Interview with Lotti O'Dea from Satellite Foundation about growing up with a parent who has a mental illness
Lotti O’Dea grew up with a mother who had Delusional Disorder, which is like Schizophrenia. She outlines what her lived experience was like and talks about the support she had in place that helped her succeed in life. Lotti is a very high achiever and now uses all her skills to be the social impact researcher and youth adviser at Satellite Foundation.
She has extensive experience in analyzing and developing policy and regulations. As an economist, Lotti is equally experienced in quantitative and qualitative analysis.
She excels in taking complex policy situations or data analysis and providing robust ways to draw out the practical insights and actions relevant to decision-makers.
Lotti worked as a senior policy analyst in the New Zealand Government’s Social Investment Agency, supporting departments and NGOs to make better use of data and evidence in policy development, a senior economic analyst for an international economics consultancy, providing policy and regulatory advice to public and private sector clients in Australia, New Zealand and in developing countries, and researcher at the Health Services Research Centre, developing a simulation model of diabetes in New Zealand.
JOEL: What are your experiences with mental health?
LOTTI: My mom has a delusional disorder, which from my level of understanding of different mental health diagnoses, is fairly like schizophrenia.
But she doesn't hallucinate around noise or kind of visuals, but she does experience delusions and psychotic episodes, and real distress.
So, she had that probably long before I was born. She was not diagnosed. I have an older mom—she was born in the 1940s. But she was about 46 when she had me, and wasn't in a great relationship with my dad, which just kind of exacerbated all these things that had probably been under the surface for a very long time.
Around the time I was eight, she had her first cycle of being put into the hospital. Going through that coming out.
In New Zealand, it's called Compulsory Treatment Act. And then doctors got sick of this person just turning up and said, “Oh, look, she's probably fine.”
She's a very articulate person. She puts kind of her clothes together. I think people saw that and said, “a person with mental issues can't look like that. So she's probably fine”.
They would take off the compulsory Treatment Act. And then what we came to realize was this cycle began again—of her disease. Writing that she's not sick, she doesn't need the medication.
A few months later, the delusions begin again, in small ways building up to big ways become a harm to herself or to other people, and particularly me as a child in that situation. And cycle starting again.
How did it change your perspective?
The thing that I felt, and I feel like other people with similar experiences feel, not really realized that it's not normal for a while.
And so, things like my mother thinking she's being followed all the time. So, my role in the car would be to write down the number plates of all the cars that were following us.
And then going on a car ride with some friends and wondering why they don't have to note down the number plates of the other cars.
My mom talked to me about quite intense things relating to like sex or pregnancy at quite a young age because she thought I could be pregnant with this man that she had delusions about and was jealous of all women, including her own daughter.
I guess, having those experiences assuming that they're what you should be doing because it's your mom, and you love and trust her—and that's what she's there for.
Then observing other families where that didn't quite happen. And slowly connecting the dots. And then, a big event like a hospitalization occurred, where I do have older brothers and sisters, but they're much older than me.
So did like decades age difference, where they would then try to broach the subject with me.
But I think it was hard because I felt protective of my mom, it was just me, my mom, and my dog. And we were this little triad that were fiercely predictive of one another.
And so even against my own siblings, I was like, “I don't want you to take my mom away from me”, even though she's doing these things that really scare me.
How did you deal with that?
I was a little bit scared of the alternative as well. So, my mom separated from my dad. I was nervous about being removed from my mom's custody and going into my dad's custody—I did not want that.
And so, I was afraid of wanting to love and protect my mom, but I was also afraid that someone finds out what's going on. I'm going to be taken away from my mom. And that's scary for me.
But I guess I appointed myself. I know my mom best. I know what she needs. And I was worried if I was taken away from her, she would also get worse.
How to treat a child in that situation?
I think just treating the child as the expert in the situation and not seeing them as someone that needs to be informed of something. I think treating them as so what do you think is going on?
What do you think makes mom or dad or whoever feel this way?
And treating that child as a peer because in that situation, they do know they have the depth of knowledge of that person or of that illness.
Maybe they don't have the right medical jargon. I feel like all these kids with all these mental health nurses that don't have the qualification, but we've got this depth of emotional experience and you instead of telling them something, ask them.
I feel like that's useful not just for making the child feel safe. But it's actually a huge information source for the mental health professionals as well, in terms of understanding, even just basic concepts, things like financial instability is a huge trigger for my mom's episodes—many children's like situations.
And in many of these situations, the kids end up becoming not just the carer, but also the accountant of the household, as well.
So, I think the professionals understanding that perspective is also helpful and empowers the young person and makes them feel safe. So that if you did want to inform them of something, it's like a diagnosis or give them knowledge, then you've built a trust with that young person to do that.
But I completely take your point, having that and investing in that kind of conversation takes time. And sometimes those professionals don't have it or don't want to invest it.
What age does Satellite had people get identified with their programs?
Satellite covers a wide range of ages, which I think is fantastic. We go all the way kind of down to the eight-year-old stage, and then all the way up to 25. But also, over 25—when I first started, as a participant at Satellite, I think I was 27.
And their attitude is, all the kind of services or the funding related to services can be really cut and dry about certain age ranges for supports.
But that's not how mental illness works. It doesn't go, “Oh, you're 25. Okay, cool, you're all your issues, challenges”. So, we are really open for people on kind of either end of that spectrum, to be part of our programs.
We then section up age ranges between that. Roughly sort of the 8 to 12, spin the kind of 13 to 17. And then the 18 to 25 pluses. That's typically how programs are grouped up.
What more can be done to destigmatize serious mental health issues?
For example, the young people at satellite just being everywhere, like them, sharing their stories, then being invited to share their stories.
Because that's the best way to understand what those illnesses look like in practice is to talk with young people to hear.
It’s tough. But also, this is still my mom at the end of the day, and I love her, and there's a million great things about her.
And I think it's easy for us to point at someone and be like, “Oh, they're schizophrenic, and that equals bad mother.” Whereas that's not the case.
I would love to see more conversations where there's people that have gone through, or still on their journey with their own mental health challenges and be talking with people that are in the families of those with mental health challenges, because I feel like sometimes the consumer and carrier conversations happen in parallel. And we're never allowed to meet because God forbid, we disagree with one another.
It's important that we disagree with one another, especially when it comes to things like involuntary treatment, we should be having a debate about it. And you can come to understand a lot of those tricky and complex concepts or feelings until you hear them from people.
So, I think you can't really get past just that awareness raising that. Those old shirts that were like, “This is what a feminist looks like”. It's kind of like “this is what a young person that has a parent with bipolar looks like”, and there's a huge range. I think we must get over that hump before we can kind of get anywhere else.
How does creativity help children who have a parent with a mental illness?
I think the magic of the creative work is that it means you don't have to talk about mental health directly, which, particularly in the younger age groups.
The creative activities that we do, they can be about mental health. But in terms of, what am I good at? What superhero would I be if I was a superhero? and recognizing their strengths and building their own mental resilience—but not necessarily in sitting them down and be like, “Okay, so can you give me a list of your top five strengths and weaknesses, and then, show”.
I guess, helping them to identify what's going well for them and their own mental wellbeing, but also helping them to identify, like other things that are going on in their lives as well—as well as the fact that when you're doing something creative.
You're doing it like shoulder to shoulder with another person. And because of satellite, it will always be another younger person that has at least one thing in common with you.
Creativity is the gateway to letting those conversations happen. So, I'm a conduit. And now as a facilitator, I'm leading some of the creative activities.
So, I've come from my skeptical, scared Enos of being a non-creative to recognizing there's a real reason why it works and makes people feel comfortable—it gives them various outlets to communicate whatever they want to communicate. It also just lets people try new things.
How do your measure outcomes from the Satllite programs?
We've got numbers about the problem; we know that 25% of people experienced some level of mental health challenge. And many of those people will be parents.
So, there's a huge number of children out there that are in this situation, where we don't have as many numbers on or evidence on is, what the outcomes are for young people when they do something like satellite.
That’s a gap that we've got now. But it's also something that we're wanting to fill.
So that's why I have the role that I have and supporting satellite to measure its impact and to communicate its impact.
And we do things like we bring on universities, such as Monash—to support us in our evaluation of our activities, how we can get better. And that evaluation is directed by like our Youth Advisory Council as well.
So, when we measure our impact, we want it to be useful for talking with government, but we don't want it to be fully driven by the outcome—we bring in our young people to tell us this is what was meaningful to me. Peer connection, realizing I'm not all alone.
And we go great, that you're the expert in this situation, then we get researchers and so on to figure out we useful ways to measure things like social connection.
Massive thanks to Lotti for sharing her Story and if you want to share yours, please contact me via this website.