Blog-2025-09-23T15:38:15+01:00

Blog

Through the blog, Rachel’s Memoir The Skies I’m Under and The Skies We’re Under podcast we share the stories of fellow parents so we can all feel a little less alone and little more understood.

Click the icon to the left to access a page of useful resources that we have compiled over the years. 

Not a Different Destination, but a Different World: Reframing Parent Carer Support

Today I was at the Labour Party Conference with the incredible Hayley Charlesworth of Harry’s Pals, speaking about Every Parent’s Worst Nightmare. This isn’t about disability.It’s about the mental health of parents and carers who are told their child has a life-limiting condition. No parent ever holds their newborn and imagines being told their child may die before them. Yet [...]

By |September 30th, 2025|Categories: Uncategorized|0 Comments

Disability isn’t a Four Letter Word (2025)

CONTENT WARNING: This blog contains ableist slurs with the purpose of understanding and challenging how our ableist attitudes shape and form our language. For ableist slurs not to evolve attitudes need to change. We give words their power. The negativity of our words depends on our attitudes not the letters it contains. Words surrounding disability have a life cycle [...]

By |June 16th, 2025|Categories: Uncategorized|0 Comments

Hmm…this feels unusual

Hmm, this feels a bit unusual: Advice for Healthcare Professionals When Dealing With Something Rare By Jo Holmes Once again it’s ‘Rare Disease Day’. While I don't love identifying Lucy’s genetic diagnosis as a disease,  I do find belonging in the rare community that builds up around the 28th February each year. You may gather from the title of the [...]

By |February 27th, 2025|Categories: Uncategorized|0 Comments

‘Same S*!t Different Location’?

Holidays 'Same S*!t Different Location'. That's the title of an episode of 'The Skies We're Under' podcast, a podcast by and for families of children with complex disabilities. It's true... as parent carers wherever we go as a family the routines of daily care don't stop because we're on holiday. Feeds need making, syringes washing, food blending, moving needs to [...]

By |November 21st, 2024|Categories: Uncategorized|0 Comments

Engage better with parent carers using these “Top Tips” for busy schools

When Government Improvement Plans or initiatives arrive in inboxes, or in the media, it can be incredibly frustrating when schools already have so many everyday demands on time and resources. We know that the additional demands you feel, unite schools with the families you engage with, who are also focussing on ‘just’ getting through the day. The government's Special Educational [...]

“Please, Sir, I want some more.”

Less Disney Princess and more Oliver Twist. The life of a Parent/Carer can feel like being an impish rogue, asking for more than you deserve. To make life good, we knock on the door of services across SEN, health and social care asking, “Please, sir, I want some more…!” I was never a fan of Oliver. The images in [...]

By |October 2nd, 2023|Categories: Help, Respite, Thriving not surviving|1 Comment

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