A decade ago, I was grieving the loss of my adult son, Ben.
No, he hadn’t actually died physically; instead, his life had come to a complete halt, mentally and emotionally. All of his dreams for his future and ours had been stolen by a devastating chronic brain disorder called schizophrenia.
Ben was an adult when he was diagnosed, and it affected our entire family as we had to adapt to our new reality. My sweet, smart, gentle, popular, energetic son had become someone people thought of as the odd man out in the neighborhood, walking around in a bathrobe, humming his own voice. And we, as a family, had changed forever.
After his diagnosis, Ben worked with his doctor to find a treatment plan that would help him through multiple oral medications and monthly injections. After years of chaos and confusion, we finally found a treatment that would reduce Ben’s symptoms and bring him back to us, in part.
At the end of my book, Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope , I wrote that I had to fully accept the fact that my son would never work again. But today, thanks to a supportive treatment plan, I can happily eat some of those words. Ben, who has severe paranoid schizophrenia and has been through 8 psychiatric hospitalizations, 2 arrests, and 5 years in a group home away from his family, is now a proud taxpayer. He works as a waiter in a restaurant and is praised by customers in online reviews. He lives at home with us and is involved in family life. He has friends, drives a car, pays his bills on time, and has completed nearly 60 college credits.
It feels like a limited miracle—a miracle of (almost) mediocrity.
Here are four key pillars of supportive therapy that have supported Ben on his schizophrenia journey:
Treatment: Treatment plans are unique to each individual and should therefore be developed in collaboration with a healthcare professional. Finding a treatment plan that works can include medication, therapy and other elements.
Structure: Helps us all, but especially provides comfort to those whose thoughts are scattered.
Purpose: Vital to everyone’s mental health, not just those with mental illness. For Ben, this meant that his desire to live and thrive was always heightened when he was employed. Volunteering, school and now his job changed everything for him.
Love: Building relationships that provide love and support, such as family, friends and community.
We’ve come a long way together. But are we out of this? Not really.
There’s so much more that needs to be done. For example: enabling treatment choice, facilitating and funding the process of getting help, educating employers about mental illness and reducing stigma and increasing respect.
There are golden moments that remind us that he is “there” and has always been there, slightly obscured by the mists of his illness. Little moments of normality, like Ben laughing with us, buying his sister the perfect birthday present, or getting down on the floor and playing lovingly and comically with his nephews, sustain us.
After each day, we feel like we’ve bought another 24 hours of a somewhat normal life.
But we’ll take it. Because we know the alternative for Ben – hospitalization, homelessness, prison, or worse. And we don’t want to lose what we have, dangerous as it is.
Rebuilding, or what I call supportive therapy, is far from guaranteed. But it is possible. And it starts with faith, a vision, and a greater attention to the potential of those with mental illness – respect for them and their families.
Let’s all continue to work hard to restore that hope for people with schizophrenia and their families, and to change the expectations of schizophrenia.
A Random Thing Might Affect My Schizophrenia
I try to walk every day. Sometimes I pick up trash on the side of the road. You never know what you’re going to find.
I didn’t pick up a bag today to put my trash in because I felt like the sidewalk would be clean since the last time I picked up trash. But today I found a hammer while I was walking.
I picked up the hammer and held it for a moment and thought: There are several school bus stops on this road. There’s a high school a few blocks away. I kept walking with the hammer because I didn’t want any of the kids to get hurt by the hammer.
Sometimes I feel like Boo Radley in the movie “To Kill a Mockingbird” is a recluse. I don’t like feeling that way, so I try to be nice to my neighbors, say hello to them, and smile.
I kept walking to the intersection with the hammer in my hand and went back as usual. I just don’t usually carry a hammer.
Usually when something different happens in my life, my mind starts to wander. I wouldn’t call it a hallucination, I would just call it an image in my head. In this case, I saw a police car pull up in front of me. A police officer told me to put the hammer down and get on my knees. He also told me to put my hands on my head. I thought that this could all happen while my neighbors were watching me.
When these images or thoughts come up, I ignore them, but that doesn’t stop them from happening. Maybe it’s just me being a quiet dreamer.
Finally, I got to the top of the hill where my apartment was and waved to the maintenance crew driving golf carts. I told them that I had found the hammer on the street and that I didn’t want the kids to get hurt. They took the hammer and drove away. I did this thinking that I could still be arrested. But the police never came. I also thought that someone might have stolen my hammer, which was in my toolbox in my apartment. When I got back to my apartment, I checked my toolbox, thinking that the hammer should be gone, but it was still there.
These thoughts don’t mean that my medications aren’t working. I understand that my medications don’t always cure everything, and sometimes they don’t cure all paranoia. But I can ask myself questions to determine if this is reality or my “unrealism.” Schizophrenia is like a heavyweight fight, but it doesn’t knock me out. It can cause things inside me that I have to ignore or overcome, but I won’t respond to a delusion unless I have real proof that it’s real.
Signs That a Teen May Have Schizophrenia
When a child or teen first starts showing signs of mental illness, it’s not always clear what the diagnosis should be. And when it comes to mental illnesses like schizophrenia, parents and loved ones may feel even more uncertain about whether the symptoms they’re observing fit the diagnosis.
According to the National Alliance on Mental Illness (NAMI), approximately 2.4 million Americans live with schizophrenia, a chronic mental illness that affects a person’s ability to think clearly, manage emotions, and relate to others. It can also include symptoms such as delusions, hallucinations, and lack of motivation.
Schizophrenia most often begins in the late teens and early 30s (usually earlier in men than in women), and its incidence in children under the age of 13 is about 1 in 40,000. For children and teens, this means that their parents, guardians, teachers, or loved ones may be the first to notice the symptoms.
“For example, sometimes teens isolate themselves or have periods where they struggle in school,” she said. “Also, teens may try substances that can cause them to have [schizophrenia-like] symptoms.”
But it’s important to seek the right diagnosis so your loved one can get treatment and support. We asked them to share some signs they’ve noticed that they or their loved one is experiencing schizophrenia.
Disinterested and Isolated
Your loved one may lack goals or seem disinterested in what’s going on in their life and the world around them.
“He’s withdrawn. He’s kind of withdrawn from his family. He’s just staying in his room, not wanting to eat, talk, watch TV, or do anything else,” Missy wrote.
Strange Ideas and Delusions
A delusion is a belief in something that is false, but the person experiencing it believes it to be true despite widely accepted evidence to the contrary. A person with schizophrenia may have ideas and theories that seem strange and unrealistic. For example, this could mean confusing a movie with reality or thinking you can read minds or predict the future.
Irrational Paranoid Thoughts
They may think they are being watched, or that someone is trying to poison them, or that their home is bugged. Loss of insight or not realizing that they have a mental illness is also a common symptom of schizophrenia.
“I have schizophrenia, and the first symptom I noticed was being paranoid, but I didn’t really see it as a symptom because I had a loss of insight,”
Poor Performance in School
They may have trouble concentrating, keeping up grades, or being interested and invested in school.
“Imagine sitting in a classroom and the teacher is talking. But instead of listening to the teacher, you are listening to the voices in your head. I didn’t know at the time that they were voices. I thought I was just having vivid thoughts and visions,” Hammer wrote.
“Dulling” of Personality and Emotions
A person with schizophrenia may have a “blunting” of emotion, meaning they do not express their emotions on their face or with their voice, or they may appear unresponsive. Dubron described this symptom as a blank stare or a blank expression.
Hearing Voices
Hearing voices and other auditory hallucinations is the most common symptom of schizophrenia, and teens can certainly experience it.
“I started hearing voices when I was 16. It started with voices that sounded like I was in a crowded restaurant, and over the years, the voices evolved into four distinct male voices,”
“[My loved one] told me that when he gets really depressed, he can hear what people are really thinking about him in their head. Then he turned to me and said, ‘That happens to you, doesn’t it?’”
Talking to Themselves
If your loved one is hearing voices, they may start talking back to them and to an observer, it may seem like they’re talking to themselves. In a video he made for WebMD, Hammer explained what’s going on inside their head when it seems like they’re talking to themselves.
“It’s interesting to live in the city and have schizophrenia, because I’m walking down the street and I hear voices. So I think about the person talking to me in my head. But then, I start talking back to that person. And then maybe I’ll come around, look around, and it’s like five people are looking at me,”
If you notice these signs in your teen. These signs could be signs of other mental health issues, like depression or anxiety, or they could be a sign that your teen is going through the emotional roller coaster of high school. It’s a good idea to talk to people they interact with regularly, such as teachers, coaches, or close friends.
“What’s important to assess is whether the symptoms they’re experiencing are causing them to function poorly—that is, whether the symptoms are significantly impacting areas of their life (socially, academically, at home).”
If your child is experiencing psychotic symptoms, you should talk to their pediatrician or primary care doctor so they can potentially rule out other medical issues. Then, it’s important to get evaluated by a psychiatrist and find a therapist who specializes in psychotic disorders.
She suggested that parents should approach their children with love, compassion, and patience, because parent and family involvement can have a significant impact on the success of treatment. Educate yourself about your child’s triggers, and don’t forget to take care of yourself and reach out for support.
“Stability and routine are key to managing schizophrenia symptoms for affected individuals of all ages. Teaching children good self-care and health habits is recommended because diabetes, heart disease, and unhealthy lifestyle choices (smoking, lack of exercise, not going to the doctor) are more common in individuals with schizophrenia.”