Introduction

The Skies We’re Under is a podcast by and for parents of people with complex disabilities. It’s about the weather not always what we predicted or want. Author of The Skies I’m Under and nurse Rachel Wright has authentic, funny and sometimes sweary conversations with fellow parents about a different kind of parenthood. It’s for all of us trying to get from one end of the week to the other, whilst bridging the gap between the life we expected and the one we are living.

The Skies We’re Under Podcasts

Whose life is it anyway?  | S1 | E15 

When things go really wrong.  

Today, Rachel, Lucy and Sarah discuss a case where the local authority took parents to court for interfering ‘in a combative way’ in relation to the care package for their child. 

Tough content as we try to hold onto the fact that every person involved with our families -commissioners, young people, parents, practitioners- is human.  

Oh, and an update on Mousegate.  

Trigger warning: animals were harmed during the recording of this episode. 

Do email us at TSWUpodcast@gmail.com or connect @bornatrighttime in Instagram and Facebook. We would really appreciate it if you could rate, review and follow the podcast to help us keep recording. 

Link to the court case discussed https://www.bailii.org/ew/cases/EWHC/Fam/2021/2844.html
Blog discussing the outcome  

http://www.lukeclements.co.uk/a-high-octane-conflict/ 

Institutionalising parent carer blame 

http://www.lukeclements.co.uk/institutionalising-parent-carer-blame/ 

Working together policy 

http://www.lukeclements.co.uk/coroners-criticises-working-together-2018/  

Shifting family dynamics 

https://oadd.org/journal/volume-27-number-2-changing-social-welfare-provisions-and-shifting-family-dynamics/ 

Diving deeper into the goldfish bowl | S1 | E14 

Join Rachel, Sarah and Lucy as they continue to unpick notions of battle language and tribalism among parents and professionals.

The labels of ‘unreasonable’ and ‘difficult’ parents, and the lack of humanity when we view professionals purely as part of the system that can be so very challenging.

Oh, and on an entirely unrelated note, Lucy shares her Mousegate story. Actual mouse. In actual house.

Grab a cuppa and come join us.

Living in a Goldfish Bowl | S1 | E13 

Lucy, Rachel and Sarah talk this week on the podcast about living in a goldfish bowl. As we swim around our lives being watched, assessed and scrutinised by many practitioners and services set up to support us.  

 But what difference does this constant observation have on our lives, our relationships and levels of stress? 

We are nearing the end of season 1 of the podcast. If you have a moment, we would really appreciate you taking the time to review, rate and follow the podcast. Then tell anyone who might listen all about it. 

For questions, disability hacks or to share your story, you can email TSWUpodcast@gmail.com – we would love to hear from you. If you have any ideas or resources might support us being able to continue the podcast we would also love to hear from you. 

Resilience | S1 | E12 

Lucy, Rachel and Sarah talk this week on the podcast about resilience.  

Do we have it?  

Do we want it?  

Is there a difference between healthy and unhealthy resilience?  

There are also confessions of the umbrella-stand-kind and a couple of handy, practical disability hacks. 

You can find more information about PATH (Planning alternative tomorrows for hope) here and see the photos we talk about on our Instagram @BornatRightTime.  

If you have a moment, we would really appreciate you taking the time to review, rate and follow the podcast. Then tell anyone who might listen all about it! For questions, disability hacks or to share your story, you can email TSWUpodcast@gmail.com – we would love to hear from you. 

Help | S1 | E11 

Sarah, Rachel and Lucy laugh, talk and rant a bit about parenting children with disabilities, in particular asking for and getting help. We confess to thinking none of us need it but actually acknowledging we all do. There is a confession of the pessary kind and if you do not laugh during this episode – you might need to be checked out by a doctor. 

 We cover: 

  • Helpful help 
  • Unhelpful help 
  • The relationship between helping and being helped 
  • And how asking for help isn’t weakness but true connection and the best part of human-ing 

Research referenced from Disabled children’s partnership 

Simple Stuff Works  

Born at the Right Time 

Sami alert (as talked about by Lucy) 

SUDEP action 

Children epilepsy charity 

Different epilepsy monitoring options highlighted in epilepsy UK 

Epilepsy | S1 | E10 

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 

Food and alternative feeding | S1 | E9 

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

Self-Care | S1 | E8 

Self-care or not to self-care. That is the question. 

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, inappropriate massage techniques, pruning rather than planting 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. 

4th April 2022 is HIE awareness day through Peeps. 

Racketys disabled clothing 

M&S easy dressing range 

Uribag portable urinal  

Follow and connect through Instagram Facebook 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.  

Guilt | S1 | E6 

This week Rachel, Sarah and Lucy discuss the big ol’ topic of guilt in all its formats. Mum guilt. Carer guilt. All the guilt. Who knew parents of disabled children felt guilty? Shocker. In fact, we started talking and realised we have waaaay too much to say on the topic, so this is the first of a two parter. You’re welcome.

We try and untangle guilt versus shame, and think about how our personalities and lived experiences might shape our perception and experiences of guilt. Spoiler alert: Rach feels guilty for sending her son to school in costume on the wrong day. Lucy thinks it’s hilarious.

As ever- smiles, banter, and real authentic life stuff.

If you like our podcast, it would make a huge difference if you could rate, review and follow wherever you get your podcasts. And please feel free to join in the conversation, sending your questions, thoughts and comments to TSWUpodcast@gmail.com

Relationships | S1 | E5

In this week’s podcast Rachel, Sarah and Lucy are supposed to be talking about relationships but somehow it includes: 

  • Confession of an optimistic parent 
  • EHCPs wormholes 
  • Sex Ed
  • ‘Would you believe?’ the scrutiny of parents giving their child blended diets 
  • How our relationship with ourselves, partners and others have changed 

 In response to a question from a listener we talk about Em and friends cards 

https://emandfriends.com/ 

 Because we are three parents doing this in our own time whilst juggling our work, families and children with complex needs, we are going to have to skip a week.  

The podcast will be back in 2 weeks when we will be talking about grief.  

It would make such a difference to us if you could rate, review and follow the podcast wherever you listen and be sure to send us your questions, thoughts and suggestions to TSWUpodcast@gmail.com.

It doesn’t make sense… | S1 | E4

In this week’s podcast Rachel, Sarah and Lucy talk about trying to make sense of life using fridge magnets and faith. Listen to hear: 

  • They saying they hate (and love)
  • Whether there is a God and if she is any help at all
  • We start talking about what we find helpful in staying emotionally well
  • Practical ways you can help friends who are going through a tough time 

 In the podcast we share information about meal planner apps like https://takethemameal.com/  

Positive family connections positivefamilies@warwick.ac.uk 

Simple Stuff Works www.simplestuffworks.com

The sound still isn’t great, but we are working on technical issues.

Next week the theme is all about relationships.

 The sound still isn’t great, but we are working on technical issues.  

Next week we are talking about relationships. 

A new normal way of living | S1 |E3

This week, Lucy Parr, Sarah Clayton and Rachel talk about some of the helpful and unhelpful ways we deal with times of stress and transition. None of us are trained to provide professional advice but we do talk honestly about the truth of our complex realities and how we try to live life well.

Trigger warning: Very early on in this episode we talk about the fear and potential for childhood death, DNACPR, childhood cancer and stroke.

We also do laugh a lot because this world we live in manages to have both – despite the absurdity of it all. Please do not listen to this episode if this will not serve you well. We also discuss the importance to have conversations about our children’s end of life care. Details of resources are below.

The following resources are discussed during the podcast:

Email your questions and comments to tswupodcast@gmail.com and don’t forget to rate, review, share and subscribe – this increases our chance of being able to keep doing The Skies We’re Under podcast. 

But we’re going to Toys-R-Us | S1 | E2

In this episode Rachel, Lucy and Sarah talk about how their children were diagnosed. The things that set them apart and bring them together. There are more discoveries about Sarah’s parenting fails and how Lucy’s incense obsession might have impacted professionals believing her. 

Email your questions and comments to tswupodcast@gmail.com and don’t forget to rate, review, share and subscribe. 

Trigger warning the topics of Childhood cancer, traumatic births, epilepsy and duplication Q syndrome is discussed. 

That’s not my name | S1 | E1

In this episode Rachel Wright, Lucy Parr and Sarah Clayton introduce themselves and their families. They all have different experiences of becoming parents of children with complex needs and how that impacted their identity as women and parents. The conversations they have sometimes even makes them exclaim, “That’s not my name.”

Lucy swears within the first 2 minutes so apologies for that – God created headphones for a reason (so children couldn’t listen to our podcasts). The sound is not as good as we hoped, but we are working on it so keep listening and we will get better. 

Email your questions and comments to tswupodcast@gmail.com and don’t forget to rate, review, share and follow the podcast. 

Trigger warning the topics of childhood cancer, chromosome duplication and severe disability is discussed. 

The Skies We’re Under Host

Rachel Wright

Rachel a qualified nurse and unqualified mum of 3, parenting a son with complex disabilities and life-limiting epilepsy. Author (The Skies I’m Under), award winning blogger, speaker, trainer and founder of Born at the Right Time. She’s passionate about effective communication, co-production, community and embracing life’s challenges.  

An expert through lived experience, Rachel works towards #BridgingTheGap between families of children with complex conditions and the practitioners who support them. Occasionally she ties on her trainers and runs in a vague attempt to counteract her love for Salt ‘n Vinegar crisps, hummus and all things carbohydrate. Her middle son is currently writing a book titled, “My mum’s epic fails” (it is likely to have more than one volume). 

The Skies We’re Under regular guests 

Sarah Clayton (BSc, PGCE)

Passionate about all things postural care. Sounds dull but it turns out that her passion translates into highly contagious enthusiasm. She’s a biologist and qualified teacher with over 20 years’ experience of working alongside families of children with complex needs. Her life’s mission is to reduce avoidable complications such as hip dislocations and scoliosis. She has developed a range of accredited training courses accessible to health, social care and education practitioners.  

When her daughter was diagnosed with a malignant brain tumour aged 6, she suddenly became part of ‘one of those families’. Sarah has three other children, works full time and can regularly be found wearing her jumper inside out. 

Lucy Parr (BSc, MSc)

Currently studying for a Doctorate in educational and community psychology. One of her four children has a rare chromosomal disorder resulting in multiple complex needs. After years as a stay-at-home parent, she returned to university to gain a First-Class honours which resulted a nomination as National Student of the Year 2018. She completed an MA in Oxford and is now studying as an Educational Psychologist.  

She’s a non-preachy vegan, saltwater soul who loves the sea, a cleaner upper of many shituations and has now got to the stage of life where she needs to moisturise her elbows. 

TSWU podcast can be found wherever you get your podcasts