43: Liz Day: Parenting a Medically Complex Child With a Very Rare Genetic Condition

51: Amy Draper: Waiting Over a Year For A Diagnosis of Aarskog-Scott Syndrome

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 [http://www.aarskogsyndromefoundation.co.uk]   Trigger warning: we discuss baby loss in the episode so please listen with care

50: Greer Jones: ADHD & Overwhelm

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

49: My Take on the YouTuber & His Wife Who Terminated Their Pregnancy After A Down Syndrome Diagnosis

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.

48: Sam Ofoegbu: Making the Decision to Home Educate

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.

47: Dora Garcia: The Travelholic SEN Mum

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