Behind the Scenes - Living with Childhood Schizophrenia

From the moment I met Jani and her family, I was warmly embraced. It didn't take long at all for Jani to take to me. I would be lying if I didn't admit that I was nervous going into this, as I had no idea what to expect. But from the very beginning, I fell in love with this child. Talking to Jani isn't like talking to a 7-year-old. It's like talking to a 37-year-old. She is smart, insightful, observant and has such a great sense of humor.

I met them for the first time on a playground, and the first thing she did was offer me "fried dog food." This is a game Jani plays, pretending to cook with the sand and wood chips she finds outside. She seemed like any other little girl playing on the playground, but within a few minutes, I could see signs of the schizophrenia. Jani started telling me about her rat, Wednesday; her cat, 400; and the world of Calalini, where all her hallucinations lived. I was surprised to see the amount Jani knew and could explain about her illness. She knows she has schizophrenia. She told me she could see things other people couldn't see. Anything I asked Jani about her illness she was able to explain to me in her own words. She explained that she lived somewhere between "our world" and "her world." Through experience, I also learned some of Jani's triggers...things that set her off. The first day I was there, I called her by her full name, January. This is something that apparently she doesn't like. As sweet as she was to me, that was the first time she screamed: "No! Don't call me that. I am Jani!" In an instant, she was a different child. I didn't call her January again for the rest of the week.

I spent a week with Jani and her family and experienced their routine. I would arrive early in the morning as Jani was waking up for school and leave in the evening when Jani went to sleep. We really wanted to get a sense of what it was like for this family around the clock. The family enjoyed having me there, because as I was interviewing them and documenting every move they made, I was also an extra pair of hands to have around and a person to talk to. This summer, Michael and Susan made the decision to split their family of four into two separate apartments so they didn't have to worry about Jani hurting her little brother, Bodhi, in a psychotic moment. It was fascinating to see one family living in two apartments for the safety of their children. It is far from how a typical family lives, but it seemed to work for them. One apartment was structured like the psychiatric hospital for Jani, and the other was just a normal one-bedroom apartment for Bodhi. Michael and Susan split up every night so each child would have one parent, and they rotated nightly.

Every night when I went back to my hotel room, I was extremely exhausted but could not stop thinking about the family because I knew that eventually I would get on a plane and go back to Chicago. It made me sad that I could not be there to help them indefinitely. Because when you are there, even for a short amount of time, you can grasp how chaotic and constant their lives are. Jani constantly has to be engaged to distract her from her hallucinations. So I saw how laborious it is for her parents to constantly keep her engaged. They don't have much time to daydream or focus on anything else in fear that in one unattended moment, Jani could potentially hurt herself or Bodhi. I learned a lot from Michael and Susan. I saw parents who worked hard every day just to keep their kids alive and safe...no matter what it took. After spending a week with them, I couldn't get over how difficult a situation like this is on a marriage. I witnessed some of their good times and some of their bad times, but at the end of the day, I could see love. You could tell that they really respect one another, but more importantly, how much they need each other to make it through the day. In the end, they really lean on one another because only they as parents know what Jani and Bodhi need.

My aha! moment came a few days after I was there, and I saw Jani playing with her 9-year-old friend Becca. Becca has paranoid schizophrenia, and the girls met as roommates in the psychiatric ward. I had goose bumps watching them play. It was amazing to see Jani and Becca running around, giggling and sharing their hallucinations and delusions with the other. I was thankful they had found each other and left wishing there were more children who understood them the way they understood each other.

By the end of the week, I also learned a lot about a mental illness that I had never known anything about prior to this except for the name. I certainly didn't come back to Chicago as an expert on schizophrenia, but I came back with a better understanding of what children with mental illness are living with. From my perspective, I left wanting to bring Jani's story to the surface to raise awareness for her and for all the other children living with mental illness. Now that I know about it, I can say I have more compassion and understanding. Jani's story is out there for a reason, and I believe she is going to make a difference.