This bonus episode was recorded on the Live Podcast event hosted on the 18^th May. With questions from listeners and people attending the event, we talk about: 

• Finding a therapist on the Affinity Hub website focused on Parent/Carers
• Writing an ‘If I die” book
• Spinning plates and choosing to drop them
• Life As-Pland fantastic resource for equipping parent carers with brilliant planners, journals and stickers  https://lifeas-pland.com/
• Being an employer and recruiting PAs – here are some of the policies and contract documents that Rachel uses with her son’s PAs [LINK]
• Puberty and keeping our young people clean and tidy – plus periods
• Finishing off the podcast with sex

 We really want to keep making the podcast and you we would so appreciate your help by liking, following and reviewing the podcast wherever you listen.   

Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.   

  Head to www.bornattherighttime.com to find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care. 

For our final episode of Season 2 we have the trio back together. Rachel, Sarah and Lucy reflect on life and;

• our need for counselling (hint you can find therapists focused on parent carer well-being at Affinity Huband Lapis)
• the awesomeness of Acute Liaison Nurses
• the gap between our capability and capacity
• knowing what we need to let go of and what we should hold onto
• knowing when we need help in our next step
• how society’s ableist thinking is so engrained we don’t even notice it

It would make our day if you could like, follow and review the podcast wherever you listen.

Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.

Head to www.bornattherighttime.com to book into one of our parent workshops or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers. 

We hope it won’t be long before we are back in your ears laughing, telling our stories and cheering each other on with useful hints and tips.

The formidable Mandy Hose and Kate Mulholland are Australian podcasters. Their podcast ‘Toopeas in a Podcast’ began life to talk about mothering twins with disabilities and to make the world a better place. It is now a podcast with over a million downloads and reaching parents, families, ‘peafessionals’ and ‘rectums’ around the world.  

Don’t know what we mean? Listen to find out more: 

• Terminolopea 
• Surviving on the Disability Parenting Desert Island 
• The importance of that “Me Too” moment and finding our own story 
• How to spot parents of twins  
• Living today like we are trusting our tomorrow selves 

We feel so privileged to share the humour, kindness and awesomeness which are Kate and Mandy. It would make our day if you could like, follow and review the podcast wherever you listen – this small act helps us be seen by more people.   

 Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.   

 Head to www.bornattherighttime.com to find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.  

Rachel and Rochelle have husbands with the same name and children with the same cheeks and level of complex disabilities. This podcast covers traumatic topics such as suicide, still birth and child loss.

We also cover;

• Blended diet – successes and failures
• Epilepsy – Keto diet
• Supporting friends through baby loss

There is also a revelation (despite Sarah’s warning about revealing too much in the podcast).

Rochelle blogs over at My Daily Miracle. She’s a mum of two and works as an LSA in a special needs school. You can find everything Rochelle at www.mydailymiracle.co.uk and at My Daily Miracle on Facebook and @lifewithlissencephaly_rochelle on Instagram.

It would make our day if you could like, follow and review the podcast wherever you listen.  Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.

Head to www.bornattherighttime.com to book onto one of ‘The Skies We’re Under’ live events (our next one is 8pm (GMT) Thursday 18^th May), find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.

Ableism, accessibility and the power of a mother’s heart …

 This is everything I love about podcasts; it’s funny, real, useful and has the most tender conversations brimming with love. In this episode, which was recorded in December 2022, Jessica Moxham, local mother and architect, talks about her book ‘The Cracks that Let the Light In’ on bringing up her disabled son; How complicated it is when our children are in hospital, making homes accessible and doing the best we can. 

You can buy Jess’ book anywhere that sells good books but beware! As well as being beautifully written, it might just challenge your perspective on disability, ableism and if you’re listening on Audible, make you pull over in the car to ugly cry. It’s crammed with the complexity, beauty and power of a mother’s heart with a side helping of smashing the patriarchy.  

 You can find everything Jess across social media 

Instagram @jessmoxham

Facebook @sonstoriesblog

Twitter @jessmoxham

You can also listen to her on women’s hour:

https://www.bbc.co.uk/programmes/m000tlty  

It would make our day if you could like, follow and review the podcast wherever you listen.  Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.   

Head to www.bornattherighttime.com to book into one of The Skies We’re Under live events (our next one is 8pm (GMT) Thursday 18^th May), find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.  

Foofighters, ‘Don’t Call me Mum’ and planning a funeral for your child – it can only be ‘The Skies We’re Under’ podcast.  

Listen to this great interview with Steph Nimmo who talks about incredibly hard topics with honesty, humour and gentleness. She shares about having to hold it all together when your world falls apart, how grief can wait a couple of years before it comes pounding at your door and talking about death and loss with children who have disabilities and autism. You can find out more about Steph at https://www.wasthisintheplan.co.uk/ and read her books Goodbye Daisy and Was this in the Plan? wherever you usually buy your books. 

It would make our day if you could like, follow and review the podcast wherever you listen. Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.   

Head to www.bornattherighttime.com to book into one of ‘The Skies We’re Under live events’ (our next one is 8pm (GMT) Thursday 18th May), find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.  

Dr Joanna Griffin is a parent carer and counselling psychologist. She has the brilliant blend of lived experience and a brain full of useful and important information which we can use to make this parenting lark a little easier.

In this episode we talk about;

• how finding it hard is normal and doesn’t mean we are doing it wrong
• the complexity of telling our story and our children’s story
• listening to our bodies
• the difference between difficult emotional responses and trauma

Plus, Jo has some super helpful information about trauma.

Find some great parent/carer resources at www.affinityhub.com and all things Dr Jo at on social media. Facebook @Joanna Griffin Instagram @griffinpsychology Twitter @Griffinpsych Linked In Dr Joanna Griffin

You can book the well-being conference [https://www.eventbrite.co.uk/e/parent-carer-wellbeing-day-a-chance-to-focus-on-your-wellbeing-needs-tickets-445942093807]

Trigger warning – just talking about trauma can be traumatic for people with trauma.

It would make our day if you could like, follow and review the podcast wherever you listen.  Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.

Head to www.bornattherighttime.com to book into one of The Skies We’re Under live events (our next one is at 10am Friday 23^rd April), find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.

Stories about Autism  

 James Hunt is the single dad of two autistic boys and the curator of Stories About Autism. With hundreds of thousands of followers across social media, James has created an amazing community – a community, he says, that help him just as much his stories help others.  

 In this conversation we delve into autism, disability, and being a sandwich carer (which sadly has nothing to do with cheese & pickle). You can find James across social media as Stories About Autism and on his website www.storiesaboutautism.com. All enquiries (to give him a book deal) can be emailed to james@storiesaboutautism.com  

 To join in with the podcast, email your stories, comments and questions to tswupodcast@gmail.com or follow us on Instagram @BornatRightTime. It would make our day if you could like, follow and review the podcast wherever you listen.   

Head to www.bornattherighttime.com to book into one of The Skies We’re Under live events (our next one is at 10am Friday 23^rd April), find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.  

#podcastswelistento #complexneeds #complexneedsfamily #carers #parentingpodcast #parentalsupport #disabilityinclusion #theskieswereunder #tswu #TSWUpodcast #valueofeveryone  #disabilityawareness #inclusion #podcast #teamaroundthechild  #pmld  #specialneedsparenting #learningdisability #cerebralpalsy #livedexperience  #coproduction #swearing #laughingisthebestmedicine #singleparent #singleparenting #dadofboys #autism #autismpodcast #autismsupport #coparenting #sandwichparent #sandwichparenting

As well as being joined by Sarah Clayton, we have the pleasure of Jane Hamer’s company. Jane is a physiotherapist in New Zealand who has recently completed research with parents of children who have disabilities and who are introducing night-time positioning equipment.

We talk about just how hard news can sometimes be and the important steps which can make ‘hard’ just a little easier. If you’re a parent of someone with limited movement or a practitioner – we think you’ll find this episode super helpful.

You can read Jane’s research here https://ourarchive.otago.ac.nz/handle/10523/13716

We’re referring to this podcast episode as our first edition of The Skies We’re Under practitioner series. Are there any professionals you would like us to talk to on the podcast? We’d love you to email tswupodcast@gmail.com to suggest who you would like to hear from. Similarly you can also email your stories, comments and questions to the same address or follow us on Instagram @BornatRightTime.

It would also make our day if you could like, follow and review the podcast wherever you listen.

Head to www.bornattherighttime.com to book onto one of ‘The Skies We’re Under’ live events, find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.

#TSWUpodcast #theskieswereunder #valueofeveryone #parenting #disability #disabilityawareness #inclusion #podcast #teamaroundthechild #OT #Physiotherapy #complexneeds #pmld #nursing #specialneeds #specialneedsparenting #autism #learningdisability #cerebralpalsy #epilepsy #livedexperience #communication #coproduction #podcastswelistento #laughingisthebestmedicine #physiotherapy #posturalcare #positioningequipment

Kenny and Tutu Popoola are husband and wife founders of Black Special Needs Parents (BSNP). BSNP provides a haven for black parents of children living with disabilities to express themselves and get the support they need to thrive while raising their children. It also serves as a great source of information as well as a signposting service to resources.

Having been brought up in Nigeria, Kenny and Tutu are now raising two children in the UK, one with complex disabilities. Kenny was slightly outnumbered during our chat but we covered how Dads are often underrepresented and women are more advanced – Kenny actually said it himself.

We unpick a bit of the typical male and female response to things and discuss the sense of joy (and loss) when a child develops typically and reaches milestones which seem effortless.

It’s a really comforting conversation which raises some important differences brought about by culture, privilege and faith, but also many similarities in our shared complex emotions.

Check out their brilliant website https://www.bsnpsn.org/ for more information or follow @blackspecialneedsparentsuk. The church with SEN provision that Kenny and Tutu are part of is https://citygates.london/get-connected/special-needs/

It would make our day if you could like, follow and review the podcast wherever you listen.

Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.

Head to www.bornattherighttime.com to book into one of ‘The Skies We’re Under’ live events, find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.

#TSWUpodcast #theskieswereunder #valueofeveryone #parenting #disability #disabilityawareness #inclusion #podcast #teamaroundthechild #OT #Physiotherapy #complexneeds #pmld #nursing #specialneeds #specialneedsparenting #autism #learningdisability #cerebralpalsy #epilepsy #livedexperience #communication #coproduction #podcastswelistento #laughingisthebestmedicine  #blackspecialneeds #kennyandtutu #SEN #senpodcast #complexneeds #complexdisabilities #podcastswelistento

#parentalsupport #disabilityinclusion #valueofeveryone #disabilityawareness #teamaroundthechild #pmld #specialneedsparenting #learningdisability #cerebralpalsy #livedexperience #coproduction #bridgingthegap #podcastswelistento #complexneeds #carers #parentingpodcast #parentalsupport #theskieswereunder #tswu #TSWUpodcast #cerebralpalsy #coproduction #laughingisthebestmedicine #autism #downsyndrome #heartcondition #CPR #DNR

I am delighted to be joined on The Skies We’re Under podcast by the infamous Paul and Michael Atwal-Brice, fathers to two sets of identical twin boys, living in Yorkshire.  

  In this wonderful conversation we talk about  

• Why all the best RomComs start in Cleethorpes
• How Michael and Paul fell in love with their boys
• Little things can make a big difference, for example a form saying ‘Parent 1 and Parent 2’ rather than ‘Mum and Dad’
• The impact of medical trauma on parents
• The importance of humour and beige food to get us through the day

 You can find all things Atwal-Brice at @atwalbricefamily.

To find links to the many organisations Paul and Michael work with as well as more about their beautiful family, visit www.atwalbricefamily.co.uk

This great interview with Tracey Huggins looks at; 

1. Mental health (ours not our children’s) 

1. Her sex life (that bit’s quite quick) 

1. Being a nodding dog to the system  

1. And having a child who doesn’t have a diagnosis. 

 You can find all things Tracey at @SENDaccordingtome and www.sendworldaccordingtome.co.uk She has stacks of useful information about all the practitioners who support families of children with disabilities. If you’re a parent new to this gig, it’s helpful resource.  

 Tracey’s book ‘Sendin Mam round the bend’ is also available from Amazon. 

 It would make our day if you could like, follow and review the podcast wherever you listen.  

 Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.  

 Head to www.bornattherighttime.com to book into one of The Skies We’re Under live events (our first one is on 16th March), find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers. 

Rachel talks to Lucy and Sarah about how being the parents of people with complex needs has taken over – well … everything. How we have changed and transitioned through seasons of our life and our child’s life. We cover;

• The emotional phases we go through – rage, resignation and resolve.
• Deputyship and power of attorney – who needs it and why?
• Realising there isn’t such a thing as ‘it’ll be easier when…’
• How none of us is Mother Teresa incarnate.
• One of our biggest roles as parents is to enable our children to have fun and feel safe without us.

We talk about how we might try and shift the idea of motherhood being at its best when we are frantically doing everything for our children, to one where we celebrate and share stories of our children loving life without us. #FunWithoutMum

It would make our day if you could like, follow and review the podcast wherever you listen.

Email your stories, comments and questions to tswupodcast@gmail.com to join in or follow us on Instagram @BornatRightTime.

Head to www.bornattherighttime.com to book into one of The Skies We’re Under live events (our first one is on 16th March), find a parent workshop or CPD-certified training for practitioners in communication, collaboration and personalised care with parents/carers.

#TSWUpodcast #theskieswereunder #valueofeveryone #parenting #disability #disabilityawareness #inclusion #podcast #teamaroundthechild #OT #Physiotherapy #complexneeds #pmld #nursing #specialneeds #specialneedsparenting #autism #learningdisability #cerebralpalsy #epilepsy #livedexperience #communication #coproduction #podcastswelistento #laughingisthebestmedicine #powerofattorney #disabilitytransition

In the second of our festive specials, Rachel, Sarah and Lucy talk about how Christmas for many, far from being magic and nostalgic, can simply become a case of ‘just got to get through it’. How for a lot of parents, we so want to feel one thing but the reality of the many emotions we live with become bigger and bigger as December progresses.

• Adapting plans and expectations for Christmas – what can be ditched?
• How to show love and support for a person with complex needs.
• Feelings of isolation at Christmas.
• Managing expectations.
• The contrast of the ‘complex Christmas’.
• Letting go of emotions.
• Additional pressures of Christmas.

Christmas is a time where expectations are highlighted and magnified. Having a child with complex needs takes the ability to create your ‘perfect Christmas’ out of your hands.

(See our Instagram post for the snow making reel discussed in this episode.)

Please rate, review and follow the podcast. You can also DM our social channels, or email TSWUpodcast@gmail.com.

#TSWUpodcast #theskieswereunder #valueofeveryone #parenting #disability #disabilityawareness #inclusion #podcast #teamaroundthechild #OT #Physiotherapy #complexneeds #pmld #nursing #specialneeds #specialneedsparenting #autism #learningdisability #cerebralpalsy #epilepsy #livedexperience #communication #coproduction #swearing #laughingisthebestmedicine

In this Christmas episode, we discuss the good, the bad and the ugly of Christmas. We talk the lead up, the lights, the planning, the nativities and the REALITY of Christmas Day, as well as

·      Is Christmas a holiday / break?

·      The experience of a SEN school Christmas / nativity – the carnage, the hilarity, the cuteness and the (in)appropriateness.

·      The emotional overload of the festive season.

·      Christmas presents – buying gifts for a child with complex needs and the overwhelming multitude of people who support them

·      Top tips for gifting including recycling, regifting, wish lists and whether it’s acceptable to buy children everyday essentials.

At a time when expectations of joy and magic are so high, what we often overlook is that reality and lived experience don’t change. Rachel, Sarah and Lucy discuss the importance of keeping in mind who Christmas is for and therefore how best to manage expectations and keep them realistic.

Please rate, review and follow the podcast. You can also DM our social channels, or email TSWUpodcast@gmail.com.

#TSWUpodcast #theskieswereunder #valueofeveryone #parenting #disability #disabilityawareness #inclusion #podcast #teamaroundthechild #OT #Physiotherapy #complexneeds #pmld #nursing #specialneeds #specialneedsparenting #autism #learningdisability #cerebralpalsy #epilepsy #livedexperience #communication #coproduction #swearing #laughingisthebestmedicine

Less support + Less equipment + Less routine + Higher expectations = Holidays

Or as we like to call it, having a different kitchen sink.

As ever Rachel, Sarah and Lucy give the slightly sweary warts and all version of life and stresses and loves of parenting a disabled child.

Lucy swears more than normal, spoiler alert (none of us have managed a relaxing summer break yet) and we’re all a bit p****d about all the Instagram spam of leisurely summer family trips away.*

Please rate, review and follow the podcast. You can also DM @bornatrighttime, or email TSWUpodcast@gmail.com

*As ever there is much to be grateful for and we love our children – blah blah blah…

#TSWUpodcast #theskieswereunder #valueofeveryone #parenting #disability #disabilityawareness #inclusion #podcast #teamaroundthechild #OT #Physiotherapy #complexneeds #pmld #nursing #specialneeds #specialneedsparenting #autism #learningdisability #cerebralpalsy #epilepsy #livedexperience #communication #coproduction #swearing #laughingisthebestmedicine 

Here we have some of our favourite extracts from Season 1 of The Skies We’re Under podcast. We had to do a ‘best of’ episode because we couldn’t end on episode 19 -that would be all kinds of wrong. 

If you’re wondering whether to listen to any of the episodes, here is a sneak peek at some of our truth telling, laughing and the things we’re learning as we trundle along. 

• Confessions of an optimistic parent 
• Little white lies 
• HELP! 
• Self-care – what it is not 
• Sex-ed 
• Pessary gate 
• Finishing with another entry for out poetry competition 

Thank you for coming back week on week. Please share the podcast with your friends, colleagues, or family as there are lots of great episodes for them to listen to.   

You can email us at TSWUpodcast@gmail.com or follow @bornatrighttime on Instagram and Facebook. As ever, it would be super helpful if you could rate, review and follow the podcast. That way you will know exactly when we are back – we will see you with season 2. 

It’s our last recorded episode of TSWU podcast. As ever we laugh and cry. We tell you the good, bad and ugly truth of the last few months for us and get excited about the upcoming live tour*. 

Thank you for coming back week on week. You don’t need to stop sharing the podcast with your friends, colleagues, or family as there are lots of great episodes for them to listen to.  

You can still email us at TSWUpodcast@gmail.com, follow @bornatrighttime on Instagram and Facebook. As ever, it would be super helpful if you could rate, review and follow the podcast so you know exactly when we are back. 

*currently there is no live tour but if you want to host us – get in touch. 

This episode of The Skies We’re Under podcast Lucy, Rachel and Sarah follow on from last week’s topic of trust. They talk about we discover is: 

• Trust is hard 
• Trusting takes work on both sides 
• Trusting someone means being vulnerable 
• The system which cares for our children is often not trusting nor trustworthy, despite the best efforts of those working within it. 
• Trust is necessary as the parent of a person with disabilities as trust is necessary when we need others to do something we cannot do alone. 
• “Don’t put that in your mouth!” poetry competition chosen entry for this week. 

We refer to 

 The thin book of Trust by Charles Feltman 

Atlas of the heart by Brene Brown 

Thank you for coming back week on week. Please share the podcast with your friends, colleagues, or family as there are lots of great episodes for them to listen to.   

You can email us at TSWUpodcast@gmail.com or follow @bornatrighttime on Twitter, Instagram and Facebook. As ever, it would be super helpful if you could rate, review and follow the podcast.  

Sarah and Rachel (sorry no Lucy today) are on The Skies We’re Under podcast today talking about how their stories have changed the way they trust themselves. They also prod the possible implosion of trusting the idea that everything will turn out just fine. It seems trust is earned and carved from time, actions and energy. It can’t be conjured from a job title, role or sense of responsibility. So how do we nurture trusting ourselves.

Also, we cry laughing and pause recording as we pull ourselves together. Thank you so much for listening to The Skies We’re under podcast from whichever of the 34 different countries you are living in.   

To submit your own stories, comments, questions or a poem to the “Don’t put that in your mouth” competition, * you can email the podcast at TSWUpodcast@gmail.com or message us @bornatrighttime on Instagram and Facebook.  

It would be wonderful if you could rate, review and follow the podcast from wherever it is you listen along.  

*prize pending 

This week Rachel, Sarah and Lucy wonder why we label and introduce our children completely differently to anyone else we know. Sarah boasts of her cycling proficiency award while Rachel has ‘musicality’. Who do you think is the most to least competitive amongst us? Listen to find out. 

In the podcast we mention the wonderful Rochelle and her blog My Daily Miracle. Tag some other blogs you find helpful as a parent. 

And tell us all about: 

• The awards you won at and since school. 
• The ways your children been celebrated well? 
• What categories of awards would you like to see in school? 

DM @bornatrighttime, or email TSWUpodcast@gmail.com 

#TSWUpodcast #theskieswereunder #valueofeveryone #parenting #disability #disabilityawareness #inclusion #podcast #teamaroundthechild #OT #Physiotherapy #complexneeds #pmld #nursing #specialneeds #specialneedsparenting #autism #learningdisability #cerebralpalsy #epilepsy #livedexperience #communication #coproduction #swearing #laughingisthebestmedicine 

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/ 

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/ 

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.

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. 

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. 

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 

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 

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 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.  

It is our second week of guilt and this week we chat about;
·       ‘Mum guilt’
·       Managing roles & expectations versus reality
·       Self-compassion
·       And some of our anti-dotes to guilt

There is of course the usual irreverent banter along the way.

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

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.

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. 

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:

• ReSPECT documents and end of life discussions.
• Completing the stress cycle. You can listen to the brilliant podcast with Brene Brown, Emily Nagoski and Amelia Nagoski, How to complete the stress cycle. Or read Emily and Amelia’s book.
• Affinity hub website: emotional support for parents of children with special needs.
• Day-by-Day: emotional wellbeing in parents of disabled children. Jo Griffin

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. 

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. 

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.