Here's What It's Like Having A Child Diagnosed With Schizophrenia

There were voices coming from all sides, saying all sorts of different, negative, and terrible things. Telling her to hurt nobody else but herself and me.

Schizophrenia is a chronic, severe, and disabling mental disorder that affects 1.1% of adults in the United States.

For most people, symptoms (which are wide-ranging) usually begin in the mid- to late-20s; however, it is possible for early-onset schizophrenia to occur in teens 13–18 years old and very early-onset schizophrenia to occur in kids under age 13.

Maggie was one of these teens. She was diagnosed with schizophrenia in March 2011, when she was only 15 years old. This is the story of her journey over the past six years, as told by her mom, Maureen. (Both asked only to be identified by their first names and that any identifying places be omitted.)

I had known about the voices for some time, but it didn’t really become a serious problem until they became constant.

The voices would yell at her and tell her to do things. They’d tell her that she was ugly, that she was taking up space in the world, and that she didn’t have a right to live. They would tell her to hurt herself and me, but nobody else. She worked in a restaurant kitchen at the time, and the voices would tell her to pick up the knife and do things with it. She ended up leaving that job.

Initially, Maggie would hear them for short periods of time. But they grew louder and meaner and more constant, and one night her sister came to me saying I needed to talk to her. So I went upstairs.

When she first told me what the voices were saying to her and what they were telling her to do, my first reaction was to actually yell at them. I told them to leave. I said, “Stop talking to my daughter like that, stop telling her to do these things!” Of course, that wasn’t effective at all, and Maggie told me that if I kept yelling like that, I’d have to leave — it was not helping.

She still went to school the next day — she felt up for it — but I picked her up at noon to go to the emergency room.

It just so happened that we had gotten referred to a psychiatrist a while back, and we were supposed to see them on this day. But when I called that morning, they said that they wouldn’t see us because Maggie wasn’t an established patient. They told us to go to the emergency room, so we did. We waited for about five hours before a resident psychiatrist was able to see us, and they recommended that Maggie be hospitalized. I agreed to it, but it took about another 10 hours for them to find a hospital that would give her a bed — there wasn’t a single hospital that would take a teenage girl hearing voices, and the woman helping us was looking at hospitals as far as 100 miles away. We live in a large metropolitan area, so there are lots and lots of hospitals around here.

When she finally found one, it was about 4 o’clock in the morning. Maggie was transported there by ambulance and I went after her. She didn’t want to go. She was yelling at me, telling me it was the worst day of her life. She was so upset. But I had to sign her in — it was an involuntary admission. I’ve had eight kids, but one of the hardest things I’ve ever done in my life was sign those papers. I didn’t think she’d ever speak to me again.

The hospital’s psych ward had men and women there, and people of all ages — one girl was as young as 13 or 14 — but not one person had schizophrenia.

I didn’t realize that it wasn’t an ideal place for her to be in until a couple of days after she was admitted — she wouldn’t sign the paper giving me permission to visit her. When I was finally let in, I saw that nobody else had schizophrenia, or was hearing voices. They were all there for drug use, anorexia and other eating disorders, and cutting. So it wasn’t very helpful when she’d do group therapy sessions, since no one else there had the same symptoms as her.

After four days, Maggie was miserable and nothing was helping, so I met with the doctor and asked if she could be released. They didn’t want to let her go. She wasn’t better, and they wanted to continue to observe her on her meds. But eventually we worked out a deal where she’d be released as long as she went to an intensive outpatient program.

The one we found was for like three hours a day, five days a week. All the patients were teenagers, too, so that was good. But she was still the only one with schizophrenia.

By the way, at this point, none of the doctors had mentioned schizophrenia yet. Her diagnosis was depression with auditory hallucinations.

When you’re hearing voices — especially when they’re so loud — you really begin to withdraw, and that’s what happened to Maggie. She developed fairly acute anxiety and depression, and would just go within herself, sitting on the couch for hours and hours. She also had psychosis. And given how strong her episodes and the voices in her head were, I thought “depression with auditory hallucinations” sounded stupid — it had to be more. So in one of our meetings with the doctor, I finally asked if Maggie had schizophrenia, and he said, “Yes, I think so.”

I hated that they didn’t use the word “schizophrenia,” that they didn’t want to call it what it was. To me, that gave the word more power. In my mind, depression with auditory hallucinations sounded like something temporary — you know, people can go through bouts of depression and then come out of them. But schizophrenia, that doesn’t go away at all.

When Maggie was diagnosed, I went through a grieving process. I felt like I had lost my child. In that moment, she was gone and I didn’t know if she’d ever be the same again. I didn’t think she’d be able to go to school, to have a future. It was devastating.

We watch a lot of football — it’s one of Maggie’s passions — and she once used it to describe her schizophrenia really well.

One night we were watching football. We were getting really into the game, and something happened that made us all start yelling at the quarterback. In the middle of it all, Maggie said, “Mom, you know how right now there are all these people yelling at the same time — yelling different negative things to the quarterback? That’s how the voices are.” Coming from all sides, saying all sorts of negative, terrible things.

There have been times, for example, where Maggie would sit next to me and just squeeze my hand really hard. She would do it for a while, and once I said, “Maggie what’re you doing? My hand hurts.”

“Mom, they’re telling me to cut your hand off. So I figured maybe they’d just shut up if I did this,” she told me.

I said, “Squeeze away.”

Maggie was in the intensive outpatient program until June. She wasn’t getting any significant help and told me she wanted out, and I agreed.

Group sessions weren’t working for Maggie — she needed one-on-one therapy — and we only met with the psychiatrist once a month. It wasn’t enough, and I told that to her psychiatrist in a meeting. I asked if there were anywhere Maggie could go where there were other kids her age who were also hearing voices. To be honest, I didn’t think I’d hear back from her when I left that day, and I didn’t plan on coming back either. But a week later she called me back. She told me about a program that was only six months old, called RAISE — Recovery After Initial Schizophrenic Episode. It was a joint study between the National Institute of Mental Health (NIMH), Columbia University, and the University of Maryland. And luckily, there were openings in the hospital near us.
RAISE really was a life-changer.

Up until we got into the RAISE program, there was a sense of hopelessness. Nothing was helping, and I just felt like screaming at people, including the psychiatrists. “Don’t you get it?!” But when we got into RAISE, the attitude was that you can recover. They believed that you’ll always have schizophrenia, but that you can also recover and have a normal life with it. And that’s something that I think a lot of psychiatrists still do not believe.

The study’s meant for people who recently started having psychotic episodes, and it’s intense. The first time we went, we met with a psychiatrist, a general therapist who oversaw everything, a therapist who dealt with social and codependency issues — a lot of people with schizophrenia self-medicate with alcohol and drugs — and a therapist who dealt with work and school issues. We initially met with all four of them twice a week, which is amazing, and then over the course of the two-year program, the frequency of visits dropped gradually.

Having such intensive help was fantastic. Since we had previously only been going to see a doctor once a month, that would be our only chance for changing the medications or modifying the dosage if there was a problem. And despite all the different groups of antipsychotic meds, Maggie never got full relief from her symptoms. There were also terrible side effects caused by the meds, and Maggie got all of them: incredible weight gain (I mean like 30 pounds in a month), tremors, lockjaw, nightmares. She wasn’t able to sleep on some nights, and then there were other times when she was always sleeping.

But at RAISE, we met with a psychiatrist so often that we were able to change her meds whenever Maggie wanted to — we were considered “part of the team.” That was really key for Maggie; she was speaking up for herself, and she felt more in control of her treatment, which I think helped her stick to it more than she probably would have.

For me, the program consisted of a huge educational component. It was phenomenal — I had no idea how little I knew about schizophrenia. I knew nothing, and it was shocking.

The program really taught Maggie how to deal with her voices, and when we got out, they had become more of a background noise — they weren’t as mean as before unless she was really stressed. Of course, they were still there, constantly. Right now, she’s on an antipsychotic medicine, an anti-anxiety medicine, and an antidepressant, and all of them help her deal with the voices. I really credit the study; it changed the course of Maggie’s life, and I don’t know if she’d be alive without it.

Maggie’s time in the RAISE study wasn’t easy — we faced many obstacles. For one, Maggie was hospitalized again after jumping out of her window.

The voices in her head started telling her to jump out of her window. I was making dinner when it happened, and I knew she wasn’t having a great day. She was upstairs in her room when he heard the crash. My husband went out and just yelled, “Maggie, what did you do?!” He called me out and there she was crawling on the ground. She had hurt her ankle.

That incident, along with her running away a few times and a growing sense of hopelessness that treatment wasn’t working, really made me afraid that she was going to kill herself. Thankfully, RAISE had a 24-hour phone that allowed me to get in touch with help. I was able to speak to her doctor and she agreed that hospitalization would be best. So in October 2011, about eight months after her first hospitalization, we signed her in one more time. It was absolutely awful, and this time they had to call security; she was literally being dragged away, kicking and screaming.

Psychiatric hospitals are not fun; not even the best of them. You have no rights, you can’t go outside, and they’re just very restrictive.

When Maggie was hospitalized again, she went back to being the only one with schizophrenia. Thankfully, during her stay there, a therapist from RAISE was able to visit her. And about four to five days after she was admitted, I was meeting with a doctor to talk about her release. Again, they didn’t want to let her go, even after I told them about the study. So I agreed to bring her to an outpatient day program at the same hospital. Of course, I had no intentions of taking her, and I never did. We had the RAISE program, and on the same day she got out of the hospital, we went to see her doctor.

We also decided Maggie could go back to high school for her junior year, but she faced challenges there as well.

In the spring of 2012, we felt Maggie was well enough to go back to school. It was her junior year of high school, and they really advocated for her to go on what’s called home and hospital care, where they send a tutor to your home. This allowed her to miss days from school without affecting the school’s absenteeism scores. For about a quarter of her junior year and some of her senior year, Maggie was in this program. And for part of it, she needed to be, but she also didn’t need to be out of school for as long as they wanted her to be. At one point, one of the administrators said Maggie didn’t have enough seat time to graduate, despite having all As and Bs in her classes. I was prepared to fight for her the whole way, especially when they said she had to go to summer school, but thankfully, she had a guidance counselor who really helped advocate for her, too.

Lots of teachers would say she missed too many classes, and they would threaten not to pass her. One teacher in particular was really adamant about it, even though I’d sent them an email with a doctor’s note explaining the whole situation. Then one day, Maggie went up to him and said, “Listen, I have voices in my head telling me to kill myself and I really don’t need the extra stress of you telling me I’m absent too much.” The study really helped her learn to speak up for herself, and she told me that he took a step back after that. Then, in the spring of 2013, she graduated on time.

After we left RAISE, it was like climbing a mountain trying to get anything done. When people would find out about Maggie’s illness, they would only tell her about everything she couldn’t do.

Coming out of the RAISE program, Maggie’s doctor promised to stay with her until she could find somebody capable of helping her. The doctor was also in charge of all the psychiatric residents at the hospital where we participated in RAISE, and its medical school, so she knew a lot of psychiatrists in the state — she trained a lot of them — but she still couldn’t find somebody. None of the private practice psychiatrists would take Maggie because she was functioning well — like I said, her voices had become background noise — but she still obviously had symptoms.

I don’t think a lot of psychiatrists believe that’s possible — that people with schizophrenia can live a normal life — and they’re not going to pretend they do. Fortunately, this mentality is slowly changing.

Eventually, in fall 2013, we ended up getting involved in another study at a nearby research center. We found out about it through another doctor who worked on the RAISE study, so we knew that we could trust him to understand where she was in her treatment.

Soon after she started at this research center, that doctor left for work overseas, and let’s just say that the interim doctor was not helpful. Maggie had just started nursing school and he actually told her to get her money back — there was no way she could ever be a nurse, he said. I was FURIOUS. Thankfully, he was only her doctor for a couple of months.

But despite the hardships, Maggie has thrived.

Maggie has always been an incredibly compassionate person, and in many ways, fearless. She’s also so well spoken about her illness; the both of us will talk at conferences, just to give doctors the other side. Like, we’re glad you’re doing all this work, but this is what it’s like from our side of the table. Maggie’s done grand rounds at hospitals, where she’s spoken to rooms full of doctors; about 150 to 200 of them. She speaks to medical students every year. And the National Alliance on Mental Illness (NAMI) asked us to go to Capitol Hill for a presentation, where a lot of congressional staffers attended to hear about these first episode programs — there was a bill coming up, and we were hoping to get funding since these programs have been shown to be so effective. So just seeing her blossom like that and listening to her speak about what her life has been like, it just makes me so proud.

Oh, and she actually finished nursing school.

She’s developed a stronger support system.

Through the research center, Maggie has been able to volunteer for different research studies. She’s seen a couple of other doctors there, like right now, she’s seeing a psychiatrist and a therapist regularly. They’ve had our different family members come in, too. It’s been extremely helpful for her sisters and her brother to be there — it means there’s always somebody she can trust.

Nursing school has also helped her to grow a new circle of friends, because in high school, people she had known since kindergarten basically blew her off. Not everybody knew about her schizophrenia — she was very picky about telling people — but they did know she was having depression and anxiety issues. It really hurt me that they’d just let her go. She lost a lot of friends; a lot of her social life, and because of that she didn’t feel comfortable leaving the house. When I would talk to other parents whose kids were sick, I’d find out the same thing had happened to their kids, too. It was tough. Nursing school helped her grow that network again. Of course, some of her friends have really stayed with her too, and that’s been tremendous as well.

And she’s given me so much hope for her future.

I think that over the past six years, Maggie and I have grown much closer. Although we’ve kind of walked through this together, I know that Maggie has done all the hard work. She’s always been able to recognize when she’s having a hard time, so she’s fully capable of knowing when she needs her meds, and she’s able to take them whenever she needs them without overmedicating. That, along with everything she’s done up until now, has melted away all the fear I had, and given me hope. I truly believe that Maggie will have a wonderful life.

So if there’s anything people should know about schizophrenia, it’s that there is hope, and that recovery is possible.

All the time, people get so many things wrong about schizophrenia. They think people who have it are dangerous, that they’ll end up in a psych hospital or out on the street, or that they’ll stand out in a crowd, and look and act crazy. In reality, it’s just like any other disease — be it cancer or diabetes or epilepsy. It requires vigilant care, that’s all. I have met so many successful people with schizophrenia. They are college professors, doctors, and lawyers. Having a life with schizophrenia is possible.

If you have a child who has schizophrenia, don’t give up. Keep looking until you find a doctor or program that will give you hope. They are out there, and the research really is growing every day. ●

To learn more about schizophrenia, check out the resources at the National Institute of Mental Health here.

And if you need to talk to someone immediately, you can reach the National Suicide Prevention Lifeline at 1-800-273-TALK (8255). Suicide helplines outside the US can be found here.

Follow along at from Oct. 2 to Oct. 8, 2017.

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