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 [email protected]

Hosted on Acast. See acast.com/privacy for more information.

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

Teratoma - Wikipedia

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 

https://www.mencap.org.uk/

Provides advice on benefits, housing, health and education. I've always found them to be very knowledgeable. 

Disability Rights UK

www.disabilityrightsuk.org

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.

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

• fivepminus.org - 5p- Society. This is the American group (the biggest one) relating to the syndrome
• Documentary by parent to child with 5p- A sweet mini-doc a filmmaker (also parent to CdCS child) made for a benefit concert in 2012. 
• Raising a rare girl book - Heather Lanier's book 'Raising a Rare Girl' that Cat mentioned. 
• Therarelife.ep-166-nonspeaking-child-longing-to-access-their-inner-world-give-them-medical-autonomy-w-suzi-boubion - Podcast episode referenced by Cat in which Suzy Boubion talks about her non-speaking child.

Hosted on Acast. See acast.com/privacy for more information.

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:

Home - icandance

Haringey Shed

Hosted on Acast. See acast.com/privacy for more information.

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

[email protected]

[email protected]

www.citizensadvice.org.uk

nasen.org.uk

www.gov.uk

Hosted on Acast. See acast.com/privacy for more information.

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

Casarotto Access Team

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

The A Word - BBC iPlayer

Hosted on Acast. See acast.com/privacy for more information.

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.

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: 

MahaDevi Yoga Centre  

Coraline Skincare 

London Heathrow assistance and accessibility team.

Sharon King-Chai  

Beauty Boutique Hampstead  

Sherlock London    

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’ 

Sharon King-Chai  

Hosted on Acast. See acast.com/privacy for more information.

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 

https://smallsteps.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.

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.