Reach Out April 2018

Personal Stories
Georgina’s story
am 23 and my younger brother Jacob is 21 and lives with
I tuberous sclerosis complex (TSC). I am studying at university,
in my final year of music therapy, combining my love of
music and psychology. Jacob works at Bedford Industries, an
Australian disability enterprise, in their packaging team. We
grew up in Ballarat and now live in Adelaide.
Jacob is the life of our family. We’re generally a shyer group of
people, but Jacob can make conversation with anyone. He brings
so much joy and an almost child-like innocence that has stuck
with him even as he’s grown up. Everyone thinks the world of
Jacob and he makes friends really easily. Even though TSC has
caused Jacob many challenges, we feel very blessed to have him.
From knowing Jacob and his
friends, I have a different perspective
and am more natural with people who
are different
The major impact of TSC on Jacob’s life is his intellectual
disability. He has some more advanced social skills, but isn’t able
to read or write or do basic mathematics. Of course, he also has
the physical signs of TSC and sees lots of doctors to monitor how
the tumours throughout his body are growing. He had brain
surgery about ten years ago, but everything else has been under
control, which is great. Jacob takes it all in his stride.
Although I have nothing else to compare it to, I think
being Jacob’s sister has made me more understanding. From
knowing Jacob and his friends, I have a different perspective
and am more natural with people who are different. Jacob’s
attitude is totally without judgement. I don’t know that he even
comprehends disability at all. When I see this, it reminds me to
be more like that.
Growing up, I don’t think I really knew that our family was
different until later in primary school. We’d be out in public and
Jacob
would
just start
singing. He’s
Georgina & Jacob
always been a free
spirit. People would
walk past and think it was bizarre,
but we’d just think, “That’s Jacob and he’s having a great time.”
I can remember being with a large group of friends from our
church and Jacob decided he was going to get up and perform a
song, possibly not the most appropriate song choice of, ‘Don’t cha
wish your girlfriend was hot like me’. Everyone knew Jacob well
and, although it caught everyone off guard, we generally just let
Jacob be Jacob and all enjoyed his singing and dancing.
Of course, life wasn’t always singing and dancing. One of the
hardest things is when my patience is challenged. Jacob can be
very fixated on things, such as his current obsession with flags. It’s
just so intense and relentless and it’s been an obsession for the last
ten years. It’s harmless enough, but it does get tiring.
I can’t ever remember feeling like my parents gave Jacob
too much attention or that they didn’t help me enough. If Jacob
needed someone with him, it was often Mum with him and Dad
would spend more time with me. My grandparents also played a
big role and if Jacob needed both Mum and Dad then I would have
a great time with Grandmother and Grandad. They’d also check
in with me regularly and make sure I was ok. Even if there was a
physical distance, calling and having a chat showed me they were
thinking of me and they loved me.
I know everyone is affected differently, but if I had to offer
advice to someone else with a brother or sister with TSC, I’d tell
them to be open to what their sibling can teach them. For me,
Jacob reminds me to enjoy the small things, to not be too quick
to judge, and to be more loving. Even though it does come with
many challenges, there are definitely gems that you can grab out
of your situation.
13