Tag Archives: Very Special Kids Hospice

Meet our new Family Support Manager – Jessica Birnbaum

We are excited to announce that Jessica Birnbaum has been appointed as our new Family Support Manager at Very Special Kids. Jessica has been with Very Special Kids for a decade, mostly as a Practitioner and more recently as the Deputy Manager of the department. She has significant experience in counselling support and has been a key support during COVID-19, helping to ensure families, staff and other stakeholders were continually considered and supported.

We had a sit down with Jessica to learn more about her new role, her background and her advice to families considering Very Special Kids services.

Can you share an overview of your new position at Very Special Kids and how you support the family support team?

The Family Support Team Manager oversees the daily operations of the Family Support Team. This includes the development and delivery of therapeutic programs, regular engagement with families to ensure their needs are being met by the provision of high-quality service delivery and clinically supervising and supporting practitioners in their role working directly with families.

You have been with Very Special Kids for 10 years, what has your journey been like so far? What inspired you to work as a Family Support Practitioner?

My journey with Very Special Kids began back in 2006 when I was a disenfranchised, out-of-work actress, seeking new meaning and purpose in my life. I heard Sister Margaret Noone on the radio talking about the Very Special Kids volunteer program which I then went on to join and become a home volunteer for five years. This was such a beautifully rich experience, and I was so impressed by the organisation and their capacity to really make a difference in the lives of others that I completely changed career paths and went back to university to study Social Work. I went on to obtain a Masters in Family Therapy and work with homeless families and young people in a variety of roles before joining the Family Support Team as a professional in 2011. I still maintain a connection with the sibling I supported as a home volunteer, she was eight when we met, and she is now 24.

What is something that other health professionals might not know about Very Special Kids?

Very Special Kids stays involved with a family indefinitely after the death of a child. Grief doesn’t follow a lineal path – it is messy, wild and unpredictable in nature. By not placing timeframes around this, Very Special Kids is able to support families to do the work and tend to their grief as needed. We help them integrate the loss through counselling, therapeutic programs, rituals, meaning making and ongoing connection to a compassionate community with shared experiences.

How would you like to see Very Special Kids programs advance in 2022?

I am looking forward to strengthening the therapeutic component of the programs we offer. This is an exciting time to engage in evidence-based practice that meets the diverse needs of the families we support. We have several carefully crafted program proposals, currently in development, that will further complement our existing suite of programs. I am also thrilled about the launch of our Youth Advisory Group and continuing to increase capacity to include the voice, opinions and ideas of children and young people in new and meaningful ways.

What is one piece of advice you offer when a parent is feeling overwhelmed navigating their child’s condition?

Being overwhelmed is a completely normal and understandable response to navigating uncertainty. In addition, the systemic challenges faced by the families we support, can intensify the emotional load and serve to further disenfranchise. At Very Special Kids, we view the family themselves as experts in their own lives and it’s our job to help them mobilise existing resources as a mechanism for advocacy, change and growth. This is about offering choice at all stages of their support journey and recognising diversity as a strength.

What is your favourite thing about working at Very Special Kids?

The opportunity to continuously learn, grow and evolve, both professionally and personally.

Do you have any advice for families thinking about using Very Special Kids services?

It can be daunting and unsettling engaging with a paediatric palliative care service for the first time and developing new relationships with health professionals takes time. Very Special Kids is focused on meetings families where they’re at and providing them with the opportunity to live fully. We try to support the system as a whole and offer a range of services in a kind, compassionate, consultative way.

Fast and furious hospice weekend

Boys staying at Very Special Kids Hospice enjoyed a fun-fueled high-octane Mates Weekend with luxury cars and adventures across the city.

Dream Drives Melbourne shifted the weekend into gear taking the boys on hot laps around Very Special Kids’ grounds in exotic cars, including a Batmobile-inspired Lamborghini.

The boys then fueled-up at Grill’d Malvern before revving up to Village Cinemas Jam Factory for 007 action in the new Bond film.

Very Special Kids Mates Weekends are designed for teens who have high-cognition, but significant physical challenges, giving them a chance to have fun and connect with others in a similar situation. This weekend was made possible by the generous support of volunteers, Dream Drives Melbourne, Grill’d Malvern and Village Cinemas Jam Factory.

Dream Drives Melbourne are also holding a family fun day fundraiser on 13 December. Go along to get up close and personal with luxury cars and support Very Special Kids.

Under the sea at the hospice

Children staying at Very Special Kids Hospice were submerged in fun under the sea activities during the recent school holidays.

A visit from Roaming Reptiles saw the kids get up close and personal with some aquatic reptilian friends including frogs, turtles and crocodiles and the children embarked on a journey to the Melbourne Aquarium to see the incredible sea-life living there.

Art therapy took on a nautical theme, with hand-prints and footprints transformed into sea creature canvases and sand and shell jars created. A fitting gift for mum and dad at home.

The children also got creative in the kitchen making crab cookies and a jellyfish tank with blue jelly and fish lollies.

The Under the Sea school holiday program was made possible through the generous support of volunteers, The Art Cabriolet, Roaming Reptiles, SEA LIFE Melbourne Aquarium and Coach Buses.

: Meeting a crocodile

: Creating a sea creature canvas

: Making an edible jellyfish tank

: Sand and shell jar to take home

: Fun with the penguins

Meet the Scott family

The Scott family is the face of this year’s Piggy Bank Appeal and they represent more than 900 families across Victoria who are supported by Very Special Kids. Mum Robyn Scott shares their story.

I still remember that first day Kyan was finally discharged from hospital after eight long weeks. As I put him in the car, he started having another seizure.

I just remember thinking “Why is the hospital sending us home? He’s not fixed”. He wasn’t the same child I arrived in emergency with. He no longer smiled, or rolled or even recognised me. It was heartbreaking and I felt so alone and unsupported. It was such a shock; my life had taken such a turn.

Everyone has certain dreams of what they want to do in life. Whether that is to have a successful career, to travel, to have kids. When that dream comes true, you feel blessed and so unbelievably happy that you almost feel invincible.

To then have it all change in the blink of an eye is something that will stay with you forever.
My husband Matthew and I had just that. We had a beautiful baby boy Kyan. Our first born. Who we had created this bond with and we were loving every minute of it.

Little did we know that was all about to change.
Kyan was four months old when he had his first seizure.

We were on a family holiday on the Gold Coast. We had to take him to the hospital because we had no idea what was wrong with our little boy. He was in and out of hospital for months while doctors struggled to get his seizures under control.

We soon found out what was affecting him. I’ll never forget the look of horror on the nurses’ faces when they were looking at the screen at Kyan’s test results. Kyan had two brain abnormalities which had resulted in cerebral palsy and epilepsy.

We had lost our little boy. He no longer recognised us. We were scared. We had no idea what our little boy was going to be able to do. He was just like a newborn again.

Kyan is now nine years old. He’s not your typical nine year old. He’s in nappies. He needs us to feed him. He needs us to bath him. He needs us for everything. He can’t kick the footy with his dad. Or run around and play with his younger brother Hayden and twin sisters Maddison and Eloise. But he does give Matthew and I the best smiles and loving hugs. When Kyan is upset, his brother Hayden brings him his favourite toy, or his two twin sisters mother and nurture him.

These little things are what makes me so proud of my family.

After Kyan’s initial diagnosis, the thought of having another child was unimaginable. Kyan’s condition is genetic so we were worried that if we had another child they might have the same condition. We eventually decided we would have more children and I am so happy we did. As our family grew, one of the most positive things for me is that the kids don’t know Kyan any other way. To them, Kyan is their older brother, they accept him for who he is.

I love the people my children have become because of Kyan.

We are a lot stronger and a lot happier. Our strength is also thanks to Very Special Kids. They give us an extra layer of support that we wouldn’t have otherwise.

When Kyan stays at Very Special Kids Hospice it allows Matthew and I to have a break when we need it and spend quality time with our other children. It’s comforting to know we don’t have to worry about Kyan. We know that he is in good hands when he stays at the Hospice.

He loves it there. So do Hayden, Maddison and Eloise. They have even re-named the hospice to “The Piggy House”. It makes me so happy to see Kyan’s face light up when we take him to the Hospice. One of his favourite rooms is the Multi-Sensory room, which I now have to try to replicate in our house he loves it so much.

Kyan’s prognosis has a big question mark above it. We don’t know what his future holds. We can only hope for a happy and healthy life for him.

We have recently put in a vagal nerve stimulator which is helping with the severity of the seizures. It will never control them, but we hope it can get them to a level where they are not impacting his heart and his breathing. Sometimes his seizures are so bad that if he has them during the night I am too scared to go into his room in the morning. I wait outside his door to hear a noise from him to know he is ok.

Our concerns for Kyan as he gets older are his height and weight. As he grows, day-to-day activities such as bathing him, changing his nappy, getting him in and out of the car will become harder. We are currently in the process of building a wheelchair friendly home to suit Kyan’s needs. We will continue to care for Kyan in our home as long as we possibly can. Having Very Special Kids for support will definitely make it a whole lot easier.

Other families can turn to their family members for support. It’s just not as easy for us to do that with Kyan. It’s a big ask, and we don’t feel comfortable doing it. But we are lucky we have Very Special Kids. We know that they are always there for us when we need them. Having that extra support network is invaluable, and we are so grateful we have access to it.

Telling you my story has brought up mixed emotions for me. I forgot the pain that we felt when Kyan had his first seizure, when we found out about his condition, when we first realised we had lost the little boy that we had created a bond with.

It’s humbling to know there are people out there that support Very Special Kids. You might not know every family’s story but you now know mine. And there’s a place that looks after families like ours.

On behalf of all the Very Special Kids families, I thank you for supporting and believing in this amazing organisation.

Subzero and friends make a very special visit

The children at Very Special Kids Hospice received a very special visit from Melbourne Cup hero Subzero, to celebrate the 2015 Spring Racing Carnival Premierships and the team of trainers and jockeys that will be racing to raise money for Very Special Kids.

Subzero and handler Graham Salisbury got up close and personal with the children, with the gentle horse nuzzling into the children’s faces much to the delight of everyone there.

Trainers Wayne Hawkes and Lee Freedman and jockey Daniel Moor were also there to meet the children. The trio are part of the trainer and jockey team supporting Very Special Kids this Spring Racing Carnival. Others include jockeys Tommy Berry, Brenton Avdulla and James Winks and trainers James Cummings, Joe Pride, John O’Shea and John Sargent.

While competing for group titles and prize money at the 12 premier racedays, the jockeys and trainers will also be competing to win donations for Very Special Kids, with a pool of $80,000 up for grabs.

A much-needed break for the Macfarlaine’s

15-year-old Alexander Macfarlaine from Mt Eliza loves the sunshine, walks around the peninsula and school. He also loves his family, parents Helen and Kevin and sister Evalouise (8).

Alexander was diagnosed with cerebral palsy, epilepsy and an intellectual disability before his first birthday.

“There is no cure for his condition so it’s a life-long responsibility to care for his every need,” says Helen.

Helen and Kevin approach caring for his complex needs as a team effort, but know it’s important for them to take a break and do some of the things other families would take for granted.

“Going to work, the gym, on holiday or socialising with friends and family, helps us engage with the normal world and have a break from caring,” says Helen.

Alexander’s visits to Very Special Kids Hospice have enabled his family to take much needed holidays.

“Having holidays away from Alexander allows us to have a good rest, confident he is well looked after,” says Helen.

“We have come back from holidays rested, refreshed and re-energised, helping us to continue to look after him.”

Helen and Kevin are grateful for the invaluable support Very Special Kids provides not only to their family, but to other families caring for children with needs like Alexander’s.

“We hope Very Special Kids is always able to provide its services to families caring for children with high needs,” says Helen.

Very Special Kids supports 223 families in the Southern region of Melbourne, and 900 across Victoria, that are caring for children with life-threatening conditions, by providing 24-hour nursing care at Very Special Kids Hospice and family support services.

A Family Support Worker in Hastings provides emotional and practical support and organises group therapy programs for families in Mornington and Southern parts of Melbourne.

It costs $7 million per year to operate Very Special Kids, with all services free-of-charge to families. Please help us continue to support children like Alexander, and their families, by donating to the Very Special Kids Piggy Bank Appeal.

Showbags galore at Very Special Kids

Excitement filled Very Special Kids Hospice today as children and families supported by Very Special Kids were the first in Victoria to preview this year’s Royal Melbourne Show showbags.

Children, who had travelled with their families from across Victoria for the occasion, were thrilled as the showbags were unveiled including Minions Movie, Littlest Pet Shop, Guardians of the Galaxy, Jurassic World, Freddo Family Deal, Peppa Pig and Frozen showbags.

Alice Zaslavski from kids’ cooking show Kitchen Whiz was there to launch the event and Minister for Consumer Affairs, the Honourable Jane Garrett, joined the children to provide all the showbag contents the official seal of approval.

Royal Agricultural Society of Victoria (RASV) CEO Mark O’Sullivan said the showbag launch is a key event in the lead up to the Royal Melbourne Show and RASV looks forward to welcoming around 500,000 people who are expected to come through the gates from 19 to 29 September.

“Showbags are synonymous with the Royal Melbourne Show experience and the announcement of what’s on offer is eagerly anticipated each year. The 2015 showbag line-up caters to all ages and interests, from gourmet treats to novelty films and toys and includes a wide-range of new showbags as well as the crowd favourites.

“It was a pleasure to provide Very Special Kids the opportunity to see the showbags before everyone else. We loved seeing the delighted faces of the children with their families,” said Mr O’Sullivan.

View the fun in the gallery below:

Providing a network of support for the Ferguson family

Fourteen-year-old Michelle Ferguson* has hydranencephaly, a rare condition in which most of the cerebral hemispheres are absent and replaced with fluid. This has left Michelle profoundly disabled and her future is uncertain. She requires one-on-one care and assistance 24 hours a day.

Michelle has been in permanent care with Sandra and Graeme Ferguson since she was 10-months-old. Sandra and Graeme also have three adult children and seven grandchildren that love spending time with Michelle.

Sandra says that Very Special Kids Hospice enables them to take much-needed breaks.

“At first I thought we wouldn’t need it and I didn’t want Michelle going anywhere without me. But now I know they look after her beautifully at the hospice,” she says.

The family have also attended Very Special Kids family camps at Lord Somers and local activities that provide them with the opportunity to meet other parents and share information and experiences.

“It’s really good for us to socialise with other parents who are in the same boat. We don’t have to explain anything to anyone,” Sandra says.

A Very Special Kids Family Support Worker in Ballarat provides support to 35 families in the Grampians region including counselling and advocacy, and coordinating local programs and events that provide families the opportunity to meet each other and share information and experiences.

Very Special Kids supports 35 families in the Grampians, and 900 across Victoria, that are caring for children with life-threatening conditions, by providing 24-hour nursing care at Very Special Kids Hospice and family support services.

A Family Support Worker in Ballarat provides support to families in the Grampians region including counselling and advocacy, and coordinating local programs and events that provide families the opportunity to meet each other and share information and experiences.

It costs $7 million per year to operate Very Special Kids, with all services free-of-charge to families. Please help us continue to support children like Michelle, and their families, by donating to the Very Special Kids Piggy Bank Appeal.

The Piggy Bank Appeal will be coming to the Grampians:

Thursday, 10 September 2015, Commonwealth Bank Stawell, 10am to 1pm
Thursday, 10 September 2015, Commonwealth Bank Ararat, 1.30pm to 4pm
Thursday, 10 September 2015, Red Lion Hotel Golden Point, 6pm to 8pm
Thursday, 24 September 2015, Commonwealth Bank Daylesford, 10am to 2pm
Saturday, 26 September 2015, Bridge Mall Ballarat, 10am to 3pm
Saturday, 26 September 2015, Blue Bell Hotel, Wendouree 5pm to 8pm

*Name has been changed for privacy

Masterchef madness at hospice

Ready, set, cook! The hospice was full of the delicious smells of a cooking challenge with a surprise visit from ex-Masterchef contestants for the Girls Mates Weekend.

Sam Gant, contestant in Masterchef 2014 and owner of catering company Pot & Pan, and Julia Taylor, contestant in the 2012 season and pastry chef, worked with the girls to prepare a mouth-watering pasta dish made from fresh produce from the Melbourne Fruit and Vegetable Market. Dough was prepared, pasta rolled out, and delicious parcels of pumpkin, apple and nutmeg tortellini created. The pasta was served with a burnt butter and sage sauce and plated up with flair for everyone to enjoy.

The mini Masterchef challenge was made possible by the Melbourne Fruit and Vegetable Market and Fresh State, which also arranged for the girls to relax in style after all their hard work with gold class movie tickets.

Beyond supporting the Girls Mates Weekend the Melbourne Fruit and Vegetable Market and Fresh State will be fundraising for Very Special Kids through their Market on the Move initiative.

Catch all the Masterchef madness in the gallery below.

Bounce and boogie at Mates weekend

It was a whirlwind of bouncing, dancing and painting at the Very Special Kids Hospice Mates on the Move weekend.

The children kicked off the weekend with a messy art therapy session with the hospice Art Cabriolet therapist. The evening quickly ramped up to a dance party with a visit from DJ Captain America (Andrew Medland).

Sunday morning saw the kids enjoying a group grocery shop and picnic, and reaching for the sky at BOUNCE INC.

After an exhausting two days of activities, the weekend finished with the children creating artwork to take home to their mums.

Mates on the Move brings together children who are very mobile and have high behavioural needs requiring one-to-one care. The program enables these children to experience activities they normally would not be able to participate in.