32: Kate Anderson: A Very Rare Diagnosis of Aicardi Syndrome
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
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31: SJ Phillips: The Legal Fight for a School Place, A Relationship Breakdown & What The Future Will Look Like
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
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30: Kelly Hughes: The Importance of Supporting Each Other In The SEND Community
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
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29: Adam Weighell: Multiple Diagnoses After An Extremely Premature Birth
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
This is the first of a slightly different type of episode (which will be occasionally dropped in amongst the usual ones) where I speak to experts in different fields that you may find helpful. This episode is all about therapy. I’m joined by Naomi Bateren who is a psychotherapist to talk though the different types of therapy and how to access them – both through the NHS and privately - how to pick which type of therapy will work best for you, and how to get the most out of your sessions. There is also a listener Q&A made up of questions sent in through Instagram, and Naomi gives her advice for anyone struggling with any aspect of SEND parenting.
Naomi asked to clarify some of the differences between different professions here in the show notes…
Clinical psychologists are trained to doctoral level and use more therapy models. They tend to work with more complexity (multiple goals, drawing more links, slower pace).
Counselling is a space to be heard and validated and is less directive.
CBT therapy is a specific training and is used for a faster paced single direction/focus.
Psychotherapy is similar to clinical psychology. There can be different levels of training, many to masters level.
The websites Naomi mentions to find a therapist are here:
https://www.psychologytoday.com/gb/counselling
https://www.bacp.co.uk/
You can find Naomi on Instagram @naomibaterentherapy
The SEND Mum Club is a parenting podcast with a difference. Made specifically for parents with children with all kinds of additional needs and/or disabilities. It's a place to share the joys and challenges of raising children with extra needs, with raw, honest conversations, designed to make you feel seen and heard on a journey none of us expected to be on.