The SEND Mum Club

Kourtney Wakefield joins me in the episode to talk about her 1 year old son Saint who has brain damage leading to diagnoses of cystic PVL, cerebral palsy and infantile spasms. Kourtney discusses their 6 week stay in the NICU, feeling let down by professionals, how her mental health is so early in her journey and how her friendships changed after Saint was born. 

Kourtney has created a community for SEND mums to come together for support called Bloom Collective Sussex and you can find it on Instagram and TikTok @bloomcollectivesussex

 Tags: SEN parent, additional needs, SEND parenting, IVF 

Alex Price joins me on this episode to talk about what happened when her daughter Ayda drowned after eloping. Thankfully Ayda (who was 3 at the time) survived after being resuscitated and put into a coma but understandably Alex has been left with PTSD after the accident. She talks me through what happened that day and the lack of awareness around autistic elopement and what she’s doing to try and change that.

 As well as Ayda’s accident we talk about how all 3 of Alex’s children are neurodivergent and how that presents in very different ways. She also tells me about the impact medication has had on her 2 older children and their positive school experience - after a fight to get there.

 Alex is sharing her story and raising awareness on social media, search for Amazing Ayda on Instagram, TikTok & Facebook

 TW: You may find parts of the story of Ayda’s accident hard to hear to so please take care when listening

 Tags: autism, ADHD, additional needs, SEN parent, SEND parenting

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

I couldn’t not speak on this subject as it’s sparked conversations and judgements that have been extremely hurtful to the Down syndrome community. Not the choice the couple made, but they statement they released and the meaning behind it.

My friend Sam Ofoegbu is my guest this week, talking about her little boy Theo who’s 4. Theo has Down syndrome and needed heart surgery after he was born. He is also on the ASD pathway. We discuss parenting a child with additional needs without a partner, how Sam coped with Theo’s surgery, why she is making the decision to home educate and what she thinks that will look like for them.

Dora Garcia joins me on this episode to chat about her 9 year old son Matteo who has Autism and ADHD. We discuss Dora being in denial before the diagnosis and how she feels perceptions changed after it. We talk about the importance of taking pockets of time for yourself to recharge and making sure you prioritise what’s actually important rather than trying to do everything.

Dora discusses how she travels all over the world with Matteo as a single mum and what she’s put in place to make sure it goes as well as possible. 

 You can follow Dora on Instagram @thetravelholicmum