Denise Astill is the founder of FACS, an organisation set up to support and raise awareness for Foetal Anti-Convulsant Syndrome. Her twin daughters were born with the funding and qualify for ACC funding. But she knows that many families miss out on this vital funding.
Carla McNeil comes to this conversation as a mother, an educator and now a professional advocate for children with dyslexia in her role at Learning Matters. In this episode she talks about what she sees as the key issues in the classroom for teachers and learners when there is a learning difference present.
Kerry Hodge and her family were dreading the new school year without the necessary supports for her son, Felix. In this episode she talks about the struggle to get new supports and how she feels lucky, but really it shouldn't be about luck, these kinds of supports should come standard.
Paula Tesoriero is New Zealand's Disability Rights Commissioner. In this episode she talks about what she intends to do in the role and how she came to terms with her own disability caused by amniotic band syndrome before she was born.
People buy houses in specific zones for the schools they offer their children, but when you have a child with learning disabilities and complex needs in New Zealand, you may have to move entire cities just to get your child an equitable education. This is the story of Tansy Sayers, her son Charlie, and their move from the Wairarapa to Wellington to get Charlie the education he deserved and needed.
Beth Armstrong struggled to find equitable education for her daughter Molly. They tried one school after another, and despite some valiant efforts on the part of the schools and teachers, it wasn't until she reached high school, where there was a dedicated unit for students with disabilities and complex needs that Molly started to flourish.
In this episode Beth tells her journey of trying to find equity for Molly in a system which doesn't give many options.
Rebekah Corlett is a fierce advocate for disability rights and equity in education. She does this on behalf of her daughter Sophia, but also on behalf of other children and teens in New Zealand who aren't getting a fair shot in the education system.
At 20 weeks pregnant, doctors told Nicole and her husband Ben that something was wrong with their child's brain. When Pierce was born he struggled to breath, and at six weeks he had a tracheostomy.
But it wasn't until Nicole googled facial paralysis when Pierce was 6 months old that they discovered he had Moebius Syndrome. This episode, released for the 24th of January, Moebius Syndrome Awareness Day, tells their story.
To kick off this short series on education in New Zealand and the challenges parents, kids, teachers and teacher aides have, we've got Emily Writes, author of the brilliant Rants in the Dark, and fierce advocate for her children.
Jasmine Platt's daughter was diagnosed shortly after birth as having a catastrophic brain condition known as burst suppression. She was devastated to learn her daughter would never walk or talk and they would never know how she perceived the world. Now, six years later, Jasmine is on a mission to help NZ parents who are given a complex disability diagnosis for their child, to get therapy to help them cope. At present, in NZ, there is no specific funding for this kind of grief, and Jasmine is trying to ensure that other parents in her shoes get the mental health support they need. This is her story.
Alex knew from early on that Lucy was a unique kid. She was diagnosed with Autism, as her mother suspected, and a few years later she told her parents that she was a girl, she was Lucy. This episode looks at Alex and Lucy's journey, and how Lucy became Lucy.
When David and Jane had David Jnr.* they had no idea that anything was wrong. When David Jnr was born with a rare and complex condition that should have been picked up in utero they decided to file a wrongful birth claim. This episode explores what this claim really means for David Jnr and for the family, and what drove them to do it. (*Names have been changed.)
When Adrianne and her husband had their son Xavier, they discovered he had the incredibly rare condition called Schinzel Giedion syndrome. Children with this syndrome typically don't live past two years old, but Xavier beat those odds and lived to be almost eight years old. Earlier this year he died, just shy of his 8th birthday. In this episode Adrianne talks about his diagnosis, his life and his death.
Developmental neuropsychologist Dr. Robin McEvoy and LEAP specialist Kim Gangwish field phone calls, day in day out, from desperate parents who want to help their children. Their children are struggling either with their behaviour, their education or their attention, and they need to know what to do.
After fielding these phone calls for years, Robin and Kim partnered with writer and trauma therapist, Marijke Jones, and set about creating a resource that would replace that phone call. They created Child Decoded, a resource for parents who want to know where to turn and who to talk to when their child's needs exceed those of a regular paediatrician. In this episode, Robin talks about the creation of the book and the struggles of parenting when you don't know what to do next.
When Eric and his wife found out their newborn son, Liam, had Miller Dieker Syndrome, they didn't react the way many couples would. That's because they weren't like many couples. They had already lost multiple pregnancies and suffered the still born birth of their son Ben. So instead of grieving Liam's diagnosis, they got on with being the best parents to him that they could possibly be.
When Loretta's son Charlie started behaving in more and more defiant ways, she refused to believe he was just a naughty boy, and sought to find a reason for his anger and aggression. What she found was Oppositional Defiance Disorder with aggression.
Unlike most Trisomy 21, or Down Syndrome, diagnoses which tend to happen in utero or at birth, Andrea and her husband Joe didn't get the diagnosis for their son, Kai, until he was already 14 months old. This late diagnosis rocked them, because it forced them to reconsider who their son was and how their lives would look. Andrea tells the story of how they came to realise Kai was what their family had always needed.
When Heather Avis and her husband realised they couldn't have children, they turned to adoption. The adoption journey took them to places they never thought they would go and the now have three children, two of which have Down Syndrome. This episode talks about that journey and Heather's upcoming book, The Lucky Few.
When Ellie and Mike found out their daughter, Ellie, had a rare form of leukodystrophy called leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation, or LBSL for short, they were devastated.This episode tells the story of the discovery of this diagnosis and what they have done since then to fund research for a cure.
Artist, writer and art teacher, David Borden lost his daughter to complications of cerebral palsy in 2015, just shy of her 16th birthday. Since then he has been working on a graphic novel, And So We Rise, which chronicles her life and shares her story.
After two miscarriages LaTanya and her husband Greg had their son, Tre. After Tre's birth he was diagnosed with arthrogryposis, a condition which causes multiple joint contractures throughout the body. At age seven, Tre was also diagnosed with autism. Through her journey with Tre, LaTanya tells us about how she become her son's advocate and learned to maximise life and experiences for Tre.
In this episode the tables turn and Tessa gives up her spot as host and becomes the guest to share her own special needs parenting journey. With special guest host Kelsey Dilts McGregor, Tessa talks about her journey with Eva, from her pregnancy to her diagnosis of CHARGE Syndrome, to her death.
For the first 18 months of Carrie and Gabe's son, Frankie's, life, he was in and out of hospital trying to get on top of infections and seizures caused by a rare combination of Mowat Wilson Syndrome and infantile spasms, or West Syndrome. Now, they have been out of hospital for 6 months and are sharing their story here.
Ashley Jones and her husband Keith had no idea of the rollercoaster ride they were going to get on when they had their first child, Victoria. Victoria, who is now a happy toddler, was born with a tracheoesophageal fistula (TEF) which is an abnormal connection (fistula) between the esophagus and the trachea, and suffered global and universal brain damage through the labour process. This episode follows their journey as they came to terms with both her congenital issues and her brain damage.
Amy Street is the new web series from Bella Pacific Media which tells the stories of 9 residents at the Supported Lifestyle Hauraki Trust in Thames, NZ. The Trust is houses and takes care of more than 60 adults with disabilities. It's more than just a special needs facility though, it's a home, a community, a place for these 9 people and their neighbours to live their best lives. This episode talks to Viv Kernick and Kirsty Griffin from Bella Pacific Media about their web series Amy Street and what it was like to make it.