Hi, I’m ianthe Chase and we are discussing the topic of mental wellness, mental health, mental illness, and its affects from a parental point. This is a difficult discussion inherent with biases, political incorrectness and sometimes we are just plain wrong. We learn from our mistakes and we communicate so that others maybe don’t repeat the same mistakes.
In the studio with me today I have someone very willing to talk from her parental point of view as a mother of a son with mental health issues. She has asked to remain anonymous so we won’t say any names or give any identifying information. Thank you for sitting with me today to talk and answer a few questions about your journey.
How old are your children?
My son is 37, my older daughter is 38 and my younger daughter is 23.
How old was your son when you noticed that there was something different?
I’m going to say he was 15. I saw that he wasn’t doing well in school. Also, he wasn’t grasping concepts. I really didn’t see that earlier like lets say middle school. Also I saw that he was depressed.
What did the depression look like?
Sometimes anger, sometimes sadness. Sometimes, he just didn’t want to get out of bed.
Was he missing a lot of school?
What were his excuses?
He would say I’m never going to learn anything, I just don’t want to go anymore, and I don’t have friends, things like that.
Now according to what you knew, did he have friends?
So he had friends but in his mind he didn’t have any. How did he get along with your other children?
As they got older, maybe there was a little strife between my oldest daughter and him. Even today, their relationship is a bit strained. I don’t know if it’s because of his illness.
Is he good at describing their relationship?
A little. He thinks she doesn’t like him.
Does he have a reason?
He never gives a reason.
Did you seek a mental health specialist when he first became ill?
I tried but it was hard to get him to go.
How did you go about finding someone?
With mental health, when your child is under 18, you get a social worker, a psychologist and a psychiatrist.
So, who did you call first?
First I called a mental health facility, and their response was basically, “If you can get him down here, we can help him.” They had some really good people. But, in the end, one day I walked into his room and he said, “I want to kill myself, I want to kill myself.” He had a belt, and he had a plan. He meant it. He was just so depressed. So I did what I had to do: I got him into a facility in Modesto.
An in-home care facility?
No, a psychiatric hospital where he stayed for maybe about a week so that they could diagnosis him.
How did he do in the facility?
Not good, not good, not good at all. He thought nothing was wrong with him, and honestly, I, too, thought the doctors were wrong.
Was he on any kind of medication at that point?
Nothing. No medication, and as I talked to more psychiatrists and psychologists they came up with the diagnosis of schizophrenia.
What did that mean to you?
I did not know. I said, “Now you’re wrong, you’re wrong.” That was my first reaction. You are wrong, check this again. This can’t be right. I didn’t know anything about it.
Do you know what they do to diagnose schizophrenia?
I asked myself that later on. From what I gather, it’s a test and there are certain questions, certain long-term behaviors.
At what point do you feel you were informed, that you knew a little bit about depression and schizophrenia?
When he got a very good social worker at Mental Health who guided us through the process. He was going to need social security, and he guided us through that. He guided us through what schizophrenia and depression were for a young person with these disorders. He also explained that there was much help out there for young people under 18 — they could go to a school of their choice that dealt with people with those illnesses.
Did you change his school?
Why did you change his school?
Because ok the school I finally changed him to was a school near Sacramento. It was not only a school but also you live there and you go to school there. It was a program that helped people young people with mental health issues to finish their High School diploma. Unfortunately he did not finish. Because you see the problem was that he had turned 18. Once he turned 18 legally they couldn’t force him to stay, but anything under 18 yes.
After he turned 18 did he choose to leave that facility?
Yes, and it was a good facility.
Where did he go after that?
Well I’m going to be honest with you, After that he came back to Stockton but he went from place to place to place to place. The psychiatrist, one thing he told me is that it is very common for a young person who is about 17 or 18 not to accept their diagnosis and just not be ok with it and just go from place to place.
So he kind of couch surfed?
No he was in different facilities.
Yes. We tried having him live with us but he wasn’t going to be med compliant. Also, the social worker told us, the worse thing you could do is to be the person in charge of his money because you’re his parents. He’s not going to listen to you so when he came back to Stockton it was hard for him to stay at any facility.
So you found him a payee service?
Yes, a conservator.
How did your son interact with your husband in the years leading up to the diagnosis?
There were problems — a lot of anger with him.
With him or with your husband?
Did it affect your marriage?
It was very difficult because there was no single answer. We didn’t know how to react, what to do when he wasn’t med-compliant but needed the meds. Initially, I was in total denial, like this is not happening. For the first 10 years, I felt no, this is just not right, this is the wrong diagnosis, he doesn’t have this problem.
What did you think was going on?
I don’t know. I think denial was my coping mechanism. I knew, though, that I couldn’t stay there.
What about your husband was he in denial?
No. He was not he was like this is what’s going on. But I was like well maybe not but ah yeah.
Do you know what kind of meds he was on?
Initially it was for depression, schizophrenia.
Is there any history of mental illness in your family or in your husband’s family?
I was talking to my daughter the other day, and on my father’s side his mother had some mental health issues and depression. It wasn’t even diagnosed. She was self-medicated.
Especially, I have to add in the African American community.
It existed but it didn’t. It was there but you didn’t talk about it,
I understand, and you certainly, especially back then, you didn’t take medication for it.
Oh no you didn’t take medication for that.
So when you say self medicated how how did your grandmother self-medicate?
Does your son use any substances?
No, surprisingly. Because often people with mental health issues use alcohol or drugs. He doesn’t smoke weed, doesn’t smoke cigarettes, and he doesn’t drink alcohol.
He doesn’t smoke cigarettes?
He tried them, and he said he didn’t like it or alcohol.
I know that a lot of mental health clients for lack of a better word use alcohol to sometimes dampen their symptoms but more usually cigarettes.
Right, and he doesn’t even drink coffee.
He doesn’t even drink coffee?
Oh my goodness, is he a vegetarian and a vegan, too?
No but I know, isn’t that something because mostly it's cigarettes and coffee and he does neither.
After 18, when he was out of the home and had lived in a couple of facilities, when do you think it dawned on him that he needed to pay attention and focus? Has he come to that realization yet?
I would say from the age of 17 — when I went to his room and he was suicidal — it took him about 10 years to realize that when he was off his medication he always felt worse.
So, you were both on the same timeframe. Ten years later, you both came to the same conclusion: This is something you have to work on, and are you working on it together?
Is he still very much a part of the family?
Yes, I’d say that denial is someplace you could go, but you can’t live there. Not just that, but you have to love your child no matter what or who they are. But it’s hard. Like I said, it’s like a death.
A part of him?
The person you thought he was going to be. Maybe you thought he was going to go to college. He’s no longer that person.
So let’s talk about that. When he was a baby, 1, 2, 3, 4, 9, what was life like then with your family and him?
It was ... it was hard. It was hard. If I had to look back I’d say he was a difficult child, he was kind of difficult it was hard.
Did he learn how to read later than your other two children?
No, he learned to read pretty much on time, but his math skills were questionable.
Do you mean like simple math, once he got to division?
No. Once it got to division and stuff he couldn’t get it.
Does he have any other type of disabilities, dyslexia, for example,or learning disabilities?
No, he’s been tested for all of that.
Basically it was his focus that wasn’t allowing him to move on and learn?
It used to be that between 16 and 26 well that’s when people would have a first episode. Now I’ve learned that it does show up as earlier 5.
What would you look for?
Well that’s what I asked the psychiatrist when he said that his youngest person was 3 years old. She saw thing on the walls, she got knives and she wanted to hurt people.
How does your son’s schizophrenia manifest itself?
He hears voices.
Can he turn them off?
He can’t turn them off but the medication helps a little.
Does he regularly go to a psychiatrist? Does he have a group that he goes to?
Before he got sick physically this year, he was doing really good, living on his own, seeing a psychiatrist. But his flu turned into pneumonia, and he had to have surgery. They couldn’t give him his medicines because he was incubated. So boom, he was dropped off his meds. We’re trying to get them back up, but he’s still not there.
Do the meds stop working? Has that happened where all of a sudden he’s on this nice even keel and then the meds stop working?
No, his meds work. Only if he’s off his meds, I will know right away.
So he takes his meds on his own?
Yes when he was doing well.
How does your religion play into this?
We are Muslim we practice Islam. Overall in the big scheme of the religion, it’s not talked about.
Is it talked about in the Muslim community?
Not really. It’s just not addressed and I’ve been wanting to address it, within the community, not just because of my son but because it’s like there’s a belief that this doesn’t happen in our community. This doesn’t happen to our race. It happens to anyone and everyone no matter your socio-economic background, no matter your race or religion.
Has he had a girlfriend or a job?
The first girlfriend that I know about was in Arizona, and he actually went there on his own to visit her. I talked to her and to her mother on the phone. She was so pretty.
How did they meet?
It was in the 1980s on a telephone chat line. I still have a picture of her, and, you know, he still talks about her today. That was 20 years ago. As his mental illness got worse, the relationship fell apart. So many girls liked my son. He was handsome and tall. Girls still like him. But when the mental illness started to get worse, that part of his life was just put to the side. He did have a job, at Psychiatric Health Facility in the front, after he went through the Martin Gipson Center and the Wellness Center and he loved it.
So when he was working he liked it?
Oh yes. He doesn’t like sitting around at home. He likes to be out and going and riding his bike.
So he likes to ride a bike, does he drive?
No he doesn’t drive. He doesn't have a driver's license.
In light of what’s happening in society with people with mental illness and the authority of the police, do you have any fears for your son? Has he ever been violent?
There were times when he would get really, really angry with my husband and me. But he’s never had any interaction with the police — I have talked to him about it and told him what to do in case he does.
What have you told him?
Well I told him to let them know what your name is, show your Id. Don’t do anything. Don’t cause he’s a big guy.
So when he’s having an episode do you think he can stop to remember?
If he is having an episode no.
That’s something that’s a little scary to think about. Have you personally ever been afraid of him?
When he was first diagnosed. Yes.
Was he doing anything violent or aggressive?
He would be aggressive, he would argue. We laugh about it now, but he would want to stay up all night with the music. I mean all night with the loud music. Finally later on I asked him about it. He said he was trying to drown out the voices. That’s why he would stay up all night. Yes, that was a challenge. That was such a challenge. It was like you see your son but you see this whole other person. You think they’re just doing this as a joke or they’re just angry. But they’re not. There’s a chemical imbalance if they’re hearing voices. I’ve asked him. Are these voices telling you to do anything are they telling you to hurt anybody? He said no they tell him he’s not a good person. That he’s not good, that he’s worthless, so he shouldn’t live. That’s what the voices tell him.
Have you done anything in terms of diet and exercise, and what they might call mindfulness techniques?
He’s done some mindfulness training, and he’s tried to do the diet, and some art. He paints.
How does that work for him?
Good because I try to do a little bit with him.
That’s something that you all can do together, that’s so good.
I say just do what ever to stay connected.
And you light up so much when you talk about this.
I’m about to cry. I say to him when to encourage him “ Do what ever it’s okay. It’s not good or bad. It’s just you.
I’m going to tell you what we used to do in our home. New Years we would start a new canvas. Everybody that would come over would add to this canvas and by New Years Day we had something.
I love it. So everyone would add to it.
Yes. That sound like something that maybe you guys could continue to do together.
And, he does like to write.
What does he write about?
You know I read a little bit. It was actually about his illness. “Like these voices in my head they just won’t go away”
He’s very cognizant of what’s going on.
Yes yes. I talked to him yesterday.
Does he know you’re here today?
No he doesn’t know I’m here. He thinks he doesn’t need the medication again. For the first time yesterday, and I haven’t heard this in a long time, I heard a little bit of hopelessness in him. Like why am I this way? And I’m tired of being this way.
So what do you do with that information? Sounds like he’s reaching out, he’s letting you know. So what’s your next step?
Well actually I’m a little ahead in this story let me back up. There’s something called a Step Down. After being hospitalized for a physical illness at St Josephs they don’t just send you back to your apartment. It goes like this. After leaving the hospital you go to Mental Health to be monitored until you are ready to until you’re ready to go to another step. It’s a house and you’re monitored. Then when you are ready you go home. Well he went back to his apartment. Then two days after he called me and he said Mom can you come over? I said of course. He was real depressed. I said are you feeling suicidal? He said yes. I said well I couldn’t leave you here. I said do you have a plan? He said yes. I said no. We can’t leave you here so he goes back to Mental Health he stays there a little while. Then he goes back to the step down process. It’s like a 30 to 90 day program. It’s really good because they do art they do group, gardening; it gets you back into realizing I need to do certain things to stay well you can’t sleep all day. His idea was that he was just going to…..
Take your time
He was just going to say I’m done.
He doesn’t have access weapons does he?
No weapons. But you see when you’re on your own you have your medications that you take yourself. Well he had his medications there.
Do you think he could overdose on those medications?
I think that he could get confused and yes at this stage. He did really well for a whole year. He was cooking I taught him to cook.
Does he like to cook?
He likes to cook. So at this stage he could get confused. He was really depressed.
You have to keep a really close eye on him. You visit him how often?
They have visiting hours which are 4 to 6. We try to go a couple days a week. We’re going to go Saturday .
So when he comes home from that facility he’ll be at home at his apartment?
That’s what we don’t know.
That’s still in the planning phase?
There’s one thing I have to say about this. Mental Health and the parent and the child, shouldn’t make concrete plans with or for the person who has mental health issues. This is what I feel, just learn to go with it.
So there’s a plan but there’s also a plan a, b, c, d, e, f, all the way to z
Yes, just go with it, because their needs are constantly changing. Sometimes I know I’m looking at a 37 year old man without out the skills of an adult. He doesn’t know how to write a check or do a budget. I help him do his grocery list and shop, which I don’t mind. I showed him how to do laundry. When you go off to school or move out you learn those things, he kind of skipped that.
He skipped that.
It makes you a different kind of person. You know what I think; I think there’s really nothing wrong. I think that we are the ones who have the biggest problem and we medicate in order to make that problem not so in our face. I think we are uncomfortable with mental illness. There’s an article I have to find there’s a place in Europe I believe it’s Belgium. Where people with mental illness just live. They’re not hospitalized. They’re on meds if they want meds.
If they don’t: I’m just going to say a name here: They know that Betty stands on the corner and she doesn’t take a bath for 3 weeks. She just stands there and hands out blank pieces of paper You know that’s just her symptom. I believe sometimes we jump the gun with over medicating before we have a chance to get comfortable with the symptom the person is having. In some cultures they treat mental illness a lot differently than they do here. When a person goes, well thy don’t go anywhere physically, but when they go off in their mind to another place and talk to different people and see different things, in some cultures when they come back to themselves they’re welcomed. They are like Oh welcome back. Because you have gone somewhere else in your mind now you’re back.
I’m glad you told me that I was going to remember to tell this. My daughter was at our house and my son had no way of knowing she was there. He called her on her cellphone and said you’re at Mom and Dad’s aren’t you? She said that yeah how did you know? And he said I just saw you there. Well I don’t know how he knew my she was there but he said I saw you. You were there walking around in the house, I saw you. And there are side effects.
Does your son have any side effects that you notice?
Well he’s sleepy a lot, and weight gain and I think he forgets things.
Is there anything that you would like to tell parents?
First if you notice anything that’s different get your child checked out see if there is something wrong. Are they seeing well, do they need glasses? Is their hearing okay? Check his diet. It could be a physical problem.
It could be allergies so you have to check everything out.
Definitely, but check early. If you get a diagnosis learn as much as you can as soon as possible. Don’t go to the meds right away. First do your research.
Do people ever come to you for advice are you comfortable talking to people?
You know I have gotten comfortable talking to people I would say in the last 5 years, so I don’t mind. Yeah, I’m fine and comfortable with it. So if people ask me questions I don’t mind.
I want to ask you what got you interested in this area?
I was in my 20’s my first semester at Delta College. A friend that used to ride with me she lived about 4 blocks from me. She would get to my house in time for us to have a cup of coffee, get in the car, and go. One morning she came to my house and she just acted different. She was a big woman. She sat down. I couldn’t get her to move. It was time to leave for class and I couldn’t get her to come to the car. She was agitated and aggravated. She was sweaty and argumentative. Eventually she went upstairs.
In your house?
In my house and I couldn’t get her to come down by talking her down. I was a little bit afraid. So, I left her up there and I went to her house, her mom’s house down the street. Her Mom came to my place. In fact her Mom called Mental Health. Mom and I believe it was a social worker came and picked my friend up. At that point that was my first interaction with anything that looked like mental illness to me. Now maybe I’d seen it before but it wasn’t up close. She was diagnosed. In fact later that day I spoke with her Mom. Her Mom said I don’t know why she didn’t tell you. You guys were friends she should have told you what was going on with her. She never did. You know the stigma. She didn’t want to be looked at as different.
It’s a stigma
After that, at some point I started working for a Mental Health research program at the University of the Pacific. I was the program secretary for more than 10 years.
I didn’t particularly enjoy being a secretary but it afforded me the opportunity to learn about research and mental health from a behaviorial point of view and a lot of interaction with clients. A few became friends and there are some that although I haven’t worked there in 10 years we still keep in touch. How do you feel about talking about mental illness now?
I just want to talk about it all the time.
Because it helps people to understand?
It helps me, because I’m getting it out and it helps me to stay present. Also, I want people to understand. It helps me to see that Okay, life is not what you thought it was going to be for him but how do you know that this isn’t what it was supposed to be? He’s a special person and we’re very close. Now I actually like talking about it. Something in me opened up.
So you’re not hiding the elephant in the room.
No no more.
Is that freeing?
Oh my God it’s so freeing. Because now you’re just this is my son. This is my son there’s no more hiding no more elephant in the room. It’s very freeing. I think I told you that a lot of parents if they live in California they leave the state.
Really? If they have a child with a mental illness they leave the state?
They’ll go to Utah or Kansas or anywhere or they ship their child away.
They don’t want anything to do with their mentally ill child. When I go to visit my son, they have no family. Family left them because they can’t cope with the stigma. And that’s sad. They can’t cope.
Let’s keep talking that’s the only thing to do to help erase stigma. Bring it out in the open lets put some light on it and lets keep talking.
Thank you so much for taking the step. You sitting here with me and talking about this is going to help because people will listen and say well this resonates with me. It’s courageous that you’re doing this. I knew you had the words.