Seeking structured, regular activities for my son, an 18-year-old with disorganized-type schizophrenia who is freshly recovering from his second psychotic episode. We are in the Cambridge, Massachusetts area. Special snowflake details inside.
My son is eighteen and has been diagnosed with disorganized-type schizophrenia. He was released today from a three-week stay at Cambridge Hospital's Adolescent Assessment Unit, his second such stay there after psychotic breaks. He's started taking medication (risperidone), and has agreed to follow the road towards recovery via medicine-compliance, keeping appointments with his doctors (via the On-Track Program at McLean Hospital), and structured schedules and activities
. Tomorrow morning, he has an intake appointment for a partial-hospitalization program at the Woburn Center, which he will likely be attending for the next 7-10 days. If he's stable enough after that, he will probably attend another day-program at McLean. After that, however, we don't have anything solid lined up for any gaps between those two programs or beyond, and only one enticing lead.
After his first hospitalization, this lack of structured activities was his downfall. For a few months, he fostered a good relationship with a psychiatry resident at Cambridge Hospital, who provided both psychopharmacology and CBT services, and he kept all of his appointments with her. During that time, though, he fought against anything structured, and anything smacking of therapy. He also refused to enroll with the Massachusetts Department of Mental Health, and scoffed at anything that sounded like a "program", be it vocational, educational, volunteering, etc. His main activity at the time, non-structured and self-directed, was to hang out at a local art gallery collective.
Once his psych resident moved on, his next doctor, via McLean Hospital's On-Track program, provided psychopharmacology but not therapy, and my son refused to see his assigned therapist. It was during this time (I discovered much too late) that he also stopped taking his medicine, and stopped hanging out (or overstayed his welcome) at the art gallery. The next few months saw a gradual decline in his mental health until, over the holidays, the wheels fell off the cart, he dove into psychosis, and had to be hospitalized again, eight months after the first hospital stay.
So now he's out, on a steady regimen of risperidone, and he's fully agreed this time that it would be in his own best interests to be more a more active and thorough participant in his recovery. However, as the meds haven't yet fully kicked in, he's still pretty sick: he's paranoid about being on "the grid" or "in the system", so he refuses (as he did last time) to enroll with the DMH or MassRehab; he's delusional -- one of his goals for recovery is "to be able to transmit thoughts"; and his thoughts remain very disorganized, so that while he has ideas that he'd like to explore, either conversationally or regarding his rehabilitation, he cannot express these ideas in a linear fashion. Given this current state, I'm glad that he's still willing to go along with what I and his team at McLean suggest. (The director of the On-Track program assured me today that, if necessary, we could re-admit him as an inpatient at McLean.)
At home, I am trying to start a structured regime of regular things -- e.g. meds at a fixed time nightly, dinner together on a regular basis, a specific chore to perform for every evening of the week -- and I've turned our kitchen whiteboard into a weekly planner. The rule, though, is that after the day program in Woburn ends, he has to be doing anything recovery-oriented, structured, and out-in-the-community around other people. I'd like to present him with a field of choices, and he has agreed that he will pick one and stick with it. So that's what I'm asking from you, hivemind: suggestions for recovery-oriented activities that don't require being on the DMH's roster.
One good example of something he is enthusiastic about: the Recovery Education Program via Boston University's Center for Psychiatric Rehabilitation
. I've briefed him on what they offer, and I've spoken with the coordinator of the program, who says there are indeed openings, and that the only requirement beyond filling out the application is the desire to use education as a tool for recovery; it doesn't matter what stage of recovery they are in. So we're definitely going to enroll him, but the next trimester of classes doesn't start until May.
So I am looking for things to fill in the gap from March through May, and beyond, even after he enrolls at the BU program. To give you more of an idea of how he's thinking, his own ideal notion of recovery involves him holing up in his room reading books during every waking moment -- we've made clear to him that this is not going to happen, though he can read as much as he'd like in the hours that he's not doing that other-something. His overarching goal for his recovery, as far as he can articulate, is to learn as much as he can, to make connections with like-minded people with or without mental illnesses, to further his education, and in doing so, to gain power and control over his own life. (He's a high school graduate, and has been accepted into a college, but is deferring his acceptance until at least Spring or Fall 2015. He's not sure he wants to attend college at all, but does want to take individual courses.)
His interests: music (listening and playing; self-taught on piano and guitar), philosophy and metaphysics, reading, low-level chess, some gaming
A couple of things he rejected last time he was recovering:
, a walk-in center in Arlington designed to help young adults transition into independent living. (Independent living doesn't seem to be on his current agenda.)
• Young Adult Vocational Program
, a clubhouse/vocational skills building center (which requires DMH enrollment).
One thing that looks interesting but may be out of the question: Tunefoolery
-- maybe not an option because they require 30 minutes of music to be presented at an audition, whereas my son is mostly a stream-of-consciousness, improvisational musician, having no set pieces of pre-written music he can play. However, I know he likes playing music with other people, and that playing music has good therapeutic value.
Things to take into account: he squirms against anything touchy-feely, smacking of therapy, or "programmatic" -- though that last one, I think, he's willing to accept if he's attracted to the content of the program.
(As for myself, I'm doing a good job taking care of myself, exercising, remaining calm, attending support groups via NAMI, and I have supportive people in my home and work lives. His mother is out of the picture and I am not looking for generalized advice about this, just specific suggestions.)