Parenting a child with mental illness by Liz DeCarloPhoto courtesy of Liz DeCarlo Freddy Pierce's parents were told his behavior was the result of bad parenting. It took years before he was diagnosed correctly and could receive help for biploar disorder.
Two years ago, I watched my 7-year-old son walk down the stairs, jumping the last three steps because he believed them to be contaminated. He then carefully walked to the family room, sitting only in one corner near the TV, because all the furniture and pillows in the room also were contaminated. Next began the first of many trips to the bathroom to wash his hands.
When I could finally get him into the car, he began his list of questions: Would we cross any railroad tracks, go through any tollbooths, would we get a flat tire, did we have enough gas? His anxiety skyrocketed at the idea of leaving the house as his worried mind took in all the possibilities of calamity.
On this morning, I was finally ready to accept that this was not a phase my child was going through: Something was terribly wrong.
Two weeks later, after meeting with a psychologist who also met with my son, I became one of a group of parents that is growing every day. My child was diagnosed with a mental illness. More cases but no more acceptance For my son Anthony, the diagnosis of obsessive-compulsive disorder and generalized anxiety disorder brought great relief: There was a reason for the behavior that was controlling him. For me, my first reaction was just the opposite: I fell apart.
The National Alliance for the Mentally Ill (NAMI) defines mental illness as "health conditions characterized by alterations in thinking, mood or behavior [or some combination] associated with distress and/or impaired functioning." And while the general public has become more accepting and understanding of certain mental illnesses, such as bipolar disorder and depression in teens, resources and support for very young children like mine are limited.
And the stigma attached to mental illness further exacerbates the problem.
I wanted no one to know and I wanted this whole thing cured quickly and kept secret. My feelings of having done something wrong were overwhelming, barely allowing me to deal with a situation that required me to be calm and navigate uncharted territories as my child's advocate. Unlike parents of children diagnosed with a medical disorder such as asthma or diabetes, parents of mentally ill children often won't ask other parents to recommend doctors or therapies because of the strong desire for privacy and the stigma attached to mental illness. Often, it's hard even to find other parents.
But the families are out there, and many, like my family, are suffering alone. The alliance's Web site shows approximately 9 to 13 percent of children between the ages of 9 and 17 have a mental illness. One of those illnesses, attention deficit hyperactivity disorder, or ADHD, has been written about widely and talked about openly. But other mental illnesses children face, such as depression, bipolar or anxiety disorders, of which obsessive-compulsive is a part, are not as well known.
Resources for the families and the children can be extremely difficult to find. And for parents of very young children like mine, it's often hard to get pediatricians and other family members to agree that the child even has a significant problem. Some see it as just a phase.
Dr. Henry Gault, a child and adolescent psychiatrist in Deerfield and media spokesperson for the American Academy of Child and Adolescent Psychiatry, agrees that parents may have to advocate strongly for their child when it comes to convincing pediatricians and family members of a problem. But he also encourages parents not to overreact to every behavioral problem with children.
"It's important for parents to realize that all kids go through ups and downs and phases and fears. They're up at night or having separation anxiety," Gault explains. "Kids have good and bad periods just like adults, only they act them out more. So I wouldn't panic right away because of your child's behavior."
Gault recommends parents try to deal with the behavior by talking to other friends or family members whose parenting you respect to see if you can find a solution.
"But if the problem goes on and on, not for one month or two months, but is ongoing, and if it is significantly interfering with the life, happiness and comfort of your child, that's when I'd consider getting help," Gault says. "Because for the short term, a lot of these problems come and go, but when a problem significantly interferes with your child's happiness, you want to do something."
It's no one's fault My husband and I did talk to other parents and eventually to our pediatrician. Anthony has been exhibiting quirky behaviors and signs of excessive worry since he was a pre-schooler, but several trips to the pediatrician and to a psychologist when he was 3 resulted in scolding for our parenting. Even when we told the doctor he was washing his hands hundreds of times a day, we were told we should reduce the stress in our home and take him to a dermatologist to treat his bleeding hands.
Unfortunately, we are not alone. Many parents have had similarly frustrating experiences. Jennifer Pierce of Aurora spent several years trying to get help for her son, who had been acting out since he was a newborn. Freddy, was ultimately diagnosed at the age of 3 with early onset bipolar disorder, oppositional defiant disorder and pervasive development disorder.
"I knew there was a problem even before Freddy was born," Pierce says. "I had been to several doctors because of abnormal fetal movements. They thought he was having seizures in utero." When Freddy was born, the problems began with a vengeance. He never slept, cried inconsolably and exhibited weird movements, flailing and jerking.
"By the time he was 4 weeks old, I was in there [the pediatrician's office] every day saying something was wrong, please help me," Pierce remembers. "The enormity of the situation really hits you. There has to be something so wrong, but the doctors kept saying it was the worst case of colic they'd ever seen."
As Freddy grew into toddlerhood and began acting out aggressively, his parents were told that his behavior was a result of parenting. Classes and books were recommended. "We went through two allergists, four pediatricians and two EMTs and no one still knew what was wrong with him," Pierce says. "Finally when he was 3, he attacked me and cut my head open. I was on the floor bleeding, holding my 2-year-old son and I said, ‘This isn't normal behavior. A 3-year-old doesn't try to kill his mother.' "
The Pierces finally found a psychologist who spent three months examining Freddy and developing a diagnosis. He ran numerous tests, checking and double-checking his diagnosis before telling the Pierce's that Freddy was suffering from bipolar disorder.
"Because kids are actively growing, changing creatures, sometimes a diagnosis is more difficult and a lot of times we're surprised by what happens," says Gault. "Kids can show speech delays and then later catch up and show no signs of a problem. It's a fluid situation, so we do have to be careful with a diagnosis."
Gault advises parents do what both my family and the Pierces did: Trust your instincts. "Parents should trust their gut. Some pediatricians are very in tune to mental illness; others think of things more as a stage. Parents need to trust themselves and be proactive if they disagree with their family doctor. If inside a parent feels like it's more, then it's legitimate to get a referral."
Trust your instincts But for some, it's difficult to tell the difference between misbehaving and mental illness, and when pediatricians are planting doubts about your parenting skills, it can be difficult to know when to seek help from mental health professionals. For Tom and Amy, who live in a west suburb and asked that their last name not be used, it took a serious breakdown before they could accept there was something significantly wrong with their 9-year-old daughter Kathryn.
"It started in kindergarten, but we didn't know what the problem was. She wouldn't get dressed in the morning, but we thought she was just being a punk," Amy says. It eventually came out that Kathryn was extremely anxious about kindergarten, fearing she wouldn't do as well as the other children.
Kathryn's problems with clothing continued: She would only wear green socks, wouldn't wear coats or long pants no matter what the weather. "She's an only child, so we had nothing to base off of. It was hard to know if this was something really wrong," Amy says.
Kathryn's anxiety skyrocketed after the events of Sept. 11, 2001, when her mother was stranded overseas. "I think that's when she really fell apart, when Amy couldn't get home," Tom says. "In October, we took her to the doctor because she'd hide in the morning and wouldn't come out for school." Kathryn also refused to get dressed for school, and when her parents finally took her to the psychologist, she was naked and wrapped in a blanket.
Amy and Tom met with the doctors to figure out what was wrong with Kathryn, but they also spent time doing their own research. "We kept reading everything we could and we went to NAMI to get information. The more I was reading, the more I thought bipolar, even though the doctors were telling us she had obsessive-compulsive," Amy says.
"I think the doctor was afraid to tell us bipolar because it's a lifelong problem," says Tom. But when they read The Bipolar Child, by Demitri and Janice Papolos, "it was like everything was there, describing our family. We wish someone had told us earlier and saved us all the pain."
Once parents of a mentally ill child begin meeting with a professional, there are a few things they can do to ensure their child gets appropriate help. The most important step is to seek help from a child and adolescent psychologist or psychiatrist. "Parents should ask whoever's making the referral, does this person have any experience with children and with this issue. Ask the doctor this too, when you meet him or her," Gault says.
Child and adolescent psychiatrists spend an additional two years in training, an important consideration in choosing a doctor. The doctor should meet with the child at least twice to get an accurate read, since children are often anxious in the first interview, Gault says. The doctor also should take a thorough history involving the pregnancy, birth, early development and all areas of the child's life.
"It's also important for the professional to take the past history of the parents, how they were parented, their family history, any mental illnesses in the family," Gault says. "We're finding that mental illnesses have a strong genetic basis, and you want a therapist looking for that link."
The professional parents choose also should outline goals and methods of intervention. "Parents should expect comprehensive feedback regarding the diagnosis and treatment, and they should have an idea of a diagnosis, although it may change."
Finding help For our family, it took three therapists and more than a year before we found a psychologist and psychiatrist team in Wheaton we felt would be able to help Anthony. It was important to us that we work with professionals who treated not just the symptoms but our son, who is a bright, engaging child.
You need to be a strong advocate for your child. With the first two therapists we tried, my husband and I realized they were not connecting with Anthony. I called Linden Oaks Hospital in Naperville for a referral.
But finding appropriate help for such a young child was difficult: What works for one child doesn't necessarily work for another. By the time I called Linden Oaks, his obsessive-compulsive behaviors and skyrocketing anxiety levels were making it nearly impossible for our family to function as he exploded in anger and fear nearly every day.
Linden Oaks spent an hour evaluating Anthony and making treatment recommendations. When we started treatment with his new doctors, we had to get over our prejudice about medicating a child to allow Anthony to get the relief he needed. We realized we would never expect him to get control of asthma through sheer willpower. So, our son deserved to have medication to help control the chemical imbalance responsible for all his anxiety.
Both Kathryn and Freddy's parents eventually made the decision to use medications. But it's not the answer for every child. Nor should it be a quick decision.
"There are some psychiatrists who are overly medicine-biased," Gault says. "Before putting your child on medication, you can ask why the medications are being prescribed and if there are any alternatives, like doing psychotherapy first.
"Parents should be free to ask, can we hold off on meds, or to talk about their side effects. You also need to know how it will help and how you'll evaluate if it's successful," says Gault. "But there are some cases where medications are absolutely needed to help the child."
For Anthony, medications meant relief. By the time we agreed to medicine, his anxiety level was at the point where he was afraid to ride on tollways in the car, cross railroad tracks, ride elevators or even sleep at night. He spent many nights pacing the hall outside my bedroom door, convinced that someone would break in if he slept.
Two weeks after starting on medication, he slept, played and enjoyed life like any little boy.
Today, after a combination of therapy and medication, Anthony is like most other 9-year-old boys. But in many ways, because of what he's gone through, he is much wiser than other children his age. He's the one who doesn't want to keep his illness a secret any more; he wants people to know what he's been through and how hard he's worked.
He wants people to learn to treat it just like any other illness, mental or physical.
This is not the end of our road. In fact, it's just the beginning. Chances are very good that while we have hit a good patch with medication, we will have ups and downs as we continue to adjust and re-evaluate how Anthony is doing. As children grow and develop, the medication they are using must be carefully monitored and adjusted.
And I have not even addressed the issues we will face at school, where we can expect to have to sit down with teachers and counselors to navigate and advocate for what is best for Anthony's well-being.
But our family has come a long way and we've found that the best thing we can do now is to encourage other families to get the help they need.
"Child psychiatry is a very young specialty. We've become much more aware that kids do have anxiety and depression. We're much more attuned, as parents and doctors, to not brush stuff off and to look at things more in-depth. We're realizing that children have issues and the earlier they're addressed, the better the outcome is for children and their families," says Gault.
Resources National Alliance for the Mentally Ill (800) 346-4572, http://il.nami.org NAMI offers a wide range of assistance for families dealing with mental illness, including a class specifically geared toward parents, "Visions for Tomorrow." There are brochures, literature and reference materials on all forms of mental illness, including the brochure "An Introduction to Childhood Mental Illness: A Survival Guide for Young Families." Classes and resources are all provided free of charge.
Local health departments and the Illinois Department of Public Health (217) 782-4977 Local health departments have services and community referral resources for children under the age of 18 with a serious mental illness. Check for your local county health department phone numbers in the yellow pages or by calling the number above.
Metropolitan Family Services (312) 986-4000 Metropolitan Family Services offers counseling and assistance for children and adults. Local offices can be located by calling the number above.
Center for Mental Health Services Knowledge Exchange Network (800) 789-2647, www.mentalhealth.samhsa.gov Free information about mental health, including publications, references and referrals to local and national resources.
American Academy of Child and Adolescent Psychiatry (800) 333-7636, www.aacap.org/publications/factsfam/index.htm The academy distributes "Facts for Families" fact sheets dealing with all aspects of childhood and adolescent mental illness.
Web sites www.bipolarchild.com www.bpkids.org www.ocfoundation.org, on obsessive-compulsive disorder www.anxietynetwork.com, on anxiety disorders www.anxieties.com/home.htm, on anxiety disorders
Liz DeCarlo is a writer who lives in Darien with her husband and three children.