Afleveringen

  • 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 


    https://www.kabukiuk.org.uk/


    The SEN Mums’ Career Club | DC Thomson (podbean.com) 


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  • 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.michaeljfox.org/

    https://www.dementiauk.org/

    https://www.carersuk.org/ 

    https://rarechromo.org/

    https://www.ambitiousaboutautism.org.uk/


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  • 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


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  • 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 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 [email protected]. Sam and the team would love to hear your thoughts.


    Hibi | Manage your child's care


    Charity Sam also mentions that he works with: With KEEN, I can! | KEEN London


    Where you can reach us:

    [email protected]

    Website - www.fkingnormalpodcast.com 

    Instagram - https://www.instagram.com/fkingnormal_podcast/ 

    Facebook - https://www.facebook.com/fkingnormalpodcast


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  • 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


    Charlotte Fox Weber


    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 ([email protected]), Mind, Scope.org.uk also have a list of specific diagnosis support groups for parents.


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  • 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-and-early-intervention-what-it-means-and-how-to-access-help-and-information/

    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)


    www.mumsandtea.com 


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  • 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

    www.melaniedimmitt.com.au


    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/


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  • 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)


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  • 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.

    www.thelilyfoundation.org.uk

    https://www.curemito.org/


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  • 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.


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  • 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. 


    Contact Us | Samaritans 

    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)

    Microcephaly (who.int)

    What Is Global Development Delay? Find Out More | Mencap


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  • 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. 


    www.Bryonykimmings.com


    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."


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  • 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:

    [email protected]

    Website - www.fkingnormalpodcast.com 

    Instagram - https://www.instagram.com/fkingnormal_podcast/ 

    Facebook - https://www.facebook.com/fkingnormalpodcast


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  • 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 

    NHS Tracheostomy

    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)


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  • 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: 

    https://www.autism.org.uk/

    Clare's 'mother of all lists' 

    https://motherofalllists.com/2018/08/31/awesome-ada-autism/



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  • 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:

    [email protected]

    Website - www.fkingnormalpodcast.com 

    Instagram - https://www.instagram.com/fkingnormal_podcast/ 

    Facebook - https://www.facebook.com/fkingnormalpodcast


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  • 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.


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  • 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


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  • 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 Xander, Vicky worked in marketing and company turnarounds, for some well-known brands. Her favourite job was managing Ben & Jerry’s, as she turned the brand Fairtrade, worked with an ace team and ate ice cream all day. Amongst her not-so-favourite jobs, she counts the Japanese launch of the Dove Firming campaign, although the perks of free moisturiser and flying in helicopters seem somewhat more glamorous than today’s consultancy and disabled child- parenting reality.

    That said, Vicky describes Xander 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 Xander’s nightly seizures.

    Vicky also fundraises for a disabled children’s charity and a domestic abuse organisation, which previously helped Xander and her, when they most needed it. She is ever-grateful to them, and to the NHS, for their incredible work and care of Xander. 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

    https://www.womensaid.org.uk

    www.nationaldomesticviolencehelpline.org.uk

    www.refuge.org.uk

    www.stalkinghelpline.org


    Lissencephaly Foundation

    www.lissfoundation.org


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  • 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

    www.youngepilepsy.org.uk


    ESES Syndrome

    https://www.epilepsy.org.uk/info/syndromes/electrical-status-epilepticus-during-slow-wave-sleep-esess


    Reach 

    https://reach.org.uk/


    Poland syndrome 

    https://pip-uk.org/


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