Ep. 53 – The Warnekes – Mental Health: One Family’s Journey

Rachel Cram – Well, welcome to the studio, Cal and Suzie. I am so grateful to have this opportunity to sit and talk with you.

Suzie Warneke – Thank you.

Cal Warneke – Thanks, Rachel. We’re glad to be here.

Rachel Cram – Good. Well, this is a bit of a different interview for me because I have known you both for a long time.

Suzie Warneke – Yes, we go way back.

Rachel Cram – Way back. Suzie has worked with me in leadership at Wind and Tide for 20 years. And I know, of course, Cal through that.

Cal Warneke – Osmosis. Yes.

Rachel Cram – And you’ve been very involved in Wind and Tide Family Life programming. We’ve been on retreats together through that over the years. And then of course, I know your beautiful family. You have three children. Do you want to sort of introduce who they are?

Suzie Warneke – Sure. We have three kids Josh, Mikaela and Ethan, and they are currently. Oh, how old are they?

Cal Warneke – So Josh is 28, Mikaela will be 24 in a few weeks and then Ethan’s 17.

Rachel Cram – And when I first met you, I think Josh, who we’re going to be talking mainly about, and with, in this interview, was six years old, I think?

Suzie Warneke – Yes. Seems like a lifetime ago.

Rachel Cram – Yeah. So I would just like to introduce you to our listening audience as a very kind, compassionate, actively involved couple and family. And you found yourselves on an unanticipated journey of parenting a child who has struggled with their mental health; Josh, your oldest son. And we’re going to hear about that in this conversation.

It’s been said that we do our best parenting before we have our kids. And I think once we are actively parenting, most of us recognize that as true. It’s much more complicated on the inside that it is looking at parenting from the outside. Do you recall any of your early thoughts or visions on raising kids and creating a family?

Suzie Warneke – Yeah, when you’re holding them as a little baby, you have the dreams, “Oh, I dream for you to grow up and go to school and you’re going to graduate and then maybe university, college and then get a job and have a family, get married.”

Like those are all the things that you hold in that little baby, and then you start to do life with them and things change. Sometimes those dreams, they come to be, and you can celebrate those. And then other times things change and you’ve got to change your perspective, your hopes and reevaluate, who were those dreams for? Were they really for my child? Or were they my dreams hoping to look a certain way? Have that certain family?

Cal Warneke – We’ve been part of a church where you dedicate your children back to God, saying, “We want to raise our kids in a godly way.”

And I know initially, after some of the stuff we went through with Josh, it was almost impossible for Suzie and for me too, to sit at child dedication watching these parents on stage with their child in their arms, going, “We did that too, and the hopes and dreams we had when we were in their shoes are not going to be realized for our son.”

That was hard. That was hard to realize that the hope that we had back when they were babies, it isn’t going to happen. It’s not going to turn out the way that we’d hoped.

Rachel Cram – That so makes sense. As a young couple. Were you aware of the concept of mental illness or mental challenge?

Suzie Warneke – I would say no.

Cal Warneke – Probably not. Minimum

Suzie Warneke – Especially to the degree that we know it now. I think everyone hears about the words depression, anxiety. But did we know what that meant? No. Did we see that in our families and in our extended families? No. We really weren’t impacted in any sort of way that I can think of. We were just doing life and, depression, anxiety, you heard about it, but it really wasn’t talked about.

Rachel Cram – Yeah. And certainly back when Josh was born, so 20 plus years ago, it just was not really on people’s radar. They say now that one out of every five children and youth in Canada, and my guess is that this is somewhat consistent across the western world at least, one in five has a diagnosable mental health concern some time in their developmental years. So this is definitely a huge learning curve for the world.

Suzie Warneke – Yes.

Rachel Cram – So, we are going to hear directly from Josh in just a moment, and he’s no longer living at home right? Where does he live now?

Cal Warneke – So Josh is living in a group home. We do love to have Josh home as often as we can for a night or two. He comes to us for birthdays and for family functions and all those sorts of things. But Josh’s home is in a group home where he’s got professional people that are on staff that are there 24-7 to help him with medication and with budgeting. And right now that has been a good place for Josh. We’ve seen great strides for him in the last couple of years of getting some improvements. And stability has been a big one for him. There’s been growth and development because the community and the home that he’s living in has been a great place for him to be.

Musical Interlude #1

Rachel Cram – Good morning, Josh,

Josh Warneke – Good morning.

Rachel Cram – It’s good to be with you.

Josh Warneke – Thank you.

Rachel Cram – Is this up and early for you today?

Josh Warneke – Yeah, a little bit. I’m usually up for the 10 o’clock morning meeting here at the house. But I got up nice and early so that I could have my coffee and a bagel. And yeah, it’s good.

Rachel Cram – Oh, good. I am so interested to hear what you have to say today and so thankful for this conversation. So thanks for being willing to share a little bit about your mental health process because I know that can feel a bit vulnerable.

So, Josh, I know you to be a very caring, creative, gentle and articulate person and I’m wondering, are there three to five adjectives that you would want to use to give a feel for who you feel yourself to be at this point in your life?

Josh Warneke – Sure. Yeah. I would say funny, smart, courageous, curious and compassionate.

Rachel Cram – Compassionate, do you want to draw that a little bit.

Josh Warneke – Feeling how other people feel. Seeing other people’s emotions and the look on their face or different body language cues, and being able to extrapolate how they feel inside as well as how they look outside.

Rachel Cram – Is that something you think you’ve always had?

Josh Warneke – Yeah, it’s kind of always been an inherent feature of Josh. Yeah.

Rachel Cram – And maybe an inherited feature as well, because I think your mom and dad are also highly compassionate.

Josh Warneke – Yeah.

Rachel Cram – Well, right now in the episode, your dad just gave a very brief description of where you’re living, and I know you’ve moved around quite a bit over the last few years. Do you want to describe where you are at right now, even as we do this interview?

Josh Warneke – So currently I’m living in a group home. I’ve been here for about two and a half years, and I’m pretty happy here. I’m kind of outgrowing it a little bit. I find the support is a lot sometimes.

Rachel Cram – Do you feel over-managed?

Josh Warneke – Like drowning in support, sometimes.

Rachel Cram – OK. That’s tough. What kinds of living options are available to you?

Josh Warneke – There’s different levels of support, so there’s like the hospital when you’re really low, and you’ve probably been around and seen my mum when she was dealing with me being in the hospital for six months at a time.

Rachel Cram – Those were hard times. Would you equate that to the lowest?

Josh Warneke -Well, the lowest would be no support I think. So, that’s like living out in society, whatever that looks like for someone, but not receiving any mental health support if they need it.

Rachel Cram – And so then hospital would be the next. And then what would happen after that?

Josh Warneke – Something like this where it’s staffed 24/7 for example; someone is always there to check on you in case something goes wrong. The next step that I’m looking at in the future is supported independent living, usually an apartment. And then you have a staff member who comes and checks on you every two weeks. So that’s what I’m working towards, something where I can live on my own but still have some checks and balances to make sure that I’m taking care of what I need to take care of in my life and still managing.

We’ve had friends here at the house move to independent living, and we’ve also had friends move to more long term group homes because sometimes that’s exactly what they need.

Rachel Cram – So that’s more a lateral move.

Josh Warneke – Yeah.

Rachel Cram – OK. When you’re living with others who are also struggling with their mental health, do you find it more freeing to share your experiences than when you’re with people who don’t have that in common, who aren’t in a similar situation, at least at that point in time?

Josh Warneke – That’s a yes and no kind of answer. When we’re doing the morning meeting at 10 a.m, we always do like a zero to ten scale of how you’re feeling, and you put yourself on the scale and sometimes that answers a zero. And the best thing for that is to give them a hug and say, “Hey, I’m sorry that you’re feeling the way you’re feeling today, but it will get better.”

That’s usually my approach, at least. It’s easier to talk about it when you have it in common with other people. It’s easier, but it’s still hard. It’s scary to be vulnerable. Yeah.

Rachel Cram – How are you feeling today on a scale of zero to ten?

Josh Warneke – I’m probably like a nine out of ten today.

Rachel Cram – Well, you’re sounding like a 10.

Josh Warneke – (laughs) yeah.

Rachel Cram – And I really appreciate you sharing. You said it’s still hard to share your experiences, even with people you connect with daily. Josh, how important is finding a community where you can share?

Josh Warneke – Well, it’s difficult because a lot of the time family support is very low in mental health journeys because most families don’t understand how to deal with this sort of thing. Having that family support is huge. And I’m super, super lucky. When I look around at other situations, I often see people just doing it on their own. And it can be quite scary, and sad a little bit, too. There’s a lot of shame that comes with mental health struggles. And a lot of fear of the unknown. “Oh, is my loved one going to freak out at me this weekend if I invite them over for coffee? Is my loved one going to make up some sort of paranoid delusion about me if I extend a hug.”

Rachel Cram – The family can feel this way.

Josh Warneke – Yeah. There’s just a lot that is unknown.

Rachel Cram – Has any of that happened to you?

Josh Warneke – Definitely, yeah. I’ve been in the spot where I’m hallucinating voices, where it sounds like my parents are jabbering in the back of my mind. Because the voices all have personalities and oftentimes it will sound like someone that you know, but it’s just a hallucination, it’s not actually what’s happening. And so then it’s like, “Oh, well, I thought you said this scary thing in my head.”

So you’re living in this reality where it’s so scary. You can’t talk to anyone about anything, because what if I made that up? What if I? Yeah.

Musical interlude #2

Rachel Cram – Suzie and Cal, can we go into Josh’s journey from your perspective? Looking back, do you see early signs of Josh struggling in childhood with mental health.

Cal Warneke – Not in childhood for Josh. It wasn’t until those formative teen years that we started seeing some challenges creep in. Josh is social. He’s highly intellectual. He’s very gifted musically and otherwise. And so we didn’t really see that at all. Our home’s a bit of a hub because we live so close to the high school. We would oftentimes have like 10 to 15 teenagers in our home, and we started to see that change. We started to see Josh pushing his friends away in grade 10, grade 11. Looking back, it was so normal for so many years to have so many people. Josh had a huge social circle, and for that just to be pared down to nothing, it was weird when you look back on it, going, that should have been a bigger trigger for us to notice.

Rachel Cram – Thanks Cal. You’re talking about Josh pushing his friends away. Are there common signs parents could look for when they’re wondering if their child may be struggling with their mental health?

Suzie Warneke – Well, some would be like a change in sleeping pattern. And so we saw that in Josh, he went from being awake during the day and sleeping at night, which is our typical sleeping pattern, to it literally flipped completely upside down. And he would be awake all night long and sleep all day long.

Rachel Cram – And when did that start?

Suzie Warneke – Again, probably grade 10, 11. And all of a sudden his grades are dropping and trying to get him to school was nearly impossible. He was always late, falling asleep in class.

Rachel Cram – And you were probably thinking that was because he was so tired because teenagers do tend to shift their sleeping patterns.

Suzie Warneke – And that’s kind of the challenge with all the signs for what to look for if your child might be struggling with their mental health. They line up pretty consistently with signs of a teenager. And so for us, we wrestled for two or three years, “Is this something we need to do more about, or is this just being a teenager?”

And he was our first teenager, so we had nothing to gauge that on other than, like Cal said, looking at the teenagers that were in our home and going, “Does this line up with what they’re doing?”

And sure, yes, some of them are saying, “Yeah, I was up till 2:00 in the morning,” but then they went to bed, whereas our Josh would be up all night long and not go to bed. And so that’s when you start to kind of go, “OK, maybe there is something.”

Rachel Cram – What would he be doing in that time when he was awake in the night?

Cal Warneke – A lot of social media. And that became almost an addiction for Josh to put in extreme terms. And then we started to see Josh was living a parallel reality to us. That was another key thing too. And some of our conversations were like, is he really part of the same reality? Because this world that he was in was totally self constructed.

Suzie Warneke – Yeah, because we would have conversations and Cal and I would look at each other and go, “Did that make sense to you? Because I don’t think that made sense.”

But then you start to question your own.

Cal Warneke -Sanity,

Suzie Warneke – The reality of, “Which one of us is off here because something just doesn’t feel right.”

So that was a really hard one to even put into words. It was more like a feeling of something’s just not right.

Rachel Cram – Well, and like you’re saying, with teenagers, they are exploring their identity, their perception of the world and how they fit in the world. So again, part of that you feel, is this just normal? But you’re talking about this gut feeling that started to happen for you.

Suzie Warneke – Yeah. And another one is they start to pull away both socially from friends, but family, too. But teenagers pull away from their family.

Rachel Cram – It’s part of individuation. Yeah.

Suzie Warneke – It’s part of them figuring out who they are and how they fit. And so they’re trying things out for themselves. You know, you’d hear other friends say, “Yeah, my kids sleep in until two in the afternoon.”

You’re like, “Yeah, that’s what Josh does. So that seems to line up with being a teenager.”

Rachel Cram – And you want that to be the truth, right?

Suzie Warneke – Yeah. And you do. You really are, “OK, yeah, he’s just a teenager.”

You’re trying to tell yourself that so that you don’t have to figure out, “Well, what if it’s not?”

Rachel Cram – Yeah, I know that another trait sometimes that can indicate that a child is struggling with their mental health is excessive paranoia, or worry or anxiety. Were you seeing any of that?

Cal Warneke – Yeah. Part way through the process, we started to see it more and more. Weird concerns Josh had that people were listening, that there were recording devices in the house. That kind of stuff got to be really scary. Like, in our reality, that’s not something we normally think about, but as Josh’s world started to crash into ours, we started to realize the reality he was experiencing. “Wow, that’s really going on inside your head and that’s kind of scary to think that you’re living in that constant fear.”

Rachel Cram – So what brought it to the forefront of your mind to let you know that, yes, indeed, you were dealing with a mental health crisis with Josh.

Suzie Warneke – Yeah. Well this is a cool part of the story because I worked for Wind and Tide at the time and we were having a pro-d-day. And Rachel, you invited Sharon Smith to come and speak. And I remember I was in the sound booth running sound.

Rachel Cram – Sharon Smith’s a mental health expert.

Suzie Warneke – She is. She’s a mental health expert, and she’s got a great podcast on Family 360. And people should check out.

Rachel Cram – Yeah, she was very impactful. What episode number is that Roy.

Roy Salmond – I’m just looking that up right now. Episode 30, on Friendship and Mental Health.

Rachel Cram – Right. She was wonderful.

Cal Warneke – Absolutely.

Suzie Warneke – Yeah, so she was standing on there standing on the stage, and we just had one of those strange mornings where Josh had left this weird note on the fridge, the peace symbol, and I didn’t know where he was. And then Cal’s texting me, “Josh is at Denny’s,”

And, I don’t know what’s going on, but we got pro-d-day. I’ve got to be there. I got to help make that happen. So I just got to get to work and do my thing. So kind of pushed the weird morning aside. And Sharon Smith gets on the stage and she is talking about ‘the mental health continuum,’ showing how you can go from floundering to flourishing, regardless of whether you have a mental illness or not.

And I was sitting there and I remember turning to my coworker, who is back in the sound booth with me, and I said, “That’s it. Josh is floundering.”

I was like, “I finally have a word for how to describe what’s going on. My son is floundering.”

Rachel Cram – How old was he at this point in time?

Suzie Warneke – At this point, he’s 20. And we had already been going to counselors along the journey. But by 20, we were like, “Josh, something’s something just doesn’t seem right.”

Rachel Cram – And did that word floundering versus flourishing helped take off, maybe so much of even thinking mental health or not, but just thinking health, period?

Suzie Warneke – Yes. Yeah. At that point, I wasn’t really thinking of any diagnosis because again, that was an uncharted territory. It was just that, there’s a word I can use if someone asks, “How’s Josh?”

I can actually say, “He’s floundering.”

And that just seemed to bring a little bit of peace of just going, “OK, I think we’re on a track here. I don’t know where this is going.”

But that’s kind of where it first started.

Rachel Cram – It’s a starting point.

Suzie Warneke – It was a starting point, for sure, and we were so grateful because it was literally three or four days later that I’m sitting at work in my office and I’m running late. So I call home, and at this point our youngest is nine years old, and so he’s in an after school care program. And I realize I’m not going to make it home in time to grab him. So I called home hoping Josh or Mikaela might go and pick Ethan up for me because it was within walking distance of our house. And so Mikaela answers the phone. So I was like, “Are you feeling up to going and getting your brother or could you get Josh to do it?”

And she says, “Well, actually Mom, Josh is on the phone.”

And I was like, “Oh?”

“Yeah, I don’t know who he’s talking to, but something seems weird.”

And I overhear him in the background saying, “Yeah, I’m standing on a bridge. I’m by a field on a bridge.”

And I was just like, “That’s weird. I wonder who is talking to?”

But Mikaela’a is like, “Mom, it’s OK. I can go get Ethan.”

And we were just about to hang up the phone when an operator cut into our call and I was like, “This is weird. I didn’t even know we still had operators.”

And she was like, “Hello. We have the police on the line and they’re trying to get through. Can you hang up this call so the police can call?”

And I was just like, “What?”

And I have to hang up because they’re trying to get our home line, which Mikaela’s is on.

Rachel Cram – How scary.

Suzie Warneke – And so I hang up the phone and so Mikaela ends up having a conversation with the police. They’re asking her if Josh is at home. And she said, “Yep.”

And they said, “OK, we’re coming over.”

And then they hang up, and then I get a call saying, “This is the police. We’ve been on the phone with your son. He claims he’s made a bomb. And so we are entering your home now to remove them.”

And I’m like, “You’ve got my daughter, too?”

And they said, “Yes, we have Mikaela.”

And then they asked the question, “Do you think this could be something to do with his mental health?”

And honestly, if I hadn’t been in the room with Sharon Smith, I probably would have said no. It wasn’t on my radar, but I immediately said, “Yes, yes, I think there’s something going on with his mental health,”

and that was the beginning of our journey.

Rachel Cram – Wow, what a story. I’ll give you a chance to breathe.

Cal Warneke – Is there a kleenex near by? Thanks Rachel.

Rachel Cram – You told them incredibly graciously, thank you.

Cal Warneke – Yep, yep, because what she doesn’t go into then is that the bomb squad and SWAT teams show up and storm the house with the bomb sniffing dogs, and the yeah,

Rachel Cram – Do you want to throw that in right now?

Cal Warneke – Sure.

Rachel Cram – That’s kind of part of the impact on your family.

Cal Warneke – Hmm. Because yeah, that’s at the point where the police then surround the house, they go through the whole house to verify is this an actual threat? Is there a bomb in the house? And that’s a huge impact for our family. And leading up to that, it was the frog in the pot analogy where you don’t realize how hot the temperature is getting. And so it was moments like that where you’re like, “Oh my goodness, we didn’t realize how crazy, literally crazy our house was getting.”

Rachel Cram – Yeah, like the frog in the pot, for people that don’t know the analogy, you don’t realize that the temperature in your home has slowly risen and now you’re boiling in that pot?

Cal Warneke – Exactly. And later on, we had to realize Josh can’t live at home, it’s impacting the rest of us too much as a family that we just have to set up a boundary and say, OK, for the sake of the rest of the family, for us and for our minor children, it came to that. And it was tough as a parent to bar your child from entering your home. But fortunately we were on the same page at the same time to agree that, yeah, “Josh can’t live here.”

For the sake of all of us and hopefully for Josh’s ability to improve in the future, he can’t live here.

Musical Interlude #3

Rachel Cram – Josh, do you have any clues or techniques to help you discern between what’s real and what’s happening only inside your head?

Josh Warneke – A lot of it has to do with what stacks up.

Rachel Cram – Stacks up, what do you mean by that?

Josh Warneke – Like, there’s a lot of investigative clues that you have to look for.

Rachel Cram – Can you give me an example of something that you are thinking is true and how you would start to stack that up?

Josh Warneke – So, yeah, like our son is, our son is worthless, for example, maybe.

Rachel Cram – Is that a voice that you hear?

Josh Warneke – It’s been heard before. Yeah, during my worst times.

Rachel Cram – OK. So how would you start to stack that then? What would you do?

Josh Warneke – I would look at the character of who is saying it. Is this something that they would actually say out loud? It’s hard to talk about too cause there’s a lot of internal dialog that has to happen, a lot of evaluating. Evaluating whether or not something’s true is very hard.

Seri – I’m not sure I understand.

Josh Warneke – Yeah, me neither Seri. Sorry.

Rachel Cram – Well, that was quite perfect.

Josh Warneke – Yeah, I was trying to turn my phone off.

Rachel Cram – That’s no problem. That’s a problem. So, you were describing stacking up the facts.

Josh Warneke – Yeah. There’s the self-doubt of questioning whether or not someone likes you. And that’s totally normal, right? Like that’s in every romance movie. And then there’s the fear of, I don’t think I can get out of bed today because the voices are telling me I’m not someone that should be trusted, I’m not worthy, or there’s a conspiracy out against me. And so when I was at my worst, I was just like, “No, it’s everybody else’s fault. This isn’t me.”

So that’s when it’s really hard to know.

Rachel Cram – And I guess this is where you must have to have somebody that you can trust to tell you. And who’s that for you?

Josh Warneke – It was my mom and dad for me. They were really good at saying, “No, Josh, you have a problem. This isn’t something that is just going to get fixed overnight.” We can’t just slap a Band-Aid on this right?

Rachel Cram – How hard was that for you to hear?

Josh Warneke – Oh, extremely hard. I was in such a state that it didn’t matter what they said, they would have been wrong anyway. I had these delusions that the world is against me and everyone’s suppressing me, and that everyone knew who I was, but they were ignoring me.

Rachel Cram – Can you identify what it was Josh that allowed you to hear and respond to your parent’s concerns for you?

Josh Warneke – To me that was, there was a point when it was decided that for the sake of my family, I couldn’t live with my mom and dad anymore. And that was really hard. Because it meant that I didn’t get to see my little brother grow up. At least I got to, but like from the outside. I could visit on weekends, sometimes, but couldn’t actually be there.

Rachel Cram – That’s really hard.

Josh Warneke – Yeah, it was hard.

Musical interlude #4

Rachel Cram – Cal, just reflecting a little more on your frog in the pot analogy. What made you realize you were getting hot in that pot?

Cal Warneke – Well, some of it was indications in ourselves, and me looking to Suzie saying, “I don’t think I can handle this. This is just getting too much.”

And then also seeing it in our kids.

Rachel Cram – Your other children.

Cal Warneke – Yeah, our other kids were having struggles living a normal life in our own home. So we’re trying to protect one child, but how do we protect them? And that’s where I think we started to see the changes in our own home. So if we’re not doing some of those things that used to be regular normal, why are we not doing them anymore? What’s caused the change in that?

Rachel Cram – And what would have been the reason that you would have given for that?

Cal Warneke – We were exhausted. It was just too much. We were just depleted. There’s nothing left, right? So whether it’s a coffee or whether it’s a walk with a friend, if those things aren’t happening, you’re not replenishing yourself. If you’re the jug that’s constantly filling people around you, but you get to the point where you’re empty, you’re useless. It’s asking the why? So what’s changed, that’s got to the point where we are no longer able to do what we used to do that was fun?

Rachel Cram – And maybe that’s one more point on that list of how you start to recognize that there’s a mental health concern in your family, in addition to the sleep and the paranoia is, what’s happening to your other children and to yourself?

Cal Warneke – Everybody needs a litmus test. Everyone’s litmus test is going to be different. But yeah, being more aware of your changes is huge to see those gradual shifts. Frog in a pot. You’re not realizing the temperature is getting up and up and up and up, and it gets to the point that, “Ah! Now we’re boiling and it’s too late.”

Once you get to the boiling point in the water, the frog doesn’t have a hope.

Suzie Warneke – Yeah. And I would say even for our home, thinking of that pot, our Josh started off as a sweet boy, as all boys are and he’s a very sensitive boy. And so he grew up being kind, friendly, joyful, and as those teenage years hit, it shifted and he started becoming more angry, verbally angry. And initially again, it just seemed like, “Well, I guess this is what teenagers do. He’s our first teenager.

Cal Warneke – I guess it’s a bad day.

Suzie Warneke – Yeah, but all of a sudden we’re like, he’s saying things out loud that I don’t want my nine year old son to hear. Something’s not right. And it didn’t matter how many times you said, “Josh, don’t speak like that. Don’t talk to me that way.”

It wouldn’t stop. And so that was another indicator. Again, the water’s getting hot here. It became a very angry environment in our home.

Rachel Cram – That must have been so difficult and confusing for all of you. For the sake of other parents who may be in a similar environment in their home, is there anything that you both of you can identify, any steps you took to get out of that angry, to get out of that boiling pot so that you could help Josh and the rest of your family as well?

Cal Warneke – So, we talk about bubble wrapping as parents, how parents can bubble wrap their kids. But there’s another piece of it where how often do you cushion your kids? You see, they’re about to hit rock bottom, and just before they hit rock bottom, you shove the cushion underneath just to soften the blow, soften the impact so they don’t really feel the full impact.

But, we got to the point with Josh where we had to consciously stop cushioning, we had to let him hit rock bottom so that then he could bounce back on his own. Because us actually cushioning him was facilitating the same bad choices over and over and over. So that was a tough journey to be on.

Rachel Cram – Yeah. Listening to you as another parent, how hard is that to stop when you know that you have to pull that cushion out?

Cal Warneke – It’s brutal. You feel like you’re the worst parent ever. What parent would do that? What parent would let their kid hit rock bottom and potentially destroy themselves?

Suzie Warneke – Yeah, definitely, I would say the hardest things we’ve had to do as parents. How do you say, “You don’t get groceries? I’m going to have to leave you on the porch because you can’t come in our home.”

Those were the hardest days of this journey.

Cal Warneke – And as hard as it was, it would have been way harder if we didn’t have a partner beside you who was on the same page. So having Susie by my side and us being able to talk about it, say, “Do we agree that this is where we draw the line? Yes, this is where we agree. We draw the line.”

And we got to that point with Josh, where he knows now if he wants us to make a decision, he can’t get just one of us to decide. I’ll defer. I’ll always say, “Josh, that’s a good question, I’ll run that by mom and I’ll get back to you.”

So we can actually go to the other person, we can do a debrief, we can discuss this and come back then with an answer. And it helps having a partner in crime, so to speak on that, that you’re in a full agreement.

Yeah, I think that answers your question?

Rachel Cram – It does. Thank you. So hard. Can I just dig a little deeper into what you’ve just mentioned about being on the same page, drawing the line, as partners. I don’t imagine that’s always been easy? What has helped you to “draw the line” together, and when is that hardest?

Suzie Warneke – I think as I look back, I think we are most thankful that we’ve always communicated, Cal and I together. So there was already a base of communication and that is what’s been critical in this journey, is to talk about, ‘How are you feeling? How am I feeling? How are we feeling together,’ so that we can move forward together. Doesn’t mean we have to always agree, but can we find that common place?

Thankfully that’s really been the story of our marriage. And I don’t know what to attribute that to other than maybe we both like to talk. But yeah, because throughout this journey, I think the word that we have constantly questioned is the word ‘enabling’. Are we enabling?

Rachel Cram – Is this back to the cushion analogy that you just gave?

Suzie Warneke – Yeah. Because when your child has a mental illness, there comes limitations with that, as with any disability. And so, like we said, when he was little, you have these expectations, these dreams and then a mental illness changes those. And some of them are for the better. You realize maybe our expectations were too high for even a regular child, whatever that would look like, you know? And it causes you to really reexamine those things.

But then, yeah, it’s this enabling. So if he’s not able to have a job, should we be buying him groceries? Because the reality is he doesn’t have money. But then at the same time, is he making choices to purchase other things with the money that he does have? So then…Well I don’t need to save money for groceries because mom and dad will buy me groceries when I call and say, “I ran out of money for groceries.”

So it’s constantly that balance. And so we would go for so many walks just so we could get out of the house and talk together to get on that same page. And a lot of times we would look at each other and kind of go, “I don’t know, let’s try it. We haven’t tried that yet. Let’s just see.”

And an openness to try each other’s ideas because again, we’re just walking into this initially, particularly quite blind. And so just kind of hoping that one of us is going to come up with an idea that’s going to work.

Rachel Cram – Yeah. Well, in the midst of this you are also walking in front of your other children, and in front of your extended family, and in front of the community around you. How did that come into play? Like I even think on things like enabling, did you have concerns for what your parents might be thinking, or or your friends?

Cal Warneke – Yeah, we have a pretty open relationship with my parents. And so we did hear comments in those times that they felt we were doing too much for Josh. They were on a journey of learning about mental health as well. And they’ve come a long way. Because initially in the early years they had some of those typical reactions, like, “Just show him tough love.” Yeah.

Rachel Cram – So this journey is for all of your family.

Cal Warneke – Oh, absolutely. Yeah. Yeah, it goes beyond the walls of our home. Yeah, there’s the extended family piece to it that can’t be ignored.

Suzie Warneke – And of course, everyone has an opinion. So you get lots of advice along the way. Right. And we know people have such…

Cal Warneke – Good intentions.

Suzie Warneke – We’re surrounded by people who care about us deeply. And so we know their advice is coming from a place of care. But it really boiled down to Cal and I looking at each other going, “We know Josh and we know our family, and we have to make the decision that we feel is best for our family.”

And we go into that decision knowing there’s going to be people from the outside that look at it and go, “You’re doing what? I would never do that.”

And there’s things we’ve done that I’ve thought, “Wow, I never would have done that in my pre-children parenting, right?”

Rachel Cram – Yet here you are.

Suzie Warneke – And yet here we are, and this is what we’re doing. But we feel like this is what’s best for our collective family.

Rachel Cram – Hmm. Were there any responses from your community of care that you found particularly helpful?

Suzie Warneke – Of course, yeah, there’s been lots of great advice too. Part of our community of care has also included some professionals. So when Josh was discharged from the hospital the first time we were involved with an organization called EPI, Early Psychosis Intervention, because Josh initially was diagnosed with psychosis and it was a lifeline for us. That’s where we gained so much knowledge, and the beautiful thing about knowledge is it pushes away the fear.

Cal Warneke – It sheds light in dark places.

Suzie Warneke – Yeah, when you hear ‘psychosis’ and you don’t know what that is, your mind goes to all kinds of places, but to sit in a room with some health professionals and then others who were going on the same journey as us at exactly the same time.

Cal Warneke – That was huge. Knowing we weren’t alone. That there were other families in the similar sort of situation. The professionals, yes, it was great to have their expertise and their book knowledge, but we needed some street knowledge too. We needed some other families that had walked the journey. You could see it on their shoes. They’ve been on the road.

Rachel Cram – Which the two of you now provide for many families as well, and I’d love to get to that in a little bit. Thinking on EPI, I remember being in conversations with you when you discovered that organization and you had such relief, but there was also the tension of ‘Josh was going to age out of it.’
Is that right?

Suzie Warneke – Yeah, they’re all about early intervention to hopefully prevent further episodes of psychosis and to give that knowledge base. So yeah, our time there ended and as we’ve gone along our journey, Josh has aged out of a few different programs and those are always scary times because it’s like, “So what’s next?”

And these have become part of your family. But the good news is we’ve always had a ‘what’s next.’ There has always been something next for Josh.

Rachel Cram – Even though you haven’t known what it is until you got there.

Suzie Warneke – Even though we haven’t known, and you know, there’s for sure challenges with “the system” as we’ll call it, but also we are so fortunate that we are in 2021 and mental health is talked about now. While it wasn’t when Josh was born, it is now. And yes, we can go on and on about the ways we could grow and improve but there are supports there. I think the challenge is, you’ve got to do a bit of digging. And so we’ve had to become an advocate in some ways, and there’s definitely challenges with that because Josh is an adult and so you are limited with privacy, how much we can have input into his journey.

It hasn’t been easy but there is resources out there. And so anyone that’s listening and is like, “Oh, my child might be on this journey.” My encouragement is, there is help out there. You don’t have to do this alone, but it is going to take work.

Rachel Cram – Which is hard when you’re in chaos.

Cal Warneke – Yes. Yes.

Suzie Warneke – Yeah.

Rachel Cram – Now you were given the word psychosis to describe Josh’s initial experience. Is psychosis an episode or a condition?

Cal Warneke – So I’m not a doctor to give the clinical answer for this, but I’ll go back to some of the training we received from EPI, and they talk about a psychotic break. They talk about the brain is like a piece of fabric, and a psychotic break is when that piece of fabric is torn a little bit. Now the brain is able to repair itself. The brain has plasticity. The brain can actually reconstruct and re-fix pathways that were broken. But the more psychotic episodes that happen, that piece of fabric can get torn to the point where it isn’t repairable. So that’s a caution. So there needs to be time between psychotic episodes too. And Josh benefited from being in the psych ward and being on medication. It allows the brain to just slow down and do that repair work that’s necessary to replastisize and reattach those things that were broken and frayed because of a psychotic event.

Rachel Cram – And so that’s often why the hospitalization and the medication is there.

Cal Warneke – Is necessary. Absolutely

Rachel Cram – Is to not let another one happen so that it becomes unrepairable.

Cal Warneke – Or, to minimize the next one.

Rachel Cram – Right. Right. How important is getting a diagnosis? Because there is a part in us, that I think for very good reason, wants to resist labels, especially labelling our child. I think Josh received a diagnosis in his early twenties? Is that true?

Cal Warneke – Yeah. So the psychosis was the early diagnosis, but eventually the diagnosis that Josh received was schizoaffective, which is the blending of both schizophrenia and bipolar. But with that diagnosis came more channeling of support, The system is set up so that it’s got support when they know what you have. So having the diagnosis was huge in that now the supports are starting to funnel towards dealing with that specific issue.

Suzie Warneke – Yeah. Diagnosis can be hard. When they first say the word schizophrenia, you’re like, “What?!”

And every image that you’ve seen on a film/movie, all those kinds of things start to come to your mind. But it’s this funny tension because then at the same time, there’s this relief. There’s a name for this. And then like Cal says, opens the floodgate to some more specific resources that he can access and we as a family can access.

Rachel Cram – You’re talking about these images that we’ve seen, and I’m embarrassed to say this but for many years, when I saw people struggling with mental health out and about in the community, I didn’t picture them coming from warm, wise, caring homes with actively supportive, involved parents like yours. I think I assumed that they were people that maybe struggled with their mental health as a result of ACE’s, adverse childhood experiences, and definitely, some people do struggle with mental health because of that, but how have those images changed for you?

Suzie Warneke – Yeah, it is hard. The stigma of mental health is very real, and we live with that daily within our family. But we’ve had to really evaluate what is playing in our heads. And we love our son Josh to the moon and back and we love spending time with him, with our family. And some days, if you saw our family on the street you might look twice and kind of go, “What?”

Rachel Cram – Why would people do that?

Suzie Warneke – Well, part of Josh’s journey has been personal hygiene and I think that’s quite common and that’s what a lot of people would see. If they see people on the street, they see the personal hygiene. It’s hard to miss. But Josh is working really hard on that. And so, him waking up every day, and I’m sure you’ll hear some of his story. The voices in his head, he’s fighting those fights every single day. And so our whole worldview has really shifted through this experience. It really has changed how we view others, how we view our children, how we view one another.

Musical Interlude #5

Thanks for listening to family360 and our generous conversation with Cal, Suzie and Josh Warneke.

Our next episode is with Dr. Brett Finlay. Dr. Finlay received the Order of Canada for his groundbreaking work as the lead of the Canadian team for the SARS Vaccine as well as his significant work in infectious disease and microbiology. Join us as he shares insights from his newest best selling book, Let Them Eat Dirt: Saving Our Children From An Oversanitized World. A particularly poignant conversation at these given time.

And now back to our conversation with the Warnekes as we jump into the last part of our conversation with Josh and his well articulated description of what people need most when they’re struggling with their mental health.

Rachel Cram – One of the lovely things about you Josh, is your sensitivity to people. I’m wondering, does being on medication affect that at all; your capacity to feel and to be sensitive, maybe to yourself and to others?

Josh Warneke – It can. Finding the right medication is a journey for everybody, whether that’s your vitamin D in the morning or like a whole list of antidepressants and antipsychotics and mood stabilizers and things to help you get through the day. And yeah, they can. They definitely can either make you more sensitive to things like, “Oh, I didn’t notice the way the wind hits these flowers.” Or they can make it nearly impossible for you to do your daily tasks.

Yeah, medications tricky, because sometimes it’s just trial and error. You just got to put in the work of the two weeks or whatever it takes for the meds to kick in and then see what the effects are like. But I need them to function throughout my day. So it’s hard.

Rachel Cram – It sounds like finding your way to wellness is a full time job.

Josh Warneke – Yeah, definitely. And I don’t think that’s unique, because everybody struggles with certain things. We’re all putting in our own time somehow for that part time job.

Rachel Cram – Yeah, well said. With what you’re discovering for yourself and maybe even with consideration for others who live in your home or homes that you’ve been in. What do you see as pressing support needs for people struggling with mental health?

Josh Warneke – So most people in my situation would say, “We need more money,” right? “We need more financial support.”

But I think it’s the love piece. I think the family support and family connection, I almost wish that families could like adopt someone with a mental health issue. In the way of like providing support and love to those where their families might not have reacted super well to their symptoms.

Rachel Cram – A different version of adoption. That’s an amazing thought. Is there anything out there like that?

Josh Warneke – I don’t think so.

Rachel Cram – Josh you might be onto something.

Josh Warneke – Yeah.

Rachel Cram – Because we all need to matter to somebody.

Josh Warneke – Yeah, when you mattered to somebody. It makes you choose the right path more often than the wrong path because you’re like, “Hey, I have people out there that are looking after me and want the best for me.”

Like recently, I quit smoking and vaping, and especially my dad has been really helpful with asking about how it’s going because it’s been about a month since I quit. My Mom’s very active in my life. We hang out. She sees me all the time so its easy for her to notice like, “Hey, Josh shaved this weekend or did something nice for somebody else.”

Rachel Cram – Well, it’s back to your adoption thought I think, because we all need to be seen and special to somebody.

Josh Warneke – Yeah, it’s that love piece. It’s the feeling you’re cared because someone out there looks after you and that the decisions that you make matter. Right?

Rachel Cram – Yeah, that totally makes sense. Josh, thank you. I really appreciate you sharing with me.

Josh Warneke – Anytime. Thanks for the opportunity.

Musical Interlude #6

Rachel Cram – Well, Suzie and Cal, as we start to wrap up this conversation, just thinking back to the beginning with the idea that we do our best parenting before we have kids, would you feel comfortable sharing ways in which your journey with Josh has changed your perspectives on living together as family and living together as a community?

Cal Warneke – OK, Yeah.

Suzie Warneke – OK

Rachel Cram – Do you want to start Suzie? And Cal, you can give yourself time to think.

Cal Warneke – Yeah, sure.

Suzie Warneke – I think living with family, what we’ve learned is family can be messy, and that’s OK. And for our other two children, it’s not easy having a brother who’s been on the psych ward, and who takes lots of medication every day and sometimes shows up and hasn’t had a shower. And that’s their big brother. But we’ve learned to celebrate who we are as individuals, look for the good, celebrate the little things and all are welcome at the table. And that does mean some of the dinner time conversations can go a bit weird because sometimes Josh’s reality is quite different to our reality. Just creating space for that.

All three of our children are so compassionate towards others, and they’re able to look at other people and come alongside them. And that’s been a beautiful thing to watch as parents, to see your children grow in that. Embrace that. And it’s not saying every day we get it perfect because we don’t and there’s days where you go. “I can’t believe he said that or did that.”

But overall, yeah, the level of compassion that has come and I think it is just recognizing that life is messy, family’s messy, and we can find real joy in that. And just laugh, laugh at the little things. Laughter brings so much healing and has done for our family.

Cal Warneke – For me, love is a choice, right? So we choose to love Josh, but beyond that he is our son. So from day one, we’ve loved him. There’s no question. And so how do we love Josh with where he is? How do we help him with his needs? So how do we help Josh to a limit. Unfortunately, we have to put boundaries up, we have to sometimes say Josh, we can’t do that.

Rachel Cram – It’s OK, take it, take a little break and take a deep..

Cal Warneke – Oooooh, Yeah.

Rachel Cram – There’s no rush.

Cal Warneke – So love is a choice. We’ve loved Josh since day one. As a parent, you can’t turn that off. It’s not an option to not love them. But how do you love a child who’s struggling? And protect the rest of life too, like you can’t deny yourself. You can’t deny the needs of your other kids. So it’s tough. It’s ugly, it’s messy somedays, the struggle is not going to go away. It’s tricky, but it’s being there for each other. And that’s life.

Rachel Cram – Cal and Suzie, I feel like this is a good place to end, even hearing that sadness and confusion in your voice because I think previously you were speaking so confidently, which you are, but that’s not the whole story. And so I thank you so much for sharing with me and with our listeners the journey that you’ve been on. And I thank Josh as well.

Suzie Warneke – Thank you Rachel.

Cal Warneke – Thank you.