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F**king Normal

The cheers, tears and Friday night beers of parenting disabled children


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  • 20. Ep: 20 'I am because we are' with dance movement psychotherapist Juliet Diener

    57:03
    In this episode, Lauren and Rina talk with dance movement psychotherapist and mother Juliet Diener on building an inclusive community and working with disabled children and their families. Juliet shares her passion for what she does with her charity organisation icandance and how her personal family story has influenced the empathy and understanding she brings to the disabled young people she works with and their parent carer families. She is a mother to 2 children with Cystic fibrosis. Juliet’s words are thoughtful, astute and filled to the brim with love. It is a beautiful conversation about what it means to be human and connect with each other, to quote the African Ubuntu philosophy that Juliet refers to - "I am because we are".Content WarningsDiagnosisCystic fibrosisGuest BiographyOriginally 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 resourcesCF trust: Life-saving drugs FAQs (cysticfibrosis.org.uk)icandanceicandance 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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  • 19. Ep 19: Uprooting and rerouting with Camilla Cook

    01:00:02
    In this episode, Lauren and Rina talk with teacher and mum Camilla Cook on how she left her home, job and life behind her during the COVID pandemic at the same time as coming to terms with the fact that her youngest daughter Sylva, had a yet undiagnosed genetic condition. Camilla shares her story of leaving Tanzania (where she lived and taught) pregnant with Sylva, with her husband and 3 year old in tow not realising they would not be going back. Camilla had a lot of help and support from her family and loved ones and acknowledges the privileged position she was and is in relative to others, but still it was very difficult contending with so many changes at once at the same time as processing her daughter’s condition. Camilla likens it to an Eddie Izzard joke about ‘Etch A Sketch’, where it was as if everything was shook away and cancelled and they had to start again. Now living in Brighton, they still don’t have a diagnosis for Sylva, but they have drawn a new picture and are very much enjoying how it looks.  Content WarningsCOVID 19 PandemicSeeking diagnosisAmniocentesis Guest BiographyCamilla 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 diagnosisCamilla’s blog can be found here.
  • 18. Ep:18 Working 9 to 5 with Leisa Millar

    01:09:20
    In this episode, Lauren and Rina talk with journalist and fellow podcaster Leisa Millar on the world of work as parent carers. Leisa is host of the podcast: ‘SEN Mums’ Career Club’, where she speaks with women in fascinating and diverse roles who are also parent carers. In each case, she finds out how they make balancing their paid work and carer role, work for them. In this thoughtful discussion, Leisa shares her own story of juggling parenting, caring and her day job, as well as some of the insights she has learnt from her podcast guests. They discuss identity, the practicalities around working while also being a parent carer and for some the idea of work as a respite. Leisa also describes what changes she would like to see in the workplace to support more parent carers.  Content WarningsDiagnosisDown Syndrome screeningGuest BiographyLeisa 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) 
  • 17. Ep 17: Sandwich caring with Rachel Pears

    52:21
    In this episode, Rina and Lauren talk with New Yorker and lawyer, Rachel Pears about her experience as a 'sandwich carer'. The “sandwich generation” is defined as those who are caring for both elderly parents and their own dependent children. Rachel, an only child living in London, describes the challenges of caring for her 8 year old daughter Amelia who has a rare genetic condition, at the same time as becoming designated carer for both her parents in New York. As Rachel puts it, she felt like she was competing in the caring olympics, but without any time for training! Rachel eventually faced burnout and had to take time out and relook at how she juggled and prioritised everyone’s needs, including her own, differently. It is a heart-warming and beautiful discussion, which covers the pain of dementia and value of being in the moment, to finding your own village and enjoying a cheesy New York pizza!Content WarningsGrief and parental lossDementiaParkinson'sCancerDiagnosisGuest BiographyRachel 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. Resourceshttps://www.parkinsons.org.uk/https://www.michaeljfox.org/https://www.dementiauk.org/https://www.carersuk.org/ https://rarechromo.org/https://www.ambitiousaboutautism.org.uk/
  • 16. Ep 16: Wellbeing with Nicole Stephens

    01:06:42
    In the first episode of Series 3, Rina and Lauren talk with nutritionist, health professional and SEND mum Nicole Stephens. Nicole candidly shares how, despite her professional knowledge, she neglected to look after her own health and wellbeing in the early days before and after her daughter was diagnosed with a rare genetic condition. This frank and joyful conversation goes from unhealthy coping mechanisms and a discussion on self-blame, to the decision to have a second child and lots of simple wellbeing hacks that Nicole now uses and shares with others. As Nicole cites: “taking care of yourself, is not saying me first; it means me too.” (L.R. Knost, author). Content Warnings:DiagnosisChild lossAmniocentesisGuest 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 UKContact: 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
  • Series 3 coming soon... and chat with Hibi app co-founder Sam.

    11:12
    We are back! A quick hello from your hosts, Lauren and Rina to let you know that Series 3 will be coming out very soon. And what an interesting array of guests and topics we have in store for you. We'll be talking wellbeing, working the 9-to-5, to and about dads, therapists and much more.We also have some exciting news. This series of the F**king Normal podcast will be sponsored by Hibi. A few months ago Hibi asked us if we'd be interested in them sponsoring us - we have always been adamant to remain independent and completely in control of our content, we have our own goals and objectives and will not compromise on those but when sponsorship was suggested from a team who very much share the idea of supporting parent carers and their families and working together with them – we agreed. It is an exciting new app, free to use being developed with and for families. On this trailer episode we speak with Hibi co-founder Sam Milliken-Smith on his connection to the SEND community, why he started Hibi and what he hopes it will do for families and carers.Hibi is a free app to support families of children with developmental and health conditions to coordinate care. It was designed by families, for families – and the Hibi team are eager to speak to more caregivers and get their feedback. Please email hello@hibi.health. Sam and the team would love to hear your thoughts.Hibi | Manage your child's careCharity Sam also mentions that he works with: With KEEN, I can! | KEEN LondonWhere you can reach us:fkingnormalpodcast@gmail.comWebsite - www.fkingnormalpodcast.com Instagram - https://www.instagram.com/fkingnormal_podcast/ Facebook - https://www.facebook.com/fkingnormalpodcast
  • 15. Ep 15: Conversation with a therapist with Charlotte Fox Weber

    57:26
    In the final episode of series 2 Lauren and Rina take to the couch for a different kind of conversation with psychotherapist Charlotte Fox Weber. The discussion covers some of the emotional themes that come up again and again with parents of disabled children and Charlotte answers questions submitted by listeners. Charlotte shares her professional and candid insight on topics like: the pressure to cope; the sneaky emotion that is guilt; asking for help; and how to deal with ongoing trauma. It is an illuminating conversation, peppered with vulnerability, wisdom and laughter.   Guest BiographyCharlotte 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//9781472281470Charlotte Fox WeberWhat do you secretly desire? | Charlotte Fox Weber | TEDxManchester - YouTubeContent WarningsPostnatal depressionMental 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.ResourcesInformation 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 | ContactIf any of the issues in this episode affect you or you need more support, please speak to your GP, paediatrician, CAMHS (there are some SEN parent specialists, in certain parts of the country), your local special parent forums (via the local council website), your child's school or close trusted friends and family. You can self refer to the NHS for free psychological talking therapies at NHS talking therapies - NHS (www.nhs.uk).Other organisations for help include: Samaritans (jo@samaritans.org), Mind, Scope.org.uk also have a list of specific diagnosis support groups for parents.