Meet Youth Advisory Group member Jude

Image of a young man's face, he is wearing a baseball cap and looking up, as if he is thinking.

The Youth Advisory Group (YAG) is an initiative that provides very special siblings between the ages of 14 to 25 a platform to be heard. The group is made up of nine enthusiastic, motivated, and inspiring young adult and adolescent siblings eager to express their thoughts and ideas in bold, creative ways.   

YAG member Jude, recently spoke at the Australian Paediatric Palliative Care Conference (APPCC) to teach healthcare professionals about the importance of the Youth Advisory Group. His speech is shared below.  

Could you give me your name, age, and current level of education? 
My name is Jude, I am 18-year-old, and I am currently doing my VCE studies. 

What is a fun fact about yourself?
I can juggle five balls at a time. 

If you feel safe doing so, could you share a bit about your sibling and their story? 
My late brother Joel, had multiple and complex special needs, but that never stopped Joel from smiling practically on the daily. 

What are you enjoying most so far about belonging to the YAG? 
A highlight of being involved with Very Special Kids was actually being given a voice in the organisation itself through the Youth Advisory Group. 

Jude’s speech at the APPCC

The two most significant things that were added to my life by joining the YAG were meaning and connection. 

Here’s what that looked like for me. 

When I first joined the YAG I was at the peak of depression. 

My life lacked drive and motivation, my school and personal life had each declined, and I no longer did things which I loved or simply liked.  

I was at an all time low. 

There were a number of things which pulled me out of the rut which I was in but today I’ll focus on the part that Very Special Kids and specifically the YAG played. 

Very Special Kids has always been a second family to me, somewhere that I’ve felt an understanding that even my closest friends couldn’t give me; understanding that sees right through smiles and laughter; an understanding that sees through tears; an understanding that can see me, a human who is walking this beautiful and painful journey of life with his unique circumstances. 

Very Special Kids is an organisation where I could be my entire, authentic self because if I was ok then I could be ok and if I wasn’t ok then I could be not ok. People weren’t scared of that contrast. 

When you give someone a say in an organisation that means very much to them, especially as much Very Special Kids means to me; when you tell them that what they have to say is important; when you have regular meetings dedicated to having discussions about what they’re thoughts, cares, concerns, and suggestions are regarding that organisation; you add meaning to their life. 

When you do all of that for someone who feels like they have no meaning left in their life like I did, you can help them feel like their existence actually matters again. 

Connection is the second most significant thing which was given to me through being part of the YAG, specifically with my late brother Joel or maybe a better description being the reason that I’m a part of Very Special Kids at all.  

I write a lot. I write about most of my thoughts and feelings, even the hard ones, but you won’t find much of any writing that I’ve done about my brother. It’s been about five years now since Joel passed away and particularly over the last two years, I’ve wondered why I couldn’t write about him or how I felt about him not being around. 

I’ve always struggled to feel connected with my brother even when he was alive. This might have been due to his complex medical conditions, maybe because he couldn’t verbally communicate, maybe because I didn’t start to realise the impact that he had on my life up until only months ago and I’m still figuring that one out. When I did realise that impact and the connection I had with my older brother, I felt both closer than I had ever been with him, as well as more distant and longing for him to be around again. 

Joel changed the way my family lived. So now, in his passing, I ask myself what better way to stay connected to him than to continue to live a life changed. My brother gave me the privileged ability to be part of a different portion of our world, the special needs, medical world, and the world that supports people and families of people in the same or similar situation to the one my brother was in. To be able to participate in and have a say in that world which supports people who are in a similar situation to me is one of the most comforting things I could ever experience because it not only keeps me connected with my brother by being a constant reminder that if it weren’t for him, I literally wouldn’t be here. But it also allows me to help other people who are in my or similar situations. It gives me the ability to stay active in the world that my brother allowed me to live in. That’s how the YAG keeps me connected to Joel. 

Those are some of the things that the YAG did for me which I am eternally grateful for.