when I grow up…..

I want to be  Mum, and a full time carer for one of my children….

I can honestly say that the second part of that thought never crossed my mind. I never thought when I was growing up, that I would have a child with different abilities and that I would then become a full time carer.

I have spent a lot of time this week thinking about what it means to me to be a carer, following the Carer Awards on Monday, where I was announced as the Tasmanian Winner for ‘Carer of a person with a disability’.

I felt strangely humbled when my name was announced, because I  feel that I don’t do any more than anyone else would do given the same circumstances….

So what does it mean to me to be a Carer?

• it is such a privilege….its a privilege to be a parent, and being blessed with a child who has different abilities is an amazing privilege
• its hard work, its relentless, its tiring,
• its rewarding, and I have learnt more about ‘life’ over the last 6 years of being Veronika’s Mum/carer

What have I learnt from my Carer role?

• To look after myself….if I don’t look after myself I can’t look after anyone else
• Believe…..if I don’t dare to dream and believe, it wont happen
• A worried mother can do better research than the FBI
• To question
• That Veronika doesn’t go ‘by the book’ she ‘writes her own book’

but I would say one of the most important jobs of being Veronika’s carer, is to be her voice and her advocate….Veronika needs me to be her voice, until she can advocate for herself.

I am hoping to help educate around perceptions of people living with disAbility, in our local community and further afield, in particular person 1st language. As uncomfortable as it may have been at the time, I have felt I needed to be Veronika’s voice( on many occasions)…an example one time when Veronika was in emergency, at change of shift, the nurse who had been looking after Veronika had to ‘hand over’ to the next nurse to come on shift…..Veronika was referred to as ‘the downs girl in bed 4……’ I then requested that the nurse please use Veronika’s name, not a diagnosis.

I have learnt that its OK to be honest with doctors…..nearly every hospital admission Veronika has had, we have been asked if some student doctors can come and talk to us/or if we can go through a practice exam, which I don’t mind as I think of it as one way to give back to the medical profession that has looked after Veronika……a couple of years ago during one practice exam, the question came up(as it usually does) around antenatal scanning for down syndrome and diagnosis. We had declined the antenatal screening for Down syndrome, because termination wouldn’t have been an option for me. So when I said that I didn’t know Veronika had down syndrome to after she was born, I was questioned ‘why didn’t you have the screening, so you could have terminated the pregnancy….’ my response was off the cuff and straight forward ‘please don’t insult me or Veronika(who was sitting on my knee at the time), I didn’t have the screening because I wouldn’t have terminated the pregnancy, and after all isn’t it your job to preserve life?’

I have learnt that by advocating for Veronika, and being her voice, that there is a flow on effect….that conversations I have had with doctors, therapists and people we meet in our community over the last 6+ years has got people thinking and conversations happening…..

I have learnt that being a Carer can carry over into the community, and this year I was excited to be offered a role as a community member on the Ministerial Taskforce – Improved support for students with disability. It is such a great opportunity to be able to not only advocate for Veronika, but all students with disability.

I have learnt that when I was growing up, I could never of possibly imagined that I would be a Carer for one of my children…but I love it