A life of my own
I’d like to share with you a little bit about my brother Jake. Jake has lived with us for 18 years. He came to live with my family when my Mum died and has been brought up with our own children. Jake has limited speech, he calls me Mum and I love him as my own.
I know I’m not telling you anything you don’t already know when I say – as parents and carers – we would pretty much move heaven and earth for the people we love and care for, to ensure they have a good and happy life.
I thought Jake had a good happy life with us… in fact, I know he did. Then something happened that made me sit up and think about endless possibilities!
My work life changed and I no longer had the flexibility I once had. I needed to work (because I couldn’t pick the right lotto numbers) and our other children were getting older and doing their own things.
Our family life had always centred on Jake’s care, wellbeing and happiness. Then suddenly I felt at risk of not being able to provide for all of my family (including Jake) in the ways they needed me.
Around this time Jake was accepted into the NDIS scheme and we were able to obtain funding for him. During the planning part of the NDIS for Jake, I was asked some questions I’m sure a lot of us would answer in the following way. The questions were; “What does Jake like to do? What do you need for Jake? And how we can help?” My immediate response was, “We’re pretty ok! We get by and help each other out and most importantly Jake is happy and loved.”
As a parent or carer I’m sure you would agree this is likely a standard response if you’re not used to funding or know what’s available to assist you. Plus, having a family member with a disability is a normal day-to-day life for us. We don’t have the insight in knowing it could be any different than what it is.
Luckily for me, I had a Crosslinks Inc. Support person with me during the meeting who understood this, and started to break the conversation down focusing on Jake. Crosslinks Inc. know Jake as he attends their Community Inclusion program during the week. The Support person was able to voice his likes and dislikes, hopes and dreams (as best we could considering his disability) or more so I guess, my hopes and dreams for him. They were also able to explain the fears I had about my inability to care for him forever. As much as I like to think I’m invincible, I keep getting reminders that I’m not!
After lots of discussion and several meetings, we had our plan! Jake was able to move into a Crosslinks Inc. Community Living home with other young people. Into an environment that was centred on him and his needs and wants. Jakes transition to his new home was done over a number of months with full support from Crosslinks Inc. so he was comfortable and familiar with his new environment. It began with visits, then extended to overnight stays, then to weekends and in 2016 Jake made the full transition.
Let me say, it was not an easy transition for me. I cried for days! I felt I had let my Mum down in promising her that I would always take care of him. I felt I had let Jake down because I wasn’t his main carer anymore. I felt like I failed him. I came to realise in time, it wasn’t about me and how I felt, it was about Jake! And Jake needed to have his own life.
Had I known earlier what I know now, I would have tried to do this for Jake many years ago!
Jake has the best of both worlds, he has his own place (aptly referred to by us as the big boys house) and he has our home where he visits most weekends. Jake appears happy to see us and happy to go back to his home, the big boys place! He is more independent learning new skills each day in; self-care, meal preparation, and having more choice about the things he wants to do. Jake is doing what most other young guys do and that is sharing a house with mates.
We can still see Jake whenever we like and vice versa. He gets the best of both worlds in this way and I have never seen him happier. At the current time he is learning to use a communication device that will assist him to communicate more freely which is very exciting!
Jake enjoys the company of his housemates, he enjoys the interaction with Support Workers and he is more proactive in his life. He makes decisions and choices for himself a year ago that I didn’t think was possible.
I guess our story is that as Carers, we need to always be open to change and growth and to the endless possibilities for a person with disability. I am fast learning just how much ability and potential Jake has and how happy it makes him when he is able to show us or communicate something to us that is; new, his own idea, or something he wants or needs. It’s absolutely amazing.
– Wendy Stone (Jakes sister).