F**king Normal

Helen’s wonderful humour combined with her raw accounts of diagnosis, epilepsy and having to be in that constant state of alert give us a deep insight into their lives. We learn a lot about the extremes of juggling life from finding childcare for a young child with complex needs, getting the appropriate support and funding, to the balancing act after returning to full time work. All three Mums talk about their very different experiences and the choices they have made about going back to paid work and the impact of the unpaid work they do as Mum’s and carers to disabled children. 

Trigger and Content Warnings

Epilepsy

Intubation 

Not suitable for little ears

Language - lots of swearing, mentions of drinking alcohol.

Guest Biography

Helen grew up in the blusterous but beautiful North Coast of Ireland, a place she still calls home. After studying architecture in Edinburgh, Kansas and Paris, Helen moved to London to practice, married her husband Marcus, a rugged Scot, and they had Finn ‘the tornado’ in 2015. Marcus & Helen’s world was rocked when Finn had his first seizure at 4 months old, soon after which he was diagnosed with the genetic condition Dravet Syndrome. The family live in Kentish Town, North London where they frequently ‘buggy-run’ Finn through Hampstead Heath and the Regents Canal. Helen works full time as an Architect (and also once worked in a circus!) She gets great satisfaction from her work, especially knowing she gets to go home to a great BIG Finnster hug.

Glossary

Convulsive (Tonic-Clonic) seizures - Tonic (lose consciousness) and Clonic (your limbs jerk about or you lose control of your bladder/may bite your tongue or have difficulty breathing)

Convulsive Status seizures  - is when either a tonic-clonic seizure lasts for 5 minutes or more, or one tonic-clonic seizure follows another without the person regaining consciousness in between. If either of these things happen, the person needs urgent treatment to stop the Status before it causes long-term damage. If Convulsive Status Epilepticus lasts for 30 minutes or longer it can cause permanent brain damage or even death. Epileptic seizures explained | Epilepsy Action

Febrile seizures - seizure caused by a fever.

CRF - Clinical Research Facility

EHCP - Education & Health Care Plan, a legal document that sets out the educational, healthcare and social care needs of a child or young person.

GOSH - Great Ormond street Hospital

SENCO - member of staff responsible for SEND in a school or nursery

Key Worker - assigned person to support child with complex needs and their family. 

Resource Links 

Dravet Syndrome - https://www.dravet.org.uk/

IPSEA - https://www.ipsea.org.uk/ 

Statistics cited at the start of the episode were from reports commissioned by the Working Families Charity:

https://workingfamilies.org.uk/news/off-balance-parents-of-disabled-children-and-paid-work/

https://www.workingfamilies.org.uk/wp-content/uploads/2015/11/WF_OffBalance_FINAL1.pdf

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In the third episode of the F**king Normal Podcast, we discuss Relationships, whilst parenting a disabled child.

Our guest is Vicky- a divorced, single-parent, domestic violence survivor and former disabled-parenting-dater.

Vicky’s wonderful son has an array of diagnoses, including Lissencephaly- a rare brain malformation, which causes profound disability in all areas of his life. He’s also blind, has uncontrolled epilepsy, is non-verbal, a wheelchair user and is now tube-fed.

We discuss the lows of living with an abusive ex-partner, to the highs of Vicky and her disabled child’s ‘little love bubble’, with some dating stories, relationship thoughts, general ‘tittle tattle’ and hard won wisdom, along the way.

Vicky is sharing her story as, sadly, there are undoubtedly some listeners in a similar boat- currently living in toxic and abusive relationships. She hopes that this podcast will give hope that there is a shiny, bright, new chapter for those listeners and their children.

Whilst it’s ultimately a happy ending, with a discussion about the much broader topic of relationships and dating, with a disabled child in the mix- this episode does contain a TRIGGER WARNING, for those who may be affected by domestic violence. If this isn’t for you- please feel free to skip this episode or return at a later date, when you’re in a different head space.

Trigger and Content Warnings

Domestic abuse, violence, toxic relationships & stalking.

Birth Stories

Diagnosis

Not suitable for little ears

Language - lots of swearing, mentions of drinking alcohol and sex.

Disclaimers

In the interests of privacy, all names, dates and places have been changed. Any similarities in life or death are purely coincidental.

Guest Biography

Prior to having X, Vicky worked in marketing and company turnarounds, for some well-known brands. That said, Vicky describes X as her finest, yet toughest, boss, ever. He’s taught her more than she could ever imagine. She’s convinced that being a parent of a disabled child requires a similar skill set to company turnarounds, although the working hours are far more outrageous, due to X’s nightly seizures.

Vicky also fundraises for a disabled children’s charity and a domestic abuse organisation, which previously helped X and her, when they most needed it. She is ever-grateful to them, and to the NHS, for their incredible work and care of X. She hopes that one day, the government will start to adequately fund them, so that fundraising is no longer required for their essential services.

Resources

https://www.womensaid.org.uk

www.nationaldomesticviolencehelpline.org.uk

www.refuge.org.uk

www.stalkinghelpline.org

Lissencephaly Foundation

www.lissfoundation.org

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This is another emotional, incredibly heart warming and, as always, funny as f**ck discussion. Both Gemma and Jess talk openly about their individual IVF journeys, the births, surgery, diagnosis and where they and their children are now.

Both Mums talk frankly about the process of moving through the acceptance of their first children’s early days to deciding to have more children. 

They share wonderful stories about their children’s unique characters and how that plays out between siblings in daily life. 

Guest Biographies

Gemma Sherlock lives in North London with her husband Rohan and two boys, Jasper, aged 7 and Spike, 3. Gemma followed her love of sculptural installations into a Degree in Art History and onto a career in Architecture. Her passion is manipulating existing buildings to create exciting interior spaces. These days, when not running around after the boys you can find Gemma in the Ladies Pond on Hampstead Heath or with a glass in hand nattering somewhere with friends. As a family they spend as much time as they can by the sea at their home in Cornwall.

Gemma says ‘I feel so lucky to have found myself amongst an indomitable group of people parenting children with additional needs and disabilities. Together we laugh, cry and muddle-through. We hope our Podcast will let others know they are not alone’.

Jess Honeyball is mum to 5 year old twins Freddie & Dylan, and 2 year old Leo. Jess lives in Crouch End, London with her husband Dan and kittens Margot & Jerry. Jess says ‘at least I have one female on my team, even if feline…’

'I adore storytelling, to my children and for a living. I work as a Producer and Director in non scripted television, and am kind of making it work juggling being a mum and working full time. My way of releasing tension (there’s a lot!) is through bootcamp and barre. My parents were musicians, so playing and seeing my boys respond to music is one of my greatest joys! I look forward to the days that they can play instruments themselves. I feel extremely lucky to be so plugged in to Reach, the charity for children and families with upper limb difference. For Freddie, seeing and playing with other children who look like him, and continue to push and smash the boundaries of what’s expected is magical and vital.'

Content Warnings 

IVF Stories 

Miscarriage 

New-born Brain haemorrhage and surgery 

Drug resistant epilepsy 

Birth stories 

Lots of tears 

Resources

Sinead Burke’s Book – Break the Mould

https://www.sinead-burke.com/break-the-mould

Hydrocephalus

www.shinecharity.org.uk/hydrocephalus/hydrocephalus

Cerebral Palsy

www.nhs.uk/conditions/cerebral-palsy/

Epilepsy

www.youngepilepsy.org.uk

ESES Syndrome

https://www.epilepsy.org.uk/info/syndromes/electrical-status-epilepticus-during-slow-wave-sleep-esess

Reach 

https://reach.org.uk/

Poland syndrome 

https://pip-uk.org/

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Gen says ‘you can be surrounded by people but if none of those people ‘get it’ it can be incredibly isolating. The loneliest I felt was strongest when I realised, I had lost my identity, Gen had gone, only Mummy remained. Finding a community who ‘get it’, support you, encourage you, laugh with you, cry with you, rant with you allowed me to begin to find Gen again.’ Our interview with Gen discusses struggles with mental health as a result of the breakdown of her relationship with Dylan’s Dad and the added stresses of having to move back in with your parents as a new mother. Coping as a single parent of a disabled child and how that manifested in day to day life. We discuss coping strategies and trauma responses around project managing medical care, appointments and therapies, socialising and early years parenting. Gen talks to us about how important self care is for her and her healing journey through yoga and meditation.

Guest Biography

Genevieve Porritt grew up in North London and had a career in the fashion industry before fulfilling a life purpose of becoming a Mum to Dylan in 2016. Dylan was born with Ullrich Congenital Muscular Dystrophy, a genetic muscle wasting condition which affects him physically. Genevieve and Dylan’s Dad split in 2017 and they moved back to North London from Croydon, they now live in Tufnell Park and Genevieve is Dylan’s main carer, she is a passionate advocate for the importance of self care particularly within our community, she loves open water swimming, yoga and writing poetry and with any spare time she has contributes to the production of the podcast!

Episode Transcript

Episode 1: Loneliness — Fking Normal Podcast

Resources

In this episode we discuss several resources which individually helped us as parents of disabled children.

There She Goes - originally broadcast by the BBC, There She Goes is a comedy drama that shines a light on the day-to-day life of a family looking after their severely learning disabled girl, Rosie.

https://www.bbc.co.uk › programmes

It is now being shown on Britbox. 

Far from the Tree : Parents, Children and the Search for Identity - Andrew Solomon tells the stories of parents who not only learn to deal with their exceptional children but also find profound meaning in doing so.

https://andrewsolomon.com/books/far-from-the-tree/

Not What I Expected: Help and Hope for Parents of Atypical Children - Rita Eichenstein PhD, paediatric neuropsychologist presents strategies to help parents of special-needs children navigate the emotional challenges they face.

https://www.amazon.co.uk/Not-What-Expected-Atypical-Children

Hypotonia UK Facebook Group - a supportive private Facebook group for parents of children with diagnosed Hypotonia usually a symptom of another condition. Based in the UK

https://www.facebook.com/groups/350373958646991/

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