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How We...Special Needs
My Kabuki Girl
16 episodes
3 weeks ago
Hi guys, I'm Minie, #Italian special needs mum from #Sydney! 🇮🇹🇦🇺Welcome to our channel, where I share our daughter’s journey with #Kabukisyndrome. In this podcast episode, I interview Simone, a mum and entrepreneur who shares her son's journey with Congenital Nephrotic Syndrome of the Finnish type. The interview touches the complexities of kidney transplants on babies, the relationship between siblings, the creation of an agency aimed at raising awareness on disabilities and more. Are you a ...
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Parenting
Personal Journals,
Education,
Kids & Family,
Society & Culture,
Self-Improvement
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All content for How We...Special Needs is the property of My Kabuki Girl and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Hi guys, I'm Minie, #Italian special needs mum from #Sydney! 🇮🇹🇦🇺Welcome to our channel, where I share our daughter’s journey with #Kabukisyndrome. In this podcast episode, I interview Simone, a mum and entrepreneur who shares her son's journey with Congenital Nephrotic Syndrome of the Finnish type. The interview touches the complexities of kidney transplants on babies, the relationship between siblings, the creation of an agency aimed at raising awareness on disabilities and more. Are you a ...
Show more...
Parenting
Personal Journals,
Education,
Kids & Family,
Society & Culture,
Self-Improvement
Episodes (16/16)
How We...Special Needs
A journey with CNF | Interview with Simone Eyles
Hi guys, I'm Minie, #Italian special needs mum from #Sydney! 🇮🇹🇦🇺Welcome to our channel, where I share our daughter’s journey with #Kabukisyndrome. In this podcast episode, I interview Simone, a mum and entrepreneur who shares her son's journey with Congenital Nephrotic Syndrome of the Finnish type. The interview touches the complexities of kidney transplants on babies, the relationship between siblings, the creation of an agency aimed at raising awareness on disabilities and more. Are you a ...
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3 weeks ago
39 minutes

How We...Special Needs
A journey with Auto inflammatory disease | Interview with Sharon Kensell
Hi guys, I'm Minie, #Italian special needs mum from #Sydney! 🇮🇹🇦🇺Welcome to our channel, where I share our daughter’s journey with #Kabukisyndrome. In this podcast episode I interview Sharon, my first guest who will speak about the challenges of having a genetic chronic condition herself, while also advocating for her daughter (and son). In this interview she touches the very important topic of medical gaslight and how hard it was for her to get a proper diagnosis, despite being dismissed man...
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1 month ago
41 minutes

How We...Special Needs
A journey with Hirschsprung Disease and ASD | Interview with Mari Suzuki
In this podcast episode I interview Mari, an amazing mum - and Zumba instructor - who shares on socials Kai's (her son) journey with Hirschsprung Disease and ASD (autism). The interview spans from the complexities of a bowel disease like Hirschsprung, to an episode of discrimination from a day care centre, the challenges that couples face when their child has very complex needs, and more. Mari explains everything with such grace, patience and determination, but also lots of emotions while tal...
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5 months ago
46 minutes

How We...Special Needs
Stop Telling Mums to Take Care of Themselves
“You should take care of yourself!” “Go get a massage!” “Don’t forget to rest!” Have you ever heard these well-meaning but *completely useless* pieces of advice? I did—over and over again—when I was a new mum, deep in the trenches of sleepless nights, hospital visits, and feeding pumps. And let me tell you: they didn’t help. At all. Hi, I’m Minie, a special needs mum based in Sydney, and today’s video is part rant, part love letter, part public service announcement. For Mo...
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6 months ago
11 minutes

How We...Special Needs
The Lantern Against All Fears | A Special Needs Story that Stirs
I was invited to speak on the theme "expansion" at the event @Storiesthatstir, on the 24th February 2025. I know the lovely organiser, Monica, and I was honoured when she invited me to talk about our story. This is the story of how becoming a special needs parent didn’t just expand our world—it catapulted us into a multiverse. One filled with fear, medical trauma, endless questions... but above all, with love. I share our journey through rare disease diagnosis, NICU stays, open-heart surgery,...
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6 months ago
16 minutes

How We...Special Needs
Two Countries, One Date | What 25 April Means to Our Family
What happens when one date—April 25th—means two completely different things depending on where you live? In this reflective episode, I read a blog entry I wrote about Anzac Day and Liberation Day, and what they mean to me as an Italian-Australian mum raising a child with special needs. Whether it’s silence or celebration, loss or liberation, this day reminds us of the importance of memory, peace, and teaching our children the deeper values behind historical facts. I hope this reflection bring...
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6 months ago
7 minutes

How We...Special Needs
Life with a SWASH Brace | What Parents Should Know
🎙️ Life with a SWASH Brace: What Parents Should Know When my daughter was prescribed a SWASH brace, I didn’t expect to cry—but I did. In this episode, I’m sharing our honest experience with this hip-stabilizing orthosis: the emotions, the pros and cons, and how we’re learning to cope day by day. You’ll hear: 💚 What the SWASH brace is and why it's used 💚 My unfiltered reaction as a special needs mum 💚 The practical side—how we put it on, adapt it, and prevent wear and tear 💚 Emotional & mi...
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6 months ago
19 minutes

How We...Special Needs
A journey with Kleefstra Syndrome | Interview with La Toya Redman
In this podcast episode I interview La Toya, a sweet and strong mum who shares on socials Luna's (her daughter) journey with Kleefstra Syndrome. La Toya shares Luna's and her family's roller coaster with such honesty and courage, it's truly inspiring to hear her story! Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know! Did you like this episode? Let me know! 💕 Don’t forget to subscribe for more stories of love, strength, and Kabuki ...
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7 months ago
50 minutes

How We...Special Needs
Storytime | The Butterflies in Our Kitchen
It's story time! In this episode I will share with you the story behind the lovely butterflies that for two years have populated our kitchen and dining room, and why it's so hard to say goodbye. What should I do now? Should I put them back? Should I put something else instead? Let me know in the comments! Did you like this episode? Let me know! 💕 Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome. Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and sha...
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10 months ago
7 minutes

How We...Special Needs
A journey with Menkes Disease | Interview with Ana Romanow
This is my first interview and it couldn't have been with a better guest: Ana Romanow. She's a super mum and super woman who's sharing her son's journey with Menkes Disease. Although Philip is not here with us anymore, his light and meaningful life keep inspiring all of us! I am so grateful that Ana allowed us to know even just a fragment of her intense experience with motherhood and Menkes. Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? L...
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10 months ago
1 hour 1 minute

How We...Special Needs
Our 2024 Recap | Chat & Cooking Gnocchi di Patate
We recorded this episode on Christmas Eve and we made gnocchi di patate (potato gnocchi), while recapping what happened in our 2024. Check the YouTube video to see the cooking part! Have you ever tried gnocchi? Let me know in the comments! Here are a few links that I mention in this episode: Recipe of gnocchi: https://www.youtube.com/watch?v=mekB2Mg2eRs Tube Weaning Spreadsheet: https://www.mykabukigirl.com/foodtracker Merchandise: https://www.mykabukigirl.com/store Manny's CD "Impressions ...
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10 months ago
15 minutes

How We...Special Needs
The nurse I hated on Christmas Day
🎙️ Episode 5: Forgiveness and a Christmas to Remember This week on How We...Special Needs, I share a deeply personal story from Christmas 2022—our first Christmas as a family, spent in a hospital ward with our newborn daughter recovering from open-heart surgery. It’s a story of exhaustion, pain, and a difficult encounter that left a lasting mark. But this episode isn’t just about hardship. It’s also about growth, faith, and the power of forgiveness. Join me as I revisit a page from my diary, ...
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10 months ago
12 minutes

How We...Special Needs
BONUS Storytime: My mum is with me
When our therapy centre unexpectedly increased their charges, I was overwhelmed, frustrated, and at a crossroads. But on a tearful drive to yet another therapy session, an unexpected moment changed everything—a sign from my mum, through the beautiful notes of The Blue Danube. Do you have a beloved one who is not with you anymore, and yet is still "with you" all the time? Let me know in the comments! 👉 Next Episode Teaser: The nurse I hated on Christmas Day. Did you like this episode? Let me k...
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11 months ago
6 minutes

How We...Special Needs
Celebrating My Daughter’s Journey with Communication Delays
In this episode of How We…Special Needs, I’m diving into a topic we all know too well: milestones. My daughter Beatrice, who has Kabuki syndrome, has made incredible strides with her communication—she can now say 20 words! But as any parent in our community knows, milestones can be a double-edged sword. I’ll share a personal moment of Googling how many words a typical 2-year-old speaks (spoiler alert: it wasn’t what I expected) and explore how I’ve learned to reframe comparisons. We'll chat a...
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11 months ago
10 minutes

How We...Special Needs
A Message for My Daughter’s second Birthday
Welcome to the first episode of How We...Special Needs! 🌟 I dedicate it to my beautiful daughter, Beatrice, as she celebrates her 2nd birthday. I reflect on the challenges and triumphs of her first two years—open-heart surgery at 8 days old, endless hospital stays, therapies, and milestones we’ve celebrated together. What a journey, guys! 🎉 Join me as I shout “Hip Hip Hooray!” for Beatrice and set the tone for what’s to come on this podcast. 👉 Next Episode Teaser: Why Comparisons Matter: Cele...
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11 months ago
10 minutes

How We...Special Needs
Trailer of How We...Special Needs
Hi, I’m Minie, an Italian special needs mum based in Sydney. My daughter has a rare genetic condition called Kabuki syndrome and on My Kabuki Girl I share our journey throughout medical issues, disabilities, therapies and lovely family moments. But here’s the thing: there are so many traumas, so many aspects of special needs parenting and motherhood in general that are completely ignored by society or, even worse, treated like tabus, and that instead I feel we should talk about. I believe tha...
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11 months ago
1 minute

How We...Special Needs
Hi guys, I'm Minie, #Italian special needs mum from #Sydney! 🇮🇹🇦🇺Welcome to our channel, where I share our daughter’s journey with #Kabukisyndrome. In this podcast episode, I interview Simone, a mum and entrepreneur who shares her son's journey with Congenital Nephrotic Syndrome of the Finnish type. The interview touches the complexities of kidney transplants on babies, the relationship between siblings, the creation of an agency aimed at raising awareness on disabilities and more. Are you a ...