Resources for the parents of newly diagnosed children
Inhale. Exhale.
We know you are in shock. Your feelings are allowed here, the anger, the dark thoughts. The guilt.
You are not alone - we have been here too. To help, we have curated a list of resources that we all wish we had in those early days.
The Books you need now
Special: Antidotes to the Obsessions That Come With Your Child's Disability by Melanie Dimittt
Inspired by journalist Melanie Dimmitt’s own crash landing into disability parenthood, and shaped by her conversations with parents of children with wide-ranging disabilities, Special shares real stories, expert guidance and simple coping strategies to soothe anyone whose life has taken an unexpected turn.
We're Going to Have Fun, Dammit: Transparent Tales of Thriving & Struggling in the Extreme Circumstances of Special Needs Parenting by Mary Susan Mcconnell
Mary Susan McConnell (host of The Mama Bear Podcast) discusses her personal successes and struggles as the mother to a daughter with profound special needs.
Raising a Rare Girl by Heather Lanier
Bloom: finding beauty in the unexpected by Kellie Hampton
Tender: The imperfect art of caring by Penny Wincer
Day by Day: Emotional wellbeing in parents of disabled children by Joanna Griffin
The podcasts you need now
Too Peas in a Podcast by Mandy Hose and Kate Jones.
The Mama Bear Podcast by Mary Susan Mcconnell
NDIS know-how by Melanie Dimitt,
Once Upon A Gene Podcast by Effie Parks
The Rare Life podcast by Madeline Cheney
Advocate like a mother podcast
The blog post you need to read now
The Inchstones Blog by Kelly Cervantes
The MTM - stories of children with life-limiting disorders and loss
The stuff you don’t dare ask yet or even think about yet.
Whether you need this now or file it away for another time. Below are some resources that detail what it is like to care for a child who is dying or may die and seeks to answer some of the taboo questions that go through a parents mind. By parents who have walked this journey.
Life Loss and Love
A podcast for families caring for a child who is dying
This podcast series focuses on the experience of parents of children who have died or are likely to have a short life. Despite advances in health care, children and young people still sadly die from a range of life limiting conditions. The parents in this series have been supported by palliative care teams to face multiple challenges in caring for their children. These parents bravely share the love and beauty of their children and the joy and sadness of their individual experiences. They hope their voices can support, inform, and better prepare other families who may need to face similar challenges.
Caring for an infant with a life limiting or terminal diagnosis
An educational series created by parents for parents
The modules developed by Tara, Melissa, Priyanka and Rachael and Jonny include videos, podcasts, reflective journals and videos developed generously by several health professionals.
We hope that by sharing with you our children’s stories, our coping strategies, what’s helpful, ways to bond with your baby and make memories, answering some of those questions and hard thoughts that you might find some strength, some light, some hope and less fear of what paediatric palliative care looks like for your family.
Programs to enquire about now
The NAPA Program - delivering diverse and innovative therapies, for many families NAPA delivers incredible results, with a big waiting list. It sounds like something to think about for the future but the waiting lists mean it is something to enquire about now.