Explorez tous les épisodes de F**king Normal
| Date | Titre | Durée | |
|---|---|---|---|
| 03 Aug 2022 | EP 1: Loneliness and raising a disabled child, with single-mum Genevieve Porritt. | 00:47:31 | |
Gen says ‘you can be surrounded by people but if none of those people ‘get it’ it can be incredibly isolating. The loneliest I felt was strongest when I realised, I had lost my identity, Gen had gone, only Mummy remained. Finding a community who ‘get it’, support you, encourage you, laugh with you, cry with you, rant with you allowed me to begin to find Gen again.’ Our interview with Gen discusses struggles with mental health as a result of the breakdown of her relationship with Dylan’s Dad and the added stresses of having to move back in with your parents as a new mother. Coping as a single parent of a disabled child and how that manifested in day to day life. We discuss coping strategies and trauma responses around project managing medical care, appointments and therapies, socialising and early years parenting. Gen talks to us about how important self care is for her and her healing journey through yoga and meditation. Guest Biography Genevieve Porritt grew up in North London and had a career in the fashion industry before fulfilling a life purpose of becoming a Mum to Dylan in 2016. Dylan was born with Ullrich Congenital Muscular Dystrophy, a genetic muscle wasting condition which affects him physically. Genevieve and Dylan’s Dad split in 2017 and they moved back to North London from Croydon, they now live in Tufnell Park and Genevieve is Dylan’s main carer, she is a passionate advocate for the importance of self care particularly within our community, she loves open water swimming, yoga and writing poetry and with any spare time she has contributes to the production of the podcast! Episode Transcript Episode 1: Loneliness — Fking Normal Podcast Resources In this episode we discuss several resources which individually helped us as parents of disabled children. There She Goes - originally broadcast by the BBC, There She Goes is a comedy drama that shines a light on the day-to-day life of a family looking after their severely learning disabled girl, Rosie. https://www.bbc.co.uk › programmes It is now being shown on Britbox. Far from the Tree : Parents, Children and the Search for Identity - Andrew Solomon tells the stories of parents who not only learn to deal with their exceptional children but also find profound meaning in doing so. https://andrewsolomon.com/books/far-from-the-tree/ Not What I Expected: Help and Hope for Parents of Atypical Children - Rita Eichenstein PhD, paediatric neuropsychologist presents strategies to help parents of special-needs children navigate the emotional challenges they face. https://www.amazon.co.uk/Not-What-Expected-Atypical-Children Hypotonia UK Facebook Group - a supportive private Facebook group for parents of children with diagnosed Hypotonia usually a symptom of another condition. Based in the UK https://www.facebook.com/groups/350373958646991/ Hosted on Acast. See acast.com/privacy for more information. | |||
| 24 Aug 2022 | Ep 3: Relationships whilst single parenting a disabled child | 01:05:15 | |
In the third episode of the F**king Normal Podcast, we discuss Relationships, whilst parenting a disabled child. Our guest is Vicky- a divorced, single-parent, domestic violence survivor and former disabled-parenting-dater. Vicky’s wonderful son has an array of diagnoses, including Lissencephaly- a rare brain malformation, which causes profound disability in all areas of his life. He’s also blind, has uncontrolled epilepsy, is non-verbal, a wheelchair user and is now tube-fed. We discuss the lows of living with an abusive ex-partner, to the highs of Vicky and her disabled child’s ‘little love bubble’, with some dating stories, relationship thoughts, general ‘tittle tattle’ and hard won wisdom, along the way. Vicky is sharing her story as, sadly, there are undoubtedly some listeners in a similar boat- currently living in toxic and abusive relationships. She hopes that this podcast will give hope that there is a shiny, bright, new chapter for those listeners and their children.
Whilst it’s ultimately a happy ending, with a discussion about the much broader topic of relationships and dating, with a disabled child in the mix- this episode does contain a TRIGGER WARNING, for those who may be affected by domestic violence. If this isn’t for you- please feel free to skip this episode or return at a later date, when you’re in a different head space. Trigger and Content Warnings Domestic abuse, violence, toxic relationships & stalking. Birth Stories Diagnosis Not suitable for little ears Language - lots of swearing, mentions of drinking alcohol and sex. Disclaimers In the interests of privacy, all names, dates and places have been changed. Any similarities in life or death are purely coincidental. Guest Biography Prior to having X, Vicky worked in marketing and company turnarounds, for some well-known brands. That said, Vicky describes X as her finest, yet toughest, boss, ever. He’s taught her more than she could ever imagine. She’s convinced that being a parent of a disabled child requires a similar skill set to company turnarounds, although the working hours are far more outrageous, due to X’s nightly seizures. Vicky also fundraises for a disabled children’s charity and a domestic abuse organisation, which previously helped X and her, when they most needed it. She is ever-grateful to them, and to the NHS, for their incredible work and care of X. She hopes that one day, the government will start to adequately fund them, so that fundraising is no longer required for their essential services. Resources www.nationaldomesticviolencehelpline.org.uk Lissencephaly Foundation Hosted on Acast. See acast.com/privacy for more information. | |||
| 17 Aug 2022 | EP 2: Siblings with Gemma Sherlock and Jess Honeyball | 01:23:42 | |
This is another emotional, incredibly heart warming and, as always, funny as f**ck discussion. Both Gemma and Jess talk openly about their individual IVF journeys, the births, surgery, diagnosis and where they and their children are now. Both Mums talk frankly about the process of moving through the acceptance of their first children’s early days to deciding to have more children. They share wonderful stories about their children’s unique characters and how that plays out between siblings in daily life. Guest Biographies Gemma Sherlock lives in North London with her husband Rohan and two boys, Jasper, aged 7 and Spike, 3. Gemma followed her love of sculptural installations into a Degree in Art History and onto a career in Architecture. Her passion is manipulating existing buildings to create exciting interior spaces. These days, when not running around after the boys you can find Gemma in the Ladies Pond on Hampstead Heath or with a glass in hand nattering somewhere with friends. As a family they spend as much time as they can by the sea at their home in Cornwall. Gemma says ‘I feel so lucky to have found myself amongst an indomitable group of people parenting children with additional needs and disabilities. Together we laugh, cry and muddle-through. We hope our Podcast will let others know they are not alone’. Jess Honeyball is mum to 5 year old twins Freddie & Dylan, and 2 year old Leo. Jess lives in Crouch End, London with her husband Dan and kittens Margot & Jerry. Jess says ‘at least I have one female on my team, even if feline…’ 'I adore storytelling, to my children and for a living. I work as a Producer and Director in non scripted television, and am kind of making it work juggling being a mum and working full time. My way of releasing tension (there’s a lot!) is through bootcamp and barre. My parents were musicians, so playing and seeing my boys respond to music is one of my greatest joys! I look forward to the days that they can play instruments themselves. I feel extremely lucky to be so plugged in to Reach, the charity for children and families with upper limb difference. For Freddie, seeing and playing with other children who look like him, and continue to push and smash the boundaries of what’s expected is magical and vital.' Content Warnings IVF Stories Miscarriage New-born Brain haemorrhage and surgery Drug resistant epilepsy Birth stories Lots of tears Resources Sinead Burke’s Book – Break the Mould https://www.sinead-burke.com/break-the-mould Hydrocephalus www.shinecharity.org.uk/hydrocephalus/hydrocephalus Cerebral Palsy www.nhs.uk/conditions/cerebral-palsy/ Epilepsy ESES Syndrome Reach Poland syndrome Hosted on Acast. See acast.com/privacy for more information. | |||
| 31 Aug 2022 | Ep 4: Extreme juggling with Helen Gamble-Shields | 01:17:37 | |
Helen’s wonderful humour combined with her raw accounts of diagnosis, epilepsy and having to be in that constant state of alert give us a deep insight into their lives. We learn a lot about the extremes of juggling life from finding childcare for a young child with complex needs, getting the appropriate support and funding, to the balancing act after returning to full time work. All three Mums talk about their very different experiences and the choices they have made about going back to paid work and the impact of the unpaid work they do as Mum’s and carers to disabled children. Trigger and Content Warnings Epilepsy Intubation Not suitable for little ears Language - lots of swearing, mentions of drinking alcohol. Guest Biography Helen grew up in the blusterous but beautiful North Coast of Ireland, a place she still calls home. After studying architecture in Edinburgh, Kansas and Paris, Helen moved to London to practice, married her husband Marcus, a rugged Scot, and they had Finn ‘the tornado’ in 2015. Marcus & Helen’s world was rocked when Finn had his first seizure at 4 months old, soon after which he was diagnosed with the genetic condition Dravet Syndrome. The family live in Kentish Town, North London where they frequently ‘buggy-run’ Finn through Hampstead Heath and the Regents Canal. Helen works full time as an Architect (and also once worked in a circus!) She gets great satisfaction from her work, especially knowing she gets to go home to a great BIG Finnster hug. Glossary Convulsive (Tonic-Clonic) seizures - Tonic (lose consciousness) and Clonic (your limbs jerk about or you lose control of your bladder/may bite your tongue or have difficulty breathing) Convulsive Status seizures - is when either a tonic-clonic seizure lasts for 5 minutes or more, or one tonic-clonic seizure follows another without the person regaining consciousness in between. If either of these things happen, the person needs urgent treatment to stop the Status before it causes long-term damage. If Convulsive Status Epilepticus lasts for 30 minutes or longer it can cause permanent brain damage or even death. Epileptic seizures explained | Epilepsy Action Febrile seizures - seizure caused by a fever. CRF - Clinical Research Facility EHCP - Education & Health Care Plan, a legal document that sets out the educational, healthcare and social care needs of a child or young person. GOSH - Great Ormond street Hospital SENCO - member of staff responsible for SEND in a school or nursery Key Worker - assigned person to support child with complex needs and their family. Resource Links Dravet Syndrome - https://www.dravet.org.uk/ IPSEA - https://www.ipsea.org.uk/ Statistics cited at the start of the episode were from reports commissioned by the Working Families Charity: https://workingfamilies.org.uk/news/off-balance-parents-of-disabled-children-and-paid-work/ https://www.workingfamilies.org.uk/wp-content/uploads/2015/11/WF_OffBalance_FINAL1.pdf Hosted on Acast. See acast.com/privacy for more information. | |||
| 08 Sep 2022 | Ep:5 Advocacy with lawyer and SEN mother Caroline MacPake | 01:08:43 | |
Systems of support aren’t always automatically in place for disabled children and their families, and the world simply has not been designed for disabled people. As parents of disabled children, we have to champion, persuade and shout loudly on our kids behalf. Our interview with Caroline discusses the battles with getting a diagnosis for her daughter Dottie, the struggles she had to persuade the right people to listen and the impact this had on her mental health. We talk about the challenging process of getting an Educational Health Care Plan, which most families experience and how this inspired Caroline to use her professional experience to support other parents going through the process. We talk a lot about the journey of acceptance and how even though Dottie is largely nonverbal, she is able to advocate for herself and communicate her wants and needs extremely successfully, often getting exactly what she wants. Trigger and Content Warnings Death in early infancy Misdiagnosis Suicide Struggles with mental health Postnatal Depression Guest Biography Caroline lives in Surrey with her husband Matt and two children – Dottie (5) and Roo (3). Caroline has 20 years’ experience as a lawyer and has spent the last 10 years as Legal Director at Virgin Media O2 (previously with Virgin Media). Caroline is also Trustee of Support SEND Kids, a charity founded by lawyers to aid families in securing educational support for children with special educational needs and disabilities. Caroline’s current mid-life crisis is taking up the drums, and she can be found in her spare time re-living her teenage years rocking out to grunge music. Resource Links Support SEN Kids - charity connecting SEND families, professionals & lawyers https://supportsendkids.org/ SWAN UK: a great resource for families of children with undiagnosed genetic conditions https://www.undiagnosed.org.uk/ Source for statistic cited 95% EHCP appeals succeed: Gov.uk Tribunal Statistics: https://www.gov.uk/government/statistics/tribunal-statistics-quarterly-july-to-september-2020 https://www.gov.uk/government/statistics/tribunal-statistics-quarterly-july-to-september-2021 The Social Model of Disability https://www.scope.org.uk/about-us/social-model-of-disability/ https://en.wikipedia.org/wiki/Social_model_of_disability The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for disabled people to attain their valued functioning’s. The social model of disability diverges from the dominant medical model of disability, which is a functional analysis of the body as a machine to be fixed in order to conform with normative values. While physical, sensory, intellectual, or psychological variations may cause individual functional limitation, these do not necessarily have to lead to disability unless society fails to take account of and include people intentionally with respect to their individual needs. Hosted on Acast. See acast.com/privacy for more information. | |||
| 14 Sep 2022 | Hello from your hosts and what's your F**king Normal? | 00:02:38 | |
We want this podcast to be about connection and building community. So please get in touch with your feedback and ideas. Please tell us what you want to hear from us... Or answer the question we have posed: "What's your F**king Normal?" and share with us any unconventional, unique, beautiful or humorous examples of your daily parenting experience. Where you can reach us: Website - www.fkingnormalpodcast.com Instagram - https://www.instagram.com/fkingnormal_podcast/ Facebook - https://www.facebook.com/fkingnormalpodcast Hosted on Acast. See acast.com/privacy for more information. | |||
| 21 Sep 2022 | Ep 6: Couple relationships with Clare and George | 01:03:21 | |
In Episode 6, we discuss couple relationships, with Clare and George, who are parents to Ada and Ivo, about the impact that having a disabled child has on their relationship. Both the highs and lows. An eye-opening, heart-warming and hilarious account of this fabulous couple’s story. Covering everything from finding out you’re pregnant after the second date, moving in together after three months, to being told your child’s autism diagnosis, whilst pregnant with your second child. Clare talks candidly about her struggles with mental health and George gives thought-provoking insight into the perspective of an SEN Dad. The duo discuss how their relationship has changed and developed over ten years, as well as the understanding and balance they have now found through communication, respect, and an overall loving family unit. Content Warnings Postnatal Depression References to sex, alcohol and drugs Diagnosis Guest Biography Clare and George are parents to 8 year old Ada Bear and 4 year old Ivo Sparrow. Clare, a Scouser with a sort of Kiwi / London accent works in music management and George, a born and bred Londoner works in digital marketing. They met when both living in East London and moved to North London together when pregnant with Ada Bear. Resource Links Paddy McGuinness and his wife Christine have three children who have been diagnosed with autism. In this documentary, they meet other parents, experts and people on the autism spectrum. https://www.bbc.co.uk/iplayer/episode/m00122vl/paddy-and-christine-mcguinness-our-family-and-autism National Autistic Society: Clare's 'mother of all lists' https://motherofalllists.com/2018/08/31/awesome-ada-autism/ Hosted on Acast. See acast.com/privacy for more information. | |||
| 28 Sep 2022 | Ep 7: Acceptance with Rina and Lauren (turning the tables on our hosts!) | 01:08:43 | |
It’s our series 1 finale and time to turn the tables on our hosts, as Lauren and Rina are interviewed by our first ever podcast guest, the wonderful Genevieve. They discuss their experiences of pregnancy, birth and diagnosis with some key moments of acceptance and internal and external influences that helped. From language to being kinder to oneself, we discuss modifying parenting expectations and learning to not give a shit about what others’ think. For our 3 hosts today (and most of the podcast team), acceptance often creeps in, over time. Of course, there are setbacks along the way, with an array of examples and themes discussed. As parents of disabled children, some days are hard and some days are great. Over time, Lauren, Rina and Gen have learned acceptance and the peace that goes with it, which is invaluable in helping get through shittier times and giving you perspective. Content Warnings Diagnoses Stories Possible Death in Early Infancy Misdiagnosis Mental Health Disability & SEN Language Birth Stories Neonatal Intensive Care Unit Stories Resource Links A tracheostomy is an opening created at the front of the neck so a tube can be inserted into the windpipe (trachea) to help you breathe. Pierre Robin Sequence - Health Research Authority Pierre Robin Sequence (PRS) is a condition present from birth with three main features: a small lower jaw (micrognathia), backward-positioned tongue (glossoptosis), and defect of the roof of the mouth (cleft palate). Together, these abnormalities can cause airway obstruction and breathing or feeding difficulties. Chromosome 18q - https://www.chromosome18.org/18q/distal-18q/ https://www.rarechromo.org Noonan Syndrome - https://www.noonansyndrome.org.uk As Gen mentions at the start of the episode, Lauren is running the London Marathon to raise money for Great Ormond Street Hospital - If you can afford to, and want to make a donation, here is her just giving page: Lauren Fenton is fundraising for Great Ormond Street Hospital Children's Charity (justgiving.com) Hosted on Acast. See acast.com/privacy for more information. | |||
| 15 Jun 2023 | Series 2 coming soon... | 00:01:23 | |
We are back! A quick hello from your hosts, Lauren and Rina to let you know that Series 2 will be coming out very soon. And what an interesting array of guests we have in store for you. Starting with performer and writer Bryony Kimmings early next week. We also have an ask for our listeners. Do you have any questions for psychotherapist, Charlotte Fox Webber, who we will be interviewing soon on various themes that come up when we talk to parents of disabled children. We will talk trauma and different emotions and would love to also put some listeners questions directly to Charlotte. Where you can reach us: Website - www.fkingnormalpodcast.com Instagram - https://www.instagram.com/fkingnormal_podcast/ Facebook - https://www.facebook.com/fkingnormalpodcast Hosted on Acast. See acast.com/privacy for more information. | |||
| 19 Jun 2023 | Ep 8: Dualling neurodiversity with Bryony Kimmings | 01:05:07 | |
In the first episode of our new series Lauren and Rina speak to performer and writer Bryony Kimmings. Bryony's son Frank is autistic and two years ago, she was also diagnosed with ADHD. They talk about Bryony’s parenting approach, discovering your own neurodiversity and how to balance a neurodiverse family with sometimes conflicting needs and wants. With her characteristic candour and wicked humour, Bryony describes how much she has learnt about herself and in doing so, how she has become a better parent to Frank as she drives to create their own neurodivergent utopia in their crumbling old country home. Content Warnings Drug taking and alcohol misuse Diagnosis
Guest Biography Bryony Kimmings is a playwright, performer, documentary maker and screen writer from the UK. She is inspired by female stories, social taboos and dismantling power structures. Kimmings’ work is brutally honest, very funny and often a bit geeky and dangerous. Bryony’s stage work includes her plays (as writer and performer): Sex Idiot, 7 Day Drunk, Credible Likeable Superstar Role Model, Fake it til’ you make it and I’m a Phoenix, Bitch. Her TV and film work includes the documentaries The Sex Clinic (C4) and Opera Mums (BBC) and the feature film Last Christmas, which Bryony co wrote with Emma Thompson.
Bryony is working class and loud mouthed; a deep thinker, world fixer, activist and trouble maker all wrapped into one. She likes adapting and reimagining books, creating 3D female characters. She enjoys writing about class, gender and disability. Having toured all over the world with her shows (created about real events in her life) from the National Theatre to the Sydney Opera House, Bryony is now focusing on writing for film and TV. Bryony is also an ADHD mother to an ASC son of 7 years. She lives in the country, trying to homestead and get off grid with varying degrees of success. Nature and food brings Bryony joy, as well as cracking cinema and splashing in water with her son. Resource links Social model of disability | Disability charity Scope UK A Radical Guide for Women with ADHD: Embrace Neurodiversity, Live Boldly, and Break Through Barriers - Sari Solden https://www.sarisolden.com/publications Bryony recommends.... How to raise a happy autistic child, by Jessie Hewitson The secret to… raising a happy autistic child | Parents and parenting | The Guardian ADDitude magazine ADDitude - ADD & ADHD Symptom Tests, Signs, Treatment, Support (additudemag.com) "I follow Instagram accounts of autistic teenagers, as an insight on how to support younger children; Write an access document for friends/family, a 'how-to' for supporting your kid; Be wary of the online reading you do on ASC and check charities actually have ASC people on their staff and board, that it comes from thoughts in the community; I try my best not to watch or support films or tv where disabled people are played by non disabled actors, called 'cripping up'. Its offensive and reductive." Hosted on Acast. See acast.com/privacy for more information. | |||
| 03 Jul 2023 | Ep 9: Undiagnosed, unseen and unheard with Jazz Manley | 01:14:13 | |
In this episode, Rina and Lauren talk with Jazz Manley about her experience of searching for answers and a diagnosis for her son Max. Jazz is candid, being open about her own vulnerability and mental health struggles. She discusses her son’s difficult birth and the challenges she faced when he was young and her concerns surrounding her son were not shared by others. We also discuss how Jazz came to discover that she herself was autistic. Jazz provides a raw, honest, but also funny and heart-warming account of coming through this difficult period in her family's life. This episode contains reference to and details around attempted suicide. It is important to stress that we are not mental health experts, but we have spoken to Jazz outside of the podcast to ensure that she is able to access more support. If you are affected by the content or concerned about anyone you know, please reach out for help. Suicide is preventable, and support is available. We have included some links below. Where to get urgent help for mental health - NHS (www.nhs.uk) Useful contacts - helping someone who feels suicidal - Mind Content Warnings Suicide Traumatic birth stories Diagnosis Guest Biography Jazz is 28 years old and lives in Cheshire with partner, Ryan and their 5 year old son, Max. Max is suspected to have a rare, (as yet) undiagnosed genetic condition which has culminated in autism, global development delay, hypermobility, low muscle tone, microcephaly, dyspraxia and febrile convulsions. Jazz is also autistic, having been diagnosed at the age of 24. Jazz has an undergraduate degree in Law and has worked as a paralegal and a police officer. Due to Max’s growing needs, she is now self-employed as an accounts assistant and recently set up her own payroll company with her best friend, another special needs parent. Jazz’s biggest passions in life (besides her family) are music, books and writing. When Jazz finds an unusual moment for herself you will find her playing guitar, some sport, reading Harry Potter or Game of Thrones books or blogging on her social media account, Autiemum & Max. Instagram - @autiemumandmax Facebook – Autiemum & Max TikTok - @autiemumandmax Resource Links What is autism? - NHS (www.nhs.uk) What Is Global Development Delay? Find Out More | Mencap Hosted on Acast. See acast.com/privacy for more information. | |||
| 17 Jul 2023 | Ep 10: Bridging the Gap - where we are with neurodiversity and where we want to be | 01:03:40 | |
In this episode Lauren and Rina discuss neurodiversity and how we want the world to evolve, with the team behind the play ‘Just be Normal’ - Connor Pearce and sister's Emma and Sophie Jackson. The conversation includes a beautiful monologue performance from the play by Sophie, as well as each guest sharing their own personal experiences and their hopes and wishes for a more accepting and accessible world. “Just Be Normal” explores the topics of Autism and neurodiversity. Sophie wrote the play and stars in it alongside her sister Emma. It is inspired by their own lives and personal stories. Written off as the problem child, the play explores how Emma (the older of the two sisters) seeks to understand her Autism better as she comes to terms with the fact that even those closest to her are poorly equipped to help her on her journey. Meanwhile Sophie secretly struggles with her own unidentified neuro-divergence, which is reflective of Sophie’s quite recent real-life discovery that she’s been living with OCD. Connor’s production company Akimbo is behind the play, and as its director he brings his own lived experience with OCD and neurodiversity. He is passionate about making more inclusive and accessible creative spaces, about making inclusion and diversity at the centre of such productions rather than a tick box after thought. Content Warnings Diagnosis Mental health challenges Vaginismus Guest Biographies Emma is a part-time actor and full-time Mum to 1-year-old Nala. Emma was diagnosed with Autism aged 17, after a difficult period of not being sufficiently catered to at school lead to her dropping out. She has since gone on to star in Just Be Normal, a play inspired by her life, at London's acclaimed Vault Festival.
Sophie is an East London based actor/writer with OCD. Her debut play Just Be Normal came together as a result of her feeling a deficit in real representation of Autistic and neurodivergent women. Sophie starred in Just be Normal alongside her sister Emma at Vault Festival 2023.
Connor is a London-based writer, director and filmmaker impassioned by compelling story-telling and diverse experiences. He was diagnosed with Pure OCD aged twenty-seven, having unknowingly lived with it his whole life. Resources, links: Inside our Autistic minds BBC iPlayer - Inside Our Autistic Minds PLEASE SUPPORT: #SaveVault campaign https://vaultfestival.com/save-vault/ https://www.givey.com/vault Following its triumphant return for the first time in three years having battled to survive through cancellations and postponements, VAULT Festival has been dealt the devastating blow of being told by its landlord, The Vaults, that it must find a new home for future festivals as the venue is instead looking at other more commercial projects. This decision leaves VAULT Festival without a home for 2024 and beyond and poses a significant threat to our survival and to the wider creative industry. Over the past 11 years, VAULT Festival has delivered over 3,000 bold and brilliant shows to over 400,000 audience members. The festival is recognised for being vitally important to the live performance landscape of the UK, has helped launch the careers of thousands of artists from underrepresented backgrounds, who otherwise may not have had access to creative opportunities, and has had a significant positive impact on local businesses. Hosted on Acast. See acast.com/privacy for more information. | |||
| 31 Jul 2023 | Ep 11: Uncertainty with Miriam Elia | 00:51:00 | |
In this episode, Miriam Elia shares her approach to living with the uncertainty that comes with her son’s mitochondrial and neuro-degenerative condition - Leigh Syndrome. With her characteristically dry wit and wicked laugh, Miriam shares her unusual gung-ho and joyful parenting approach as she beautifully describes the profound impact that Sid’s diagnosis has had on her entire family. With a ridiculous number of references to Legoland (no they are not a sponsor of the show!) and frequent bursts of laughter from Miriam, the group discuss how their children have changed them and how to try and live life in the moment and let go of controlling everything. Content Warnings Life limiting conditions Inherited conditions Diagnosis Covid 19 Depression Guest Biography Miriam Elia is a visual artist, comedian and broadcaster hailing from North London. Her diverse work includes short films, animations, illustrated books, prints, drawings and surreal radio writing. She is best known for her art book ‘ We go to the gallery,’ in which she illustrated the classic Peter and Jane ladybird book characters grappling with conceptual art. In 2008, Miriam was nominated for a prestigious Sony Award for her debut BBC Radio 4 sketch show ‘A Series Of Psychotic Episodes’, a surreal comedy series. She frequently collaborates in writing with brother Ezra Elia, and in 2011 published ‘The Diary Of Edward The Hamster’; the story of a philosophical yet deeply troubled Hamster living and contemplating the meaning of life in the solitary confines of his cage. In 2012 Miriam wrote and starred in her own comedy mini series for Channel 4’s Random Acts short film strain ‘Survival’, which tells the story of 5 different animals living in and handling the circumstances of modern society in contrasting ways. From a bunny claiming benefits and selling ‘pure’ carrots to get by to a wealthy hipster fox partying her life away in Shoreditch. March 2023 saw the opening of her first major solo show at the Ujazdowski Centre for Contemporary Art in Warsaw, Poland (24th March – 11th June 2023). The show displays original illustrations and prints from books in the Dung Beetle Learning series ‘We do Lockdown’ and ‘We see the sights’, as well as a series of new Dung Beetle educational wall charts inspired by 1960s classroom displays, depicting ‘The New Normal’ in jolly colourful illustrations. Learning with Miriam – work by Miriam Elia Resource Links https://leighnetwork.org.uk/ ran by the amazing Faye Wylie, who has lived with Leighs syndrome most of her life. Hosted on Acast. See acast.com/privacy for more information. | |||
| 14 Aug 2023 | Ep:12 Telling your own story with Emmett de Monterey | 01:20:28 | |
This week, Rina, Lauren and season one guest Gemma Sherlock, interview trained psychotherapist Emmett de Monterey on his extraordinary life and memoir ‘Go The Way Your Blood Beats.’ Diagnosed with Cerebral Palsy at 18 months old, Emmett was raised by loving and liberal parents and yet he grappled for a long time with accepting his own identity. In his early adolescence, these feelings were compounded by the discovery that he was gay, and by becoming a media sensation for ground-breaking gait surgery in the US. In this heart warming discussion we delve deep into Emmett’s story, into the prejudice he encountered, his route to acceptance and the impact his parents played in helping him to embrace his own identity. Lauren, Rina and Gemma discuss how their own views on disability have changed and Emmett shares why owning and writing his story was so important. Guest Biography Emmett de Monterey grew up in South East London in the early 1980’s. When he was eighteen months old he was diagnosed with cerebral palsy which, up till then, was a condition his young, bohemian parents had never heard of. At aged 12, Emmett was selected to undergo a revolutionary gait surgery in America and was the subject of national media attention. The story in the papers was one of ‘cures’, but while the surgery was a success, it wasn’t the ‘miracle’ of the tabloid headlines. Around the same time, Emmett was also realising he was gay, but thought that to be both disabled and queer was impossible, and that his sexuality would always remain theoretical, a secret. Emmett has recently written a memoir Go the Way Your Blood Beats, a powerful story about finding your place in the world, embracing your identity, and fighting to be seen in a society which would still prefer the disabled to be invisible. Go the Way Your Blood Beats - Amazon @PenguinUKBooks @VikingBooks Content Warnings Diagnosis Traumatic Birth Surgery Eating Disorders Death in Adolescence References the haemophiliacs contaminated blood scandal (1970s-90s UK) Resources Watch Crip Camp: A Disability Revolution | Netflix Official Site Far from the Tree by Andrew Solomon – review | Health, mind and body books | The Guardian End the Awkward | Disability charity Scope UK Visible Hate Campaign | Ending Appearance Related Hate Crime (changingfaces.org.uk) Emmett refers to 22% of the population experiencing disability. See below for relevant statistics. Disability facts and figures | Disability charity Scope UK Disability, England and Wales - Office for National Statistics (ons.gov.uk) Hosted on Acast. See acast.com/privacy for more information. | |||
| 29 Aug 2023 | Ep13- Coping through connecting and community with Melanie Dimmitt | 01:01:14 | |
In this week’s episode, Rina and Lauren discuss the importance of connecting with people who share your experience, building a community (hello the fkingnormal podcast!) and just how valuable this is for providing a safe space to cope through difficulties — together. They interview Australian author and advocate Melanie Dimmitt on her journey to accepting her less typical parenting path, what she has learnt and what she has now done to support others in a similar position. Mel shares her initial feelings on hearing her son’s diagnosis, her path to finding acceptance and how connecting with others in similar situations opened her eyes and prompted her to write her debut book. The group discuss their own routes to acceptance and how building support networks with others was the life line that they all needed. Mel speaks candidly about her own struggles, but also highlights just how relieving it was to find others that she could relate so deeply to. Guest Biography Melanie Dimmitt is an Australian freelance journalist. She is also a mother of two young children, one with profound physical disabilities and the other she describes as ‘medically boring’, but both cute as hell. She released her debut book ‘Special: Antidotes to the Obsessions that Come with a Child’s Disability’ and has written, spoken, podcasted and advocated far and wide for parent’s on similar parenting journeys. She currently heads up news and features at disability support organisation, Hireup, and publishes The Blend – an annual magazine for the tube-feeding community. She also hosts the NDIS Know-how podcast, where she aims to help parents navigate the difficult Australian disability insurance system. Instagram- @the_special_book Content Warnings Diagnosis Life Limiting Disabilities Resources The Blend Magazine -www.theblendmag.com Book- Special - Antidotes to the Obsessions that come with a child’s disability https://www.amazon.co.uk/Special-Antidotes-obsessions-childs-disability The NDIS Know How Podcast - https://hireup.com.au/ndis-know-how/ Hosted on Acast. See acast.com/privacy for more information. | |||
| 11 Sep 2023 | Ep 14: Intersectionality, community & representation with Tinuke Awe | 01:14:34 | |
In this week’s episode, Lauren and Rina interview the incredible social entrepreneur and campaigner, Tinuke Awe. Tinuke recounts her experiences raising her black autistic son and passionately describes the work that she is doing to challenge prejudice, create community and shine a light on her son’s identity. The group discusses the absence of role models and representation, the importance of finding community and how to tackle cultural barriers to acceptance of disabled children. It is an emotional and joyful conversation that veers between anger, tears and lots of laughter. Guest Biography Tinuke Awe is a social entrepreneur, black maternal health campaigner and early years diversity and SEND inclusion champion, who was named British vogue “force for change” in 2021. Tinuke earned that accolade as the cofounder of 5X More, a campaign dedicated to improving the maternal outcomes of black women. She has two children Ezekiel, aged 6 and Eden aged 3. When Ezekiel was born, Tinuke was frustrated by not seeing any black mums at the parent groups she attended, so she started her own black parenting network - Mum’s & Tea, which is now a 12,000 strong community. Since her son’s Autism diagnosis Tinuke has been on a mission to help other black mums navigate the journey of parenting neurodiverse children and has also started a business focused on inclusive educational flash cards because as Tinuke rightly puts it “representation matters for all”. Content Warnings Diagnosis Culturally or religiously driven denial Mental health struggles Resources Articles written by Tinuke recently: https://graziadaily.co.uk/life/parenting/autism-black-children-autistic-send/ Learning with Ez - Diverse educational resources for babies and young children FIVEXMORE - Grassroots organisation committed to changing Black women and birthing people’s maternal health outcomes in the UK. (Black women in the UK are 4 times more likely to die in pregnancy and childbirth, MBRRACE, 2021) Hosted on Acast. See acast.com/privacy for more information. | |||
| 02 Oct 2023 | Ep 15: Conversation with a therapist with Charlotte Fox Weber | 00:57:26 | |
In the final episode of series 2 Lauren and Rina take to the couch for a different kind of conversation with psychotherapist Charlotte Fox Weber. The discussion covers some of the emotional themes that come up again and again with parents of disabled children and Charlotte answers questions submitted by listeners. Charlotte shares her professional and candid insight on topics like: the pressure to cope; the sneaky emotion that is guilt; asking for help; and how to deal with ongoing trauma. It is an illuminating conversation, peppered with vulnerability, wisdom and laughter. Guest Biography Charlotte Fox Weber grew up in Connecticut and Paris. She is a UKCP accredited psychotherapist and a writer, who in 2015 founded the School of Life Psychotherapy. Charlotte now works in private practice with individuals, couples, and groups on all manner of psychological and emotional issues. Her book, 'What We Want' (Hachette) is a fly on the wall account, that takes the reader behind the closed doors of the therapy room and looks at the desires and wants that make us human. It is both powerful and beautiful and a real eye opener on the realities of therapy and its transformative power. She’s currently writing her second book about the hurtful relationships we hold onto. It will be published by Penguin. What We Want is available in hardback, paperback and audio. https://www.waterstones.com/book/what-we-want/charlotte-fox-weber//9781472281470 What do you secretly desire? | Charlotte Fox Weber | TEDxManchester - YouTube Content Warnings Postnatal depression Mental health struggles Diagnosis A small note on our sound… Unfortunately there were some technical issues with this recording and we apologise for the odd blip on the episode. We felt it was important to release the episode still as there are such valuable insights in it. Hopefully it does not spoil your listening. Resources Information on short-breaks for families with disabled children can be found on your local authorities website. More information is provided by the organisation 'Contact' - Short breaks | Contact If any of the issues in this episode affect you or you need more support, please speak to your GP, paediatrician, CAMHS (there are some SEN parent specialists, in certain parts of the country), your local special parent forums (via the local council website), your child's school or close trusted friends and family. You can self refer to the NHS for free psychological talking therapies at NHS talking therapies - NHS (www.nhs.uk). Other organisations for help include: Samaritans (jo@samaritans.org), Mind, Scope.org.uk also have a list of specific diagnosis support groups for parents. Hosted on Acast. See acast.com/privacy for more information. | |||
| 19 Feb 2024 | Series 3 coming soon... and chat with Hibi (now Heba) app co-founder Sam. | 00:11:12 | |
We are back! A quick hello from your hosts, Lauren and Rina to let you know that Series 3 will be coming out very soon. And what an interesting array of guests and topics we have in store for you. We'll be talking wellbeing, working the 9-to-5, to and about dads, therapists and much more. We also have some exciting news. This series of the F**king Normal podcast will be sponsored by Hibi. A few months ago Hibi asked us if we'd be interested in them sponsoring us - we have always been adamant to remain independent and completely in control of our content, we have our own goals and objectives and will not compromise on those but when sponsorship was suggested from a team who very much share the idea of supporting parent carers and their families and working together with them – we agreed. It is an exciting new app, free to use being developed with and for families. On this trailer episode we speak with Hibi co-founder Sam Milliken-Smith on his connection to the SEND community, why he started Hibi and what he hopes it will do for families and carers. Hibi - now called Heba is a free app to support families of children with developmental and health conditions to coordinate care. It was designed by families, for families – and the Hibi team are eager to speak to more caregivers and get their feedback. Please email hello@hibi.health. Sam and the team would love to hear your thoughts. Charity Sam also mentions that he works with: With KEEN, I can! | KEEN London Where you can reach us: Website - www.fkingnormalpodcast.com Instagram - https://www.instagram.com/fkingnormal_podcast/ Facebook - https://www.facebook.com/fkingnormalpodcast Hosted on Acast. See acast.com/privacy for more information. | |||
| 26 Feb 2024 | Ep 16: Wellbeing with Nicole Stephens | 01:06:42 | |
In the first episode of Series 3, Rina and Lauren talk with nutritionist, health professional and SEND mum Nicole Stephens. Nicole candidly shares how, despite her professional knowledge, she neglected to look after her own health and wellbeing in the early days before and after her daughter was diagnosed with a rare genetic condition. This frank and joyful conversation goes from unhealthy coping mechanisms and a discussion on self-blame, to the decision to have a second child and lots of simple wellbeing hacks that Nicole now uses and shares with others. As Nicole cites: “taking care of yourself, is not saying me first; it means me too.” (L.R. Knost, author). Content Warnings: Diagnosis Child loss Amniocentesis Guest Biography: Nicole is mum to 2 girls; Amber 11 and Skye 6. She lives in West London with husband Tyrone. Amber was born with a rare genetic condition called DDX3X syndrome, which affects all areas of her development. She has severe learning disabilities, speech and language and communication difficulties. Despite over 20 years working in the NHS supporting people to make healthier choices, Nicole still found it difficult to prioritise her own health and wellbeing needs whilst caring for a child with disabilities. She co-founded the Well-being FANS (on Instagram) to share well-being tips and self practices she found helpful, and although the account is now inactive, she is still passionate about sharing her knowledge and tips for wellbeing with other parent-carers. Putting self care into practice brings her joy as it means she’s an all rounder nicer person 😉 this might be building micro moments of calm into the day or her new found joy of bike riding. Resources: Tender — Penny Wincer (pennywincerwrites.com) (Book on the imperfect art of caring). The Little Book of Self-care by Suzy Reading | Hachette UK Contact: the charity for families with disabled children - Nicole recommends her local charity Contact Ealing, who like other local organisations do walk and talk sessions for parent carers. They also offered the free yoga nidra sessions that Nicole talks about. Yoga Nidra example - Yoga Nidra Youtube Hosted on Acast. See acast.com/privacy for more information. | |||
| 11 Mar 2024 | Ep 17: Sandwich caring with Rachel Pears | 00:52:21 | |
In this episode, Rina and Lauren talk with New Yorker and lawyer, Rachel Pears about her experience as a 'sandwich carer'. The “sandwich generation” is defined as those who are caring for both elderly parents and their own dependent children. Rachel, an only child living in London, describes the challenges of caring for her 8 year old daughter Amelia who has a rare genetic condition, at the same time as becoming designated carer for both her parents in New York. As Rachel puts it, she felt like she was competing in the caring olympics, but without any time for training! Rachel eventually faced burnout and had to take time out and relook at how she juggled and prioritised everyone’s needs, including her own, differently. It is a heart-warming and beautiful discussion, which covers the pain of dementia and value of being in the moment, to finding your own village and enjoying a cheesy New York pizza! Content Warnings Grief and parental loss Dementia Parkinson's Cancer Diagnosis Guest Biography Rachel lives in London with her husband, Peter, their daughter, Amelia, and their two cats, Rosie and Brother Cat (both affectionately named by Amelia). Amelia has a rare genetic condition. Rachel is the Head of Responsible Business and in-house Employment Counsel at a commercial law firm. She regularly speaks and writes on a variety of DEI topics, drawing on her professional expertise as well as her personal experience as a carer. In 2019, she joined the Insurance Families Network, an Inclusion@Lloyds partner network, as Neurodiversity Champion and co-founded a network for people working in the insurance market who have a caring responsibility for a neurodivergent child. Rachel also sits on the Development Board of SeeAbility (The Royal School for the Blind), a charity supporting people with learning disabilities, autism and sight loss. Rachel was a 'Champion of the Year' Finalist at the Inspirational Women of the Year Awards 2019 and was shortlisted for the 'Unsung Hero' award at the 2021 Make a Different Awards. She was shortlisted for Responsible Business Leader of the Year in the 2023 Women and Diversity in Law Awards and is currently shortlisted for DEI in a Specialist Role in the 2024 Women and Diversity in Law Awards and Outstanding in DE&I at the Women, Influence and Power in Law Awards 2024. When she's not working in her paid or unpaid roles, Rachel enjoys hiking, reading, binging questionable tv series' and building Lego. Resources https://www.parkinsons.org.uk/ https://www.ambitiousaboutautism.org.uk/ Hosted on Acast. See acast.com/privacy for more information. | |||
| 25 Mar 2024 | Ep:18 Working 9 to 5 with Leisa Millar | 01:09:20 | |
In this episode, Lauren and Rina talk with journalist and fellow podcaster Leisa Millar on the world of work as parent carers. Leisa is host of the podcast: ‘SEN Mums’ Career Club’, where she speaks with women in fascinating and diverse roles who are also parent carers. In each case, she finds out how they make balancing their paid work and carer role, work for them. In this thoughtful discussion, Leisa shares her own story of juggling parenting, caring and her day job, as well as some of the insights she has learnt from her podcast guests. They discuss identity, the practicalities around working while also being a parent carer and for some the idea of work as a respite. Leisa also describes what changes she would like to see in the workplace to support more parent carers. Content Warnings Diagnosis Down Syndrome screening Guest Biography Leisa Millar is a journalist who works as head of audience development at the DC Thomson media organisation. She has three children: Caspar, who’s 1; Felicity, who’s 4; and her eldest, 7-year-old Beatrix, who has a rare genetic disorder called Kabuki syndrome. Beatrix has a learning disability, hip dysplasia, hypermobility, unclear speech, heart, eye and hearing issues and various gross- and fine-motor delays. Inspired by her own challenges managing the juggle of career and kids, Leisa started a podcast called The SEN Mums' Career Club - a place for women raising children with complex or additional needs to find support and inspiration from fellow mums who are also endlessly juggling hospital appointments, DLA forms and EHCP reviews alongside climbing the career ladder. Leisa lives in Teesside, loves a theatre trip and enjoys spending what little spare time (and money) she has left on Vinted! Resource Links The SEN Mums’ Career Club | DC Thomson (podbean.com) Hosted on Acast. See acast.com/privacy for more information. | |||
| 08 Apr 2024 | Ep 19: Uprooting and rerouting with Camilla Cook | 01:00:02 | |
In this episode, Lauren and Rina talk with teacher and mum Camilla Cook on how she left her home, job and life behind her during the COVID pandemic at the same time as coming to terms with the fact that her youngest daughter Sylva, had a yet undiagnosed genetic condition. Camilla shares her story of leaving Tanzania (where she lived and taught) pregnant with Sylva, with her husband and 3 year old in tow not realising they would not be going back. Camilla had a lot of help and support from her family and loved ones and acknowledges the privileged position she was and is in relative to others, but still it was very difficult contending with so many changes at once at the same time as processing her daughter’s condition. Camilla likens it to an Eddie Izzard joke about ‘Etch A Sketch’, where it was as if everything was shook away and cancelled and they had to start again. Now living in Brighton, they still don’t have a diagnosis for Sylva, but they have drawn a new picture and are very much enjoying how it looks. Content Warnings COVID 19 Pandemic Seeking diagnosis Amniocentesis Guest Biography Camilla Cook is an English teacher from Brighton. Her husband Will Kerr is a copywriter (and secretly brilliant poet), and they have two children: Freddy who is six, and Sylva who is two. As a family they spend lots of time on the beach, exploring the woods, and dancing to Kate Bush. Camilla has taught all over the world, starting in North London, then El Salvador, before returning to Hackney to help set up a charity called the Literacy Pirates. She convinced Will to move to Thailand with her, and they had Freddy in Chiang Mai. Then they all moved to Tanzania, before coming back to settle in good old Sussex by the sea. Sylva either has an undiagnosed genetic condition, or is a magical pixie sent to us humans by the forest folk, and is the subject of our conversation in this episode. Resources
SWAN UK - ‘syndromes without a name’ supporting those without a diagnosis Camilla’s blog can be found here. Hosted on Acast. See acast.com/privacy for more information. | |||
| 22 Apr 2024 | Ep: 20 'I am because we are' with dance movement psychotherapist Juliet Diener | 00:57:03 | |
In this episode, Lauren and Rina talk with dance movement psychotherapist and mother Juliet Diener on building an inclusive community and working with disabled children and their families. Juliet shares her passion for what she does with her charity organisation icandance and how her personal family story has influenced the empathy and understanding she brings to the disabled young people she works with and their parent carer families. She is a mother to 2 children with Cystic fibrosis. Juliet’s words are thoughtful, astute and filled to the brim with love. It is a beautiful conversation about what it means to be human and connect with each other, to quote the African Ubuntu philosophy that Juliet refers to - "I am because we are". Content Warnings Diagnosis Cystic fibrosis Guest Biography Originally from South Africa, Juliet Diener is a mother, an academic and a dance movement psychotherapist. She is the founder and CEO of the charity icandance. With a background in special educational needs, teaching and dance, Juliet founded icandance in 2006, with a desire to build an inclusive community where dance was accessible for all. Subsequently influenced by her own personal journey, it is a joyful and inclusive place of community. Juliet is also currently completing a doctorate focused on the icandance approach. Useful resources CF trust: Life-saving drugs FAQs (cysticfibrosis.org.uk) icandance is a charity that relies on donations and funding to be able to do what it does. Like many charities, it is struggling with a reduction in available funding at the moment. If you can and would like to make a donation, please do: Some links to Juliet’s writings:
‘Finding my way home: An embodied journey to building an inclusive dance community.’ Published in February 2023 in ‘Creative Bodies in Therapy, Performance and Community. Research and practice that bring us home’ by Dr Caroline Frizell and Dr Marina Rova, published by Routledge. Creative Bodies in Therapy, Performance and Community: Research and Practice that Brings us Home: Amazon.co.uk: Frizell, Caroline, Rova, Marina: 9781032119809: Books
Two recent articles (part 1 &2) about employing disabled co-facilitators at icandance:
Juliet is a regular research contributor to Community Living Magazine: Juliet Diener – Community Living (communitylivingmagazine.com) Hosted on Acast. See acast.com/privacy for more information. | |||
| 06 May 2024 | Ep: 21 Learning and unlearning with Suzanne McManus | 01:10:45 | |
In this episode, Lauren and Rina talk with mother, advocate and BBC commissioning editor Suzanne McManus on her neurodivergent family. Suzanne candidly shares her own parenting story with great warmth, insight and a fair few laughs along the way. Her eldest son has a PDA profile of autism and this has required their family to embrace the concept of low demand parenting. While the benefits to her children are clear to see, it’s an approach that is not always easy to take, often requiring a lot of new learning and unlearning on the part of the parents. Outside of her home life, Suzanne is on a mission to see greater representation and inclusion. She talks about the recent ground-breaking BBC show that she commissioned - ‘The Assembly’, where a group of neurodivergent young people interview Michael Sheen. Suzanne also shares her plan to support carers with more flexible working opportunities in her industry. Content Warnings Diagnosis Miscarriage/baby loss Guest Biography Suzanne McManus is mother to two boys and is the sole female in her (as she puts it) neuro-spicy household. Her husband was diagnosed with ADHD a few years ago and both her kids are autistic and have ADHD. Her eldest has the PDA profile of autism. Suzanne is a BBC commissioning editor for entertainment. Her impressive portfolio includes overseeing shows like BAFTAs, Mock the Week, The Graham Norton Show, Would I Lie to You and Live at the Apollo. She is also on a mission to encourage employers (starting with the BBC) to ring fence more part time roles for people who’ve had to leave full-time work to care for family members with disabilities. Resource Links Hosted on Acast. See acast.com/privacy for more information. | |||
| 20 May 2024 | Ep 22: Transition to adulthood with Julia Marsan | 00:54:09 | |
In this episode, Rina and Lauren talk with Julia Marsan about her experience in supporting her disabled daughter Nicole in the transition to adulthood outside of her parents care and into supported living. In this thoughtful discussion, Julia shares her story of parenting two children with different additional needs, as well as some of the valuable lessons she has learnt along the way. They discuss Nicole's pathway through education and, later into supported living where she now lives "the best life, in her own way". Julia shares with us how she fought to find the right solutions to both enable Nicole to live as independently as possible outside of the care of her parents, as well as the way to maintain balance in her and her husband's own lives. This episode also contains some great tips from Julia in terms of practical issues such as court appointed deputyships and ensuring for the right financial and health and welfare decisions are made with and for Nicole. Content Warnings Strong Language warning Traumatic Birth Child loss Guest Biography Julia Marsan is a mother, successfully had a long career as HR Director in many different sectors and although now retired, she is currently a trustee for a charity based in Oxfordshire that provides supported living, day opportunities and work placements for people with disabilities and autism. Julia was inaugurated into the special needs space after her daughter Nicole was born in 1995 and diagnosed with Mowat-Wilson Syndrome. Her son Tom came three years later and was diagnosed with cerebral palsy. Julia lives in Oxfordshire with her husband David, and along with charity work and visits and activities with their children, they both enjoy travelling the world in their retirement! David is currently undertaking a sailing adventure in the Pacific, raising money for Style Acre, the charity that supports Nicole. Resource Links Style Acre: www.styleacre.org.uk Round the World Bear (David's Pacific Adventure): www.roundtheworldbear.com Mowat-Wilson Syndrome Foundation: www.mowat-Wilson.org Newman Trust: www.newmantrust.org Useful List of Colleges for disabled 16+: https://natspec.org.uk/ Hosted on Acast. See acast.com/privacy for more information. | |||
| 03 Jun 2024 | Ep 23: Conversation with a dad, with Kevin Troy. | 00:59:40 | |
On this week’s episode, Rina and Lauren sat down with dad Kevin Troy to talk about his journey to fatherhood. Having previously worked in fast paced, male dominated environments, centred around the ‘work hard, play hard’ philosophy, Kevin’s world has slowed down significantly since his daughter Coraline was born in 2018. Diagnosed with Downs Syndrome, Coraline not only made Kevin a dad, but inspired him to create an organic skincare brand named after her.
The conversation is funny, light hearted but deeply personal. Kevin openly shares his struggles with his own wellbeing and how eating well, exercise and mediation have allowed him to become the best version of himself, for both Coraline and his wife Liz. Content Warnings: Strong Language Diagnosis Mental Health
Guest Biography: Kevin Troy lives in Devon with his wife Liz and daughter Coraline, who is almost 7 years old. Coraline has Downs Syndrome and potentially Autism too. Passionate about leading a healthy lifestyle, Kevin has always been interested in food. During his late teens and early adulthood he worked as a chef in London, France and Australia. After the birth of his daughter in 2018, Kevin noticed that her skin began to react to baby shampoos the family were using. Upset by the ingredients he read on the packaging, Kevin used his chef know-how and vast knowledge in food combinations to create an organic, natural and vegan skincare brand, launching Coraline Skincare in 2020.
Resources: https://www.downs-syndrome.org.uk The Untethered Soul: A journey beyond yourself, Michael A Singer The Surrender Experiment, Michael A Singer Tapping with Brad Yates on Youtube Hosted on Acast. See acast.com/privacy for more information. | |||
| 01 Jul 2024 | F**KING NORMAL LIVE April '24 | 01:18:48 | |
Our first live show was recorded at the Parcel Yard, London Kings Cross in April 2024. The event was jointly hosted by Hibi and the F**King Normal Podcast. We were absolutely overwhelmed by the love, warmth and connection in the room. Thank you so much to everyone who was able to join us. For those who weren’t, you can share in the experience with this episode and we hope to have news of more events for the community to join very soon. During this live event, the incredible Polly Hazelwood stepped in at the last minute to host a Q&A with Lauren and Rina. Audience members also had their chance to both answer and ask questions of the panel. The conversation was honest, emotional, supportive and often f**king joyous. Content Warnings Strong Language Diagnosis Life limiting conditions A huge thank you to…… Sam and all at Hibi Health for partnering with us and sponsoring this live event. The incredible Melanie Dimmitt, who coordinated the live event with us. Polly Hazlewood (@polldoll) for stepping in at the last minute to compere the Q&A on the night. Photographer Matt Macpake Videographer Elamai (@elamaiscamera) The venue and the wonderful staff at The Parcel Yard in Kings Cross. Genevieve Porritt & Victoria Wason, for putting the event together. Clare Wright, Helen Gamble Shields, Sharon King-Chai and Gemma Sherlock for their support and efforts on the night. Thank you to the following organisations for their generous donations to our goodie bags: London Heathrow assistance and accessibility team. Resources (and those who donated books for the resource table & prizes on the night): Find your local Parent Carer Forum at Contact.org Penny Wincer: ‘Tender: the imperfect art of caring’ Jess Moxham: The Cracks that Let the Light In Melanie Dimmitt - ‘Special’ Hosted on Acast. See acast.com/privacy for more information. | |||
| 18 Nov 2024 | Ep 25: Life and work as an occupational therapist with Marina Dias | 00:55:31 | |
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: Fertility Strong language Diagnosis Difficult labour and premature birth Mental health struggles and depression Guest 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. Hosted on Acast. See acast.com/privacy for more information. | |||
| 02 Dec 2024 | Ep 26: From early days survival to changing the world with Sara Johnson | 01:01:19 | |
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 Warnings Strong Language warning Difficult pregnancy (Amnio and CVS procedures) Traumatic Birth Guest Biography Sara 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 Resources Jack 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 Disorders Hosted on Acast. See acast.com/privacy for more information. | |||
| 16 Dec 2024 | Ep 27: SEN Finances with SEND Protect Founder Cara Roughani | 01:04:15 | |
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 Warnings Conversations about death Guest Biography Cara 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 Resources www.sendprotect.co.uk www.citizensadvice.org.uk nasen.org.uk www.gov.uk Hosted on Acast. See acast.com/privacy for more information. | |||
| 06 Jan 2025 | Ep 28: "Love makes the world go round" with David Thacker and Margot Leicester | 01:13:05 | |
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 Warnings Diagnosis Guest Biographies Margot 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: Hosted on Acast. See acast.com/privacy for more information. | |||
| 20 Jan 2025 | Ep 29: Helping my child find her voice with Cat Troiano | 01:07:55 | |
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 Warnings Very strong Language warning Diagnosis Guest Biography Cat 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 resources
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| 03 Feb 2025 | Ep 30: From trauma to renewed purpose with Brandi Amiss-Towler | 00:54:57 | |
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 Warnings Strong Language warning Prenatal diagnosis Infant death Birth stories Guest Biography Brandi 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 resources Martha'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 Children https://councilfordisabledchildren.org.uk/resources/all-resources Caudwell Children https://www.caudwellchildren.com/changing-lives/how-we-can-help/ Provides services, funding, and training for families and children Mencap Provides advice on benefits, housing, health and education. I've always found them to be very knowledgeable. Disability Rights UK Produces 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-support Provides services, advice and support for disabled children and their families Hosted on Acast. See acast.com/privacy for more information. | |||
| 17 Mar 2025 | Lauren and Rina wrap up Series 4 | 00:09:44 | |
Just a quick chat with your hosts Lauren and Rina on some of their favourite bits from series 4 and a reminder to get in touch with the F**king Normal team if you have any ideas for future episode topics for the next series. Thank you for listening and supporting the podcast . We promise we will be back with more episodes very soon! Find us on Instagram: @fkingnormal_podcast or email us at fkingnormalpodcast@gmail.com Hosted on Acast. See acast.com/privacy for more information. | |||