Putting baby locks on the kitchen cabinets to protect her toddler was one thing, but locking away the steak knives from her seven year old was not what Muffy Walker ever imagined would be necessary. Walker also never imagined she would need to use her skills as a psychiatric nurse on her own child.
When Walker’s youngest son Courtland turned four, she and her husband began noticing behaviors that were foreign to them. Courtland had become unusually aggressive; having uncontrollable temper tantrums in the grocery store aisle, throwing toys across the room at his brothers, and kicking his mom at the slightest parental control. Once a gregarious, outgoing child, he had become fearful, frightened to go to school, afraid to be in his room alone, or go outside to play. Courtland now shunned the beach; the sand bothered his toes, and in summer he wore winter clothes, complaining he was cold. The inside labels on his shirt and seams on his socks sent him into fits of rage.
Walker worried that like her other two children, Courtland might also have Attention-deficit hyperactivity Disorder (ADHD), but perhaps a really, really bad form of it. Over the next three and half years, Courtland saw five psychiatrists, each offering a different diagnosis including Obsessive-Compulsive Disorder, ADHD, Oppositional-Defiant Disorder, and Post-traumatic Stress Disorder. Finally, after being incorrectly treated with an anti-depressant, Courtland experienced a full blown manic episode and was ultimately diagnosed with Early-onset Bipolar Disorder.
Bipolar Disorder, once known as manic depressive illness, affects 2.7 million adult Americans. It causes dramatic mood swings—from overly “high” and/or irritable to sad and hopeless, and then back again, often with periods of normal mood in between. Severe changes in energy and behavior go along with these changes in mood. The periods of highs and lows are called episodes of mania and depression. It is the sixth leading cause of disability in the world. It results in 9.2 years reduction in expected life span, and as many as one in five patients with bipolar disorder complete suicide.
Even with medical training, the Walkers were ill prepared for the frustration they’d experience trying to steer their way through the mental health system, the fear they’d encounter not knowing what the future held for their youngest son, and the lack of understanding and support they’d meet on a daily basis. Within the first year following Courtland’s diagnosis of Bipolar Disorder, Walker found very little support, both for herself and her family. She began talking with other moms at the playground, explaining why her son was different, what his aberrant behaviors meant. Slowly but surely, others began to confide, sharing their stories of sadness, grief over a future now robbed of its potential, loneliness for their excluded child, fear for their child’s safety and unanswered questions about medications, hospitalizations, conservatorship, doctors, the lists were endless. From those connections and conversations, Walker, along with three other moms with bipolar children, started the International Bipolar Foundation (IBPF). In less than a year’s time, IBPF has reached out to help 100s of families cope, find support and resources, and begin to understand how to navigate the complex mental health system.
Walker describes her days with Courtland as walking on eggshells. Although he is “stable”, every interaction has to be handled with kid gloves. Whereas another parent could expect their teen to independently brush his teeth or come to the dinner table when called, Walker explains that even these every day activities can crescendo into a rage if not handled carefully.
For Courtland, the hardest part has been the negative stigma. I hated to see the sadness on his freckled face when I’d pick him up at school. Almost daily, he would tell me another scenario where he was taunted and teased by his classmates. They called him psycho, mental head and yelled at him to “go back to the looney bin”. Courtland was never invited for play dates or to attend birthday parties. After a Saturday soccer game, Courtland invited a fellow team mate to come over to play. I watched as the boy’s father raised his eyebrows looking in our direction and quickly told his son no. Moments later the same boy was invited by a different friend and was allowed to go. My heart ached as Courtland watched the two boys skip off together.
What parents need to be aware of warns Walker, is that just as with so many other illnesses, the symptoms of Bipolar Disorder range broadly along a spectrum. Although one child may be psychotic (loss of touch with reality) or a danger to himself (one in five children with Bipolar will kill themselves before the age of 18), another may be relatively high functioning, attend regular school, and hold a meaningful job. Think Rachmaninoff, Hemingway, Vincent Van Gogh, and Carrie Fisher. All are highly successful, extremely creative people, all who have/had Bipolar Disorder.
“The network of parents supporting each other has been very uplifting”, says Walker. “We won’t give up hope”, she says with a tear in her eye. “I’ll never forget the day I toured a school for the emotionally disturbed. Graffiti stained the crumbling stucco walls, trash was strewn across the playground and weeds vied for position in every crack along the sidewalk. The halls were dank and smelled of curdled milk. Standing there, my dreams of Courtland attending the local college preparatory school and all it had to offer him evaporated. I quickly retreated to my car where I sat for hours sobbing loudly. Later that week, after re-counting my experience to my support group, I realized I was not alone. I did not have to feel guilty, or defend or explain myself. It was then that I realized my dreams for Courtland have not disappeared, they have just changed.”