Episodes
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For the second season of the podcast “How we…special needs”, I thought of keeping the tone a bit more conversational, talking about topics that matter to us (me and you guys!) the most, sharing with you the blog posts, maybe doing fewer interviews (as I’m not that great an interviewer!).
Surely, I will keep sharing my and our experience with Kabuki syndrome and neurodivergence.
What do you think? Is there a topic you’d like me to discuss with you?
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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 special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know in the comments! 👇
You can find Simone here:
➡️ https://www.disinfluencer.co
➡️ https://www.instagram.com/disinfluencer.co/?hl=enSend me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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Missing episodes?
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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 many times by medical professionals who didn't recognise her condition.
Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know in the comments! 👇
You can find Sharon and her organisation here:
Website ➡️ https://anzfaid.org
Facebook ➡️ https://www.facebook.com/share/1CNWAmFxSF/?mibextid=wwXIfr
Instagram ➡️ https://www.instagram.com/autoinflammatory_aus_nz?igsh=MW9xdjEzbDZhYTVicA==Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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 talking about Kai's incredible resilience.
Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know!
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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“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 Mother’s Day, I’m giving a voice to the real struggles behind the glossy idea of “self-care” for mums like me. Especially those living in survival mode.
In this brutally honest and slightly funny episode, I’m breaking down:
💚 Why “take care of yourself” often feels like a slap in the face
💚 The stark difference between life on plane A vs plane B
💚 What survival actually looks like for a medical mum
💚 The *real* basics mums should focus on (poop, eat, drink)
💚 Practical tips on how to support the mums in your life *without* sounding dismissive
This Mother’s Day, let’s stop giving advice—and start offering real help.
🎥 Also available as a video: https://youtu.be/lSxHgxCvOAs
📲 Follow for more stories of love, strength, and Kabuki Syndrome: @MyKabukiGirl
#HappyMothersDay #MyKabukiGirl #SpecialNeedsParenting
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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, and the terrifying uncertainties that come with Kabuki Syndrome. But I also share what gives me strength: a superhero metaphor that unexpectedly became my lifeline.
💚 If this story resonates, please share this podcast. You never know who might need to hear it today.
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📌 Follow our journey on socials: @mykabukigirl
🎥 Watch the video version on YouTube: https://youtu.be/xtA1BfNg9Cs orRead the blog post: https://www.mykabukigirl.com/post/the-lantern-against-all-fears
#MyKabukiGirl #SpecialNeedsMama #SpecialNeedsParenting #KabukiSyndromeAwareness #GreenLantern #RareButReal #DisabilityParenting #MedicalMum #HeartWarriorMama #LoveIsMySuperpower #RealParentingMoments #RareDiseaseAwareness #storiesthatstir
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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 brings something meaningful to your day.
💚 Read the blog on https://www.mykabukigirl.com/post/25-april-for-us
🎧 Follow the podcast for more stories, reflections, and interviews in the special needs world.#HowWeSpecialNeeds #KabukiSyndrome #AnzacDay #LiberationDay #SpecialNeedsParenting #LestWeForget #PeaceMatters #ItalianAustralian #ParentingReflections #DisabilityAwareness #MyKabukiGirl #SpecialNeedsPodcast #FestaDellaLiberazione
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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🎙️ 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 & mindset strategies to stay grounded
💚 A free downloadable tool I created to help you track your child’s brace usage, side effects, and improvements🎁 Grab the spreadsheet here: https://www.mykabukigirl.com/hip-brace-tracker
This is not medical advice—just a mum sharing her journey through Kabuki Syndrome and everything that comes with it. If your child is starting with a brace or you’re just feeling overwhelmed by one more thing, I see you. I’m with you. And I hope this episode brings you some clarity and comfort.
💌 Let’s connect on Instagram: @MyKabukiGirl
📺 You can also watch the full video on YouTube: https://www.youtube.com/watch?v=1EobfkRxaH4Or you can read it on my blog 👉 https://www.mykabukigirl.com/post/life-with-a-swash-brace-what-parents-should-know
#SWASHbrace #SpecialNeedsParenting #KabukiSyndrome #Orthotics #ParentingAChildWithDisabilities #HowWeSpecialNeeds
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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!Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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!Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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? Let me know in the comments!
You can find Ana here: https://www.instagram.com/anamariaromanow/
👉 Next Episode Teaser: Special Needs Family Vlog: How we spent the HolidaysSend me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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 from Grace": https://www.mykabukigirl.com/impressions-from-grace
Merry Christmas to you all 🎄
👉 Next Episode Teaser: A journey with Menkes Disease | Interview with Ana RomanowSend me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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🎙️ 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, reflect on those challenging moments, and find peace in letting go of anger that has weighed me down for two years. This heartfelt episode is my Christmas gift to you—a reminder of the beauty of love, grace, and healing, even in the hardest times.
Grab a warm drink, sit by the Christmas tree, and let this story warm your heart. 💖
🎧 Listen now wherever you get your podcasts.
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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.
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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 about how milestones can help guide us, but also how they sometimes miss the mark for special needs families.
Let’s rethink what progress looks like, celebrate our kids’ wins on their terms, and discuss why it’s time to develop inclusive benchmarks that reflect diverse journeys.
Join me for a conversation filled with insights, lessons, and a few laughs as I learn to be proud of Beatrice’s incredible progress—no matter the number. 💖
👉 Next Episode Teaser: Storytime: My mum is with me
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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: Celebrating My Daughter’s Journey with Communication Delays.
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
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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 that, if one of us is experiencing certain emotions, many others are feeling the same way but have not reached out yet.
And so I created this podcast, where I will share with you the tears, the laughs, the questions I have or that you have and I’ll interview many other special needs parents, in order to get to know a bit better each other’s roadblocks and victories.
We are a community and we are stronger together. So if you want to join, please follow the podcast on your favourite platform and get ready for this hopeful, emotional, crazy ride in the world of special needs and special people.
I’ll do my best to post a new episode weekly or fortnightly and I look forward to reading your comments and feedback.
Stay safe. Ciao.
Send me a feedback!
Support the show
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 share your thoughts!Check the website www.mykabukigirl.com for merchandise and so much more!👀
Stay safe, ciao! ☺️
