Monthly Archives: July 2023

Group of people watching a presentation about Very Special Kids' volunteer training program.

Volunteer training program Q&A

Volunteering has been the heart of Very Special Kids since 1985.

We endeavour to equip every volunteer with a confident understanding of Very Special Kids and the work we do to support children and young people with life-limiting conditions, and their families.

Brunette women smiling at camera with leaves in  background
Very Special Kids volunteer, Michelle

All newly recruited volunteers have the opportunity to scale up their training via our three-module program. We recently spoke with Very Special Kids volunteer, Michelle, to hear about her experience at our volunteer training day.

What motivated you to volunteer at Very Special Kids?

When I came across Very Special Kids and read about all the great work that they do, it seemed a perfect fit for me. It was also familiar to me as one of my neighbours had already been volunteering here for quite some time. I am really happy to have found Very Special Kids and can’t wait for my journey to begin!

Do you feel that the training program has been comprehensive and prepared you for your volunteer role?

Absolutely. Training consisted of three well thought out and delivered modules. The first two modules were conducted in-house on a Saturday, which was great because it allowed you to meet and work with the other volunteers in-person.

The training began with a broad overview of Very Special Kids and then took a deep dive into the different service delivery programs, including respite and therapeutic programs. I thought the training was excellent and I feel as prepared for volunteering as I possibly could be…I personally got a lot of insight and value out of all the guest speakers (staff, current and past volunteers, as well as Very Special Kids parents)…Thank you to all the trainers.

Was the volunteer training program what you expected?

The volunteer training program far exceeded my expectations. I have/do volunteer at other organisations where training consists of a 9 to 1pm Saturday training session, along with a manual and a ‘good luck’ as you walk out the door. Other training, I have completed has been entirely online with no manual to refer to. Very Special Kid’s training was informative and engaging and really sets the bar for other organisations.

Following the volunteer training, what area/s of volunteering at Very Special Kids interests you? What are you most excited for?

This is a hard question to answer because I feel like I want to volunteer in so many areas. To start with I have put up my hand to volunteer in the hospice and to balance that out to volunteer with the therapy dog (that’s my excuse anyway!) I am also very interested in the sibling programs, adolescent programs, family camps and days and the bereaved parent weekend. Longer term I may look into the home volunteer program. I am most excited just to get started!

There is quite a versatile range of volunteer roles at Very Special Kids. What does having flexibility in the ways you can support mean to you?

The range of different volunteer roles and the ability to move in and out of them or to perform multiple volunteer roles at times that fit into your life makes volunteering with Very Special Kids very easy and attractive. I have never come across this before. Most other organisations tell you when you can volunteer, not the other way around. Personally, I like the idea of being able to volunteer as much as my time permits.

Who would you recommend the Very Special Kids volunteer training program to and why?

Anyone with a genuine desire to help children and families in need. Young, old and everyone in between. There are so many different ways you can become involved and make a difference and they don’t all require a weekly commitment.

Very Special Kids will be holding a volunteer information session at 6.30pm on Thursday 24 August. To learn more click here.

A group of people are in an indoor pool, they are smiling at the camera.

Our very special hydrotherapy pool

When a child stays at the Sister Margaret Noone Hospice at Very Special Kids House they can have access to a selection of fun, engaging and therapeutic activities.

One of the most exciting additions  is our very special hydrotherapy pool!

While sessions in the water bring many benefits for symptom management, ultimately, time spent in the pool is all about making memories and having fun.

Aquatic physiotherapy can foster a sense of freedom; increase independence; reduce stiffness and tension; offer pain relief; strengthen muscles; improve fitness and social interaction. It can also have a calming effect for children with sensory processing disorders and reduce stress from overstimulation.

Throughout respite stays, children can use the new hydrotherapy pool in individualised aquatic physiotherapy sessions. The pool is 34 degrees and just over one metre deep and can be accessed via a hoist or water wheelchair friendly ramp.

Prior to use children will undergo a comprehensive assessment with our physiotherapist, Belinda, to determine their individual needs and goals for aquatic physiotherapy.

Our hospice team have received training from Life Saving Victoria to ensure they can provide the best quality of care to children and young people during their aquatic physiotherapy sessions.

We cannot wait for countless memories, milestones and heartwarming moments to be made in our very own hydrotherapy pool.

Image of a tattoo on the inside of a woman's arm, reading "I am his voice and he is my heart".

A sister’s reflection: “I am his voice and he is my heart.”

Written by very special sibling Chantelle.

Having a special needs sibling, is exactly as it says…special.

There’s no denying that it’s been hard, it’s been stressful and it’s been a battle over the years, but it is the most rewarding and precious path life could’ve given our family.

Bailey, my brother, is quadriplegic, non-verbal and fully wheelchair bound. He has faced battle after battle and come out on top every time. Many times we’ve sat by his side and said our goodbyes, yet every time he defies the odds. We were told he wouldn’t make it past two years old…. and he turned 18 on the 18 of March 2023. We celebrated the milestone he was never meant to make as a family.

He celebrated with his nearest and dearest and smiled all day. The strength and resilience he has shown never ceases to amaze me. He is the strongest and most beautiful soul.

Throughout Bailey’s childhood, Very Special Kids has been an enormous part of our lives and we have shared many smiles, many tears and many dark times with them.

They are one of the most dedicated and compassionate foundations we have ever been involved with and we always knew Bailey was safe and well in their care.

Special mention to our family support practitioner, Anna Phipps who was with us every step of the way. Anna. I wouldn’t be who I am today without your guidance and care over the years.

Having a special needs sibling teaches you many things in life, but most importantly for me it’s truly taught me the meaning of love. I love that boy with every part of me, he is my whole world. I didn’t think it was possible to love something as much as I love him. He takes pleasure in the simple things in life, holding hands, kisses, cuddles and just listening to you. His eyes are his words and emotions. I look into his eyes and see nothing but love.

I’ve been Bailey’s advocate for the most part of his life. Being his voice, being his defender and being his number one supporter. I came across a quote one day that I knew was the perfect way to describe mine and Bailey’s relationship: “I am his voice and he is my heart.”

It’s now tattooed on my forearm so every time I hold his hand he can see it and know sissy will always be his voice.

I’ve often been asked if I had three wishes, would I change Bailey… the answer is no, he is the biggest blessing and gift life could’ve ever given me. I wouldn’t change him for the world.

Darren's painting of the Rainbow Serpent. A snake is surrounded by bush flowers and hundreds of dots

A very special painting for Very Special Kids House

Darren took up painting around the time his first child, a baby girl named Macey, was born.

A proud Murri man from Charleville in southwest Queensland, Darren’s early schooldays and books on Dreamtime stories, combined with a move to Melbourne, where he connected with his cultural brothers and sisters, grew his interest in his Aboriginal culture and background.

Self-taught, his paintings would often feature many characters from Dreamtime stories; the Goanna, the Honey Ant, the Moth – “just stuff that affects me and brings my thoughts out onto the canvas,” Darren explains.

When Macey was 9, she became sick. Tests revealed she had medulloblastoma, a type of cancerous brain tumour found in children. Macey underwent a successful operation, then chemotherapy and radiation treatment, and was eventually given a clean bill of health.

Pictured: Macey

Unfortunately, within six months the cancer had not only returned, but had spread throughout her body. It was then her family knew they had to prepare for the end of her life.

“We thought we could do everything at home for Macey, for end of life, and it was way too much . . . We got to a point where we couldn’t do it anymore. We rang Very Special Kids up and you took us in with open arms and helped us amazingly at the time.”

Macey was admitted to the Very Special Kids hospice for end-of-life care, while her family stayed nearby at our family accommodation. It was during this time that Darren started working on a painting of the Rainbow Serpent: the creator of life.

Pictured: Darren’s Rainbow Serpent painting

Painted during one of the darkest periods a person can experience, Darren’s artwork focused on the light. It is full of blues, yellows, purples and reds. The serpent is surrounded by bush flowers – something Darren enjoyed painting thanks to his experience as a landscape gardener – and hundreds of equally sized dots, a common technique used by Aboriginal artists in the southern parts of Australia.

While Darren’s paintings may not follow one Aboriginal community’s set of rules, he feels there’s nothing wrong with artists learning from one another.

“It all comes down to what they feel and see that they want to put on a canvas. It’s art, it’s our art, it’s our Dreamtime. It’s what we like to share and see to give to people to enjoy.”

Macey sadly died in 2015 at the Very Special Kids hospice, one day after her 11th birthday. Shortly after, Darren finished his painting and decided to gift it to Very Special Kids.

“It was after Macey had passed away, I’d finished it off and it had to go to something special. It wasn’t meant to go to anyone else because it was done when Macey was going through the worst period of time for us. Being involved with Very Special Kids and the help and support – it was a good place to leave it.”

Since that day, this very special Rainbow Serpent painting has hung proudly at Very Special Kids, first in our hospice, then our temporary space at Monash Children’s Hospital.

We look forward to finding it a place of honour at our new hospice, the Sister Margaret Noone Hospice at Very Special Kids House, when it opens in the coming weeks.

Example of our Indigenous bedroom identifiers

Sneak peek at our new indigenous bedroom art

Like with any home, the children and young people who come for respite at our hospice enjoy calling dibs on their favourite bedroom.

There will be one more drawcard to consider when choosing a room at the soon-to-open Sister Margaret Noone Hospice at Very Special Kids House, with each bedroom assigned a unique indigenous illustration of an animal. Next to each animal will be its name in Woi wurrung.

Woi wurrung is the language of the Wurundjeri-willam people of the Kulin Nation, the Traditional Owners of the land on which Very Special Kids House resides.

Very Special Kids had the honour of working with Elder Aunty Gail from the Wurundjeri Woi Wurrung Cultural Heritage Aboriginal Corporation to choose the animals that would represent our eight bedrooms and end-of-life suite.

Little Rocket, a First Nations owned and operated agency with a strong relationship to country and community, then helped bring these animals to life with modern style illustrations that create a sense of energy and excitement.

Art holds immense significance in Aboriginal culture, serving as a powerful medium for storytelling, cultural preservation, and spiritual connection. The use of indigenous animals as symbols is particularly meaningful, with each animal embodying specific traits, stories and teachings, reflecting the relationship between humans and the natural world.

Balam balam, the Woi wurrung word for butterfly, was chosen for our end-of-life suite, as the butterfly’s journey from caterpillar to chrysalis to butterfly symbolises transformation, change and the cycle of life. In many Aboriginal communities, it is associated with the connection between the physical and spiritual realms.

In addition to the balam balam suite, the eight bedrooms will be named after the following animals:

  • Marram – Kangaroo
  • Walert – Possum
  • Warin – Wombat
  • Murrack – Grasshopper
  • Wadjil – Pelican
  • Gawarn – Echidna
  • Dulai Wurrung – Platypus
  • Gurrborra – Koala

We hope that as the children and young people who stay at Very Special Kids House become familiar with these names and stories, they will feel connected with the land and its rich cultural heritage.

Artist's impression of a sculpture of birds above a courtyard. View from below.

Bringing art to Very Special Kids House

Art can inspire children and young people to explore, imagine and expand their perception of reality. It is a tool that not only sparks joy, but also provides deep connection to culture.

Very Special Kids collaborated with renowned First Nations artist Reko Rennie to create a captivating sculpture for the hospice’s central courtyard – the heart of Very Special Kids House.

Inspired by Australian wildlife and his Kamilaroi heritage, the artwork will feature a flock of silhouetted native birds, suspended mid-migratory flight across the central courtyard. The birds gently move in the breeze casting playful shadows on the ground beneath.

Designed with people and interactivity in mind, the work seeks to invigorate the space, and will provide moments of tranquillity, inspiration, and joy for the children, staff and visitors to the space.

Rennie is best known for his use of bold geometry, lush colours and graphic depictions of Australian wildlife. He combines stylised Indigenous symbols with urban graffiti culture to create works which resituate First Nations narratives within an urban Australian context.

Above: Sculptured birds under construction (left and right) and an artist’s impression of the sculpture from above (centre).

Drawing on colour theory for the selection of colours used to pattern the birds’ wings, Rennie has selected green to promote healing and positivity, blue for trust and peace, pink for compassion and love, and yellow for happiness and optimism.

The eye-catching piece will be a focal point for children and young people during their stay, fostering moments of delight and discovery, in an accessible way.

We are thrilled to watch this piece come to life as we edge closer to the opening of the Sister Margaret Noone Hospice at Very Special Kids House.