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It's more than just a disease.
By Shari Strong — Written on Jul 26, 2021
One night in July of 2009, I was notified that my 19-year-old son had been put in jail for threatening to kill his father, with whom he lived.
He had a shotgun with the bullet inserted incorrectly and had beaten his father while yelling things like, "Don't you know what you are doing to me?" and "Quit telling the world everything that I am thinking!"
During the incident, my son had also used the phone to beat his dad. Through a source we believe to be larger than us, he accidentally dialed a relative who reacted quickly to the ranting and called 911.
Once the sheriff arrived, he was able to calm my son down.
He proceeded to tell the sheriff that he was tired of all of his thoughts being put on late-night TV shows for the world to hear. He just wanted his dad and the voices to shut up.
The sheriff had been exposed to many people acting like this and he thought he knew what might be going on with his mental health.
He said my son may have schizophrenia.
I shared with him what I believed at the time — that he was just a kid that had no discipline while living with his father. I also shared that I believed he was using drugs.
I couldn’t have known what I didn’t know then, but the sheriff was right.
To help other parents going through what we did, I'm sharing my story, some advice for fellow parents of children with mental illnesses, and a few tips for people who'd like to support families dealing with a schizophrenia diagnosis.
First, it's important to know what schizophrenia is. According to NAMI (The National Alliance On Mental Illness), schizophrenia is "a complex, long-term medical illness ... that interferes with a person’s ability to think clearly, manage emotions, make decisions and relate to others."
While the exact rate at which schizophrenia occurs is hard to measure, it's estimated that the prevalence ranges from 0.25% to 0.64% of U.S. adults.
I went into complete denial thinking that my son might have such a serious mental illness.
However, while in jail for the weekend, he became belligerent and having something similar to a rageful breakdown.
They transferred him to a hospital in Omaha, the nearest big city to where he was in jail. The hospital was 1200 miles from where I was living at the time.
After finally speaking with the doctor’s nurse, they informed me that there would be a conference call on Tuesday for me to speak with the doctor and my son so that we could determine the next steps.
Because I was in denial, I went on with my normal work and flew to Chicago that Monday as part of my normal work schedule. Our meetings there were being held at the Chicago Tribune Building. Needing a room with privacy and speakerphone, they took me to one of the top floors to make my call with my son and the doctor.
I had a beautiful view overlooking the city and was feeling sad and anxious but, at that time, I felt very confident that now I could actually get him help for what I believed to be his main problem, drug use.
The table was twenty-foot-long and was lined with multiple high back chairs, with 3 speakerphones in the middle of the tables. I had always dreamed of being in a conference room like that, but not for something like this.
I dialed into the conference.
The doctor came on, and I will never forget the sound of his voice or his accent. He introduced himself and then proceeded to let everyone who was in the room with him introduce themselves.
It felt like one hundred people must have been there, as it seemed to take an hour to get through all the introductions. My ex-husband and son were there also.
He proceeded to ask my son a few questions. “Tell us what happened the other day,” was the first.
“I was just tired of my mom telling me that I am a terrible person. Every time I turn on the TV, there they are saying exactly what I had just been thinking! She needs to just leave me alone.”
My eyes filled with tears and my heart sunk into my stomach.
“My mom keeps telling me I need to kill myself,” he said.
I was in complete shock. Of course, I had never told him that — and I never would. That’s when I realized how truly sick my son was. My son has schizophrenia. All I could do was listen and stare at the speakerphone.
I had thought he was a kid that got mixed up with the wrong crowd and had little supervision. I thought he just needed some therapy.
That is where I was just wrong.
Hearing that your son, or anyone in your family, has a mental illness like schizophrenia is shocking and hard to accept. I wanted to just take control, get him to the right doctors, and hope it would go away.
For many parents who learn their child has schizophrenia, it feels like the loss of their child.
I want to be very clear I am not downplaying the death of a child, which cannot be compared to anything else as far as devastation and grief. But there is a very unique form of grieving that happens when we learn something like this.
When an adult child gets diagnosed with a mental illness in such a dramatic fashion, it feels like we lose our child and gain a new one in a matter of days. It feels like we’ve lost the white picket fence dreams, the college hopes, the dream of them having a family and children and living happily ever after.
While that may not always be the reality, it is how it feels to many parents like myself.
What makes it worse is that no one is there to support us.
No one brings a dish over and offers condolences. No one offers to have a service dedicated to them. We must grieve, often, alone. Then, very quickly we must accept that we have a new child that we do not know. We do not know what they need, what they like, or what their life is going to be like.
We have to learn how to relate to and love this new person.
Over the past ten years of offering support, I have taken calls through NAMI and those referred through hospitals, usually right after a parent has been given news like I received.
It is almost always the same call, just with different strengths of emotion. They are filled with shame, guilt and think in extremes, using words like “always” and “never”.
“My son is never going to have a normal life,” they may say. Or, “My daughter is going to take her own life if I am not with her.”
They may have learned that most homes for the mentally ill are not in the best areas of their city or town and “would never dream of letting them go there.” It is very frightening for them.
I always do my best to reassure them that their child can have a life. It is going to be different than what they thought, but they can. As parents, they will need to let go of the control they thought they had and learn everything they can.
Informing them that moving into a halfway home or home with mental illness may be the best thing for them, and it may not be forever. I offer ongoing counseling, but only 1 out of 100 ever call again.
My prayers are that they accept their new role and lean into the systems that are in place.
Many parents and relatives never learn how to deal with their child’s mental illness or learn how they can help because it is so hard. But it is my hope that people will start to understand the reality of having a child with mental illness so that both they and their child can have the best relationship — and life — they can.
If you know someone whose child was diagnosed with a mental illness like schizophrenia, there are ways you can help.
Here are 3 things not to say to someone whose child was diagnosed with schizophrenia:
1. “Just get them therapy.”
If they are an adult child and have no job, they most likely are not on their parent’s insurance.
If they have been diagnosed but not in the system, they most likely do not have Medicaid or Medicare and do not know where to go. Many organizations have waiting lines that are months-long for housing, doctors, and psychologists.
So, what happens in the meantime? It's not as simple as you think.
2. “Just focus on positive things.”
When someone is depressed and they hear that they should focus on positive things, that compounds the problem.
Many go deeper into depression because they cannot control their thoughts already and become more convinced that they are worthless or unable to live normally, or they are stupid. Whatever that self-loathing voice is telling them becomes amplified.
3. “Just take them to the hospital.”
In many states, if the person is over 18, they get to decide if they stay in the hospital or not. They may be your child, but it is not like you can grab them when they are going through a mental incident and convince them to get in the car.
I have learned how to do that with my son, but it has taken 10 years and many incidents to learn how to communicate when he is in that state of mind.
Many of these people leave their homes before their parents or relatives learn these skills. It becomes a nightmare cycle of them returning and leaving.
I could list so many more ‘justs’ that you shouldn't say to a parent whose child has a mental illness.
I have heard over the years and I am fortunate to have become self-educated. I even became a Pastoral Counselor and I have paid to attend many conferences on the subject matter. But so many do not have the means or the education to even know where to start.
So many say that they want to help more, and we need to be more compassionate to those with a mental illness, and I believe them.
Here are 3 ways to support a family facing a schizophrenia or mental illness diagnosis:
1. Educate yourself before giving advice.
There are more resources than most people believe, but it does take some research.
Start with NAMI and search for local chapters, meeting times for parents, and local resources.
Another good resource is SAARDA (Schizophrenia and Related Disorders Alliance of America). This group offers information and support for the family and the client (patient).
Lastly, do an online search for: “[Your City or State] resources for mental illness.” You will most likely find resources that you would not have otherwise known about.
2. Be compassionate.
Be compassionate when you hear a story of someone who has committed a crime and finds out that they had a mental illness.
Do not blame the parents or the family. They most likely have tried and or they just did not know what to do.
3. Listen and do not judge.
One of the best ways to show you’re listening without judgment is to use phrases like, “That must feel so scary” or “I’m so sorry this is happening” and to ask questions like, “How can I help or support your family right now?”
You can also help by offering to do some research.
Just ask, “Can I help you search for local resources?” and be sure to follow through on what you've promised to do.
Supporting a family going through something like this will mean more than you may ever know. People simply want to know they aren't alone and that you aren't judging them or think that they failed their child.
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Shari Strong, MA, ELI-PC is a Pastoral Counselor, Mindset Coach, and author. Her first book, "My Life Begins Next Monday" details her journey from high school dropout to Director at a successful Dot-com to successful entrepreneur. For more of Shari's work, visit her website.