Raising a child with mental illness: What I wish I’d known

8 great survival tips from a mother in the trenches.

By Dorothy O'Donnell

When my daughter Sadie (who I wrote about in Dancing in the rain: the story of a bipolar child) first started showing signs of abnormal behavior, I had no idea the kind of journey I was embarking on. Trying to make sense of the opinions of teachers, a parade of mental health professionals, and information gleaned from books and late-night internet searches was often overwhelming. There were so many things I wish someone — anyone — had told me; things that, once I embraced them, made my life easier and my daughter’s path to feeling better that much closer. Each family is unique, so what works for one parent or child may not work for another. Still, there are some general, often overlooked, tips that can aid families struggling to help a child with emotional issues. Here are a few of the essentials I wish I’d known — along with resources for support and information — to help you on this journey.

1. Find the right expert

It’s important to find a qualified mental health professional — ideally a child and adolescent psychiatrist — who can detect the sometimes subtle nuances that distinguish one disorder from another. For example, I didn’t realize how many overlapping symptoms bipolar disorder and ADHD share. If Sadie had been diagnosed with just ADHD and treated with stimulants, it could have triggered a manic episode. The same thing could have happened if she had been misdiagnosed with depression and prescribed an antidepressant without a mood-stabilizing drug.

A good doctor will devote several hours to gathering facts about your child’s physical, emotional, and medical history, learning about mental health problems and drug or alcohol abuse experienced by other family members, and reviewing reports or comments from school staff. She should also spend time with your child and provide a written report after completing her assessment. It’s important that you’re comfortable with your doctor’s treatment recommendations. If you’re not, or if you have doubts about your child’s diagnosis, seek a second opinion.

To find a good psychiatrist, start by asking your pediatrician or family doctor for a recommendation. The National Alliance on Mental Illness (NAMI) has state and local chapters that provide links to a variety of organizations that can help you locate a mental health professional in your area.

2. Find the right therapy

Studies show that children with bipolar who combine medication and therapy have the best outcomes, but my own assumptions about kids and therapy might have derailed her treatment. I thought Sadie was young when she started therapy in kindergarten, but I’ve since learned that even preschoolers can benefit from the right type of therapy. For young children who may not be able to articulate their feelings, play therapy works best. Older kids and adolescents often benefit from psychotherapy, including cognitive therapy, which helps them understand how negative thought patterns contribute to emotional and physical feelings and develop strategies for managing them. Because living with a mentally ill child is stressful for siblings and parents, you should also consider family therapy.

Before committing to a therapist, be clear about what you want to accomplish. Come to your first meeting prepared with questions, such as what kind of progress you should expect, and how it will be accomplished and measured.

3. Team up with the teacher

Although Sadie didn’t qualify for special education services until second grade, her teachers were willing to work with me to help make her more comfortable and productive in class even before she was diagnosed.

The more information I shared about Sadie’s challenges and strengths, the better. (You may feel concerned about labeling your child or opening up to strangers about sensitive topics, but  your child’s teacher can’t help if he or she doesn’t know what’s going on.) Scheduling a quick meeting with her teacher at the beginning of each new school year got our relationship off to a positive start. Volunteering in class and on field trips gave me the chance to see how Sadie was functioning in the school environment, how her behavior compared to that of her peers, and whether certain situations were causing her problems.

Like many kids with bipolar disorder, ADHD, and other psychiatric disorders, Sadie has significant executive function problems that make it difficult for her to organize, process, and access information efficiently. In addition, she’s often in a state of sensory overload that makes her hypersensitive to noise, bright lights, and routine transitions. Simple steps, such as letting her sit in the front of the classroom and allowing her to check in with the counselor when she's having a rough day, help her feel less overwhelmed. I also email her teachers when she is struggling at home or going through a medication change that could affect her behavior in class.

4. What to say and how to say it

Once I accepted Sadie’s diagnosis, it was a relief to have an explanation for symptoms that often looked like bad behavior or the product of poor parenting. Because there’s still so much stigma attached to mental illness and disorders like ADHD, figuring out how to talk about your child’s condition — and how to help her talk about it — can be tricky. It’s important to develop an approach you're comfortable with.  As soon as we got the diagnosis, I told Sadie that she had bipolar disorder, and she has always been comfortable talking about it. But many parents I know avoid labeling their children. Some prefer to explain their child’s differences with a simple, kid-friendly description such as: “Your brain is like a race car engine, but sometimes it gets stuck. That’s frustrating and makes you angry. And when it goes too fast, it’s really hard to focus.” Other parents help their kids come up with their own words to describe their condition.

Deciding who to tell and how much to reveal is also a personal choice. I’ve found that being open about Sadie’s condition with friends, family members, and school personnel has had mainly positive results.

5. Find your posse

Many school districts have special education PTAs (known as “SEPTAs”) for parents of children with learning differences and other disorders. I put off joining the one in my community because it didn’t cater specifically to parents of kids with bipolar disorder. That was a big mistake. There weren’t other families with bipolar children in the group, but I discovered I still have plenty in common with other members. Children with ADHD, autism, sensory issues, dyslexia, and other disorders often have similar symptoms and face the same struggles in school: weak executive function, difficulty controlling impulses and emotions, and social problems. No matter what their child’s issue, parents share the same sense of isolation and agonize about whether or not to try medication. In addition to providing support and friendship, this group of savvy, knowledgeable parents has become my go-to source for information on everything from doctors and therapists to schools and specialized programs. If your school district doesn’t have one, find tips for forming a special education PTA on the national PTA website.

6. Track your child’s moods

I wish I’d been more consistent about tracking my daughter’s moods and symptoms early on. Over the years, I’ve learned that recording things like sleep problems, changes in her energy level, and any new or unusual behavior provides valuable information for me, her treatment team, and school staff. Charting her moods helped me learn to recognize signs that she was becoming unstable, as well as potential triggers. For example, I now know to expect a surge in her irritability and anxiety levels several weeks before the start of a new school year. Arranging a quick introduction to her new teacher before school kicks off helps ease some of her stress.

Having a record of Sadie’s moods also makes it easier for her psychiatrist to determine if a medication adjustment is necessary. And it helps her therapist work with her on specific problems as they come up. If your child doesn’t have a diagnosis yet, charting symptoms will help any professional who evaluates your child. You can find a variety of free mood charts online at The Balanced Mind Foundation, or simply jot notes in a journal or on your smartphone.

7. Stay connected

At first I avoided forums for parents of kids with pediatric bipolar disorder, but I now visit them regularly when I have questions about medication, alternative therapies, school problems, and other matters related to her illness. Even when I’m not comfortable participating in a forum, I find that just reading posts from other parents is helpful. While I’d never make a treatment decision without first consulting her psychiatrist or therapist, I’ve found that forums on The Balanced Mind Foundation’s website  are a great place to learn from others dealing with the same issues. The website also provides online support groups, articles, brochures, and a bounty of other useful information, including tips for educating school staff and treatment guidelines.

8. Diagnosis — a moving target?

There are no easy answers when it comes to diagnosing and treating kids with mental disorders and, let’s face it, it’s an evolving field. Not only can children with the same diagnosis have very different symptoms, but the same illness can have radically different symptoms and strains. For example, there are three distinct types of bipolar disorder: bipolar I, defined by manic or mixed episodes (mania and depression occurring together), or by severe manic and depressive episodes; bipolar II, characterized by depressive episodes with milder mania; and Bipolar Not Otherwise Specified (BP-NOS), when symptoms don’t precisely meet the criteria for either bipolar I or II.

Not only that, but your child’s diagnosis can change. Sadie’s first doctor diagnosed her with bipolar II. Her current doctor believes she has BP-NOS.

As psychiatry continues to evolve and science reveals more about mental illness, diagnosis and treatment options continue to change as well. For example, the latest version of the Diagnostic and Statistical Manual of Mental Disorders  (DSM-V) used by mental health professionals to diagnose patients, includes a new condition, “Disruptive Mood Disregulation Disorder (DMDD),” to describe kids whose main symptom is consistent, severe temper outbursts. In the past, kids with these symptoms were often incorrectly diagnosed with bipolar disorder — or not diagnosed at all and unable to get help.

To further complicate matters, the National Institute of Mental Health recently shook up the psychiatry world by withdrawing its support of the DSM. The NIMH is developing its own diagnostic manual that will emphasize the biological roots of mental disorders and rely on genetics, imaging, cognitive science and other information to diagnose them instead of the DSM’s symptom-based approach.

This constantly shifting landscape means it’s essential to keep up with the latest findings and, just as important, to make sure your child is seeing a mental health professional who keeps abreast of the new research as well.

The journey continues

Sadie is in a much happier place today — she has friends and many passions. Yet just when I think I’ve got everything figured out and we’re in for smooth sailing ahead, things change again. A long streak of stability will be disrupted for reasons neither I nor her treatment team can always explain. And I know we’re likely to hit more bumps in the road as she grows and matures. The jury is mixed about how kids with mental disorders like bipolar disorder and ADHD fare as adults. Some get better, others continue to suffer and can even get worse. My learning curve may not be as steep as it once was, but I don’t think it will ever end.
 

Dorothy O’Donnell has written about travel, health and business for a variety of publications. Her essays on motherhood have been featured in the Marin Independent Journal, Mothering and on KQED radio. She is working on a memoir about raising her daughter.