The "invisible illness"

What can daisies, zinnias, geraniums and weeds teach children about bipolar disorder?

(Photo courtesy Lisa Lewandowski)

The goal of "Darcy Daisy and the Firefly Festival: Learning about Bipolar Disorder and Community," a children's book published this year, is to "address a complicated topic in a non-threatening and child-friendly way," says co-author Lisa Lewandowski.

By using flowers as characters, the book aims to be universal and non-threatening, Lewandowski says, and flowers can portray diversity in a community.

The book works as a tool parents, teachers and mental health professionals can use to start discussions with children about mental illness.

In today's world, there are "still so many myths and misinformation" about mental illness, says Lewandowski, a research associate at the Institute of Social Research (ISR). She adds that the first step in writing this book was recognizing there was a need for it.

"Shame and stigma can really stifle dialogue and discussion—means of getting accurate information to children, teachers and families," Lewandowski says.

In addition to her work at ISR, Lewandowski is a licensed practicing clinical psychologist at a small group practice in Northville.

As a graduate student working with a family advocacy program, she says she realized families of individuals diagnosed with mental illness did not have basic information about how to talk to younger members about their relative's condition.

Lewandowski's current clinical work with adults who experience mental illness, like bipolar disorder and schizophrenia, has allowed her to hear how they struggle talking to children about their conditions.

When Lewandowski and co-author Shannon M.B. Trost decided to take on the project three years ago, Lewandowski says they undertook many brainstorming sessions, idea sharing with colleagues and testing of story lines on their own children.

Their research wasn't all about the illness. They also studied horticulture to learn the differences between flowers in order to develop their community of characters. For instance, weeds were used to exemplify harm in the garden. Characters named the Bugleweeds are the mean, gossiping flowers destroying the community. Illustrator Kimberly Shaw-Peterson utilized the authors' ideas and drew the weeds to look menacing. The Bugleweeds sit in a café and talk about Zelda Zinnia, the flower whose character has bipolar disorder.

Darcy Daisy, the main character, is a young flower who is confused by the gossip she hears about Ms. Zinnia, who organizes the Firefly Festival each year. In an open and honest manner, Darcy's mother explains about the highs (mania) and lows (depression) of bipolar disorder and how frustrating it can be for those with the condition. Mrs. Daisy explains that mental illness is not contagious and that Ms. Zinnia can receive treatment, such as medication and help from a therapist to make her feel better. Mrs. Daisy also explains the need for community support to Darcy in a sincere dialogue.

The authors try to illustrate the common feelings children, like Darcy, may have when someone they know has a mental illness.

Lewandowski says children may experience confusion, fear, shame, sadness and anger, especially if accurate information is not forthcoming.

"I think that there's still a lot of shame that surrounds it [mental illness]," Lewandowski says. "We have a long way to go to educate the public and bring about the awareness needed for afflicted families to get the help they need."

At a book festival where "Darcy Daisy and the Firefly Festival" was on display, Lewandowski says some of the parents were steering their children away from the table after they realized the book was about mental illness. "Stigma is still alive and well," she says. "It's really clear when you see reactions like that to a book."

Yet the book has had unforeseen success as well. Lewandowski, Trost, and Shaw-Peterson have been invited to read from the book at local libraries, including the South Lyon Library, the Monroe Library and the Farmington Hills Library, and at several schools this coming spring.

Their presentations include puppets and dolls and a basic talk to elementary students about mental illness, the stigma that surrounds it, the negative impact of gossip and how to talk with trusted others about fears.

"We talk about it as an 'invisible illness' because you can't identify a person with mental illness by looking at their physical attributes," Lewandowski says. "We emphasize how mental illness is both different and similar to other medical conditions."

"We try to impart that the brain can be sick and that behavior is a sign of the illness, unlike other conditions that may entail a physical irregularity involving, say, a bandage, wheelchair, or cast."

Another main point of the presentation—acceptance—is emphasized by the fact that Darcy Daisy talks to her mother and Mrs. Daisy explains that Darcy can help by treating Ms. Zinnia with respect and dignity.

"People are more than their illness," Lewandowski says.

The co-authors also will be presenting their book at the Michigan Reading Association Conference, held in Detroit this March. The audience primarily will be educators."Teachers have been really responsive to this because they'll say, 'Hey, we really wanted to address this issue but didn't know how,'" Lewandowski says. She adds that they are training teachers to use the book in the classroom in addition to going into the schools themselves.

The book has received support from the Metro Detroit Chapter of the Depression and Bipolar Support Alliance (DBSA), an advocacy nonprofit group. Several members of the DBSA have told Lewandowski they wished they had it 20 years ago when their children were young.

"We could have ten more of these books and it wouldn't be enough," Lewandowski says.

For more resources on mental health disorders, please see the National Institute of Mental Health's web site at www.nimh.nih.gov.