The Founders Talk: parenting neurodivergent children and building a business

Laetitia: Welcome to Neurodivergent Pulse, where we explore the often misunderstood world of neurodivergence with experts, parents, teachers, and therapists. Grounded in lived experience, each bite-sized episode gives you something practical to try. I am your host, Laetitia Andrac, AI expert, neurodivergent mum, and founder of Understanding Zoe.

Laetitia: This podcast is recorded on Dharawal country. I acknowledge that sovereignty was never ceded, it always was, and always will be Aboriginal land. Welcome to a new episode of the Neurodivergent Pulse podcast. Today, it's kind of a different episode. We are, Johan and I, coming as both co-founders of Understanding Zoe, partners and parents of Zoe, and we are at the heart of why Understanding Zoe exists.

Laetitia: And I really wanted us to have a chat and share with you about the journey that got us to create Understanding Zoe together, but also the behind the scene of being partners, being neurodiverse as a family with Johan being neurotypical and myself being neurodivergent, and really getting into a beautiful flow of a conversation.

Laetitia: So this episode exists because there are family who are listening who are not just raising neurodivergent children on their own, they are doing it inside a relationship with a partner, a co-parent, or family members who experience the world differently to them, and we wanted to model that by having an honest conversation.

Laetitia: So let us know if you like this kind of format, and we may do it more often.

Johan: Okay. So what made you want to do this episode now, Laetitia?

Laetitia: I think now was the time to do this episode because we are nearly two years in building Understanding Zoe. We're gonna celebrate our two years in, you know, a few months, and I really wanted us to share a bit more of what is happening behind the scene because there are lots of things that we do which are not really shared with the broader communities, that is using Understanding Zoe or listening to this podcast.

Laetitia: And I wanted us to model an honest conversation as partners and co-founders and parents.

Johan: Nice.

Laetitia: So Johan, I have a question for you. What did you think when I said I wanted us to do this podcast together?

Johan: Oh, look, I was actually quite excited because I see you do the pulse checks with Zoe quite, quite often, and I know that she loves doing that with you, so quite excited to be doing the same thing today.

Laetitia: Yes. And maybe you could be the one interviewing Zoe for a pulse moving forward,

Johan: Yeah. Good idea.

Laetitia: as you start developing your podcaster muscle. So what was, I have a question about the origin story of Understanding Zoe and just, you know, Zoe more broadly. When was the first time you realised Zoe was experiencing the world differently?

Johan: Yeah. Look, it's interesting. I'm trying to remember. For me, I think the moment where I really knew that there was something that we needed to look into and to focus on was probably when she started going to a public school, when she started school, and when I really noticed that the behaviour that she had in the classroom was not the one that her teacher really expected from her and the things that she was doing.

Johan: She was doing her own thing, et cetera. So that's pretty where, like the moment when I really realised that she was experiencing the world slightly differently from everyone else. But what about you? I think you knew that something was happening before anyone named it. What did that feel like for you?

Laetitia: I think for me it was really early on, but I dismissed it. It was even when, you know, she was a newborn, in her first months. I remember going to Zoe's mums group and gathering with other mums, and Zoe not necessarily doing things that those other children were doing. You know? Being just focused on one thing, being with me and needing co-regulation all the time.

Laetitia: I didn't know it was co-regulation, but, you know, always needing to be on the baby carrier and needing to always be with me and regulating in this way. Also, as she was starting food, you know, solids, the way she was starting was different to other children. So I just kind of realised through different things.

Laetitia: And I think when I really decided to dive a bit deeper and, you know, I started going on my own research when she was 18 months old and the daycare alerted us about potentially starting seeing a child psychologist, which is when we started seeing one together and with Zoe. I think it was kind of earlier, but yeah, that's how things happened for me.

Johan: And I'm also quite curious. So you're neurodivergent yourself. So was there, like, a specific moment where you really saw yourself in Zoe?

Laetitia: Very good question. There were so many thing where I thought it was not a problem or an issue or a difference because I was doing the same when I was a child.

Laetitia: So, you know, waking up a lot at night and not having a sleep that is expected of children, you know, younger and so on. I was like, I heard from my parents that until I was 12 I was not sleeping through the night, and I was having, you know, anxiety at night, and I wouldn't sleep until very late, and I would stay stuck in my book and so on.

Laetitia: So I remember very early on being like, "Oh, but, you know, I'm fine, so it's gonna happen. Like, she's going to sleep." So I think it was really in those moments where people were like, "Oh, this is an issue." I was like, "But how is it an issue, because I'm fine?" So yeah, there were some moments about sleep and about social interaction and special interest and things like that that were surprising for me.

Laetitia: Hmm. Cool. So I have one for you now. What do you wish you had understood earlier about Zoe and how she was going through? So Cookie was our dog. He's just barking, so I'm gonna open the door for him so you have, like, the real view of our family. So Johan, would you like to answer this one?

Johan: Yeah, look, I think what I wish I understood earlier was that the way, essentially the way she was thinking was not something that's, or, like, behaving, was something that we should change.

Johan: Because kind of like when she had, like, behaviour challenges, et cetera, I thought, well, we need to actually change that behaviour and we need to kind of, like, force things her to do and things like that. But what I wish I understood earlier was that it's just the way she is and the way she thinks and behave, and we need to facilitate things for her but not force her to do things that are not natural for her is what I think I would have wanted to understand earlier about her.

Laetitia: Hmm. Yeah.

Laetitia: And that's, I think, Johan, that's something that many parents listening will relate to, which is moving from a fixing mindset, which unfortunately is how our society is set up, to an affirming approach, which is this is who they are and how can we create the environment for them to thrive, and stepping away from neuronorms and how we expect every children and adult should be

Johan: Yeah.

Laetitia: rather than be yourself. And it's really about, let me be myself, and let's fix the system around me rather than let's fix you and not change the system. So yeah, I love that you share this genuinely and authentically.

Laetitia: Do you have a question for me, or is it my turn to ask you a question?

Johan: I don't know. You go.

Laetitia: I think it's my turn to ask you a question. So what is the hardest part for you being the neurotypical parent in our family?

Johan: I wouldn't say that it's hard. It's just a little bit different. It feels like I am probably the one that will be a little bit more, how can I say?

Johan: Kind of like really being able to pause and let emotions aside and kind of like really like kind of like a Cartesian mind and it kind of like helps you guys go beyond the emotions that are flowing in the moment. And really helping you to do that. It's not always easy, because that's also happening to me quite, quite often.

Johan: But yeah, I don't think it's hard. It's just a little bit different. And I think it's also on me to kind of like try to understand what you're going through and how you are thinking about things, which is not something that's very natural to me quite, quite often.

Laetitia: Mm. Thank you.

Johan: Yeah. No, of course. And yeah, so when do you feel most understood by me? Like are there any moments where you feel that you're most understood by me and kind of like the opposite, when do you feel that I'm not really understanding you?

Laetitia: Mm. So I feel you're understanding me most when you notice that I'm going to escalate into meltdown and shut down, and you invite me to just have a moment by myself and just, you know, you kind of helping me identify that I need at that point in time to be quiet.

Laetitia: So, you know, you will offer me, "Do you wanna get a moment and go for a walk with Cookie, or do you wanna have a bath, or do you want..." You know, you just offer me option when I'm actually escalating and getting into that stage of I'm going to have a meltdown and a shutdown. I just can't even think about that.

Laetitia: The other thing is when I struggle with interoception and knowing that I need to eat or I need to drink. You know, even today you were like, "So when are you gonna eat? When are you gonna have lunch?" And those are the things that otherwise I will just bypass because I don't really get all the body signal until I am starving, and then I get so angry because I'm starving

Johan: Yeah.

Laetitia: rather than identifying ahead of time that I need to eat. And also when you just identify that I need sleep and you're like, "So maybe, you know, you wanna go to bed and sleep," when I'm, like, scrolling or reading a book and really immersed into the book. You're like, "And it's quite late. Do you wanna sleep?"

Laetitia: You're, you know, just reminding me about the things that otherwise I will just get so hyper-focused in something else that I just forget about it. When I feel the most misunderstood, it's, you know, quite vulnerable to share this, but it's when I'm actually going into those moment of meltdown or irrational reaction and you're like, "Oh, my gosh, this is really intense."

Laetitia: Like, how can you go into such an intensity of emotion towards such a tiny thing? But for me, it's like those moments where I am actually unable to rationally think that this is a tiny thing. For me it feels like a massive thing and everything is collapsing, and I need at that point in time some grace and understanding, you know?

Laetitia: I know it feels like I'm a five year old in those moments, but that's why I need the grace and the compassion to help me move through that.

Johan: Hmm.

Laetitia: Thank you for asking this question. So I have one for you. Where has our different wiring created conflicts, real conflict between us?

Johan: Well, I think it happens quite, quite often.

Johan: I think it's when I'm, for example, when I'm tired and kind of like a little bit impatient myself, not being able to step back and think about maybe your perspective and how you're thinking about things. So for example, when you're dysregulated about something that's happening, if myself I'm tired, probably would have a hard time thinking about what you just described and when I understand you well.

Johan: So that's probably in this kind of situation where I just don't understand, and don't have the patience to think about your perspective as well. And I think that's when Understanding Zoe can be quite powerful is in these moments, just kind of like chatting with Understanding Zoe on your profile to kind of like explain what's going on.

Johan: And that probably would help

Laetitia: Solve that conflict.

Johan: But when I'm tired myself, I have a hard time thinking about your perspective, I would say, and that's when there is a conflict.

Laetitia: Mm. Yeah. Yeah, very good one. And I have another one which is for both of us, which is when our different wiring, so when we talk wiring, like neurotypical, neurodivergent, with our own lens and our own lived experience, but taught us something about ourselves.

Laetitia: So for me, I will kick off, like, what you are teaching me every day when I have a gazillion idea a minute, and you know that, it's like my ADHD self getting distracted with so many other things and, you know, being like, "Oh, Johan, we need to do this, and we need to do that," and so on. Like, is that needed now?

Laetitia: Is that truly a priority now? Is that, so, you know, this sense of calm and groundedness and not being, doing 100 million things and thinking at 100 million things at the same time as you're doing 100 million things, I think really helped me and ground me back to what is truly essential at this point in time.

Laetitia: So that's something you really taught me, and I know sometimes I get frustrated at this because I want all the thing to happen at once, but it's also not possible to have a zillion tabs open and achieving on those zillion things at the same time.

Laetitia: So now let's talk about Understanding Zoe and how it support our family. So how do you actually use Understanding Zoe yourself as Zoe's dad, Blue's dad, my partner, not just as a CTO, CPO of the app?

Johan: Yeah, look, I use it quite often. I find it fascinating to just kind of like on a daily basis drop like a couple of comments to Pip, about things that are happening in Zoe's life or even like in our life, and just seeing what Pip has to do, has to say with that.

Johan: I think Pip is really amazing at being super empathetic and, and yeah, making sense of what's happening in our life. So I really really enjoy using it for that.

Laetitia: Mm.

Johan: Yeah. What about you? Is there a moment where Understanding Zoe really helps our family, in a way that you, like kind of like stays with you at the moment?

Laetitia: Yeah. I think it was something I was talking about again today is how I used Understanding Zoe when I was going through the plan reviews, the NDIS plan review for Zoe, and how it helped me in seconds gather all of the things that has had happened in the last year and where do we need more support or the same support or less support for Zoe.

Laetitia: What are the things that we want to address during this meeting for the plan review? And I was so prepared, as I said, in seconds because it was gathering insights for the whole year.

Johan: Yeah.

Laetitia: And so for me that was really a critical moment, which then informed the fact that now we can generate report within the app.

Laetitia: At the time it was just generating kind of notes, but now it's like generating a report that you can even extract as a PDF and so on. But it was a big moment that I know I literally got so prepared for the meeting that the meeting went way better than I was expecting. I'm not saying that it was smooth and a delight.

Laetitia: It was still a lot of advocacy to be built and lots of moments where I felt gaslit, but at least I had critical, factual day time moments that I could use during my meeting rather than scrambling around notes and trying to find out like how I can advocate at this point in time for Zoe and for what she needs to thrive and be supported in the years to come.

Johan: Mm-hmm.

Laetitia: So that's one thing that really stays with me.

Johan: Yeah, I remember it was really really impressive what it did then. Yeah. And, yeah, I'm quite curious. I was thinking about when we first assessed Zoe, I was thinking, like, what would have been different if we had Understanding Zoe back then?

Johan: Like, what do you think would have been different?

Laetitia: Oh my goodness, such a good question. I think I would have had a greater understanding of the different form of neurodivergence, and I think I would have been more prepared for the feedback that we got from the clinicians. Whereas I came into that meeting not really knowing what to expect, not really knowing beyond my own biases what, you know, PDA was, Autistic was, ADHD was, OCD was, dyslexia, all of those, you know, words that I was not really across.

Johan: Yeah.

Laetitia: So I think if I had had Understanding Zoe early on and just been guided through the process, asking question, getting answer, you know, kind of being slowly educated, I'm sure during this clinician meeting I wouldn't have been, you know, kind of sitting there receiving everything and not really being able to interact or ask question or go deeper.

Laetitia: I would have been equipped for that, actually

Johan: Right.

Laetitia: to ask question and go deeper.

Johan: Yeah. Yeah, that makes sense. And thinking about the families that are listening to the podcast, what would you say to the many parents who are feeling completely alone in this journey?

Laetitia: I would just say, yes, you are definitely alone, and you are feeling alone, but you are not lonely, which is a big difference.

Laetitia: It's like, actually through our own research, our white paper where we researched on 1,091 family, we know that 93% of parents raising neurodivergence children are feeling misunderstood and invisible. So you are definitely feeling alone, lonely, sorry, but you are not alone in that journey. So, and the 33 hours a week that came out in our research of invisible load, coordination, advocacy, all of that is real as well.

Laetitia: So I think it's, yes, what you're feeling is real, the load is real, the invisibility is real, but know that other people are in the same boat, and what you're feeling is not about you doing something wrong, which I think for a long time I felt like this. I was like, "Oh my gosh, why is it so hard? Am I doing something wrong?"

Laetitia: So, Hopefully Understanding Zoe can support in that journey. And you really deserve to be seen as a parent, you deserve to be supported, you deserve to be understood, and we are doing the best we can within the platform to provide that support for you.

Laetitia: Great. And Johan, what would you say to the neurotypical partner who want to understand but does not know where to start?

Johan: Yeah. Well, I think it's similar to the answer that I provided before. I think just getting started and starting talking to Pip goes a long way. What I found at the beginning is that that fear of essentially the blank page, or the blank message, was quite a blocker.

Johan: But when I started just kind of like simple questions or simple statements to Pip was really useful because then Pip asked me question as well, which prompted me to think about different things and to keep going. So that would be my advice. Just start talking to Pip and build that muscle and before long you'll be able to chat almost on a day to day basis, with Pip.

Laetitia: Thank you so much. Thank you, Johan, for saying yes to this idea of doing a joint interview. I really enjoyed it.

Johan: Of course. Thank you. It was great.

Laetitia: Cool. That's a wrap for Neurodivergent Pulse. If this helped, follow the show and leave us a quick review on your favourite platform. You can even share this episode with someone who needs it.

Laetitia: You can learn more about our platform at understandingzoe.com. Thanks for listening.