The SEND Mum Club

In this week’s episode I’m joined by Lucy Dossor to talk about her son Daniel who’s 20 and has Down syndrome. We discuss how she coped with Dan having to have heart surgery as a baby and the aftermath of that, Daniel’s dynamic with his siblings growing up and what his friendships have looked like. We also talk about the transition from child to young adult and the challenges that brings, including the lack of information for navigating post school life, and Lucy’s plans for where Dan will live.

Kate Anderson is my guest this week, talking about her daughter Florence who has Aicardi Syndrome. Kate talks about exactly what that means and what a typical day looks like caring for a medically complex child. We talk about the toll of frequent, long hospital stays due to repeated chest infections and the importance of accepting help from people. Kate is also really honest about her desire to have another child to experience the typical version of motherhood. Kate is keen to raise awareness of North East based charities that have helped her family. You can find them all here and what Kate has used them for: https://northeastsightmattersltd.co.uk/ for day trips https://www.stoswaldsuk.org/ for respite https://thecharlieandcarterfoundation.co.uk/ for financial support https://www.thesunshinefund.org/ for specialist equipment https://www.rainbowtrust.org.uk/about/where-we-support/north-east-team for respite https://www.sickchildrenstrust.org/ for accommodation while Florence was is in hospital https://macs.org.uk/ for emotional support and meet ups https://www.sense.org.uk/ for monthly visits and trips https://www.elifarfoundation.org.uk/ for a specialised car seat https://www.thedaisygarland.org.uk/ for sats monitor and epilepsy support https://www.rnib.org.uk/ for support for Kate & George from a family worker

In this episode I’m joined by SJ Philips to talk about her children Oliver and Emelia who both have autism that presents in very different ways. SJ talks about her extremely traumatic birth with Ollie, taking her local authority to court to get him a school place and exactly what that looked like, all while being extremely unwell herself. We discuss the impact that had on her relationship and how she co-parents effectively with her ex partner. SJ also talks about what she’s putting in place for Ollie and other SEND families for the future.  You can find SJ on Instagram @spoonsandspectrums Tags: Global development delay, ADHD, EHCP

In this episode I’m joined by Kelly Hughes to chat about her daughter, 8 year old Gracie who has Down syndrome, autism, ADHD and PDA. We talk about the battle to find the right school for Gracie and the importance of having the right professionals involved in her care. We also discuss school refusal and Kelly opens up about a traumatic conversation she had with a doctor soon after Gracie’s birth.  Kelly has set up the Merseyside SEND Support Network to help other parents with all of the challenges involved in raising a chid with additional needs and you can find out more about it here: https://www.merseyside-send-support-network.co.uk/ You can find them on Instagram here: @merseysidesendsupportnetwork

I’m chatting to a SEND Dad this week, my friend and radio colleague Adam Weighell. Adam talks about the life changing impact of his son Toby being born at 26 weeks. We discuss life in the NICU, the moment he and his wife Gemma finally got to take Toby home after 142 days in hospital, and the fact they were aware Toby’s chance of being neurodiverse would be slightly higher due to how early he was born and some medical complications that followed. Adam talks about the differences in parenting a neurodiverse child alongside a neurotypical one and the need for connection with other parents who are in a similar situation.  Adam has written a book about Toby’s start to life called Dear Toby – which he describes as a love letter to his son – designed to help other parents navigate the NICU and life with a premature baby. You can order the book here: https://www.amazon.co.uk/Dear-Toby-Diary-Preemie-Parent/dp/1036916359   Tags: world prematurity day, autism, ADHD, sensory processing disorder