Reach Out April 2019

Personal Stories
Emily stopped meeting
milestones at around three months
of age. This coincided with us starting
to notice infantile spasms which first
started as high pitched squealing and
unusual body movements. This was
seventeen years ago and it took a lot
to convince the doctors that something
was wrong.
Sydney TSC clinic team when Emily was a teenager.
Moving into the clinic was the best decision as we
now have access to deep expertise and we like to
help the others through that clinic as well.
Emily has a superior intelligence that we
just don’t understand. She has a wicked sense
of humour, better than many world-famous
comedians. She brings us out of our worst
moments with her ‘never say die’ attitude. I think
of Emily as being too good for this world, although
we do bring her down a few pegs when she pretends
she can’t dress herself or feed herself as she often
does with a new support worker. And she beats me
at Fruit Ninja, a game she plays on her iPad!
I have found that Emily’s biggest disability is
often me. When I do too much for her, Emily’s
abilities go down. I had to step back and say I am
not the best person to teach her or care for her. I
have had to trust in the education system and focus
on ‘driving the system’ to deliver the best outcomes
for her. For example, I am advocating for Emily
to get the best possible funding packing through
the National Disability Insurance Scheme so she
can meet her goal of living independently, with
support, by the age of 25. I have had to learn that
I am not the best person to guide Emily through
life. It takes a whole village to raise a girl like Emily.
She needs a lot of brains to help her navigate this
world, rather than me just muddling through. So I
focus on getting the right people around her to help
Emily be the best Emily she can be.
Emily has TSC, but it doesn’t define her. TSC is
what she has, but it is not who she is.
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