Tag Archives: Family Support Services – private activity

Mums come together in Albury-Wodonga

Caring for a child with a life-threatening condition can be isolating, and even more so when living in rural areas. The recent Albury-Wodonga mums group at Cafe Grove Wondonga brought parents together to connect with others along a similar journey.

The lunch, attended by six mums and a father and two siblings, centred around a therapeutic activity utilising St Luke’s photographic resource ‘Picture This’.

Parents reflected upon the significance of a particular photo or photos that were meaningful to them. They shared both their positive and challenging experiences, supporting each other throughout.

Very Special Kids parents groups are help several times a year in Albury-Wodonga, and in other rural centres across Victoria.


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.

My first Sibling Day

Eleven-year-old Shaine Body tells us about his first Sibling Day

My first sibling day was amazing! The theme was ‘My Headquarters’. When I got off the bus I wasn’t sure what to think of Very Special Kids. However my feeling of uncertainty went out the window as soon as I got first glance of the building. I felt very comfortable and when I arrived almost every adult there was saying hello to me.

After making a bag and door handle we went into another room. In that room we learnt about all the rules for the day and split up into our groups. The different groups were all based on different emotions and I was in group ‘Sad’.

The first activity we did was going to different islands. The first island my group went to was ‘Goof Ball Island’ where we made ‘spiders’ (lemonade with ice cream) then had a go at the ‘Big Splash’ ( like a dunking machine) where we had to throw a ball and hit a lever which would push a bucket of water on a very unlucky person!

Then we went to ‘Memory Island’ where we stood in a circle and threw a ball to each other, the person catching the ball would share a memory they had.

Then we to ‘Family Island’ where we talked about different experiences with different family members, then ‘Friendship Island’ where we wrote our friends names in a circle of who do we see the most, then who do we see less often etc. We got to play dress ups also!

Then we went to ‘Mystery Island’ where we got a sheet of paper that had questions and a tick box next to each question. We had to find the answer to each question in a treasure hunt then claimed the completed sheet for a prize!

Then we had pizza for lunch!

After lunch we did some therapeutic activities including making a little book of feelings and a memory ball where we wrote and / or drew a memory on a piece of paper and put it in a ball with decorations. Once we were done it was time to go!

Teens take on Mittagundi

18 teenagers, who have siblings with life-threatening conditions, escaped the city to Mittagundi Outdoor Education Centre for a week of challenges and fun. We caught up with Very Special Kids Family Support Worker Jess Birnbaum to find out how it went.

What happened on the camp?
So many activities! We began with hiking, camping and cross country skiing across a three day period up near Trapyard Gap in the Alpine National Park and at the Mittagundi farm we were wood chopping, gardening, cooking, log de-barking and fence stumping. The young people that attended also had the chance to share stories about their families and develop invaluable peer connections with one another.

What was the highlight?
The camp presented us with many challenges, we were faced with rain, snow, sleet and sunshine (sometimes all in one day)! Our feet and hands were cold, there was no electricity or flushing toilets and at times we felt like giving up. But we pushed through and the learning and self -discovery that came from this helped to foster a massive sense of achievement, togetherness, trust and respect. Many young people reported the highlight for them was skiing or seeing snow for the first time, but overwhelmingly, most people identified the support and encouragement they received from their peers and the connections made as the thing they loved most about the camp.

How was the camp made possible?
We worked in partnership with Mittagundi to try and obtain funding for the camp and it was through the generous donation and financial support from the Calvert Jones Foundation that the whole experience was made possible. It’s also worth thanking the families themselves for encouraging and supporting these young people to take a week out from their creature comforts to bravely come along and charter the unknown.

What benefits were there for those that attended?
Without a doubt one of the major benefits of the program was having the opportunity to spend a whole week away together, the very act of digging deep and banding together to support one another through the challenges we faced is what made this camp so rich and rewarding. Time spent connected to nature, without the distraction of technology or mobile phones allowed for deep discussion and exploration of the many complex layers of emotion felt by these extraordinary young people. Being pushed outside our comfort zones forced us to discover things about ourselves that helped us redefine our goals and foster a huge sense of accomplishment. The peer connections formed helped young people develop a greater sense of self and a sense of belonging.