Monthly Archives: April 2019

Supporting a Carer

By Damienne Mor, Family Support Practitioner at Very Special Kids

 “I don’t want to ask – I feel guilty that I’ll never be able to repay the favour,” is a comment I often hear from carers who are tirelessly and selflessly looking after their sick child whilst often juggling work and other siblings. But a carers’ wellbeing is vital to being able to provide that care and support.

So if they don’t ask, what can you do to help?

  • Avoid statements like “if you need anything, just ask”. Instead make a clear offer of help and be specific about what you can do, when and for how long.
  • Relieve some of the everyday chores associated with running a household – deliver lunch box snacks for the week, or a fruit box; cook an evening meal, fold the washing or clean the shower
  • Help set-up technologies like Gather My Crew and iCare4U that can match you and friends in your circle to regular, useful tasks
  • Spend time with the carer in their home doing something that offers them some light relief – bring around a comedy, a cake or a good coffee and debrief the latest reality tv show
  • Help with the siblings – drive them to their sporting commitments or take them out to a movie
  • Organise some pampering in their home – a massage, haircut, or DIY day spa
  • Arrange to babysit, even for 20 minutes to allow your friend to get some exercise or grab a drink
  • If you are a Manager of a carer, consider creating a Heads Up Healthy Workplace action plan that supports your employee(s) by creating a more flexible workplace
  • Most importantly just be there. Hang out, listen, be patient and don’t ever give up.




Very Special Kids hires a Child Life Therapist – Shari Manley

In early 2019 the Very Special Kids hospice team welcomed their first Child Life Therapist, Shari Manley into the fold.

Child Life Therapists (CLT) are responsible for supporting a child to ensure their voice is heard and their needs are met within the healthcare environment. These specialised practitioners work to actively alter the setting and the people around the child so that the child is actively involved in their own decision making.

Shari had a background in speech therapy before she first discovered CLT at the Royal Children’s Hospital.

“I came to understand that there is no other job like CLT and that it allowed me to explore and enhance many aspects of my character including my interest in advocating for children, educating others, creating new programs, listening to children, responding to their wishes and supporting children to navigate their healthcare journeys with confidence and success” said Shari.

Shari has been working closely with the existing hospice staff to create an integrated approach to care.

“My first impression was of the Nurses and Carers and the pure love, care and kindness shown to the children. The children are not referred to as patients and there is so much room for children to be themselves” she said.

“I share most of my days with Belinda (Physiotherapist) and she has been a huge help in assisting me to adjust to the environment. It’s so great to work with someone who is willing to collaborate as this has great outcomes professionally and for the children”

Shari was drawn to Very Special Kids because of the opportunity to build a new CLT program from scratch. She is providing her expertise to create a CLT program that works specifically for the hospice environment.

“I thrive in environments where creativity is encouraged and ideas are nurtured and I knew that was possible here” she said.

The power of hope

By Angela Flood, Family Support Practitioner at Very Special Kids

Have you ever stopped and imagined what it might be like for a parent to hear the words ‘your child is going to die’. Have you wondered what those earth shattering, heart breaking, incomprehensible words might do to them physically, emotionally, mentally? I have not experienced this, but in over 12 years of working as a Family Support Practitioner at a children’s hospice I have encountered dozens of parents who have heard those words and been forced to witness them come to life and watch as their child has succumbed to their illness.

Working with so many families facing this difficult journey has taught me a lot about the importance and the power of hope.

Hope in the context of those six words ‘your child is going to die’. Where is the hope in that I hear you wonder?

We often here the phrases ‘there is no hope’, or that the situation is ‘hopeless’. These phrases only lead to a sense of defeat, failure and for some guilt, that they have been unable to save their child.

But hope is in fact everywhere…

  • Hope that miracles happen and that maybe their child may be the next recipient of a miracle. That the latest trial, research or medical discovery will save their child.
  • Hope that the doctors have it all wrong – the diagnosis, the prognosis, the doom and gloom – they must be wrong right?
  • Hope that whatever time they might have left with their child is full of wishes and dreams that come true – squeezing meaningful moments of life into whatever time they have been estimated or promised to have.
  • Hope that they will have the support they need for them, their child and their other children as they face the unimaginable.
  • Hope that their child will not suffer in the dying process and their death will be a peaceful one.
  • Hope that their final goodbye is one that honours them in the way they deserve and in a way that brings some sense of comfort to those around them.
  • Hope that after the death of their child they will be able to survive, that the heartbreak whilst a forever heart break will not take them as well, hope that they will be able to go on.
  • Hope that others around them will understand that they are changed forever by the loss of their child, and that sometimes the pain will be as raw as it was the day those words were first spoken and the day they watched their child die.
  • Hope that their child will not be forgotten, that their name will be spoken and that the legacy they left behind will continue to influence those touched by their life and their existence.

As a Family Support Practitioner I believe, a significant part of the role we play at Very Special Kids is about helping families to find hope. This hope may change over the course of their journey, but ultimately hope is what allows them to get out of bed each day and face not only their child’s life and death battle, but their own battle of grief and loss.

By helping parents find hope in a sensitive and timely manner, we are not diminishing their pain or playing down the loss they are faced with, but we are empowering them to find their reason for going on. We are empowering them to still feel like they can make a difference to how their child’s remaining days may be. I have born witness to hope in various situations that remain encoded in both my head and my heart.

Jimmy Rees’ nephew’s future is unknown

Very Special Kids Ambassador Jimmy Rees has been dancing his way into our lounge rooms appearing on Network Ten’s Dancing With The Stars.

But there’s more to Jimmy’s story that viewers may not be aware of. Although learning a new dance every week can be challenging, Jimmy and his family have faced far greater challenges with his seven-year-old nephew Rye battling a life-threatening condition.

“Rye was the first nephew on both sides of our family. Everyone was overjoyed when he was born.”

But the birth didn’t go to plan and parents, Brooke and Rhys were told their little boy had suffered a stroke in utero.

“It was just heartbreaking to hear. I can’t imagine what they went through, it brings a tear to my eye. Rye had a real difficult start to life and it was tough for everyone.”

Six months after being born Rye was diagnosed with cerebral palsy and other health issues. Rye’s ability to speak was questioned and he began using Key Word Sign and a speech device.

“He was great with sign language and would name people by their features. Because I would be silly around him and pick my nose, every time he would see me he would tap his nose! We had a lot of fun together and I love making him smile.”

But over the last few years Rye has been regressing and losing skills he once had.

“The hardest thing was to see how well he was progressing and then the regression started. He stopped talking, he stopped using sign language, he lost interest in playing with toys and interacting the way he once did. It’s devastating.”

Rye also has an Intellectual Disability and cognitive impairment, and although there was a stage where it seemed as though he was on par with other kids his age, he has now regressed to the cognitive level of a newborn.

Rye’s day to day life is very different from other seven year old kids. He requires 24 hour care and assistance with all his personal and medical needs.

Despite the many tests conducted, Rye’s regression remains undiagnosed and his future is unknown.

Becoming a father himself, Jimmy recognises his perspective has certainly shifted.

“Watching Rye change so much has been really difficult, and the emotion has definitely heightened now having kids of my own. You wouldn’t wish that on any child or family.”

To help them cope with the challenges, Rye’s family turned to Very Special Kids for emotional support and respite at our children’s hospice. Rye comes to stay and is cared for by a team of nurses and carers, whilst his parents can have a much needed break.

“Very Special Kids plays such an important role in supporting their family and helping Brooke and Rhys cope with the challenges, as well as enhancing Rye’s life.”

When given the opportunity to select a charity partner for Dancing With The Stars, Jimmy said “Very Special Kids was a no brainer due to my personal connection. It’s an amazing charity and is close to my family and close to my heart.”

To support Jimmy and keep him in the Dancing With The Stars competition, you can vote online here.