Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=101779
Story Retrieval Date: 11/23/2014 5:02:31 AM CST
“Where’s my casserole?” she asks herself.
Christine Walker's 8-year-old son Schuyler began displaying symptoms of an illness as a toddler. But Schuyler’s illness is not the kind that has a signature ribbon, popular walk-a-thons or compels neighbors to bring casseroles to the family's door.
“I have people shunning me," she said. "I have social play groups dissolving because nobody wants to be with my child.”
Schuyler, diagnosed at age 4, is living with bipolar illness. Formerly known as manic depression, the disorder renders the brain unable to consistently regulate moods. As the name suggests, the illness causes the two poles of moods - mania and depression - to go into overdrive.
Schuyler’s emotions swing to extremes with a disorder shared by 5.7 million adults, according to the National Institute of Mental Health. But the number of bipolar children has not been definitively estimated.
Trains have always been Schuyler's passion. He loves going to the Metra station at rush hour to watch them pass. He’d love to be an engineer, Christine said.
Christine describes her son with her eyes tightly shut, listing his attributes like a mantra: “funny, sweet, smart…”
But because of his mood disorder and the added challenges of ADHD and Asperger’s, these gifts are masked.
Asperger’s disorder is a milder variant of autism while ADHD (attention deficit hyperactivity disorder) is a condition that makes it difficult for some children to pay attention and control their behavior. It is estimated that 40 to 90 percent of children who have bipolar disorder also have ADHD.
“We live very, very, very painful lives, and it’s maybe even more painful because people choose to back away versus come closer,” she added.
The family lives in Winnetka and, a year and a half ago, Christine chose to reach out to other parents when she began working with the Child and Adolescent Bipolar Foundation in Wilmette. A haven for 25,000 families, its hallmark Web site is stuffed with a learning center, links and other resources, including online support groups.
“When you are caring for a very ill child, you can’t get out,” explained Susan Resko, executive director of the bipolar foundation.
Christine contributes to the organization’s “Family Response Team.” In a small basement bedroom of her home, she connects to families who don’t know where else to turn. A cramped laptop station with a phone is the lifeline she uses to address their questions: How do I get my kid diagnosed? How do I make it through the day? How do I keep my other kids safe?
These are questions that Christine knows all too well, having two other children, ages six and four.
“I have holes in my walls upstairs,” she said, describing the pure rage that can mark Schuyler’s mania.
At younger ages, he would break windows by chucking toy box cars through them. As he got older, the rage developed into verbal assaults.
“When angry, he can fly into a rage, threaten to kill me, say he’s going to throw himself out the window,” Christine said.
Extreme giddiness or creating chaos for a laugh can also characterize his manic episodes.
“Mania usually means Sky has lost touch with reality,” she explained.
But in September 2007, her family’s need to keep everyone safe while helping Schuyler make better choices necessitated that he live at a therapeutic boarding school in Hyde Park.
“Exceptional” was the word Christine used to describe the Sonia Shankman Orthogenic School, known as “the ‘O’ School,” an affiliate of the University of Chicago that serves 50 residential students and eight day students.
While the term “orthogenic” in psychological circles refers to the treatment or education of mentally ill children, its Greek meaning is “path to truth.”
Clinical psychologist Pete Myers, co-director of the school, said the natural strengths of the children create the context for the intensive therapeutic support and “in-the-moment” assistance their staff provides.
A simple “Mom and Dad can’t help you learn as much” is how Christine explained the move to Schuyler. While Sky would prefer to be home, she said, he understands why he is there: to learn how to make better choices.
He can visit home, and the first night back is always great, Christine said, as he is eager to play with his toys and sleep in his bed.
“And then by the next day, the stuff starts unraveling,” she added.
In a bout of frustration, Schuyler has grabbed his hair and yelled, “I hate my brain! I hate my brain!”
For now Christine just tells him, “We are going to make sure that we make your brain better.”
Schuyler can stay at his school as long as he needs to, which means getting him stabilized on medications to keep both manic and depressive episodes away so that he can learn to stay safe.
Christine and her husband’s expectations for his future are hopeful but modest, especially as so little is known about pediatric bipolar disorder. The first longitudinal study of the illness was released in this month’s “Archives of General Psychiatry.” It revealed that 44 percent of the bipolar children in the study still experienced at least one manic episode into adulthood.
While Christine empathizes with adults who struggle with brain disorders, such as her grandfather with Alzheimer’s, she thinks that childhood onset is especially difficult.
“My grandfather had 80 amazing years,” she said. “Schuyler’s never had an amazing year.”
Nevertheless, her family’s hopes for Schuyler are steadfast. Like most parents, they want him to be alive, happy, healthy and have friends.
To help Schuyler achieve his goals, Christine also pursues her own. Ceaseless in increasing public awareness of mental illnesses, she is working toward a graduate degree in public policy at Northwestern University.
“You can see someone in a wheelchair and know their legs don’t work, but you can’t see someone’s brain in a wheelchair and know that things aren’t working well,” she explained.
Christine is also writing a book for parents with special needs children called “Chasing Hope.” It speaks to the primal desperation parents can feel as they chase the next doctor, pill, school or therapy that will “fix” their problems.
Christine summed up her plight as a parent: “While you can come to grips with the reality, the new normal, you do absolutely everything you can to make your child well. And so you chase hope.”