Last week in our Virtual Morning Tea we talked about the siblings of a person with disability, and the support they need. Particular support for siblings is often overlooked, especially when the person with disability needs a high level of care.
Following on from this, we’d like to share a blog from one of our families. Matt tells us a little about his life as Scott’s brother.
My name is Matt and I have a brother who is 17 months younger than me. Scott has an intellectual disability, epilepsy, CP and some health issues.
In primary school I always had to stand up for my little bro, it was hard to have a brother in the ‘special’ class. Things were easier in High School as we went to different schools and my friends who came to our home always accepted him.
When I was 13 I went to a Sibling Workshop, this helped change my attitude as I realised that there were lots of other kids with brothers and sisters with disabilities. They experienced the same feelings and frustrations as me.
I served 9 yrs in the Australian Defence Force and moved back to Queensland in 2006. Over the next 4 years I got to know Scott as an adult and we became a lot closer. When I was younger I used to think that myself, or somebody else could ‘fix’ him, now I accept him for who he is.
I now live in southern New South Wales and work as an interstate truck driver, I only see my family a couple of times a year but we talk a lot and mum follows me on facebook. Scott regularly texts me to tell me what he is up to, he finds it easier to text than make conversation.
I got married recently and wanted Scott to have an important role in the proceedings, so asked him to video the ceremony and our first dance. He did an outstanding job and the video he took gives us the opportunity to relive our special moments from that day.
I know mum and dad worry about our relationship when they are no longer around but I will always be there for Scott no matter where we live.
Fast forward 6 years
In 2019 my wife and I decided it was time to move back to Queensland. Part of our decision was to support mum and dad with Scott.
We realised that with our parents approaching 70 and beyond, it was time to take a more hands on approach and to get to know about Scott’s everyday life, the supports he receives under the NDIS and from whom he gets these supports.
Mum and Dad now include me in all aspects of Scott’s life and ask my wife and I about decisions that need to be made on Scott’s behalf, like if we thought his kitchen needed renovating or if we should leave it.
We spoke to Scott about it, discussed this as a family, and came to the conclusion that Scott was happy with his home as it is, that he would not look after a new kitchen any better than the one he has now and that it was more important for him to be able to travel and attend sporting events than to renovate.
Together we discussed and put in place some strategies concerning Scott’s finances.
Last year we enjoyed our first Christmas together as a family for 10years.
Scott’s everyday needs are catered for well and mum and dad have put plans in place for his future without them, but I am pleased to live close to him now and be able to get to know him better and play a bigger role in his life.
Having Matt and his wife living close by, has been a great comfort and support for us. Matt has been helpful in maintaining our home, and knowing we can call on him to help us do things for and with Scott, makes our life so much easier.
Being a sibling of a brother or sister with a disability may present challenges to many. These challenges will vary for everyone and will change depending on the person’s age and circumstances.
Sibling support programs benefit all members of the family.