Ep 4: Extreme juggling with Helen Gamble-Shields
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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