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Caring for a disabled child is is so much more intense. Its so much more youve got to
look at every aspect of her life, because she cant communicate, so Im her doctor, her
physio, her cook everything to her her nurse. And its like looking after a little for Deanne
its like looking after a little child but in a bigger body. You just do everything for
them. Everything. I was in hospital, obviously. I was going to have Deanne and… it was three
days after I had her that they told me that she was Down Syndrome. And I had absolutely
no concept of it. The paediatrician was there because I had a Caesar and when he told me,
I thought it was the weirdest thing I thought, what do you know about Down Syndrome? It was
like I just couldnt grasp the concept. And I read and I did all the research, everything
I could, to learn about her condition, how to improve it. Because being a teacher at
heart, I had to teach her. After she had a heart operation, she got Epilepsy and that
started another ball rolling where she had other complications. It was a very, very challenging,
extremely challenging time where you want to keep your child safe. It was very heartbreaking.
Until you are in it, you really dont know what rollercoaster ride youre in. I didnt
go to work for about eight years. I made sure that she was, obviously, safe, cause she was
just like a little baby and no one knew her like I did. Even with my mother being in the
home, she was too scared to look after her because of her Epilepsy, so there were six
years where I hadnt gone, hadnt left Deannes side. Years later when I had time out to just
spend time with my older daughter, just to go out – those times are rare. They were
rare. I mean, theyre happening more now but, at that stage, it was all Deanne. Everything
had to be Deannes routine. We had to do this for Deanne. We had to go there. We had to
bring that. So I think that affected everyone in the family.
Couldnt go out as a family. Im a bit of a control freak and, as a result, I need to
control everything, that everything runs smoothly, because while I was working, I had to have
the teaching had to go according to plan. At home, the rosters had to be done so that
the carers came and had come at the right time.
And then my mothers needs being met and appointments had to be done, you know. And so I had to
control this. I had to, otherwise, you know, how can things get done? And it was like juggling
a lot of things, you know. Appointments, and they were a lot. I had to go to appointments
for my daughter, my mother, for me. And, so, um… I had to have control over that. And
so I thought, “I should be able to cope. I should be superwoman.” But Ive since found
that it just exhausts me and sometimes I most certainly need assistance.
Having a break is extremely important. I didnt have it before so I had my little mini break
I call them mini breakdowns because I was working full-time as well and there wasnt
a second to spare, but right now its very important. I get I just have a greater love
for what I do and a greater acceptance of what I do and I come in with a little bit
of energy rather than angry and so, when I really get angry or upset, I realise, oops!
Sofie, you need a little break. You need time out. Sometimes I just want to be me. I dont
want to be defined by teacher or carer, mother or daughter I want to be defined as Sofie.
And that, to me, when Im with my friends, thats what I am, so
Being in a Greek family and having a mother who who has had a lot of control in the family
and, of course, she wont let that go but it is a good thing to have three generations
in that you get the support and the help that you need, especially in my position. I dont
think I couldve done it without my mother. Financially, I wouldve been it wouldve been
very, very difficult and its through her help that I am where I am now. My family, well,
they have a lot of respect for me. They know that I care for two people and how difficult
it can be, so they know that its not easy for me.
Sofie’s mother watching television: I mean, Im used to Deanne, but my mother its
a different thing. Its completely different. My mothers ailing health and her eyesight
is the biggest worry because it actually is declining and a person who is totally dependent
is not an easy task. Im not looking forward to that and I dont want that to happen.
Everyones one step away from being a carer. We all have parents. We need to look after
them. OK, in my case, I have, obviously, a disabled child from a young age but its very
important that community knows. They have to have an appreciation because were all gonna
be there one day. My name is Sofie and I have two children.
I am caring for my mother, who is legally blind, and my daughter, who has Down Syndrome
with Epilepsy.