The paperback of my book is out today! 🎉 A memoir about raising Ben and all the things I learned about disability, parenting and myself.
New cover & 2 new chapters - the advice I would give a new mother (myself), & how reading has changed our lives.
I think you’ll like it!
Please help spread the word about this summer's Practical Intervention Fund (PIF), this round has a #sensory focus, we have weighted blankets, noise canceling & reduction headphones/ear plugs, fidget toy & oral chew packs to gift to disabled kids & adults: https://t.co/k87arCy5Qv
@UoYppcrg are looking for bereaved parents to help them with research about their experiences of their child's care around the time of their death in PICU or NICU to inform future policy and service development in Children's Palliative Care.
If you can help, details below.
Are you a parent of a baby or child who has died in the last five years after receiving care in #NICU and #PICU?
@UoYppcrg would like to hear about your experiences.
📧 [email protected]
📞 07384239136
@TimHerrera Hi, I paid to attend this but couldn’t make it live. When I booked it said I could watch on catch up but I haven’t been sent a link. Where can I find this?
And that's before you get to the on-running scandals like children's homes or all the day to day ways ordinary people are treated like shit (disability benefits, family courts, SEND system, visa renewals etc etc....)
And it’s the big day!
🎈🎉 HAPPY PUBLICATION DAY to this beauty, the extraordinary Zebra and Lord Jones by the inimitable @BookwormVaught!
https://t.co/yEMl35wUAn
My experience of having a disabled son has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about people with similar lives and I hope you might too!
I interviewed @ellenavalizadeh about being a mother to her two sons. It was an insightful conversation about having two children with very different conditions and how the personal and professional overlap for her. https://t.co/qwB2DNNFcI
I’m not sure it’s a good idea to give people this misinformed any airtime, but this tweet shows his ignorance in what’s happening with pupils with SEND in schools. Golden ticket?! Ha!
4. Stop the SEND explosion in schools.
The number of pupils issued with Education, Health and Care Plans has doubled in the last eight years.
There are some cases of genuine need - but many are responding to incentives where an EHCP is a golden ticket.
https://t.co/poGb8bjcQw
The Touretteshero Practical Intervention Fund has a simple application process with as few barriers as possible, no medical or financial info required & it’s open to those waiting for diagnosis too. Folks with #LongCovid & other chronic illnesses welcome @KTLGoldfinch#Solidarity
I loved taking to Rachel and Lucy, and the things we talked about- houses, motherhood, ableism- are such important aspects of being a parent of a disabled person. Rachel’s determination to talk about all aspects of being this kind of parent is incredible.
On tomorrow's #theskieswereunder#podcast, @jessmoxham local mother, architect & author, talks with Rachel & Lucy about her book ‘The Cracks that Let the Light In’. They discuss life when children are in hospital, making homes accessible and doing our best.
Tune in from 6am 3/5
I wrote a longer blog about it here: https://t.co/hu2vxr8tQF
(Yes, my (toxic?) trait is reading posts weeks after they are published, stripping out all the facts and figures, and putting in my own personal anecdotes)
In this post @Samfr sets out how the 'ordeals' experienced by people trying to access services are deliberate, which feels true to me. The difficulty of getting a place at the most appropriate out-of-borough school, or an adapted bus to get there, etc, etc is on purpose.
New post just out
"Ordeals and the Empathy Gap" - on the big problem with the budget's plans to help people back to work.
(Free to read)
https://t.co/M2U1YIwrBf
People in government don’t have the empathy required to imagine what they don’t experience. If you claim disability benefits, or deal with social services, you know what 'ordeals' feel like, and they feel shit. And they don't even work!