamed,” she said.

So I went to the room where the group had already started. I tiptoed in, and sat perfectly still on an empty chair, afraid of capsizing my life boat again. The others smiled at me and whispered, “Glad you’re back!” And I was allowed one more day of therapy.

It didn’t last.

Every option had been explored, and exhausted. After group, the therapists sadly told me that I had to be discharged. I tried hard not to cry as I waited for them to fill out the paperwork.

Usually, when someone finished both the Partial Hospitalization Program and the Intensive Outpatient Program, we did a graduation activity. Everyone else in the group was given three index cards. On each card, they would write something positive, something they admired about the person who was leaving. The person would read them aloud, and then hopefully keep them forever, to pull out and look at whenever the sea became stormy again. Since everyone had been hoping that I would not be discharged without finishing Intensive Outpatient, the therapists had not had the group make cards for me.

I stood there, clutching my teddy bear with my dog’s collar on it, doing my deep breathing exercises and keeping myself calm.

One of my therapists said, “I’ll have the group write their cards for you on Thursday, and I can mail them to you. Would that be okay?”

I burst into tears.

I’m alone now. I don’t have a job. I don’t have a service dog. I don’t have a hospital program. I don’t have a doctor or a therapist. I have a referral for a different hospital with a Partial Hospitalization Program, but when I called them, they said someone will call me back within five days and they may or may not have room for me. Plus, that program is still doing all of their groups on Zoom because of Covid, as they feel that making patients wear masks takes away from the group process. I really struggle with Zoom. I feel like I’m watching twenty TVs at once, and I can’t keep track of everything and everyone on them. If I manage to get accepted into the program, I’ll give it a try, but I’m afraid that I just won’t get much out of it. It will feel like we’re on twenty different life boats in twenty different oceans, instead of all being in one boat together.

So for now, I’m alone, in the stormy sea, once again.