In this recast of the second ever episode of ‘The Skies We’re Under’ Lucy, Sarah and Rachel talk about some of the helpful and unhelpful ways they deal with times of stress and transition.

This is not professional advice but an honest conversation about the trust of complex realities and how they try to live life well.

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

They also do laugh a lot because this world we live in manages to have both sadness and laughter– despite the absurdity of it all.

Please do not listen to this episode if this will not serve you well. They also discuss the importance of conversations about 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

Since this episode the podcast has gone from strength to strength and almost 130 episodes later there's still so much to discuss and share with our wonderful listeners, the families of people with complex disabilities and the many practitioners that support us. Moving forward we need your help to keep producing new episodes. You or your organisation can sponsor a season or advertise within an episode. Email us to find out more.

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.

This week we're travelling back in time to the first ever episode of 'The Skies We're Under'. Back to a time when we didn't have studio production to keep the sound crisp and we still had the energy to beep out all the swears.

Content warning the topics of childhood cancer, birth trauma, chromosome duplication and severe disability is discussed.

Rachel Wright, Lucy Parr and Sarah Clayton introduce themselves and their families (as they were back in early 2022). 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.”

Since this episode the podcast has gone from strength to strength and almost 130 episodes later there's still so much to discuss and share with our wonderful listeners, the families of people with complex disabilities and the many practitioners that support us.

Moving forward we need your help to keep producing new episodes. You or your organisation can sponsor a season or advertise within an episode. Email us to find out more.

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

Life updates, broken systems and tiny pockets of joy are packed into this week's episode of The Skies We’re Under. From continuing healthcare assessment clangers, post‑college provision crises and why SEND reform feels equal parts hopeful and terrifying.

Rachel, Lucy and Sarah bring laughter, swearing, tears and truth as they talk about navigating everything from milestone birthdays to the minefield of adult social care and EHCP chaos.

With the SEND white paper looming, they explore what real inclusion could look like and what families fear it won’t. Plus, a very special interview as Rachel’s 10-year-old son making his podcast debut freshly diagnosed and finding his voice.

If you'd be interested in sponsoring an episode of The Skies We're Under, please contact us at TSWUpodcast@gmail.com.

To help us keep podcasting we’d LOVE it if you could support the podcast, like, subscribe, review and share. The more listeners we get, the more we’ll be able to provide things to listen to - and we’re chock full of ideas!

We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly.

You can leave a message with us in a number of ways:

· Firstly you can leave a message using speakpipe here: SpeakpipeTSWU

(Please note calls need to be limited to 90 seconds)

· You can send us a voice note from your phone to our email address at tswupodcast@gmail.com

· Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to tswupodcast@gmail.com

Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) .

Thanks for listening and being a part of our podcast community -It would make our day if you could like, follow and review the podcast wherever you listen.

We’re so happy that The Skies We’re Under is a free, independent podcast. Any sponsorship received is used to cover the costs of the production of episodes and compensate our valuable guests for their time. The hosts provide their time and efforts for free. They do, however, appreciate any offers of caffeination to keep them going – you can buy them a cuppa here…

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.

Happy New Year! There’s no better way to rid you of the January blues than to listen to Rachel’s conversation with the fantastic Sam Bowen.

Sam is ‘one of us’, someone who has both lived and loved experience of raising and loving a child with complex disabilities. When the candle snuffer came down on her hopes for her career and her imagined life as a parent, Sam has used all the experience and knowledge she has to make museums a truly inclusive environment for everyone.

Sam’s energy and enthusiasm for inclusion, and the power of museums shines through. She’s on a mission to highlight and eradicate ‘othering’, and we are here to champion her in all she does.

You can read more about Sam and her book here:

• sambowen.co.uk
• sendinmuseums.co.uk
• The Phoenix and the Unicorn

Thanks to the lovely folk at The Group for Education in Museums (GEM) for sponsoring this week's episode. You can find more about them and their work here.

To help us keep podcasting we’d LOVE it if you could support the podcast, like, subscribe, review and share. The more listeners we get, the more we’ll be able to provide things to listen to - and we’re chock full of ideas!

We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly.

You can leave a message with us in a number of ways:

• Firstly you can leave a message using speakpipe here: SpeakpipeTSWU

(Please note calls need to be limited to 90 seconds)

• You can send us a voice note from your phone to our email address at tswupodcast@gmail.com
• Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to tswupodcast@gmail.com

Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) .

Thanks for listening and being a part of our podcast community -It would make our day if you could like, follow and review the podcast wherever you listen.

We’re so happy that The Skies We’re Under is a free, independent podcast. Any sponsorship received is used to cover the costs of the production of episodes and compensate our valuable guests for their time. The hosts provide their time and efforts for free. They do, however, appreciate any offers of caffeination to keep them going – you can buy them a cuppa here…

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.

It’s party time - your favourite threesome have dressed up (sort of!) and are here to celebrate another year of The Skies We’re Under, making it through and remembering all the best bits, and filtering it so we forget all the worst bits!

We reflect on the challenges that the systems we navigate create, the way that we’re forced into ‘fight mode’ armed with paperwork and legal references. Or, on the other hand, feeling the need to be overly kind to protect our children and young people.

This is an episode full of wit and wisdom, about not letting fear rob you of joy, and looking for the glimmers amongst the triggers.

The charity Lucy recommends is Jumbulance.

If you'd be interested in sponsoring an episode of The Skies We're Under, please contact us at TSWUpodcast@gmail.com.

To help us keep podcasting we’d LOVE it if you could support the podcast, like, subscribe, review and share. The more listeners we get, the more we’ll be able to provide things to listen to - and we’re chock full of ideas!

We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly.

You can leave a message with us in a number of ways:

• Firstly you can leave a message using speakpipe here: SpeakpipeTSWU

(Please note calls need to be limited to 90 seconds)

• You can send us a voice note from your phone to our email address at tswupodcast@gmail.com
• Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to tswupodcast@gmail.com

Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) .

Thanks for listening and being a part of our podcast community -It would make our day if you could like, follow and review the podcast wherever you listen.

We’re so happy that The Skies We’re Under is a free, independent podcast. Any sponsorship received is used to cover the costs of the production of episodes and compensate our valuable guests for their time. The hosts provide their time and efforts for free. They do, however, appreciate any offers of caffeination to keep them going – you can buy them a cuppa here

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.

Keeping your family safe, enjoying times of celebration and being real about what all that means. Rachel, Sarah and Lucy talk all the phases of life, getting used to new realities, and meeting the expectations of ourselves and others.

Sarah and Lucy talk through their experiences of transitions around home ownership, packed with plenty of practical advice* Before the Big C is discussed. Talking all things Christmas planning, how to navigate gifts (both receiving and giving), and how to cope with the changes to routine that the period brings to try and make the most of the ‘most wonderful time of the year’.

*The great resources that Sarah mentions include:

• My Safe Home
• HOLD - Home Ownership for Long Term Disability
• Small Support Programme
• Gloriously Ordinary Lives

Thanks to the lovely folk at Safe Place Beds for sponsoring this week's episode. You can find more about them and their work here.

If you'd be interested in sponsoring an episode of The Skies We're Under, please contact us at TSWUpodcast@gmail.com.

To help us keep podcasting we’d LOVE it if you could support the podcast, like, subscribe, review and share. The more listeners we get, the more we’ll be able to provide things to listen to - and we’re chock full of ideas!

We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly.

You can leave a message with us in a number of ways:

• Firstly you can leave a message using speakpipe here: SpeakpipeTSWU

(Please note calls need to be limited to 90 seconds)

• You can send us a voice note from your phone to our email address at tswupodcast@gmail.com
• Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to tswupodcast@gmail.com

Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) .

Thanks for listening and being a part of our podcast community -It would make our day if you could like, follow and review the podcast wherever you listen.

We’re so happy that The Skies We’re Under is a free, independent podcast. Any sponsorship received is used to cover the costs of the production of episodes and compensate our valuable guests for their time. The hosts provide their time and efforts for free. They do, however, appreciate any offers of caffeination to keep them going – you can buy them a cuppa here…

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.

CONTENT WARNING: If covering conversations about the preventable death of people with learning disabilities is not going to serve you well, please skip by this episode.

Professor Sara Ryan joins Rachel Wright on The Skies We’re Under podcast. Many of you will know the story of the tragic loss of her son Connor and how she uses her lived experience and professional expertise to drive real change. Her new book Critical Health and Learning Disabilities: an Exploration of Erasure and Social Murder is trying to expose the systemic failures of our systems which are impacting the most vulnerable in our society. We all need to sit up and listen.

This powerful conversation covers

• The layers of failure which culminate in disenfranchising people with learning disabilities and autistic people
• The impact of dehumanisation of people in healthcare policy and delivery
• The power of collective accountability and responsibility
• The role we can all take in driving change

Sarah’s insights challenge us to rethink how build systems and services rooted in humanity and justice.

Sara refers to a plain English version of the book which can be accessed here: https://learningmet.mmu.ac.uk/resources

To help us get back to podcasting and planning for season 5 we’d LOVE it if you could support the podcast, like, subscribe, review and share. The more listeners we get, the more we’ll be able to provide things to listen to - and we’re chock full of ideas!

We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly.

You can leave a message with us in a number of ways:

• Firstly you can leave a message using speakpipe here: SpeakpipeTSWU

(Please note calls need to be limited to 90 seconds)

• You can send us a voice note from your phone to our email address at tswupodcast@gmail.com
• Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to tswupodcast@gmail.com

Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) .

Thanks for listening and being a part of our podcast community -It would make our day if you could like, follow and review the podcast wherever you listen.

We’re so happy that The Skies We’re Under is a free, independent podcast. Any sponsorship received is used to cover the costs of the production of episodes and compensate our valuable guests for their time. The hosts provide their time and efforts for free. They do, however, appreciate any offers of caffeination to keep them going – you can buy them a cuppa here…

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.

CONTENT Warning - in this episode we talk about bereavement, grief and scattering ashes.

It’s been a looooong summer!

You’re all invited to a wee celebration of surviving the summer, celebrating the wins, navigating the tricky parts, and transitioning back to a new term.

Rachel, Sarah and Lucy get right back into it, from Rachel’s erroneous winking, Sarah’s paddle boarding with her Dad’s ashes and Lucy’s big pat on the back for some epic milestones and summer achievements. We have it all, including what we have learned about starting a new term well.

To help us get back to podcasting and planning for season 5 we’d LOVE it if you could support the podcast, like, subscribe, review and share. The more listeners we get, the more we’ll be able to provide things to listen to - and we’re chock full of ideas!

We’d love to hear from you – we love sharing stories, we love hearing how things are going, the good, the bad, the snotty-crying ugly.

You can leave a message with us in a number of ways:

• Firstly you can leave a message using Speakpipe here: SpeakpipeTSWU

(Please note calls need to be limited to 90 seconds)

• You can send us a voice note from your phone to our email address at tswupodcast@gmail.com
• Or, if the thought of hearing your own voice gives you ‘the ick’, then send us an email to tswupodcast@gmail.com

Whatever way you choose to get in touch, we really want to hear your thoughts, views, musings, rants and confessions (we love a confession!) .

Thanks for listening and being a part of our podcast community -It would make our day if you could like, follow and review the podcast wherever you listen.

We’re so happy that The Skies We’re Under is a free, independent podcast. Any sponsorship received is used to cover the costs of the production of episodes and compensate our valuable guests for their time. The hosts provide their time and efforts for free. They do, however, appreciate any offers of caffeination to keep them going – you can buy them a cuppa here…

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.