Gayle – a Mum

They say it takes a village to raise a child and I’ve never really understood this saying till we found Heads Together. We have found our village, our extended family.

Hello, my name is Gayle O’Brien and I am married to my husband Paul and have two amazing children/adults now; Tom 22 and Amber 18.

Tom was hit by a car when he was twelve while he was riding a scooter outside in our street.  He was first taken to Frankston Hospital then to The Royal Children’s.

At first we were told his scans looked good and he was going to be ok. Then by the next morning his brain started to swell.  The nightmare began. Tom was in ICU for a month, during this time every moment his life hung in the balance.

On two occasions we were asked to turn Toms machines off, as he wouldn’t have a good quality of life; in bed, tube feed, nappies, not being able to talk, our marriage would fail, and It wouldn’t be fair on our daughter to have a brother with disabilities.  Our answer was a definite no, which also lead me to not want to leave Tom for one minute as I felt paranoid.

Early on in Tom’s recovery we needed help, luckily I had my father who stepped in and looked after Amber, and Paul and I never left Tom’s side.

We tried to understand what was going on medically and what we could do.

We realised we didn’t have much control, so we tried our best to learn how to look after Tom ourselves.  We had to pull rank and cocoon ourselves, what mattered most was Tom and everything else could wait.

I wouldn’t let doctors talk in front of Tom because I didn’t want him to hear any negativity.  I stopped asking what they thought, because I didn’t like their answers.

I watched everything and one day when another child came in and had splint boots on I asked why is he wearing those boots and was told so he doesn’t get foot drop while his in bed, so his feet would be in the right position for walking.  I said that Tom is going to walk and where are his boots, that afternoon Tom had boots on.

After a month, Tom was moved to rehab, where the real work began.  Every day I made sure he was moving everything, and he had physio and a spa bath every night.  Tom didn’t really respond properly until 6 months, where he start to hum then talk.

When we started going home on weekends it was hard, but so amazing just all being together. At home, we had hospital beds, tube feeds, nappies, and so much washing.  It was really hard going back on a Sunday night.

We were having physio in Hospital which was great, but most of the time I was exhausted.

Before we were finally ready to come home, we were faced with a group of people from the TAC coming out to decide what walls to knock down and where to put a hoist.  I know they were only trying to help but we found it so confronting and I argued we wouldn’t need modifications as he was going to walk.  I’ve had a lot of looks over the time of ‘you poor delusional woman’, I was used to it.

Just before Christmas, 10 months after Toms accident, Tom walked out of Hospital, and everyday continues to improve.

When we got home, we needed to learn how to function as a family again, we were all extremely exhausted as every day was a challenge, we had great friends and family who wanted to help and I’m forever grateful to them.  After something as horrible as this happens to your family you realise who your real friend are and we had chosen very well indeed.

We had physio, speech and OT at home, and some days it was hard work just fitting everything in.  Some days just don’t work and everyone just falls down.  Those are the days to tell jokes and take it easy.

Tom can now walk and talk, and loves his food.  He went back to his school and did a modified year 12 and now he is at TAFE and has a part time Job at a recycling place.  He is an amazing young man who does motivational talks; to physio’s not to give up and safety talks to younger kids.  I’m extremely proud of him and his sister who is at UNI doing Aviation.

We found out about heads together camp from Lauren our physio from ‘Spot for kids’.  We were a bit unsure about going, as everyday things had become a lot harder, and stepping out of our comfort zone was a worry.  We thought it would be great for Tom to see he wasn’t the only one with an ABI, little did we know we were about the find our extended family.

The first time at camp I didn’t want to leave Tom with anybody, as I’m always scared he will hurt himself.  He has tunnel vision.

After camp the first time, we all had a blast and felt we had found a place where we fitted in, not an easy task.

We started going to camp in November 2009, which is eight years ago, we have enjoyed every camp; to meet up with families we have know for years and new families.  It is a lovely feeling, the kids are now adults and most have taken on roles as leaders and all the amazing people who volunteer their time to helping our ABI kids are amazing. Over the years I have met and watched kids grow up and so many successes, it is truly inspiring.  Every person is different and every ABI is different, some have the same problems but still so unique.  There are so many issues that ABI kids have to face, that having an awesome camp where they can just be themselves is fantastic.

Tom now goes to the ‘Heading out group’ for the over 18s, where they meet up once a month and have lunch which is great and he loves to go.

We have a Facebook page which is great for everyone to keep supporting each other and knowing that people do truly care.  I really love that just like a family, nobody grows too old for camp, their rolls just change.

The heads together camp has played a big part in our lives, we thought it would be great for Tom, but didn’t realise how much the rest of us would get out of it.  There is a parent’s afternoon where the kids are looked after, and parents can discuss any issues they have, this has been a wonderful source of information about how to approach a lot of different situations and just be in the moment with other parents who really understand.

Another really beautiful thing that has come out of camp is the relationship between Tom and his sister Amber.  Going to camp has helped her to understand ABI a little better and realise that she is not the only one with a sibling with an ABI.  Going to camp definitely strengthens our relationships by just being who we are and being completely happy with that, and you will be happy to know I don’t panic any more about Tom at camp as I know he is protected and loved (even when he goes on the giant swing).

They say it takes a village to raise a child and I’ve never really understood this saying till we found Heads Together. We have found our village, our extended family.

I would just like to add a heartfelt ‘thank you’ to Kate for seeing the need for camp for kids with ABI and starting it up; truly inspirational, thank you Kate


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.