The SEND Mum Club

This episode marks a year of The SEND Mum Club podcast. Thank you so much for listening!
Liz Day is my guest this week, talking about her 4 year old son Henry who has the CASK gene mutation, an extremely rare genetic condition that affects boys much more severely than girls. We discuss the bleak outcome they were told to expect in terms of life expectancy and how Henry has already proved the doctors wrong. Liz talks about going back to work and how she manages that alongside Henry’s needs. We discuss how hard it is to give over some of Henry’s care to carers and the difficulty in finding peer support when his condition is so rare in boys.
Liz mentions the Unique charity as a good resource if you’d like to learn more about Henry’s condition https://rarechromo.org/disorder-guides/

You can find Liz on Instagram @medical_mumma_kickingcask

Founder and CEO of Down Syndrome UK Nicola Enoch joins be this week for a special episode in the run up to World Down Syndrome Day on March 21st. We discuss Nicola’s journey as mum to Tom who is now 21 as well as her work with Positive About Down Syndrome and why it’s so important. Nicola is extremely honest about her feelings when Tom was born in this chat, as well as how she feels about their life now. We discuss what led Nicola to set up PADS and the challenges families are facing who access their resources.
TW: We discuss termination after diagnosis in this episode so listen with caution if you feel that may be triggering for you.
 You can find PADS here:
https://downsyndromeuk.co.uk/

It’s a special episode this week because I’ve got a couple on! Clare & Carl Graham join me to talk about their daughter Odette who has Down syndrome and cerebral palsy. We talk about the reality of how long acceptance can take, receiving a second diagnosis, comparison on social media and the impact all of that can have on your mental health.
Clare & Carl are both really open about how they’ve struggled mentally and what therapy looked like for both of them. 
Carl mentions men’s mental health charity Sean’s Place in this episode who do incredible work with men living in Liverpool and Sefton. You can find them here:
https://seansplace.org.uk/

You can find Carl on social media here:
Instagram: @carlinstagraham
TikTok: @carlgsendad

My guest this week is a special one because she’s one of my besties! Ani and I have been friends for nearly 22 years and she was one of my bridesmaids when she was pregnant with her daughter Melyn. After Melyn was born Ani and her partner found out she was deaf. In this episode we talk about the importance of allowing yourself to sit in the grief of a diagnosis, self preservation when researching a diagnosis, and the decision to go ahead with surgery for cochlear implants and what that now means for Melyn.
Ani is a (fabulous) musician and she also discusses how she’s making her music and performances more inclusive for the deaf community. You can find out all about Ani’s music - and buy some merch – here:
https://aniglass.bandcamp.com/music

Instagram: @ani_glass

Francesca Morgan joins me on this episode to talk about her 3 year old daughter Shania who has Down syndrome. We discuss her traumatic birth experience, followed by receiving Shania’s diagnosis in the wrong way, and feeling let down by multiple people involved in their care over the first couple of weeks.
After unsuccessfully looking for SEN baby groups Francesca decided to set up her own and we talk about what that’s gone on to become and how important it is to have that peer support from people who get it
Tags: additional needs, SEN parent, SEN support group