Tag Archives: Adolescent Program

Youth Advisory Group Q&A

The Youth Advisory Group (YAG) is a new initiative, set to give very special siblings between the ages of 14 to 25 a platform to be heard. We spoke with Very Special Kids’ sibling, Jude about the new program and what it means to him to have the chance to join the conversation. 

In what way has having a sibling with a life-limiting condition changed your life?  

When some people go to the hospital or maybe the emergency room, it feels slightly stressful, or it feels very cramped. The smell of hand sanitiser might be a new thing to most people in 2020 and 2021 because of COVID-19, but for me, it’s just the smells of my childhood.   

Since I was 13, when my brother Joel passed away, I’ve learned a lot about myself. I learned a lot about life in general. It can sometimes be difficult to separate what has changed my life because of my brother, and what I have learnt from just growing up. 

What does it mean to you to be part of the Very Special Kids community? Has it helped to connect with other Very Special Kids’ siblings? 

I count Very Special Kids as a second family. Not just because of the support, but because of the genuine friendships that I’ve developed with volunteers and the other siblings who understand what I’m going through. The conversations I’ve been able to have and the relationships I’ve been able to build with different people has been amazing.  

A lot of people don’t understand that even when I’m smiling and I’m genuinely having a good time with them, there’s always a bit of sadness. Kind of just lingering there. But Very Special Kids is one of those places where I feel like I can truly be happy and be myself, having a great time, there is just a different type of understanding. 

Why do you think it’s important for young people to have a say? 

In this decade, young people are a bit more vocal and want to get involved. As the youth who are being supported by Very Special Kids, we can talk to other youth members, and understand what they want out of each program. Let’s say, I’ve gone to a camp, I’m able to see what the other youth members are experiencing and can take that experience back to the group. It really can allow events to be tailored to better fit the needs of different youth. Which is really awesome. 

Every sibling has a unique perspective and experience, why do you believe diversity is important in decision making? 

It is important to have diversity, especially in age, but also in experiences.  Each person is so different, and those different voices are going to make the experience much more inclusive to everyone. 

What excites you most about joining the Youth Advisory Group? 

It couldn’t be a better cause, or a better group to volunteer with than Very Special Kids, because it’s so close to my heart. Personally, Very Special Kids has impacted my life so much, so to give back in this way and be able to have the privilege of having a say means a lot to me. 

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YAG meetings will be held bi-monthly and can be attended by siblings from across Victoria. We want you to lead us and advocate for what is important to you, so we can work to make it happen. 

Youth Advisory Group_checklistV2

If you ticked YES to all these boxes than take the next steps and apply to make a change! Please complete the expression of interest form here by Friday 18 February and we will be in contact soon. 

If you have any further questions about the Youth Advisory Group, please contact Jess at jbirnbaum@vsk.org.au or Damienne at dmor@vsk.org.au. 

Photo of Maryjo smiling at the camera.

Youth Advisory Group is now recruiting

Let your voice be heard – Youth Advisory Group now recruiting!

At Very Special Kids, we are always inspired by the strength and resilience of the children and young people we meet. If your life has been touched in unique and special ways by having a brother or sister with a life-limiting illness, we want you to join the conversation and have an impact on the way we deliver our services. 

The Youth Advisory Group (YAG) is a new initiative, set to give very special siblings between the ages of 14 to 25 a platform to be heard. Very Special Kids’ sibling, Maryjo shares her excitement for the new program.  

“It’s important for young people to just feel heard. So many kids want to be given responsibility and have a chance to make a difference. Especially when it impacts them.” 

Photo of Maryjo smiling at the camera while holding a dog.

YAG members will have input into the services we offer young people. They will have input into new programs and provide feedback on what is important to them and their families.  

Maryjo shares, “I’ve been involved in member run organisations’ before, and it makes such a big difference. By allowing young people to be heard, you create a program they want.  

“It’s not like working on a project at school. You are working with a team to create something real. Rather than just schoolwork. You are helping actual people.” 

The YAG offers young people a great platform to develop leadership skills and connect with other like-minded young people to exchange ideas, mentor others and understand the complexities of having a sibling with a life-limiting condition.  

“You gain so much from the experience of meeting someone, who understands what you have been through on a more personal level.” says Maryjo. “Everyone’s going through something different – they learn differently, cope differently. By hearing from siblings who are all different ages and have different lived experiences you can gain so much insight.” 

YAG meetings will be held bi-monthly and can be attended by siblings from across Victoria. We want you to lead us and advocate for what is important to you, so we can work to make it happen. 

Maryjo shares, “I’m excited to join the Youth Advisory Group to help other young people who have experienced or are going through what I have been through. If you have ever felt like something is missing, or something needs to be added. Remember, you can be the voice to get that done.”

Youth Advisory Group_checklistV2

If you ticked YES to all these boxes than take the next steps and apply to make a change! Please complete the expression of interest form here by Friday 18 February and we will be in contact soon.
If you have any further questions about the Youth Advisory Group, please contact Jess on jbirnbaum@vsk.org.au or Damienne on dmor@vsk.org.au.

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.