Living with Schizophrenia

[Upbeat Guitar Music]

Mike: Welcome everybody to Avoiding the Addiction Affliction, brought to you by Westwords Consulting, the Kenosha County Substance Use Disorder Coalition, and by a grant from the State of Wisconsin's Dose of Reality Real Talks, reminding you that opioids are powerful drugs and that one pill can kill. I'm Mike McGowan.

Mike: There are some parenting challenges that don't show up in the guidebooks we all consume when we have children. My guest today, Chrisa Hickey, ran into that head-on when her son, Tim, was diagnosed with schizophrenia at the age of 11, and that is when her mental illness advocacy work began. Chrisa Hickey is an author, speaker, and an advocate specializing in supporting families raising children with serious mental illnesses like childhood onset schizophrenia, childhood onset bipolar disorder, severe depression.

Mike: She also began her blog, the Mindstorm in 2009. Ms. Hickey has been writing and speaking about serious mental illness, the challenges of raising special needs children, the complexities of finding quality mental healthcare in rural America and mental health advocacy for well over a decade.

Mike: She's published articles in Redbook, bringchangetomind.org, and npr.org, and has been interviewed on CNN, NPR, the Ricki Lake Show, and dozens of podcasts including this one about her advocacy work, mental health stigma, healthcare legislation, and parenting. Welcome Chrisa.

Chrisa: Thank you. Glad to be here.

Mike: I'm so glad you could be here. I have a million questions. So let's start with talking about your family right off the bat and your son's early years before his diagnosis. You had a son before you had Tim, right?

Chrisa: We have a child before we had Tim. Yeah, Alex is our oldest. And Tim was we became trained to be foster parents and licensed to be foster parents.

Chrisa: And Tim had siblings already in the foster care system and so was be going to be heading that direction to foster, to adopt. So we actually brought him home from the hospital the day after he was born.

Mike: That's awesome. I read the history, I wondered something. Did you ever look into, did any of Tim's siblings end up with a severe mental illness as well?

Chrisa: Interesting you ask. So we knew that Tim's birth parents both had cognitive disabilities. Which we, it's, they weren't genetic, they weren't, it wasn't fraud or anything, so we weren't concerned about that. We did find out later that Tim's maternal grandfather was severely bipolar.

Chrisa: And one of Tim's siblings is bipolar.

Mike: I'm certain that when Tim started going through stuff, your first thought was not schizophrenia.

Chrisa: Oh no.

Mike: What did you think at first?

Chrisa: Originally it was funny because Tim didn't really talk at the same rate as other kids did.

Chrisa: He wasn't really an early babbler or anything. Our oldest was basically speaking from the moment he left the womb.

Mike: (laughs)

Chrisa: So it was difficult for us to gauge. But Tim was prone to fits that we thought were much more than like terrible twos. It was like a rage. And so we went to our pediatrician and the pediatrician said, wasn't really that concerned about the speech thing.

Chrisa: Has an older sibling that does the talking for him, which Alex did. So wasn't super concerned, but when he started 4K we said to the teacher, we're worried that there may be something going on with him neurologically or cognitively. If you see anything that you think is we should be looking at, let us know.

Chrisa: And she called before the end of the first day.

Mike: Wow.

Chrisa: So we knew it wasn't just us. And then we started down the testing path. So we tested for everything genetically, and not genetically. We were going down the autism route. And the neuropsychologist we were working with said that Tim has the earmarks for autism.

Chrisa: And ironically, we found out later the earmarks for childhood onset mental illness and childhood and autism overlap 80%. They were going down that route, but they couldn't say he was autistic because he had excellent eye contact and a good sense of humor. So we went with P. D. D. N. O. S., pervasive developmental disorder, not otherwise specified.

Mike: (laughs) I love those.Yep.

Chrisa: Which is my six least favorite letters in the English language. And we went down that path as we were going. By the time he was about nine, though it became apparent to us and the clinicians that there was some mental illness going on. By the time Tim was nine, he was out of public school in a non-public school that specialized in kids with autism and other cognitive issues.

Chrisa: And was seeing a psychologist and a psychiatrist. And our psychologist kept saying, Tim's got something serious going on, but she would never put a name on it. And at one point when he was just about 11, she said, Tim probably should be hospitalized. And we said, why? And she's I just think it's serious enough.

Chrisa: She wouldn't again, give us a diagnosis. So we were like if you can't tell us what it is, I'm not gonna stick a kid in the hospital for nothing. And then he attempted suicide.

Mike: At 11.

Chrisa: At 11. Yeah. He attempted suicide to stop the voices in his head. So in the hospital he was in there. The first day was 45 days. I couldn't believe how long it was.

Chrisa: And the psychiatrist there told us, basically said, your son has schizophrenia. And we said no damn way. Kids don't have schizophrenia. There's no way schizophrenia. We pulled him out AMA (laughs) and then 45 days later after that, he attempted suicide again. So then we knew we really had something going on.

Chrisa: But it was a long path from two years old when he was raging and not really talking and things like that, to acting out in school, to having to go to a private school till we finally got this diagnosis. And we went through quite a bit of, like I said, testing and specialists and stuff to get to it at 11.

Mike: Nobody really knows right?

Mike: What causes, it's a brain disease, but nobody really knows.

Chrisa: No, nobody knows. There are some genetic markers that if you have a parent or something with schizophrenia or bipolar disorder, you have a higher chance. But ironically, when we reached out, we had some contact still with Tim's birth grandparents.

Chrisa: And when we reached out to them after he was diagnosed, they cut off all contact with us. We never spoke to them again. So I think it was a family secret that they weren't willing to talk about.

Mike: Yeah. I love the literature that uses the term genetic environmental brain chemistry mix. It's okay, there you go. (laughs)

Chrisa: Yeah. They say trauma can induce it, if you're genetically prone to it, things like that. But, I'm not sure what trauma Tim had been through as a toddler.

Mike: What was it like then when you finally ended up with the diagnosis? What was that like for your family?

Mike: Because at that point you had to go, okay, this is long term.

Chrisa: Yeah, so we started trying to learn about it 'cause most people, if you don't live with it, you don't know anything about it.

Mike: Only what you see on tv.

Chrisa: Yeah. Which is grossly wrong (laughs).

Mike: Right.

Chrisa: Or you hear about in the news, people talk about the weather being schizophrenic and that's absolutely not what it is.

Chrisa: So we started doing some research. Luckily, this is 2009, so the internet's, becoming a little more advanced than just chat rooms and there's e-commerce is starting and so I started searching the web for other parents. And the closest I could find was an organization which has been merged into several others called the Child and Adolescent Bipolar Foundation which was as close as I could get to talking about serious mental illness in children.

Chrisa: And I jumped in and said I need to talk to someone about support. So I was not the only parent there who had a child of some age diagnosed with schizophrenia or schizoaffective, but we were definitely in the minority. But we understood what everyone else was going through. The huge mood swings, the rages, you try a medication and then they grow and then the medication stops working. So it was a place where I could talk to other moms. We actually got to the point where we had a, it, it took us several attempts, but we had a really great child psychiatrist in the Chicago area where we lived at the time. Who would say to me, I wanna try this, but go talk to your moms and see what they say about it.

Chrisa: See if any of their kids have been on it.

Mike: That's awesome.

Chrisa: It was great. He was great. He's very old now. He still practices one day a week, believe it or not. But he was really great at partnering with us, which is really what you need as a parent. Is someone who's going to partner with you.

Chrisa: I remember the day he said to me that he'd never seen a case as severe as Tim's so young. And I was like, gee, thanks for that. He goes no. This is how we're gonna learn about it together. And that's really the way he approached it, which was great.

Mike: At the time, I would imagine most of the medications, if not all of them were oral.

Mike: And I've worked with kids my whole life, that couldn't have gone smoothly.

Chrisa: Oh no. It's funny I've said to some people before in the past, in a way, we're lucky that Tim was diagnosed so young because he really didn't have a choice on whether or not to take medication. It was take your medication or consequences. (laughs)

Chrisa: So he was really in the routine and by the time he was 18, 19 years old, taking medication every day was routine. What wasn't routine was the fact that we changed it so often. We went through everything from trying different combinations. Most medications aren't tested on children.

Mike: Right.

Chrisa: So you have no idea what the dosage or how it's gonna react with them. Some kids have paradoxical reactions to medications that adults don't have. So for example, some things like Seroquel, which is pretty common, would actually make him hyper, not calm. (laughs) We went through about 27 different med combos between 11 and 20, just to try and get him to the point where he was pretty stable and we really didn't get him fully stable until he was about 19.

Mike: And there had to be sometimes where the meds he was taking, he didn't like the side effects.

Chrisa: No, so by the med that got him really stable ironically was Clozapine, which is pretty, the gold standard for schizophrenia, but has some pretty horrific side effects. And he ended up later in life in his twenties, say he just couldn't deal with the side effects anymore.

Mike: And now fast forward, he's fine. Well, he's living with it, but he's on a, what is he on now?

Chrisa: He's on a long acting injectable. Yeah, so he takes a long acting injectable. He gets it every three weeks. But it's just changed his life. He doesn't have to take pills anymore.

Chrisa: Our relationship with him as an adult, you can imagine how hard it is to transition, for a normal kid, from the kid relationship to the adult relationship with your parent. Now imagine it's the parent who's nagging you every day to see whether or not you've taken your meds.

Mike: Yes.

Chrisa: That's all I was the nag.

Chrisa: And with the injectable, now it's nothing. It's, he doesn't have to worry about counting pills, doesn't have to worry about getting it filled. He goes to the doctor once every three weeks, gets a shot and that's it.

Mike: And you don't have to lay awake.

Chrisa: Yeah.

Mike: So let me talk about you for a minute, if that's all right.

Chrisa: Sure.

Mike: How do you handle the anxiety of today might be the day where something goes awry? That had to be incredibly stressful.

Chrisa: Yeah. It's different now, but looking back on it, it was we spent a lot of years. My husband, Tom and I have been married for 35 years.

Chrisa: A nd Tim's 30. So that tells you how much of our life we've been dealing with this.

Mike: Wow.

Chrisa: But we got to the point when he was in his teen years where one of us had to be with him 24 hours a day.

Mike: Wow.

Chrisa: And, it was my husband, became a stay at home parent. We had to do the math and he stayed home.

Chrisa: So we could do this and it was basically, for us, it was just trying to get from day to day as we went through this, because we have two other children. Alex is three and a half years older than Tim. Diana is a year younger than Tim. And so they were going through the tribulations of having this incredibly unstable sibling at home.

Chrisa: To the point where, like I said, Tom and I were playing tag team roommates, basically. One of us would be with Tim and then the other one would spell them as much as we could. But our kids, his siblings, we missed every track meet Alex was in, every marching band performance that Alex was in.

Chrisa: Every time, we had a thing set up where if things were really bad with Tim, 'cause he could be very loud and very violent. When he was in a rage, our daughter had permission, our youngest to go to a neighbor across the street, no questions asked, don't even tell us. When the whole thing was over we knew where she'd be. But it was that bad to the point where we had all these safety plans with the other kids. And eventually when Tim was about 14, it was recommended and we decided residential treatment was the best option for him. So he went in just right before his 15th birthday into residential treatment and was there till he came out right before he was 20.

Chrisa: About five years. It was funny, our entire family had been living on this tenuous string and when Tim went into residential care and we could all exhale, everybody emotionally fell apart.

Mike: Oh, I bet.

Chrisa: So there was a lot of therapy for the rest of us while Tim was in residential treatment.

Mike: Yeah. And Alex I read ended up PTSD.

Chrisa: Yeah, and Diana, yup. Yeah. Diane was diagnosed with pretty severe PTSD. Yeah, Alex, bless Alex's heart. Didn't really rebel until older. Alex was the one that was trying to help us keep everything stable.

Chrisa: And when Alex was about 21 she started to rebel, moved outta the house. Did you know all kinds of things that, bad things and originally came back around, the kind of rebellion you might normally have. Alex, it came out that way after, after Tim was outta the house, which was rough.

Mike: D id I also read that your oldest child started thinking about, what am I gonna do when you guys go away and I have to take care of him?

Chrisa: Yes. Alex and our daughter-in-law Kathy got married seven years ago, almost eight years ago, and they told us about a year into their marriage they weren't gonna have any kids because they figured they'd have to take care of Tim.

Mike: Wow.

Chrisa: And so we've done everything to make sure that doesn't have to happen, which is great because now we have two grandsons. (laughs)

Mike: That's awesome.

Chrisa: So yeah, when we basically said, we're gonna make sure that's not your life. This has been your life, your whole life. It doesn't have to be the rest of your life.

Chrisa: The interesting part is of our two grandsons, we have two, they're five and three. Our youngest grandson thinks the sun rises on one side of Tim and sets on the other.

Mike: Oh, awesome.

Chrisa: They're just, they're the best buddies and he's a great uncle.

Mike: I read, he reads at what about a seventh grade level?

Chrisa: Yeah, at a seventh grade level.

Mike: And enjoys being a kid. Enjoys his phone and gets around on an electric bike.

Chrisa: An electric bike, yeah. Which is hard time of year. We just had snow.

Mike: I was just gonna ask you, what does he do during the winter?

Chrisa: Yeah, we just had snow a couple days ago. Our first snow.

Chrisa: Ugh. And in the wintertime it's a combination of bumming rides from... Tim is very social, which is ironic. We laugh that the most extroverted member of our family is the one with a serious mental illness. And so Tim, we moved up to Door County where we live now after Tim was out of residential care because we figured this was a better environment for him than the suburbs of Chicago.

Chrisa: So one thing we haven't talked about, Tim being adopted, Tim's also biracial. So he's a six foot tall black man with schizophrenia. Not a great thing in Chicago. (laughs)

Mike: You're afraid.

Chrisa: Yeah, a little bit afraid. He had friends and they would wanna go downtown and I would literally, I have a friend who's a cop in Chicago, or she was, she just retired and I would write her name and badge number and cell phone number with Sharpie on his arm when he would go down to the city.

Chrisa: 'Cause I was afraid if something happened or he got agitated and a cop stopped him, at least they would see it and maybe that it would keep him from getting injured or getting arrested.

Chrisa: Moving up here. My husband's from this area. His whole family's been here for several generations. So we moved up here exclusively because it was the right environment for Tim.

Chrisa: So now Tim lives in his own apartment about two miles away from us. He has lots of friends. He's got his bike. When it's snowing, he's bumming rides from us or everybody else in town. Or we actually have a service called Door 2 Door here. Where you make a reservation, they'll pick you up and take you where you need to go.

Chrisa: But he's got the whole county dialed in. We go places and people say, Hey, Tim and I don't know who they are.

Mike: (laughs) There are advantages to looking different, right?

Chrisa: That and the fact that he's just so outgoing. Everywhere he goes, he is like a 13-year-old forever.

Mike: Yeah.

Chrisa: He introduces himself, he talks to people, they get to know him.

Chrisa: He's got like 900 Facebook friends. No joke it's weird to me that he is so incredibly outgoing and, he's got really great friends. His best friend. He's never really been fond of his peers. I don't know why it's hard to, he's always liked older people. His best friend is a retired homicide cop from Madison.

Chrisa: Who never had kids of his own. So they pal around together and they go fishing and they go on trips and they go to dinner and we spend time with them. They're like extra parents, him and his wife to Tim. It's really great. It's, this was, we're lucky that we had the ability to move to an environment where we knew he would be safe.

Mike: I found in my life that once people understand something, they are much, it's when they don't understand it, that they have difficulty with it because they put their own judgment on it.

Chrisa: Yeah.

Mike: And I heard, or I read, again, I love the term, you talk about mental illness not being a casserole disease.

Chrisa: Yeah, it's funny (laughs) it made it all the way to the, to ABC News was talking about it at one point. I'm like, Hey, there it goes. Yeah, we talked about it as, when we lived in Chicago area, we had neighbors where, your kid breaks an arm. Someone gets sick. We had unfortunately a child in the neighborhood that had cancer.

Chrisa: Everyone rallies around and does errands and brings casseroles and when they ask where Tim is and you say he's in, the psychiatric hospital, they stay awake mostly 'cause they don't know what to say. They don't know what to do. No one brings you a casserole when your kid's in the psych hospital. (laughs)

Chrisa: It's unfortunate, but like you said up here, they do. In fact, one of the things I love about living up here, before Tim started on the injectable, he was still on Clozapine. He had stopped taking it because he had some side effects that were just couldn't live with them. And I hadn't seen him in the flesh in three or four days.

Chrisa: So one day I got two or three phone calls from people around town saying, Hey, saw Tim today. He seems a little off.

Mike: Awesome.

Chrisa: Is he okay on his meds? So I drive over to Tim's house and there's Tim washing his sheets in the bathtub because, he's having some hallucination and he was off his meds and this community told me about it because we all look out for each other which is one of the reasons we moved here.

Mike: Yeah, I love that. And you also found support in other organizations, right?

Chrisa: Yeah, we found a lot of support in different we've done a lot of work with NAMI, which is great. NAMI's a great organization. We've got organizations around here, charities that nonprofits that have taken Tim in as a volunteer, which has given him kind of a sense of purpose and a couple different places.

Chrisa: And, like I said, I don't know what I would've done all those early years with Tim without CABF, the Child Adolescent Bipolar Foundation. It was just it's merged into some other organizations now. But it really, I say this, honestly, I don't know that Tim would be alive or that my marriage would still be intact if it hadn't been for them.

Mike: I was gonna ask you a couple more if you're okay with that.

Chrisa: Yeah.

Mike: In my career. A lot of marriages don't last. And even though the parents still co-parent, it's so stressful.

Chrisa: Yes.

Mike: And we tend to take it out on one another. So you navigated that though.

Chrisa: Yeah, it wasn't always easy. Like I said, for a number of years we were roommates as we tag teamed monitoring Tim and making sure that he was, everybody was safe. It was hard too, 'cause I worked, so Tom took a lot of the brunt of what was going on in the house. But we decided that if we were going to get through this, we would have to divide and conquer. We purposely set, Tom went to doctor's appointments.

Chrisa: I went to IEP meetings. So I did work outside the home with some advocacy and other organizations to get to know what they were doing and what they could help offer. And Tom was closer to making sure the other kids didn't feel isolated. So we decided to do this divide and conquer.

Chrisa: Like I said, it was really rough after Tim went into residential because it's amazing. You don't think. You think you're holding it all together and things are okay, and then when the stress is gone, your body just collapses and your psyche collapses. And it was that was the rough period. That was probably when we might've split, actually was after he went into residential.

Chrisa: But like I said, everybody went to therapy, everybody in the family and we managed to come through it. And it really has helped us figure out. We went through, my husband went through a health scare about seven years ago, a pretty serious one, and we all got through that because we already had the coping skills we'd learned from dealing with Tim and the therapy we had after.

Mike: Wow. And you found a buddy on the Ricki Lake Show.

Chrisa: I had several. Yeah. So the (laughs), I wish it was still on, still somewhere on YouTube, 'cause I would love to watch it again.

Mike: Oh, it has to be somewhere.

Chrisa: It's gotta be somewhere. But we actually got contacted by a producer on the Ricki Lake Show and she had read the blog and one other person's blog who I know.

Chrisa: And there were four of us moms that had all been part of Child Adolescent Bipolar Foundation support groups. And we had never met, but we relied on each other for support. I can call or text you at any time, day or night kind of support. And so they flew us all out to LA and it was the first time we'd met on the air.

Chrisa: And it was fabulous. It was one of those things where meeting the people in person, meeting them in person for me just cemented the fact that we're in this together forever. And we have done things since, and that was, oh gosh. I don't know, 10 years ago we were on the Ricki Lake show.

Chrisa: So in those 10 years our kids have grown up and we still, unfortunately, one of the four of us has passed away. But and one of the four of us has gone through some other trials in her life where she's a widow now. But we have been there to support each other, flown out to help each other.

Chrisa: One of the moms had a kid who ended up in residential treatment in Chicago. She lived in LA, so we were like the aunt and uncle who would pick her up on family weekends 'cause it was too far to come from LA every month. So we created our own little family. In fact a lot of us, more than just the four of us, but there's a bunch of us from those days.

Chrisa: We call ourselves the crazy moms 'cause we know what it's like to deal with the crazy in our lives and we still are for each other to this day. I got a phone call from one of them, just a week or so ago we were talking about something that was going on with her son. So we really.

Chrisa: I don't know how parents did it (laughs) before the internet, because that's what brought us all together was the support. And it really does, like I said, our, my doctor would ask, go ask the mom group and see what they say. And without all these women, and it's probably women because we're more likely to talk to strangers than men are. (laughs)

Chrisa: But if it wasn't for them, like I said, I don't know that my marriage would be intact or my son would still would be alive.

Mike: When you speak, you blog.

Chrisa: Yeah.

Mike: When you're out there, what do you hear from other... parents must just want, they'll listen to you, but my guess is there's a line to talk to you afterwards.

Chrisa: Yeah.

Mike: What do you hear is their most, what are they challenged with?

Chrisa: Yeah. I hear it everywhere. I even hear it when people at work and other places find out that I do this. For parents though, the one thing that parents always say is, they don't understand how this could have happened, or they don't understand how they did this to their kids.

Mike: Yeah, the guilt.

Chrisa: And so I have a different perspective because Tim's adopted, so I don't have the guilt that I gave this to him genetically. But the biggest thing I learned, but we had lots of guilt about, what did we do wrong raising him? He's been with us since he was 19 hours old what did we do wrong?

Chrisa: There's a lot of guilt around parents when this happens to their kids, that they think it's something that they did. And unfortunately, society is great at reinforcing that.

Mike: Yeah.

Chrisa: NAMI was founded by parents, especially moms who were tired of being blamed for giving their kids schizophrenia.

Chrisa: So if that doesn't tell you all you need to know, the guilt doesn't do anything to help us help our kids. And what I say to them is, if your kid had diabetes and needed to go on insulin shots every day, would you feel guilty about it? If your kid had heart disease and had to get a heart transplant, would you feel guilty about it?

Chrisa: If your kid had cancer and had to have chemo and be in the hospital, would you feel guilty about it? No, then why are you feeling guilty about something that is a brain disorder, a chemical imbalance in the brain? It's not like there's something you did to your kid that said, you were withholding of love and so now your kid has schizophrenia.

Chrisa: No, that's not how it works. (laughs) This is a chemical imbalance, that's why chemicals help them get balanced. And the guilt isn't gonna do anything for you. It's gonna make it harder on you to help your kid, because if you can't be whole and yourself and take care of yourself and understand that you won't be able to help your child.

Chrisa: So that's the number one thing I hear is the parents' guilt.

Mike: And I would think also, where can I go? You live in a rural area, and we just spoke at a conference about... You're in one of those places that has a deficit of help.

Chrisa: Yeah, we have one, we have two now. We just got a new one. We have two prescribing psychiatrists in the entire county of 38,000 which is a very wide, if you've been up here in Wisconsin, it's a very big county. It's long.

Mike: For those of you in other states, it's the thumb in the mitten.

Chrisa: It is the thumb that sticks out. Yeah. And makes Green Bay. We're right above Green Bay, that peninsula up there. And it's difficult anywhere that you're even remotely close to a rural area on most of Wisconsin has this problem.

Mike: Yes.

Chrisa: Where there isn't...

Mike: Most of America.

Chrisa: Yeah.

Chrisa: But, I think people in the flyover states here, we really feel it the most because you figure if 1% of the population has schizophrenia, that means there are several hundred people in Door County that have schizophrenia. And I can guarantee no one's seen any more of them than my kid.

Chrisa: So I know there's another gentleman closer to my age actually, who's been living up here his whole life, who has schizophrenia. And people know him up in the northern part of the county, but most people don't see these people or bipolar disorder, much larger percentage of the population.

Chrisa: We don't really talk about it. And even when you talk about therapy, we rely heavily, again, the internet on Talkspace and other therapy that you can get remotely because the waiting list right now for a therapist anywhere in Door County is about 18 months.

Mike: Yep.

Mike: So now just let's pause there for a second.

Chrisa: Yeah.

Mike: For those of you listening, think about that a minute. You're having a crisis and you're told to wait a year and a half. What other disease would we do that with?

Chrisa: Yeah, I know. And it's one that will can kill you. People don't think about the fact that mental illness kills more children through suicide then every childhood cancer combined every year.

Chrisa: It's funny I got to know, Judith Warner is an author. She worked for a long time for the New York Times, and she's written several bestselling books. She wrote a book, oh, about 15 years ago called, We've Got Issues. And the point of the book was she went to her publisher and said, I'm gonna write this book about how parents are not really willing to parent their kids anymore.

Chrisa: They're just medicating 'em so they don't have to worry about, the childhood ups and downs. And when she started doing the research, she found out that was absolutely the opposite was true. That parents were trying really hard not to medicate kids, but there were a segment of children that had these serious mental illnesses that no one was taking seriously.

Chrisa: And doctors didn't want to, think back to our first psychiatrist psychologist, who didn't wanna put a label on our son,

Mike: And that's somebody who works with it.

Chrisa: And I'm thinking if you don't, first of all, if you don't label it you can't bill for it. So I don't know why you're doing that.

Chrisa: And second, that, you know you need a code, to be able, yeah. You need a code. And the second the other part is if you don't start treating what it is, forget about branding him for life. If he has schizophrenia, he's got it for life.

Mike: Yes.

Chrisa: I'm not really worried about branding him at 11, 10, or 11 years old with schizophrenia and worrying about how that's gonna affect him at 30.

Mike: Yeah.

Chrisa: I'm just not. So I actually, when the book came out I read it and I got into this. We have had this pen pal relationship now for about 15 years where we write back and forth and sometimes she reads articles and she sends them to me and asks me my opinion. It's cool. But it was really interesting to watch someone who is an investigative journalist for a living, go through the investigation and find out she was absolutely a hundred percent wrong in her hypothesis.

Chrisa: And I think that's another thing that a lot of people don't understand is that we talk a lot about kids on medication and there's a lot of stigma around, especially foster children on medication. And if you've ever been a foster parent, now mind you, we were, before we knew what was going on with Tim, we were still foster parents.

Chrisa: Our youngest daughter was a foster child, we didn't put back in the system. And if you meet these foster children, they have serious psychological issues from what they've had to deal with, usually from a very young age. Our daughter, our youngest, had an eating disorder at three. A lot of it was because of, she was born severely premature and she was born addicted to cocaine, and she was in the NICU forever.

Chrisa: And then right into foster care, and it just, man, this is how it manifested itself was food was the only thing she could control as a toddler. So she developed an eating disorder. And if you think about it from that perspective. These foster kids are dealing with so much.

Mike: Yeah.

Chrisa: And giving 'em a stigma on top of that, of saying, and then we're pumping 'em full of psychiatric medication.

Chrisa: No, we're not pumping 'em full of it. But a lot of them can help benefit and actually reach adulthood by using it and not being one of those statistics of the kids that fall out of the system or and end up with addiction issues because they're self-medicating. I have another friend, a schizophrenia advocate who lives up in the La Crosse area.

Chrisa: His name is Cody Green, and Cody was the child of a person with schizophrenia and developed a huge addiction issue as a teenager self-medicating. Ended up in prison at 19 years old and came out, managed to get clean, and now does tons of advocacy work for people with schizophrenia because he doesn't want this to happen to a kid like it happened to him.

Chrisa: And as long as we start thinking about medication as a negative, as we keep thinking about it that way, I don't know that stigma of medication is, I think, as strong as the stigma of mental illness.

Mike: Yeah. And look at all the stuff Tim had to be on before he found a once every three week shot, and who knows what's coming down the pipe if we allow research to actually be done.

Chrisa: Yeah. If we actually let research to continue to happen, and we think about it as, and now we know it's much more prevalent today to talk about schizophrenia being onset at in the teen years. Than it was before. It used to be, by the time they get to college in their early twenties no, that's when they can't stop it anymore.

Chrisa: Hide it anymore. It's it really is. It starts in those adolescent years, and if we can help these kids reach some kind of stability before they hit adulthood Tim's lost almost 40 IQ points since he was five. And a lot of that is because he spent so many years unstable that there is actually evidence you can see in a CAT scan of his brain where he's lost gray matter in his brain.

Chrisa: So by not medicating him and helping him get to that chemical stability, it actually hurt him cognitively. And I think that's what we need to remember when we're talking about these kids. We see a lot of kids that, there's other kids out there that are incredibly smart, that have schizophrenia.

Chrisa: Other adults, the people that have written books, that have schizophrenia, they're incredibly smart. These are people that, and imagine what it had already done to their brain. Imagine how smart they would've been if they had been stable longer.

Mike: I'll let you go with this. What's the most fun thing you do with Tim?

Chrisa: (laughs) We live in rural Wisconsin obviously. Tim and I have eight chickens.

Mike: Ah!

Chrisa: And they're in my backyard. I have a coop in my backyard and Tim comes over several times a week and together we clean the coop and feed the chickens. They all know his voice. Chickens are smarter than you'd think.

Chrisa: They know that when they hear Tim's voice, they're gonna get treats. 'Cause he always gives them treats.

Mike: (laughs)

Chrisa: So they will run out to see Tim when they hear his voice because they know he's gonna give them treats and he thinks they're the greatest thing. He has raised them from chicks and he's the kind of kid, he's really good with all animals, but he can actually put a chick in his hand and pet it until it falls asleep in his hand.

Mike: Oh my.

Chrisa: And he's really good with them and he loves them and they absolutely know him. It's really fun.

Mike: Not that you want to be a social media star, but there's a TikTok and a YouTube short in there somewhere.

Chrisa: (laughs) Yeah, probably.

Mike: And a series of them, i'm telling you.

Chrisa: Probably.

Mike: I end up watching Henry the Mule when I'm stressed.

Mike: So there you go.

Chrisa: Oh my gosh. Yeah, so there probably is. You can actually, yeah, put a chicken to sleep. It's fun.

Mike: Chrisa, thank you so much for sharing your work and your story. It's so important especially to break the stigma.

Mike: For those of you listening, there are links to Chrisa's work and contact information attached to the podcast.

Mike: If you're listening and watching, we hope you find hope, courage, support, wherever you are. Thanks for listening. Be safe and may you always find your way forward.