My intention in writing these posts is to share the experiences that I went through with my son, starting with the first manifestation of his illness and our journey through numerous subsequent episodes. It’s also to provide commentary as a parent and psychiatrist on issues that these experiences bring up, such as how the diagnostic process works in mental health, and how to work with treatment providers and medication issues. My hope is that reading this may be helpful for people with mental health issues and also their families and friends.
During the spring term my son started his courses but was very concerned about doing his daily meditation and martial arts exercises, believing that these would eventually bring him perfect health and longevity. Every morning he demanded complete silence while he went through his morning routine. He woke up at a specific time followed by water and tea followed by the beginning of meditation. Breakfast was eaten later, after a specific time interval had elapsed. He became frustrated if there was any noise or other interruption. He attempted to attend classes; however, he was vague about what time he went and how long he stayed. I called a professor I knew, whose course Bill was taking, to check on him:
“How’s he doing in class?”
“When he attends it’s only for the first 10 minutes but often he’s not in class at all.”
“I’m really sorry,” I said. “I’ll see what I can do.”
I was embarrassed that my son wasn’t putting in the effort, but in retrospect he was probably doing the best he could. Without the ability to focus his attention it didn’t matter how intelligent or inherently motivated he was; he was left floating in a shallow pond of his free associations as his mind wandered from topic to topic. I became increasingly worried about his ability to function as a student under these circumstances. He was still quite sedated from the medicines for most of the morning and had trouble concentrating even when he wasn’t sedated. Although he said he didn’t think he had a problem listening to the professors’ lectures, it seemed clear that he wasn’t able to focus for more than a few minutes at a time.
And then suddenly a new opportunity opened up: I had called the Director of Student Health to talk with her about Bill’s problems and specifically to ask if she had recommendations for a therapist in Student Health who could work with Bill about accepting his illness as a long-term illness and to support him as he struggled to become an effective student again. After talking with me about therapy services, the director said, “Well, you do know about the Disability Office, don’t you?” I replied that actually I didn’t and she explained that the university—and all major universities—now had federally mandated programs to support students with documented disabilities through their studies. Bill would need a letter from his psychiatrist stating his diagnosis, what his course of illness had been, differential diagnoses (what other illnesses could cause this), treatment plan, medication and dosage details, and what kinds of support were recommended. Supports could include tutoring, access to notes for classes he had missed (taken by a student note taker), flexibility in exam dates, and time flexibility on exams. I quickly emailed his psychiatrist, and then I scheduled an appointment with the Disability Office for Bill and me. I felt a flicker of hope for the first time in a long time.
The Disability Office
We arrived at the Gothic-inspired brick building housing the disability office, we were ushered into an office with college techno-modern furniture. The office director explained that their servies had been very helpful for a number of students who had mental as well as physical disabilities. She explained that in order to be enrolled in the program she would need to receive a detailed letter from Bill’s psychiatrist explaining his diagnosis, a history of his illness, how it affected him as a student, his current treatment plan, and recommendations for services that might help him. She reassured Bill that all interactions with the office were confidential and explained that the procedure they had worked out with professors was that students handed them an envelope that had their name, the type of flexibility that was needed—for example, longer time on exams—and contact information for the Disability Office. Bill didn’t say much so I asked questions, like what different kinds of flexibility were possible on exams; who were the people who provided class notes; and did they provide any makeup tutoring for students who needed extra help.
When Bill heard that there would be help available he became noticeably more animated. He asked who the tutors were and how he could get in touch with them. He asked if the class notes went all the way back to the beginning of the term when he hadn’t attended classes.
Bill was due to take his first exams of the term but had not been studying or going to class. The Disability Office had made arrangements to find notes from other students to provide him with their notes from classes to date and, moving forward, to have student note takers in Bill’s courses so that he could review the notes to get a more coherent and organized set than he was able to take himself.
The concept of disability involves an ongoing dysfunction of either mental or physical capacity. Typical, for example, and common are students with attention deficit disorder (ADD) who may have difficulty concentrating and may be dyslexic more commonly than in the general population. In this framework there needed to be ongoing evidence of deficit.
In Bill’s case, he clearly had a great deal of difficulty keeping his attention focused while he studied due to the instability of his mood and the associated symptoms. He would become restless and pace the room or he would become preoccupied with how his body looked or functioned: Mom, how does my posture look? No, I don’t just mean does it look OK; I mean does it look better than a couple of months ago? Do you see how I look stronger?
He would throw out his chest, suck in his stomach, and assume a crouched martial arts stance. Asked about his previous beliefs in immortality and perfect health he was willing to concede that this might have been overblown. He stated that he was now interested in achieving the best posture, the best health, and the best energy flow possible, but that he did not think it was possible to live forever or achieve perfect health. He was precariously balanced, with some evidence of mild hypomania (concerned with an overblown concept of his abilities and physical health, increased distractibility, restlessness) but still able to focus with assistance. He worked hard at learning the material he had missed. Having a disability requiring accommodation is different from but adjacent to the concept of being permanently disabled, which Bill was later declared, after many hospitalizations and struggles to keep a job.
