F**king Normal

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  

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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 

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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/

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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

 PDA Society UK 

The Assembly on BBC iplayer

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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

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:

Make a Donation - icandance.

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:

National Inclusion Week 2023 - Juliet Diener on creating an inclusive workplace - Imperial Society of Teachers of Dancing (istd.org)

Juliet Diener: How to foster inclusivity in the workplace - Imperial Society of Teachers of Dancing (istd.org) 

Juliet is a regular research contributor to Community Living Magazine:

Juliet Diener – Community Living (communitylivingmagazine.com)

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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.

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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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