Date: September 12, 2011
Despite years of research, medical breakthroughs and efforts to educate the public, mental illness is still widely misunderstood. A family facing a child's mental health crisis is likely to feel overwhelmed, isolated and judged.
The key to finding a way through this struggle, mental health experts say, is knowledge and support. Several Triangle-area families who have traveled this road — whose last names are withheld to protect their child's privacy — share their experiences in hopes of helping other parents facing a child's mental illness.
Signs of a mental health challenge
Experts cite changes in sleep patterns or appetite, irritability, difficulty focusing, avoiding favorite activities and problems in relationships as possible indications that a child is struggling with a mental health challenge. Physical complaints are also common with younger children; truancy and drug abuse can be red flags for teens. These symptoms may be most noticeable at home but can also impact school performance and friendships.
Karen recalls that her daughter had always been "a little high-strung" but says she became concerned when the then-6-year-old began complaining excessively of stomachaches and exhibiting heightened anxiety. "She didn't want me to go anywhere without her," Karen says. "I began having to pick her up from school on a regular basis."
Kim notes a similarly unexpected change in her daughter. "My daughter was 4½ when we first noticed a change in her personality and behavior," she says. "She turned from a calm, complacent, loving child into a demanding, loud, obnoxious brat — like the 'terrible 2s,' only delayed."
Heidi remembers that her son, as a 15-year-old, was "smart, social and well-liked" when, over the summer, he began sleeping all day and avoiding his friends. Unsure whether this was just a stage, she and her husband gave him some time. But when school resumed and he opted not to try out for the basketball team — and then refused to go to school at all — they became concerned that it was something more serious.
What to do if you suspect a problem
One of the difficulties in identifying whether a child is experiencing a mental health challenge is that children are, by their very nature, changeable. The brain undergoes normal changes that can disrupt sleep and affect mood. For that reason, experts caution, consider changes in your child's mental or emotional state in
terms of the severity, duration and impact symptoms are having on your child's quality of life.
"It's important to note that these changes do not necessarily indicate any specific condition or even a mental illness at all," says John Curry, a clinical psychologist specializing in adolescent psychology at the Duke Child and Family Study Center in Durham. "A good starting point is a conversation between the parents, then with members of their immediate support system to see if others have noticed the changes and share this concern."
Teachers and guidance counselors may also offer perspective as to whether these changes are a normal developmental phase or something unusual. If concerns persist, talk to your pediatrician or visit a child mental health specialist to discuss whether an evaluation is warranted, Curry says.
Experts and parents caution, however, that even with these elements assessed, the path to answers is not always a straight one. Sometimes an initial diagnosis is discarded as treatment fails to help, new symptoms appear or evaluations suggest an additional condition is present.
Cynthia's son, now 20, was diagnosed with autism at age 2. Then, just before turning 11, he was diagnosed with obsessive-compulsive disorder as well. "I was aware of some of his compulsions/obsessions early, around age 4 or 5 — his extreme neatness, absolute need for order," she notes. "[But] as these challenging rituals became more intense, we knew we were dealing with something in addition to the autism."
To help guide parents through the often complex process of getting an accurate diagnosis, the National Alliance on Mental Illness has developed recommendations that include a comprehensive physical exam by your child's pediatrician, an evaluation for co-occurring conditions (such as learning disability or sensory integration problems), good record-keeping and working with specialists in children's mental health.
Cynthia's advice: "One, don't panic. Two, don't jump to conclusions. Three, you are not alone."
Managing fear, stigma and guilt
Unfortunately, "alone" is how many parents feel when they learn their child has a mental illness.
"Our world went dark, to put it mildly," says Kim of her now 15-year-old daughter's difficulties. Managing her conditions — attention deficit-hyperactivity disorder, pervasive developmental delay and oppositional defiant disorder — involves frequent adjustments to her treatment regimen as she matures. "It's getting harder to do," Kim acknowledges. "As a parent, my heart breaks every day."
For many families, too, the difficulty is compounded by society's general unease with the subject of mental illness.
"One thing you hear is that mental illness is not a 'casserole' illness — [meaning] if your child is hospitalized due to a psychotic break or suicide attempt, neighbors do not bring casseroles or offer to get your mail," explains Jennifer Rothman, NAMI North Carolina program director for young families. "Families feel isolated due to family members and friends not knowing how to handle a mental illness."
Heidi's family has experienced such isolation during her now 29-year-old son's battle with bipolar disorder. When he dropped out of school and was hospitalized for severe depression, "all of his friends disappeared. I kept thinking that if he had broken his leg, they'd have been lining up to see him," she says. "That really sparked my anger."
Adding to families' pain is the common misconception that a child's mental illness is the result of poor parenting. Ironically, sometimes the people struggling hardest with this notion are the parents themselves.
"I felt very guilty," says Karen, whose daughter, now 10, was eventually diagnosed with generalized anxiety disorder. "I wondered what I was doing wrong as a parent that I could bring my child to such a state of trauma."
While these feelings are common, mental health experts urge parents not to focus on blame, but on how to help their child.
"Emotional problems have different causes," explains Donald Rosenblitt, executive and clinical director of the Lucy Daniels Center in Cary, which provides mental health services for children up to age 11. "Some types of emotional problems are more dependent upon genetic and other biological factors than others. Some are more likely to be affected by life experiences than others."
Curry adds, "I simply tell parents, 'We're going to form a team' — parent, child and me — 'to identify the problems and how to address them.'"
Cynthia, who is now a parent educator with NAMI NC, agrees. "We are not helpful to our children when we spend time determining responsibility or assigning blame," she asserts. "Mental illness, like all illness, is a part of the human life experience."
Family education and support
One critical element helping parents face this challenge is knowledge.
"An informed, educated family can make a big difference in helping a child facing a mental health challenge," explains Deby Dihoff, executive director of NAMI NC. Participating in a family psycho-educational program, such as NAMI Basics, can help parents understand what their child is going through and how to manage their child's illness.
The goal, Dihoff says, is "wrapping support around families facing this challenge, from people who have been there" — trained facilitators who are also parents of children with mental illness. Other organizations offer support groups for specific mental health conditions.
Some parents find they benefit from professional support as well. Heidi — who, like Cynthia, is now a NAMI Basics instructor — sought therapy to come to terms with her son's suicide attempt. "My friends were very supportive, but they didn't know what to do," she remembers. "Talking to a trained person who can help you understand what you can help, and what you can't, is very helpful."
Karen, too, says that counseling gave her comfort. "I have learned that we are all who are, regardless, and that I shouldn't blame myself," she says. "Now we can all move forward with the strength and knowledge that there is nothing wrong with us, with our daughter or with having mental health issues."
Karen Lewis Taylor is an Apex-based writer and editor and mother of two school-aged daughters.
CHILD MENTAL HEALTH RESOURCES
* Duke Child & Family Study Center: www.dukechildrens.org/services/child_psychiatry
* Duke Child Development and Behavioral Health Clinic: www.dukechildrens.org/services/child_development_and_behavioral_health
* Lucy Daniels Center: www.lucydanielscenter.org
* N.C. Division of Mental Health, Developmental Disabilities and Substance Abuse Services (includes links to local services by county):
* UNC Child & Adolescent Psychiatry: www.med.unc.edu/psych/patient-care/child-adolescent
See resource listings under "Mental Health/Behavioral Counseling" (p. 39 of the Special Kids guide) for additional children's mental health service providers.
WHAT IS MENTAL ILLNESS?
Mental illness is a medical condition that disrupts a person's thinking, feeling, mood, ability to relate to others and daily functioning. The Surgeon General has estimated that 1 in 5 children will face a serious mental health challenge at some point in their lives.
For more information, including details about family education and support programs, visit www.naminc.org.