When Susan’s son was diagnosed with bipolar disorder at age nine, she wasn’t panicked or fearful. She was relieved. The now fifteen-year-old had first been diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), a nonverbal learning disability (NDL), and Bipolar Disorder.
Due to the multiple diagnoses, Susan and Gary decided to take her son to a renowned pediatric psychiatrist. Surprisingly, he said her son did not have bipolar disorder. Her son was given yet another diagnosis: severe mood dysregulation (SMD), a condition similar to pediatric bipolar disorder. Since SMD has only recently been defined, there are no studies on its treatment, and children with SMD are often treated as if they have pediatric bipolar disorder.
“Language and labels carry perceptions along with them. The label of bipolar disorder, for example, has huge implications for schooling,” Susan explains. “Many schools wouldn’t even look at her son with that diagnosis. Labels carry so much weight. I think it’s important for parents to realize that multiple diagnoses, or even changing diagnoses, are not uncommon.”
Needless to say, living with a child without knowing what he suffers from has been challenging—not only for Susan and Gary, but for their daughter, Sam. “It’s had a profound effect on Sam,” says Susan. “She doesn’t like to talk about it, but I know she worries about her brother. There were times she didn’t get the attention she needed and deserved because her brother was going through a bad time.”
Susan and Gary have worked to maintain balance within the family by giving Sam some one-on-one time when possible. “We’ve always encouraged her to talk about how she feels, even though she may worry about hurting our feelings,” says Susan.
Susan says she and her husband are on the same page when it comes to handling her son. “I think there are certain things that push our buttons and we’ve learned to help each other,” she says.
Susan is selective in whom she shares her son’s diagnosis. “Certain people will never get it so I’ve never shared this with them,” she says. “But I have a network of close friends who do know and they have kept us calm.”
In addition to her deep spiritual belief helping her at tough times, Susan says exercise is her salvation. “I like to bike ride and there are some days when I feel like I can’t do anything else but that,” she says. “If it weren’t for exercising I wouldn’t be able to function.”
In an essay he wrote for his English class at school, her son explained the frustration he often feels as “falling down over and over again.” But his positive experiences at sleep away camp, as well as an understanding teacher in the eighth grade, and his passion for writing song lyrics, have helped to build his confidence.
“Next time you feel frustrated and are ready to give up, remember that falling down is part of life,” he writes. “You will get up again.”