Category: Camp Stories

Kate – Founder of Heads Together

It started with the sudden loss of my Dad and the lightbulb that switched on when I realised that the people who I felt most comfortable with were the families I was working as a kids physio at Vic Rehab, who had also experienced loss and trauma and who just “got it” they knew what to say and how to be.

It made me think why aren’t we bringing these families together, they are the very best people to be supporting each other, through this experience of ABI that no one else can possibly understand

Then I started getting other heads together, I shared my idea with other passionate people and I found Cath Bucolo who had been busy building a network for young people with an ABI. Our ideas connected and we brought together some families who we were working with and Heads Together Camp was born.

From the start is was about respect, listening to families and what they needed and wanted, it was about putting families first and understanding that they were the experts and we were the ones who needed to learn.

It was about courage, about trying something new and putting yourself out there and believing in the team you were part of. It was about the courage of our first families, people like the McKirdy’s whose kids are all here today as part of our volunteer team. They were 3, 8 and 11 when they first came to camp, and they’ve all been the backbone of our camp kids ever since. It was also about the courage of our first volunteers, like Aaron Purnell, who was our first ABI volunteer and who went from being a 21year old coping with an ABI to becoming a peer mentor and amazing sounding board for parents at camp to finally have someone to talk to about the possibilities for their kids in the future.

It was also about generosity, starting with the generosity of my wonderful Mum Barb who provided the funds to allow Heads Together Camp to become a reality. It was about the generosity of the YMCA who took a chance on our inexperienced crew and gave us the partnership and camp skills we needed. And it’s still about the generosity of all our incredible volunteers who keep coming back to create this amazing space for families to relax and connect.

And along the way camp has become very much about acceptance, about being part of a community who really get that every ABI is different and that we all manage in different ways. It’s about understanding that the experiences families have been through bind us all together as a community and a big extended family who are there to share the ups and the downs, to support others and be supported. Camp gives us all the opportunity to create something meaningful and good from the hard times that you’ve all been through.

Lisa – a Volunteer

I was blown away by the community of incredibly warm, kind and courageous people who welcomed me in like an old friend.

As a physiotherapist I frequently work with young people and their families during their most challenging periods; following a new diagnosis, after a significant injury or accident, or during periods of very ill-health. One of my goals for volunteering at camp was to experience and support families during their happier times… and this I definitely did!

I was blown away by the community of incredibly warm, kind and courageous people who welcomed me in like an old friend. The stories of what Heads Together has meant and continues to mean to families and volunteers alike were truly inspiring. I experienced a community where people felt safe enough to share their vulnerabilities and fears, yet supported enough to develop new skills and confidence to achieve their goals. Heads Together has clearly created a community supporting people to thrive.

The weekend was full of so many warm and fuzzy moments, I left feeling invigorated, inspired and enriched.

Meagan – a Sister

I don’t remember life before Heads Together Camp. For me there never was a life before camp.  My peers have no idea of the world of Heads Together and I am grateful that my family and me have had these times together to be part of this amazing world. If I hadn’t I would be just like everyone else – ignorant and unaware of a whole new life.

Without camp I would be like all other teenage girls arrogant and selfish but I have been to camp ever since I was three years old and I have learned so much. I have learned that people with disabilities can be so strong, so courageous and so determined. I know now that people at camp are not just people that I tolerate or be kind to because I feel sorry for them but they are real people that I value as friends forever.

Meagan’s older sister suffered a stroke in 1999 at the age of 6.

Juanita – a Mum

A few months ago I meet another family, and within 10 minutes of talking to them I was in tears. Someone ‘got’ us and knew first hand all the battles that we face, the daily struggles that we go through. It was a powerful moment.

In March 2017, my 9-year-old son suffered a stroke. He’s always been a very healthy kid but, in the blink of the eye, that all changed. One moment he was playing with his sister Amelia and the next he was starting to lose consciousness and had lost all speech and movement on the right side of his body. Zander spent almost three months at Monash Children’s Hospital receiving intense rehab.

During our time at the hospital, we had been advised of Heads Together for ABI and was told in brief what they do and the camps they offer. Gently we were nudged by all of our team, as Zander returned home and started his outpatient rehab, we decided to take a chance and give it ago. We attended our first camp in October 2017.

Since his stroke Zander’s interests were peeked by news reports about another stoke kid, whispers that a teen had had a stoke, that a child celebrity had a stoke. Zander has been searching for another stoke kid; he was searching for someone of his age that he could relate to, to know that he was not the only one. We all need to know that! We felt like all that we wanted all that we knew was forever changed and couldn’t really see how we could move forward.

I felt isolated. We are the only ones going through this…

I went to a friend’s house for a catch-up, and the mums were talking about school achievements and challenges they face. I felt so detached from that conversation, well I don’t know if he would be able to do that in the future, wouldn’t it be great to face that problem, and I got kinda angry listening to them talk. It wasn’t their fault; it was me. These lovely people that I have known for years are being the people that I love and doing what they would normally do, but I had changed their problems and situations were not what I was facing and I felt again detached.

I joined the FB groups, I reached out to find others, but how much can you get from reading texts and not talking face to face with someone? Sure I asked questions online but you never truly trust in a comment online, only because you don’t have the personal trust of someone on the other side of the world.

A few months ago I meet another family, and within 10 minutes of talking to them I was in tears. Someone ‘got’ us and knew first hand all the battles that we face, the daily struggles that we go through. It was a powerful moment; I found we are not the only ones and it pushed me to meet others.

Attending HT camp for us was a real driver, a step to moving on with our lives, a step to acceptance and meeting others who we could relate to. The families that we had met at HT are an incredibly accepting group of people. No one asked why Zander was using a wheelchair, because at some point most of them have. Kids needed to have meds; others needed to rest to manage fatigue. Most of the kids only attended school part-time.  All have at some point been in a hospital.

These families have navigated the systems and are a great source of help for me. Return to school tips, Centrelink and NDIS info. Getting told by a professional and getting info from someone who has been there done that are two very different things.

Seeing the older kids going on and working on their goals for me was a relief. Yes he can go on and make a life for himself after high school.

Because of his recovery, he has had to spend a lot of time at the hospital, and at home, that common thread that kids build was slowly dissolving. His good mates have stuck by him, but they can not relate to some of the things he has been though. Kid talk that needed to happen was not happening. Zander and our daughter Amelia were very excited about attending camp. Zander made some new friends, one had also had also had a stroke and another friend that had been in a car accident. During camp he had kid talk about rehab and medical procedures. He played like he hasn’t since before his stroke. One of the physios from MCH commented on how she had never seen him run so much. He pushed his social, emotional and physical limits. At HT camp he decided to write with his right hand unprompted, which was a first.

Although we try to ensure that Amelia is spending time with her peers, because of our time spent at the hospital and also because of Zander’s fatigue management, she has often missed out.

For Amelia camp was great, seeing other kids with siblings with an ABI I believe has helped her to also see she is not the only one. It has also helped her understand Zander’s limits better and our new limits as a family.

Recently his physio said that ever since camp he is more committed and willing to push himself.  HT camp gave him a little extra drive to complete the mud run in November…He would say, well I could do it at camp, I will do it on the run.  I can also see in him that he wants to do more, because at camp he could see other kids with brain injuries doing more.

Cummins Family – First Camp Experience

What an amazing weekend. We headed to Glenmore on the other side of Melbourne for a two day family retreat organised by Heads Together for ABI. Four hours in the car, stopping three times in the first hour I was wondering if it was worth the effort. Within five minutes of walking in I decided the answer to that question was yes! The first person I met, I plan on knowing for a long time. We have mutual friends, live close and her youngest and my eldest are the same age and both have ABIs from similar circumstances.

The amazing volunteers treated everyone like family. Isabelle and Grace were in their element. Our children turned free ranged and were looked after by the village. It gave the true meaning of it takes a village to raise a child.

We met amazing families who were amazingly resilient, courageous in the face of tragedy, hardship and plain bad luck. I met people who embraced their new type of normal. The expectance was oozing, with our children beaming from this vibe despite the lack of sleep. This made me see I need to embrace, learn, educate myself and others. I’m semi lost with my purpose in life, just maybe this is the path I need to go down.

Nicole

I first heard about the magic of Heads Together through a colleague and was intrigued to find out more. Working as an OT for adults with an ABI, it was relevant to my interests and work. I was keen to learn more about families who have experienced an ABI.

I enjoy volunteering as I can go away, be myself and have fun with some truly genuine, dedicated and inspiring people. All volunteers, their different personality traits, and qualities are welcomed at camp. Camp reminds me to see the world through a more positive lens and be more accepting of others. The most unexpected thing about volunteering is whilst we can all expect to come away exhausted, emotionally we are completely recharged and inspired. You quickly realise that what we take from camp as a volunteer is more than we could ever give. It provides us all with an opportunity to grow as individuals and connect with our community.