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.
Just thought I would add a quick correction.
It is actually four girls, and there are diagnoses other than childhood-onset Schizophrenia. Becca and Jani both have Schizophrenia, yes; however, Brenna has bipolar disorder with psychotic features (possible Schizoaffective) and Ailish has bipolar disorder and anxiety.
I myself experience mania, depression, acute anxiety, aggressive rages and psychosis. I live from the other side of this story – the side of the child (well, teenager now). I find your blog – and Jennifer's and Michael's – to be extremely insightful. It has opened my eyes to all my mother has done for me and I am much more appreciative. So, thank you very much.
Hi Eri:
Thanks for the corrections, and for your note. I wasn't aware of Ailish being part of the program. For a time, over at CABF, we had teen chat rooms, and I really enjoyed chatting online with the teens who came to share with us parent volunteers and with other kids.
You know, I whine here sometimes about how hard it is to be a parent, but I need to be reminded the challenges of being the kid as well. I appreciate you for reminding me of that!
My husband and I watched the 20/20 program and found ourselves nodding with understanding through so much of it. There was so much story left to tell like the lack of hospital beds, most of our waits have been for days in a ER not two hours, lack of available child pyschiatrists and services for these kids,what has to be done to prepare them for adulthood and what steps some aprents have to take when there is little chance of independent living in their future. I wanted more than an hour but am grateful for the hour because it was much more than 10 minutes. Also so that it was part of a story line on Private Practice last Thursday. The word is getting out FINALLY but there is still so far to go but your blog helps us all as well as helps to get the word out that this is serious and that our kids needs help.
Sharon
So true, Sharon! Tom, my husband, sat watching the 20/20 episode and, at one point, turned to me and said, "I could watch this with the sound down and know what it's about – I've seen that face – the facial expressions – so many times on Tim." We need to be vocal, to bring the issue to light, get the services and help all our children and families deserve, and help put an end to the stigma of mental illness. Thanks for your note.