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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
www.citizensadvice.org.uk
nasen.org.uk
www.gov.uk
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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
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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.
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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 - now called Heba 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.
https://www.heba.care
Charity Sam also mentions that he works with: With KEEN, I can! | KEEN London
Where you can reach us:
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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