The Skies We’re Under
Nurse, author and Director of Born at the Right Time, Rachel Wright talks to fellow parents of people with disabilities and others in their community. With the power of story telling, laughter, swearing and useful information they create solace in knowing the warts and all truth of this off piste version of parenting. Whether a well seasoned parent, newbie, one of many practitioners supporting families or simply someone wanting to peak over the fence - you’re welcome to listen in. We are better together, whatever Skies We’re Under.
Listen on:
Episodes
Wednesday Apr 13, 2022
Wednesday Apr 13, 2022
Sarah, Rachel and Lucy open up and talk all things epilepsy in today’s podcast. There are no fluffy unicorns or rose-tinted glasses here. We’re real, raw and talking about epilepsy from a parent perspective.
Witnessing it, treating it and living on the brink of when it might strike again. So essentially this episode should just be one big trigger warning. But if you might find it helpful to know you are not treading the epilepsy tightrope alone – listen in as we swear and rant about:
Different types of seizure
Diagnosis
Monitoring epilepsy
SUDEP (Sudden unexpected death in epilepsy)
Medications and other treatments
Making YouTube films of different seizure types
Trigger warning we talk all about Epilepsy and it is traumatic to witness. This conversation includes Sudden Unexpected Death in Epilepsy (SUDEP).
Useful and reputable information
All about epilepsy from NHS
Sami alert (as talked about by Lucy)
SUDEP action
Children epilepsy charity
Different epilepsy monitoring options highlighted in epilepsy UK
Wednesday Apr 06, 2022
Wednesday Apr 06, 2022
This week on the podcast we are talking about one of our favourite things - food. For each of our stories though, the way we fed our complex children was quite different. We faced challenges, learned new skills and each time – found an alternative way to keeping our children well fed. Unsurprisingly we continue the irreverent humour and chit chat about:
Breast feeding
Enteral feeding (via tubes into nose, mouth or stomach)
Chemotherapy
The trauma of the health visitor weigh-in clinics
Being told your child needs to be nil-by-mouth
Sensory issues
The statistics we discuss are for the UK and we need to give a trigger warning that in telling our stories we discuss traumatic birth and childhood cancer.
If you are listening to the TSWU use the #TSWUpodcast on social media and tell us where you are, what you think and what you want us to talk about next at TSWUpocast@gmail.com.
Wednesday Mar 30, 2022
Wednesday Mar 30, 2022
This week on the podcast we are talking all things self-care. But obviously it’s more convoluted than that and covers Sarah’s impression of Edward scissor hands, Lucy’s inappropriate massage experience and our lives being the solar system around our children with disabilities.
Sometimes when everything is happening, the Instagram version of self-care is a pipe dream and sometimes self-care is plain uncomfortable and hard. Importantly though we realise that to really look after our own well-being and care for self, first we need to know who our self is and what she/he needs. Maybe it is more about cutting back than adding more - pruning rather than planting
We also share information on;
4th April 2022 is HIE awareness day. Find out more through Peeps.
Racketys disabled clothing
M&S easy dressing range
Uribag portable urinal
Follow and connect with the podcast through Instagram, Facebook and twitter via @bornatrighttime
If you are listening to the TSWU, use the #TSWUpodcast on social media and tell us where you are, what you think and what you want us to talk about next.
You can email us at TSWUpodcast@gmail.com.
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