F**king Normal The Fking Normal Team

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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