Parents of children with Bipolar Disorder and Childhood Onset Schizophrenia tell common stories … by Chrisa Hickey
I’ll never forget the day my son’s therapist told me he needed to be hospitalized. He was 11 years old and had spent his entire life vacillating between extreme happiness and extreme rage. He heard voices and saw things no one else could. Pediatricians and neurologists and developmental specialists had told us he was autistic. That he had a sensory perception disorder. That he was speech delayed. That he had Oppositional Defiance Disorder. No one had suggested psychiatric hospitalization before. I asked her why he needed it and she said gently, her hand on my hand, “because I believe Tim has a serious mental illness. He needs evaluation and medication.” She let it sink in for a few minutes before delivering the hardest blow. “This most likely won’t be his only hospitalization,” she whispered. And so began our foray into the world of childhood onset Schizoaffective Disorder, Bipolar Type.
It’s a confusing world, to be certain, and our experience is far from unusual. Parents of children with Bipolar Disorder and Childhood Onset Schizophrenia tell common stories about doctors refusing to diagnose for fear of the stigma of a severe mental illness on a child’s “permanent record.” If you can find a child psychiatrist, many of them don’t believe these conditions can exist in children. Most psychiatric medications aren’t tested or approved for use with kids. Schools don’t know how to educate or manage these children, and other parents fear having them around their neurotypical sons and daughters. The compounding of all of these obstacles, coupled with the unpredictable rage that is a common symptom of pediatric mental illnesses forces many families of these children into a self-imposed isolation. Parents and siblings are often diagnosed with depression and PTSD themselves from the chaos that home life with a severely mentally ill child can become.
For my family, it was just such a roller coaster. Tim was hospitalized 12 times between 2006 and 2009 for a total of 300 days inpatient. He attempted suicide twice. He was shuffled between five different therapeutic day schools as he proved too much to handle for each. We went through five child psychiatrists until we found one that would work with us, rather than talk at us. When we finally gave in to meds we went through more than 20 different combinations before finding one that helped. And after our daughter was diagnosed with PTSD, I was being treated for depression, and six visits from the sheriff in less than six months, our doctor helped us find a residential treatment program for Tim, where he’s been since August 2009. We’re one of the lucky families, living in a state that provides such services for children like Tim. Many of the other families we’ve met through the Child and Adolescent Bipolar Foundation and social media sites like Facebook and Twitter don’t have the state services or personal resources for such intense treatment. And with more and more research finding that mental health issues often show initial symptoms in childhood, this is a crisis that needs focus from the entire mental health community. Many of our children can lead happy and productive lives if the resources to treat them and support their families are made available.
Visit Chrisa Hickey’s blog, The Mindstorm: Raising a Mentally Ill Child, at http://www.chrisahickey.com