Effie Parks doesn’t mind being called “strong”

Post-traumatic growth, a failsafe playground hack and “a luxurious amount of appreciation” for life’s small things are all part of this conversation with the podcaster behind Once Upon a Gene.

Between coaxing and carrying him out of bed, priming his feeding tube bag, preparing his medications and charging up his AAC device, it takes a lot of effort for Effie Parks to help her seven-year-old son, Ford, out the door and off to school. But first, coffee.

“I always have a cuppa before I take care of my children,” says the host of Once Upon a Gene, a podcast dedicated to families that, like her own, are raising kids with rare conditions. “I honestly don’t care if anything is on fire. I drink a cup of coffee before I do anything. It’s just something I do and I love it. It’s one of my favourite parts of my day.”

Effie grew up among 12 (yes, 12) siblings in the US state of Montana. She chats now from her home on Mercer Island, Washington, while her husband Casey wrangles their two children, Ford and his younger sister, Esme. “I married someone who’s so much better, nicer, and much more patient than me, thank God,” Effie laughs. “He’s so positive – and not in the annoying way”.

The couple’s first born has CTNNB1 syndrome, a rare genetic condition he shares with only a few hundred others in the world. Having inspired Effie’s multi-award winning podcast, Ford has also seen his mum transform into an advocating, change-making “badass”.

Here, Effie shares some of what she’s learned along the way.

How did it feel when, after what you’ve described as a “perfect” pregnancy, you discovered Ford wouldn’t be following a typical trajectory?

Oh my gosh, absolutely horrified and heartbroken. Ashamed and scared, you know, all those kinds of feelings. And even now, sometimes, I’m like, I have to do this for the rest of my life. How is this my life? That is still there for me, but I’ve also become so empowered in many ways. I’m so sure of who I am now and I’m proud of myself, for the most part. I feel like I’ve had so much post-traumatic growth.

A lot of parents like us get very angry if someone calls them “strong”, but I just don’t feel that way. First of all, I don’t have time to get angry about people’s generally complimentary things that they’re saying, whether they’re off-base or not. I definitely don’t have space for that sort of reactive state. But also, I am strong.

Whatever new crisis we’re in, I’m better at it every time. And I’m able to spread some of my knowledge to help other parents. I think that’s a testament to my strength, also, so I really just kind of own that. If someone calls me strong, I’m like, oh my gosh, I know, I am! I am a badass!

And a lot of that is because you face this adversity, right? You go through the thing that you never imagined that you would or could go through and you do it. And if you try to grow from it, you really become a force. I think that we should appreciate that more about ourselves, rather than get hung up on language and stuff like that.

On the topic of language, as someone living and working in the disability space, I’m curious to know how you feel about the term “special needs”.

I never used the term special needs. I never even used to hashtag anything with it because when I was introduced to this world, I became friends with [fellow podcasters] the Two Disabled Dudes. So I just always used that terminology, not because I thought the other one was wrong or bad, it was just how we identified.

Then as I was in this community for longer, I learned that people who were using the term ‘special needs’ were using it for various reasons. It’s a geographical thing. It’s a softer landing for some people, especially when their children are babies. Lots of things still have that name on it, you know, like ‘special needs trust’, ‘special education’. It’s a term that people know without you having to explain anything.

The people that I know who use that term are the kindest people on the planet and I will never shame them for choosing the word that makes them feel okay and comfortable. Everyone has the choice of how they want to identify as a family and I will not judge anyone for that. If that’s how they want to be identified, cool. I introduce Ford as my little disabled dude. Your’s is a special-needs kid. Rock on.

In the last year I actually started putting the ‘special needs’ hashtag on my stuff because I was like, you know what? I’m completely leaving out an entire demographic of families who could be benefiting from this content and they’re not finding me because I don’t use their language.

I've talked to a lot of disabled adults about it and most of them don't care. I mean, the only ones that do care that I have found are the ones who have a voice – they can talk – and have no intellectual disability. They don’t represent everyone.

In our community, especially where kids have rare disorders, many of them are never going to talk. They have intellectual disability and we are their voice. I think there’s a chair at the table for the caregiver – and what we say and what we are going through and how we are as a family has absolutely just as much room there.

You are absolutely owning that space through your podcast and advocacy work, which also sees you speaking at medical conferences and on television, by way of the Disorder Channel. Before all this amazing work kicked off, how did you start connecting with other parents in the rare community?

In the first couple of years, everything was awful. And I was like, what is happening? I don’t know anyone. I can’t hang out with any of my friends anymore because their babies are walking and mine’s not, you know? It was so isolating and so consuming. I felt so disconnected – and I had never been disconnected. I have the biggest family ever and I have beautiful friends, but I was just not answering my phone.

I started searching for podcasts and I found a couple, one of which just spoke to my soul and I was like, I’ve found my people. For the first time ever, I feel seen. I feel hopeful. And I am going to start a podcast right now because there needs to be more of this.

Once Upon a Gene started out of desperation and I just put it out there. I didn't even use the words ‘rare disease’ at first because our doctors didn’t, so I didn’t even really understand then that Ford was a rare disease patient. It was only once the podcast came out that I was like, oh, there’s a rare disease community. I am in that community. And the podcast took off very quickly because it filled a giant, gaping hole at the time.

On your podcast you dig into some very heavy topics – child loss, for example – but every one of your episodes has a lightness to it. Why is this?

I’ve always believed there’s a magical power in Once Upon a Gene. I try not to direct the conversation or pre-plan it, so I don’t give people questions prior to our interview. I typically ask them, what’s the message that they want to share? And people do a little soul searching and think about that. Most of the people who get on my show have followed me for a long time and they get my vibe and know who I am.

The people who are drawn to my show and to me, as a person, are not stuck – and I think that’s a big piece of it. They might be completely obliterated and in grief-stricken land because their child died, but they’re not stuck. Having been in this community for seven years, you see things, right? And you notice things. Especially as language changes and things get popular and social media has so much dominance over what people think.

There are people who are drawn to being constantly validated to a point where I call it toxic validation. Whereas in my community it’s more like, yeah, I get it, and then what? It might be, then nothing. But it’s not, let's sit in that, let’s talk about our trauma all day and just beat it to death. How about, maybe we take action. Maybe we laugh about it. Maybe we make humour about it. Maybe we figure out what else there is to this.

When you start figuring out ways that you can grow from a situation, a lot of things change about your personality and the kind of content you consume.

I think we have something really unique – a luxurious amount of appreciation for the itsy bitsy things in life, and this makes it that much better. Being able to experience that and notice that about yourself is pretty cool.

I read an article of yours where you wrote about kids coming up to you and your kids when you’re out at the park. Does this happen a lot?

I have so many park encounters that have traumatised me! In that article, was I talking about how I bring my headphones to the playground?

Yep, that’s the one.

Okay. Well there you go, parents! If you’re still struggling out and about and at the playground – especially if you're having a weaker day or you didn’t sleep well – invest in noise-cancelling headphones. I’ve found that the playground can be very activating, so I bring them with me and I check myself when I’m there. If I’m feeling a little achy because I see all these boys that are Ford’s age playing basketball, I might need to just put on my headphones and listen to music or a podcast and literally block all this stuff out.

If I’m not feeling good, I don’t want to educate your kid. I don't want to tell a little Bobby why Ford’s legs don’t work. I don’t want to tell little Bobby why Ford is screaming happily. I don't want to do it. And today, it’s not my job. So I’ll put my headphones on and ignore your kid. I hope you see that he’s staring at my kid and you come over and talk to us.

That’s my safety net at parks. I don't have to use it all the time, but I know when I’m not in my best place that those puppies are going over my head because I ain’t got time for that. We don't have to be supermum in every instance out in public and educate everyone. You don’t have to do that all the time, but when you can, great, do it.

Have you got much support around your family? Is there anyone aside from you and Casey who can take care of Ford?

Casey’s mum helps me as often as she can. I call her Saint Mariana. And then my best friend Katie, who lives a whole ferry ride away from me, comes over several times a week. She just walks in my door, unpacks all the feeding-tube boxes and puts things away. Maybe she’ll tell me to go do my laundry and she’ll go sit with my kids and play with them.

Katie just swoops in and has learned how to do this stuff and it has saved my life, especially over the last couple of years. I don't know what I would do without her because she’s funny and fun and she makes it seem like we’re just hanging out. I don’t pay her, she just does it because she’s going to the good place.

Here in America, at least in the state of Washington, it is almost impossible to get help through the state. I've been trying for seven years and I still haven't got someone to help me.

I was chatting with Jess Ronne, a fellow US-based parent carer, and she was telling me it completely depends on what state you’re in as to whether or not you can access professional support.

Yes, it’s a total mess. But I hope we can find someone who becomes family, who I can count on to help me with Ford. I hope that magical unicorn comes around – especially for Ford, because he loves people so much.

How about Ford and his sister, Esme. What’s their relationship like right now?

It’s mostly this beautiful, sweet thing. We’re catching these moments where Esy will go out of her way to go up to Ford and ask him questions, or decide to play balloon with him. Those moments just melt me into a thousand pieces.

Then there are days when she’s a little standoffish, because maybe he pulled her hair or swatted at her, so it vacillates between those two. But recently, especially, she’s been a lot more gentle and patient with him and it’s really special to watch. It’s my favourite thing in the world.

Looking ahead, what’s got you excited on the professional front?

I have some ideas that I want to try to figure out for 2024. Like, I really want to translate my podcast into a couple of languages and send it out so those families who can’t speak English can hear it. I’ve been getting some help with an AI program that makes it sounds like me speaking the language – it’s so cool. So I’m hoping that I can make that work.

I also want to start doing some in-person events on stage. I think 2024 is just me dabbling in lots of cool things that I've never had time to do that I think would be rad.

Before we wrap up, what advice do you have for people who are new to caring for a child with disability?

I would say the most important thing is to find the people that make you feel good. Find the people that will laugh at your dark humour. Find the people that will make you take walks and get out of the house and who will text you at two in the morning if you need it. Once you find those people, you will never be alone again.

That’s the most important piece to getting out of that hole that we’re all in at the beginning, especially, because you can get out. You can have some post-traumatic growth from this and it can be so rewarding. These kids are gorgeous and beautiful and perfect, right? And you will learn so much about yourself and really understand how capable you are. It’s awesome.

Follow Effie’s story on her Instagram and Facebook accounts. Find Once Upon a Gene on your favourite podcasts platform.

Let’s clear out the complexities of care. Try Hibi for free here.

Want to share your parent-carer story? We’d love to hear it. Get in touch with our team at hello@hibi.health