Recovery Programs For My Reluctant 18-Year-Old Schizophrenic Son
February 13, 2014 8:56 AM   Subscribe

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:

STEPS, 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.)

posted by anonymous to Health & Fitness (10 answers total) 1 user marked this as a favorite
that's great about the piano and guitar -- can you challenge him with some new music? Does he not like pre-written music? What about music courses at a community college? If he's more improvisational, what about lots of exposure to jazz?
posted by angrycat at 9:05 AM on February 13, 2014

When you speak about recovery-oriented activities and programmes, do you specifically mean therapeutic activities? I am also unclear if you're specifically looking for full-day programmes or just trying to help him fill his time in a structured way. Because there are a lot of things he could potentially do to build a solid weekly schedule. He could walk dogs at a shelter or rehoming center. He could do a weekly lunch or dinner shift at a shelter. He could take a weekly music lesson. And while you don't want him to hole up in his room reading, time spent at the library does provide engagement and interaction. Different libraries also have different volunteer programs; here is LA's. I think community colleges on the semester system started back in January, but there are a lot of online classes he can take.
posted by DarlingBri at 9:24 AM on February 13, 2014

How do you feel about your local parks and rec department/adult extension center/other arts and hobby schools, and do they have anything starting soon or capable of dropping in on? Alternately, local music centers/schools, or even a private or small group class? Our parks and rec department offers lots of arts and hobby classes, and while I don't think any of them meet every single day, you could probably cobble together a schedule of chess tutoring, small group music classes, or game sessions at the local comic shop or game store to keep plenty busy.

When I was in a situation similar to your son (different diagnosis, but similar sequence of inpatient-partial/day program-whoops now you're on your own and similar tendency to go off-plan and relapse), I STRONGLY preferred the writing classes and political campaign volunteering I did to anything intended to be therapeutic. I resisted therapy and hated my treatment team, but I was much more consciencious about participating in my hobby activities. It was good, in the long run, for me to work on something I cared about that was unrelated to my illness, and spend time around normal, functional people in the community. At first, it just filled up time, but eventually those things gave me goals and an idea of what I could have in life aside from just my illness. I made friends and built relationships with caring adults that had nothing to do with my diagnosis, and they were the bedrock of my recovery.

I wish you both the best of luck. That's a tough transition to make and a tough age even for people not dealing with psych problems. I hope you find something that can satisfy everyone!
posted by bowtiesarecool at 9:33 AM on February 13, 2014 [4 favorites]

I would explore anything available through the Massachusetts General Hospital First Episode and Early Psychosis Program. They also have an affiliation with the Freedom Trail Clinic, which is more of a community mental health center than a hospital-based program, but which shares some staff with the MGH program. They run periodic support groups (illness management and recovery, dual diagnosis, etc). The doctors at both programs (MDs and PhDs) are really amazing, though I've been less impressed with the social workers and admin staff at Freedom Trail.

Also, there is a monthly support group for parents of patients with psychosis at MGH that you might be interested in -- really a nice way to connect to other people in your situation. Dr. Cori Cather (bio is available through the page linked above) runs that and she's lovely.
posted by Bebo at 10:12 AM on February 13, 2014 [2 favorites]

"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. "

What about volunteer opportunities aligned with his interests?

Our local food bank has about 12 hours a day of food repacking or donation recovery shifts. Just sign up and show up. We have people of all ages and abilities. I have made great friends there.

With BostonCares, he could sign up for something today, without having to make some long-term commitment to it.
posted by MonsieurBon at 12:05 PM on February 13, 2014

He might hate the idea, but I encourage you to seek out a clubhouse program, a form of drop-in psycho-social rehabilitation aimed at high functioning folks who need structure. My mother-in-law worked in clubhouses for 30 years and her experience with them was that they were far and away the best thing she saw working well for adults living with schizophrenia.

It looks like there are several close to you. Like I said, he may hate the idea in theory, but if you can get him to one to meet people and start to get involved it may be exactly what he is looking for to fill the months until his educational program starts, and even then to provide him with structure in his downtime. Individual clubhouses vary in programming and 'feel', so if he hates the first one you could try others later.
posted by hydropsyche at 3:33 PM on February 13, 2014 [1 favorite]

I have a dear friend who has suffered the same fate as your son. He lives here in England where there is a dedicated mental health service. However, day centers are not the answer for your son. If there is any way that you, your son, and other advocates to get involved with Boston University's program as a patient / participant observer or somehow work with alumni. If BU cannot accommodate for two months ask them for a direct referral.
posted by parmanparman at 4:35 PM on February 13, 2014

Seconding clubhouse. Saw great improvements with my schizophrenic sibling who has been going for about two years.
posted by amodelcitizen at 4:35 PM on February 13, 2014

What is his exercise program? Can you enrol him in classes/teams/personal training/whatever to support his physical fitness? Just scheduling time for a family walk is fine too.
posted by crazycanuck at 6:39 PM on February 13, 2014

Maybe there's a clubhouse program or something similar in which there are others who like to jam on guitar? I'd use his guitar interest as a bit of radar to lead him to others who share the same interest but also require a structured group environment. He could even play piano for the same group - whichever instrument would get him the most involved.

I'm glad you're taking care of yourself'; it's a shame that you're going to be called upon to give all you can physically and emotionally for an indefinite period of time due to your son's chronic illness, but that is, unfortunately, not as rare as you might think. I hope you'll seek out others who are coping with a similar situation - I firmly believe the best ideas come from those who've "been there, done that."
posted by aryma at 10:32 PM on February 13, 2014

« Older Zero Energy Universe?   |   Digital cornicopia looking for next move in... Newer »
This thread is closed to new comments.