How We...Special Needs

My Kabuki Girl

Welcome to How We... Special Needs, a podcast about navigating life with Special Needs and how it transforms families. This podcast aims to share how we talk about Special Needs, how we live with Special Needs, and how Special Needs have changed our families. I’m Minie, an Italian special needs mum living in Sydney, sharing my personal diary as I walk alongside my daughter’s journey with Kabuki Syndrome. But this podcast isn’t just about us - it’s about us. Through heartfelt stories, interviews with other special needs parents, and honest conversations, we’ll explore the challenges, victories, and emotions that come with raising extraordinary children. Together, we’ll share the tears, the laughter, and the questions we might be too afraid to ask. Whether you’re part of the special needs community or simply curious about this roller coaster called life, you’re welcome here. This podcast offers a raw, relatable, and unconventional window into the world of disabilities, genetic conditions, and medical families. I aim to release new episodes weekly or fortnightly, and I’d love to hear your thoughts and feedback along the way. Let’s celebrate the love, strength, and stories that make this journey unforgettable. 💚

  1. 05/09/2025

    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 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! ☺️

    12 min
  2. 05/02/2025

    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, 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. — 📌 Follow our journey on socials: @mykabukigirl 🎥 Watch the video version on YouTube: https://youtu.be/xtA1BfNg9Cs or Read 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! ☺️

    16 min
  3. 04/18/2025

    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 & 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=1EobfkRxaH4 Or 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! ☺️

    19 min

Trailers

About

Welcome to How We... Special Needs, a podcast about navigating life with Special Needs and how it transforms families. This podcast aims to share how we talk about Special Needs, how we live with Special Needs, and how Special Needs have changed our families. I’m Minie, an Italian special needs mum living in Sydney, sharing my personal diary as I walk alongside my daughter’s journey with Kabuki Syndrome. But this podcast isn’t just about us - it’s about us. Through heartfelt stories, interviews with other special needs parents, and honest conversations, we’ll explore the challenges, victories, and emotions that come with raising extraordinary children. Together, we’ll share the tears, the laughter, and the questions we might be too afraid to ask. Whether you’re part of the special needs community or simply curious about this roller coaster called life, you’re welcome here. This podcast offers a raw, relatable, and unconventional window into the world of disabilities, genetic conditions, and medical families. I aim to release new episodes weekly or fortnightly, and I’d love to hear your thoughts and feedback along the way. Let’s celebrate the love, strength, and stories that make this journey unforgettable. 💚