F**king Normal

In this week’s episode, Lauren and Rina sit down with Brandi Amiss-Towler as she shares the extraordinary story of her son Caspian’s birth, the challenges of his early days, and how her experiences have driven her to retrain and pursue a career in law. Brandi offers a candid and raw account of the early days, navigating a complex medical journey with a large number of professionals and an extended hospital stay. She also reflects on what motivated her to take on her impressive journey to courtroom advocacy and shares some wise words of advice for other parents. What an incredible women!   Content WarningsStrong Language warning Prenatal diagnosis Infant deathBirth stories  Guest BiographyBrandi Amiss-Towler is originally from Kansas in the USA, but has called London her home since 2004. She is mother to two boys, her eldest is now 23 and her youngest, Caspian, is five. Caspian was born with a rare teratoma in his jaw. He has had significant surgeries, a tracheostomy and is PEG-fed. From the start, Brandi has been a fierce advocate for ensuring his needs are met. A month before Caspian was discharged from the hospital at 20 months old, she began law school to train as a barrister. Now, having been Called to the Bar, she practices social security law.Useful resourcesTeratoma - WikipediaMartha's Rule: says that where a parent questions the professional opinion of a professional, they have a right to request a review by a separate team https://www.england.nhs.uk/patient-safety/marthas-rule/Council for Disabled Childrenhttps://councilfordisabledchildren.org.uk/resources/all-resourcesCaudwell Childrenhttps://www.caudwellchildren.com/changing-lives/how-we-can-help/Provides services, funding, and training for families and children Mencap https://www.mencap.org.uk/Provides advice on benefits, housing, health and education. I've always found them to be very knowledgeable. Disability Rights UKwww.disabilityrightsuk.orgProduces the Disability Rights Handbook which provides guidance on disability benefits and social welfare law, also provides advice and other resources Disability Action-There is a disability hub in most boroughs. Just google Disability Action and see if there is one in your borough. Scope https://www.scope.org.uk/advice-and-supportProvides services, advice and support for disabled children and their families 

In this week’s episode, Lauren and Rina chat with museum curator and researcher Cat Troiano. Cat is mother to two young daughters, Stella (4) and Petra (almost 3). Stella has 5p minus syndrome, also known as Cri du Chat syndrome. Growing up in a multilingual family with a strong focus on language and linguistics, Cat’s perspective was profoundly transformed by her fight to meet Stella’s communication needs. This thought-provoking conversation delves into Cat’s journey, the challenges she faced and how she advocated to ensure Stella could more easily interact with the world around her.Content WarningsVery strong Language warning Diagnosis Guest BiographyCat lives in London with her husband, Giorgio, and their two daughters Stella and Petra. Cat works as Curator of Photography at the V&A, and Giorgio manages the design team at a lighting manufacturing company. Professionally, Cat comes from a research background, curating exhibitions and publishing or presenting regularly about photography in its historical and contemporary environments. She has significant experience working in complex institutions, and expertise in institutional policy and practice in the cultural sector. Incidentally, this armed her with a skill set that has proven particularly useful in advocating for Stella – who was born with a rare genetic syndrome – and navigating the paperwork, systems and therapies that help her thrive. Catherine has always been interested in language and linguistics, and she is forever grateful to Stella for upending her world view about language and communication. Useful resourcesfivepminus.org - 5p- Society. This is the American group (the biggest one) relating to the syndromeDocumentary by parent to child with 5p- A sweet mini-doc a filmmaker (also parent to CdCS child) made for a benefit concert in 2012. Raising a rare girl book - Heather Lanier's book 'Raising a Rare Girl' that Cat mentioned. Therarelife.ep-166-nonspeaking-child-longing-to-access-their-inner-world-give-them-medical-autonomy-w-suzi-boubion - Podcast episode referenced by Cat in which Suzy Boubion talks about her non-speaking child.

In this week’s episode, Lauren and Rina sit down with the accomplished theatrical duo David Thacker and Margot Leicester to discuss their experiences as parents of their youngest adult daughter, Elizabeth, who is autistic and has learning difficulties. In this warm and inspiring conversation, David and Margot reflect on their journey raising a disabled child and adult, offering heartfelt wisdom on what truly matters most.Content WarningsDiagnosis Guest BiographiesMargot was brought up in Middleton, Manchester with her younger brother. As a child, Margot always knew she wanted to be an actress and spent most of her time at the University of Leicester, where she studied English, acting in student productions. Spotted at the National Student Drama Festival in Exeter, she was invited to join the Exeter Northcott Theatre and has acted ever since, playing in regional theatres throughout the UK, at the National theatre, in several London theatres, in the West End, and on Broadway. Margot has appeared regularly on television. David was born in Higham Ferrers Northamptonshire and at six months his family moved to nearby Rushden where he was brought up with his two older sisters and his younger brother. He went to the University of York to study English and stayed to study for an MA in Shakespeare. He discovered his love for directing with the University Drama Society and directed several plays there. His first job was as an Assistant Stage Manager at York Theatre Royal, and he has worked in theatre and television since. He has been artistic director of three theatres, the Young Vic, Duke’s Playhouse Lancaster, Octagon Theatre Bolton and Director-in-Residence at the Royal Shakespeare Company. He has directed over 150 productions throughout the UK and internationally. David has also directed extensively for BBC, ITV, Channel 4 and WGBH Boston (USA). He continues to work as a freelancer and combines this with his role as Professor of Theatre and Film at University of Bolton.  Margot and David met in 1982 when David was Artistic Director of Duke’s Playhouse Lancaster and Margot acted there. They fell in love and have been together since, often working together across theatre, film and television.In a voluntary capacity, Margot is a trustee of Haringey Shed inclusive youth theatres and David was a governor of a primary and comprehensive school in Muswell Hill. They have four children and four grandchildren and live in Crouch End, London.Useful resources:Home - icandanceHaringey Shed

In the latest episode of the Fking Normal Podcast, hosts Rina and Lauren sit down with Cara Roughani to discuss her remarkable parenting journey and the inspiration behind creating SEND Protect. Cara, a passionate advocate for the financial empowerment of families with SEND children, shared her personal experiences navigating her parenting journey as well as the inspiration behind her founding SEND Protect. Wanting to educate families, parents and carers with the knowledge and tools they need to safeguard their child's finances, Cara used her vast experience in the field to create a safe space to help other families. The conversation is incredibly valuable as Cara answers finance related questions sent from the podcast community about money, savings, wills and pensions (to name just a few...)Content WarningsConversations about deathGuest BiographyCara Roughani is the founder and CEO of SEND Protect, where Cara provides resources, advice, and advocacy to help families access the services their children need, to ensure they have every opportunity to thrive. Being a parent to her own son Jayden, who was diagnosed with Autism, Cara wanted to gather her expertise in wealth management and finances to create something helpful to other parents. Uniting a range of experts in an array of financial sectors, SEND Protect provides tailored advice to ensure that SEND children’s futures are secured. Understanding that this isn’t just for the wealthy, Cara is passionate about empowering other parents with her wealth of financial know-how.Further Resourceswww.sendprotect.co.ukcara@sendprotect.co.uklisa@sendprotect.co.ukwww.citizensadvice.org.uknasen.org.ukwww.gov.uk

In this episode, Rina and Lauren talk with Sara Johnson about the birth and diagnosis of her now 19 year old son, who has 18p deletion syndrome. They discuss how this led to her career pivot, as after forging a successful career as a TV drama executive, Sara now focuses her efforts on advocating for and representing disabled talent in the industry. It is a sweary, candid and often emotional discussion, peppered with Sara’s wonderful nuggets of wisdom.  Content WarningsStrong Language warning Difficult pregnancy (Amnio and CVS procedures) Traumatic BirthGuest BiographySara Johnson is a TV drama executive with a career spanning 30 years. Sara began as a script Editor at EastEnders (BBC), before becoming Head of Drama at Sky aged 28, and 15 years later the Head of Fox drama for Europe and Africa. In between she brought the A Word to UK screens and worked at a high level across the industry, while navigating parenting and specifically as parent carer to her youngest son. In 2021 in a terrifying career pivot, she founded Inclusion Consultancy Bridge06, ready to take her passion and commitment in her personal life - as disability advocate - to make real change in the industry. Sara is now an Access Consultant and Agent, having formed the Access team at Casarotto Ramsay and Associates talent agency.. They represent Access Coordinators, a role she helped to train and commercialise with partner Julie Fernandez, alongside other Access roles.Sara is the author of book series The Treehouse At Number Nine and a lifelong trustee of Chromosome 18 Europe.Further ResourcesCasarotto Access TeamJack Thorne MacTaggart Lecture 2021 - Jack Thorne’s MacTaggart Lecture - where Jack slammed the industry for its treatment of disabled people and delivered a call to action: Unique | Understanding Rare Chromosome and Gene DisordersThe A Word - BBC iPlayer

On this weeks episode, Rina and Lauren chatted with South African native Marina Dias on her life as a SEND parent and her work as an Occupational Therapist. The trio discuss the initial difficulties when you’re first thrust into the parent/carer space, Marina’s difficult experience bringing her son Tommy into the world and how her work as an OT has played a role in how she helps not only the children she sees, but their families too.It’s a joyous and very frank conversation about the difficulties of being a parent, the impact this has on our mental health and how often you face judgement and the expectation to be ‘better’— just because you have experience with SEND.Content Warnings:FertilityStrong language DiagnosisDifficult labour and premature birthMental health struggles and depressionGuest Biography:Marina Dias is South African and works as a Paediatric Occupational Therapist in schools and independent practices across the UK. She is mum to Tommy who was born prematurely at 24 weeks and spent 97 days in hospital before being discharged. In 2020 he was diagnosed with Cerebral Palsy and is currently thriving at school. Marina says her greatest gift is her family who fill her with the upmost happiness and joy. Away from work and motherhood, Marina enjoys baking, painting and aerial hooping.