The SEND Mum Club

Ciara Burnside joins me in this episode to talk about her 6 month old son Ralph who has Epidermolysis Bullosa, otherwise known as EB or Butterfly Skin. She explains what that is, what it means, and how her health anxiety added an extra layer of difficulty onto dealing with Ralph’s diagnosis. Ciara talks about the struggle to trust anyone enough to look after Ralph due to how fragile his skin is, and how the condition is so rare even medical professionals have struggled to handle in in the right way. 
 Ciara is on a mission to raise awareness of EB and is also campaigning for more research into the condition. You can sign the petitions she talks about in the episode here:
https://petition.parliament.uk/petitions/775393#main-content (UK only)
https://www.change.org/p/fund-a-future-for-people-living-with-epidermolysis-bullosa-eb (worldwide)
You can find Ciara on socials here:
Instagram - @ciaraburnsidex
TikTok - @ciaraburnside
 The charity Ciara mentions is here:
https://www.debra.org.uk/?gad_source=1&gad_campaignid=22557552939&gbraid=0AAAAADil0qsdhFLsFLoFVsqQFpd0rMi9h&gclid=CjwKCAjwifjVBhBKEiwAYx4K9BB3z8MnwM5nVtoPMNEEG9nw3Npj2622cAtkmXlDyucCqnfOeRGOFBoCMagQAvD_BwE

Kelsey Reid is my first guest back after the summer and it’s perfect timing because she’s on to talk about her decision to home educate her daughters Maizie & Maddie. We discuss what that actually looks like and the difficult road that led to that decision. We also talk about how differently the girls’ autism presents and I find out Kelsey’s thoughts on *that Telegraph article.

It’s the September reset and I’m back with a little post summer update and asking what you want to hear on the podcast moving forward. Get in touch via Instagram @thesendmumclub

Amy Draper is my guest this week talking about her 18 month old son Donnie. Amy was told at 13 weeks pregnant there was a high chance her baby had Down syndrome but when he was born it was clear it was something else. After waiting a year for full genetics results Donnie was diagnosed with the very rare Aarskog-Scott syndrome. We talk about how it felt to be expecting one diagnosis only to receive a different one, the lack of support and information when dealing with such a rare syndrome, and why Amy feels in limbo without a clear medical plan to move forwards with.
 
The charity Amy mentions in this episode is here:
www.aarskogsyndromefoundation.co.uk

 
Trigger warning: we discuss baby loss in the episode so please listen with care

Greer Jones joins me to chat about her eldest child who is 7 and has autism & ADHD (Greer chooses not to share his name publicly). We talk about her difficult route to diagnosis and how professionals made her feel like her son’s behaviour was down to her failing as a parent, leading to thoughts of suicide. We discuss how him being diagnosed with ADHD led to her own diagnosis and the huge gap between the average age males and females are when they get diagnosed – this stat blew my mind. Greer also talks a lot about overwhelm and the strategies she’s put in place to manage it.
 You can find Greer on socials @theunfinishedidea