Story by Michelle Roberts

Is Santa Claus real?”  “Where do babies come from?” “What happens when we die?”

As a parent of a now 7-year-old boy and 5-year- old girl, I always tried to pre­pare myself for the day those inevitable questions would come.

I never expected that I would have to answer an even more difficult ques­tion first.

“What’s wrong with Daddy?” my son asked a year and a half ago.
I was driving him home from kindergarten that sunny afternoon. The question came like an arrow from the back seat.

I sat there frozen. He repeated his question.

“Mommy?” he said more urgently. “What’s wrong with Daddy?”

My 37-year-old husband, Dennis, a kind, bright computer scientist, was diagnosed with schizoaffective disor­der in the fall of 2004, though he had suffered from its effects since he was a teenager. The illness is said to be a hybrid of schizophrenia and a mood disorder, either unipolar depression (as in my husband’s case) or bipolar disorder.

Unlike people with schizophrenia, those with schizoaffective disorder usually appear normal between episodes of illness and do not become more seriously disabled over time.

At times throughout his life, my husband has enjoyed long periods of stability and success; however, when I was pregnant with our second child in 2001, he began to pull away into a world of delusion.

As our children grew, my hus­band continued to decline. He lost his job, which only made his symp­toms worse. At one point, he came to believe that the FBI was tracking his movements. Medication helped with the psychosis, but did little to ease his other symptoms.

My son began to notice that his father wasn’t acting normally. Dennis was constantly sad and fatigued, sleep­ing or eating either too little or too much. He was paralyzed by indecisive­ness. The man who once read Gödel, Escher, Bach: An Eternal Golden Braid by Douglas R. Hofstadter for fun couldn’t concentrate long enough to read the newspaper.

As his spouse—and the person to whom all the family responsibilities fell—my understanding of mental ill­ness had a long, bumpy road of anger, hurt, fear, and loss. How could I make sense of it all for a young child? How could I address the ques­tions coming from the back seat of our light blue minivan?

Experts from the American Academy of Child and Adolescent Psychiatry recommend that parents be aware of their child’s needs, con­cerns, knowledge, and experience with mental illness. When talking about it, parents should be straight­forward, communicate at a level that’s appropriate to a child’s age and development, and have the discus­sion when the child feels safe and comfortable.

Previously, I had sought the advice of my husband’s doctors, who offered to be present when I had the conversa­tion with the kids. But since the ques­tion had come unexpectedly and could not be put off, I decided to talk to my son at home, where I knew he would feel most secure

“I’m so glad you asked me about Daddy,” I told our son. I stopped the van and got him a special snack. When we got home, I asked him to get out his crayons and paper. While he ate his chicken nuggets, I drew a brain.

More than anything, I wanted our son to understand that his father was a very good person who could not help what was happening to him.
I told my son that mental illnesses are diseases that affect the brain, which is where we control our feel­ings, thoughts, and behavior. Some­times mental illnesses can make people say things or do things that they would not normally do if they were feeling healthy.

“Like when Daddy wants to sleep all the time?” he asked.

“Yes,” I said, “And when he seems sad and doesn’t talk.”

I took a red crayon and divided the brain I had drawn into four sections.  I pointed to the first section and told my son that that was the part of our brain that makes us feel happy.  I pointed to the second section and said, “That is the part we feel sad.”  The third section, I told him, is the part of the brain that tells us what’s real and what’s not. And the fourth section, I said, was “the part of the brain where we can imagine things that aren’t real, like movies and television shows.”

I said most people’s brains can switch back and forth normally between the four sections, “but the switch in Daddy’s brain sometimes gets stuck on sad or in the section that makes us think things are real when they aren’t, like monsters in the closet.”

Luckily, my husband’s behavior had never been violent or abusive. He simply withdrew into his internal world.   Worried that my son might think that he is responsible for his father’s flatness, I told him that when Daddy is quiet, “it’s not because he doesn’t love you, but because his brain is stuck” I told him that even though Daddy’s brain doesn’t always work right, he didn’t have to worry because I would always be there to take care of him during the times when his father couldn’t.

As I braced myself for more questions, my son grinned, downed his last chicken nugget, said, “I get it” and asked if he could go watch SpongeBob Squarepants.

The academy says that young children need less information and fewer details because of their more limited ability to understand. Older children may want more specifics and may worry about their safety.

Teenagers generally can handle much more information and usually ask more specific and difficult ques­tions. Because they often talk more openly with their friends than with their parents, they may already have mis information about mental illness.

Generally, experts say that the more information children and teens get, the better they can cope with their feelings, which can include anger, jealousy, sadness, fear, or even embarrassment.

According to the National Mental Health Association, children of ill parents often worry that they will inherit the illness. They need lots of reassurance that they are “normal” or okay. If they do have a problem, they need to know that many other people have problems, that all problems can be discussed, and that most problems can be solved or at least managed.

Since that first conversation with my son, many more questions have emerged. So has great joy, as my husband has taken significant steps toward recovery. My children under­stand that no one or no family is perfect, but what makes us strong is how we deal with the challenges we’re given.

It’s not always easy, of course, but I see confidence in them.

Not long ago, again in the van, my son, now 7, noticed a homeless man on the street talking to himself.

“Mom?” he asked. “Does he have what Daddy has?”

I told him I wasn’t sure, but that it was possible.

My daughter, now 5, chimed in, looking a little scared: “What’s wrong with him?”

“Oh,” said my son. “His brain is just stuck. He doesn’t have a family to take care of him when it is.”



Story from Schizophrenia Digest Summer 2006

Michelle Roberts is a freelance writer based in Portland, Oregon. A recipient of a 2004–05 Rosalynn Carter Fellowship for Mental Health Journalism, she specializes in mental health and family issues.