"Socialization Over Isolation": Jani, Ben and Community

I am a firm believer in the possibility of Recovery in Mental Illness.

Does "recovery" mean "cure"? How I wish it did - but, at the present time, it means management of symptoms, and it means rebuilding  - of one's life, and also of neural pathways.

I have watched and guided my son Ben through a decade of recovery - the ups and downs, the crises and the careful restoration afterwards.  What this has taught us is that there are four cornerstones to the foundation of the recovery process:

• Medical Treatment (whatever that means for each individual)

• Structure

• Purpose, and

• Community. Love.

Since the publication of Ben Behind His Voices two years ago, there have been three additional steps in Ben's recovery process. One is that he now is employed, and has been for over two years. I've written about this in past posts if you want to know more about that (but it has strengthened the Purpose and Structure cornerstones). The second is that he now rents a room from us, his family. After eight years in a group home and then system failure (also a subject of past posts), home is the best place for him right now, as we continue to hold onto support systems for case management and the path to greater independence for Ben in the future. This experience has also added strength to the Medical Treatment (we supervise meds) and Community/Love corners.

The third change is the one that has also been a surprising boost to that cornerstone of Community. Ben's life now includes friends - including one that currently also rents a room from us, someone Ben met at school. This friendship had brought out a lot in Ben that seemed limited before: talking about relationships, taking bike rides through the woods, hiking, playing card games and video games that are not solitary.  For the first time in over a decade, I hear the sounds of  laughter, cheers, and cars in the driveway as other friends come over to hang out. And, yes, at last, with some of these friends, Ben can say "I'll be right back. Just gotta take my meds with my Mom." A miracle.

Wow. Socialization over Isolation. Yes, please.

The Jani Foundation is championing this cause by planning events for children with SED (serious emotional disturbances) to relate to each other - to provide community where they don't have to feel isolated. (Jani is the subject of the book January First (written by her father, Michael Schofield), and the follow-up airing of "Born Schizophrenic". They have created this t-shirt which echoed my feelings about Ben's recovery. Socialization, especially in places where you don't have to always feel "different", is vital to the process. I learned this in 2001, when I was allowed to attend a meeting of Schizophrenics Anonymous.  This excerpt from Ben Behind His Voices tells the story: 

"I once attended, in 2001, a meeting of Schizophrenics Anonymous. This group is based on principles similar to the twelve steps of Alcoholics Anonymous. After a lengthy conversation with Charlie, the founder of the local chapter, I was granted permission by the group to sit in. The week I went, there were about seven or eight people attending, in various stages of recovery. They asked me to share my perspective as the mother of someone with schizophrenia, and they spoke of their own paths toward recovery. Afterward, we all went out for pizza—because, as Charlie told me with a smile, “We need to practice socializing, you know.” They got the joke. “Besides, the pizza’s only two dollars a slice,” said Bill, another group member. I loved these people. They even joked about their past. They shared a genuine laugh over things they had once believed about themselves: that they had “known everything,” that they were meant to be elected president. This was the first time I had ever heard these stories told with any humor inside the tragedy. It felt like the ultimate acceptance, being able to laugh with each other about it. They had found community, and they had found laughter."

The feeling of community can also happen in Clubhouses,  programs where members are given purpose, and not just a "place to go". People with mental illness, like all of us, have times where they need to be alone and regroup. But too many are isolated too often - as are their families. I have spoken with Jani's parents, and even though we have never met, we share a bond. So do Jani and Ben. They just may not know it yet.

The Parents Network: Eyes, Ears, Heart and Soul

Yesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child's Descent into Madness, and Her Father's Struggle to Save Her. (reviewed in my last post)

Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.

Here is the episode of the show where you can download or hear our conversation.

We need each other. I can't tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben's first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.

Without you all, I don't know how we would have survived. Thank you - for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.

This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.

Together we can make a difference. My favorite cliche - because, like many cliches, it is true.

January First Review: Yes, Childhood Schizophrenia is Real

January First: A Child's Descent into Madness and Her Father's Struggle to Save Her
by Michael Schofield

My rating: 5 of 5 stars

It's such a mirror reflection of the emotions I went through as the mother of a son with schizophrenia - only my child was in his mid-teens when symptoms began. Jani was only - well, in hindsight for this loving, confused family, she was a newborn when her "differences" became apparent.

But, like our family, the Schofields thought, and hoped, that love - and disciplined, creative parenting - might just "fix" the problem. Not the case if your child has schizophrenia, trust me - and not easy to accept for either parent.

This is a highly readable, honest, raw memoir of the grasping at the straws of hope that we go through to find our how we can help our children. And, eventually, that we can't do it alone. Then, we have to find the right people to fill out the team. This, as you'll read, is a long journey.

Many had thought "childhood-onset schizophrenia" was not a real thing. It is. Oh, it is. And this family, like ours, has worked tirelessly to get through the maze, guided by love and hope.

Bravo!
Randye Kaye, author "Ben Behind His Voices"View all my reviews