A Strange Sigh of Relief

I remember the day my mom saw Jani Schofield and her parents Michael and Susan on Oprah. Jani is a beautiful young girl who suffers from childhood onset schizophrenia. Mom called me the next day, after watching the show off her DVR. I expected my mom’s tone of voice to be one of sorrow, or sympathy. Instead, she sounded relieved.

“Wow – there really are other kids like Tim out there, aren’t there?” she said. “Yep,” I replied, smiling to myself. “There are. And it’s great to see them.”

I’d been corresponding with Michael Schofield for a few months before the Oprah episode aired. Michael had an idea to start a support group for adult family members raising kids with severe mental illness – a place where we could share triumphs, tragedies, frustrations, and ideas online, and map out our locations so we could physically support each other if necessary. It’s sort of a sick and twisted fraternity. We don’t cringe or gasp at stories of our childrens’ symptoms. We commiserate by sharing similarities. We offer ideas that have helped us and our children. We remind each other to take care of ourselves. We swear and cry about the lack of help, lack of services, lack of hope we experience day to day. We also share pictures and birthday greetings and small victories. It’s such a relief when someone posts a note that says, “my kid does this…” and 20 other parents answer, “mine too.”

It’s the second online support group I’ve joined since Tim was first diagnosed. The other is an online parent support group offered by the Child and Adolescent Bipolar Foundation. The caring and open group of parents there literally saved our lives. We were at our wit’s end, sitting with the safety of our three children in one hand, and a recommendation from a psychiatrist that we legally relinquish our parental rights to Tim to get him the treatment he needs in the other. When I joined a CABF support group, I met other parents who helped educate me on my and Tim’s rights, listened to me when I vented my frustration and anger, and shared information on schools and doctors and medication. CABF support groups are free – no membership fee required. It’s a relief to talk to other parents who speak the strange language of psychiatric medicine.

Seeing is believing is understanding, but 10 minutes of Jani on Oprah wasn’t near enough. Jani and her parents and two friends who also suffer from severe mental illness will be on ABC’s 20/20 this Friday, March 12. It’s an hour looking at the life of these three girls and their families in Southern California. All three of these girls, all under the age of 14, have childhood onset schizophrenia. Please watch or set your DVR. Every time someone is brave enough to step up and talk about our kids, I breathe another sigh of relief that one day, people will understand this is a real disease that impacts real families.

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