The Skies We’re Under

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 [email protected] - 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 [email protected] - 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 

Research referenced from Disabled children’s partnership 

Simple Stuff Works  

Born at the Right Time 

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 

 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 

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 [email protected]. 

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. 

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 [email protected].

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

It is our second week of guilt and this week we chat about;

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 [email protected]

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 

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.