Home' Teacher : March 2010 Contents 6 TEACHER MARCH 2010
Let me share with you what is happening to my
little girl, Natalie. Natalie is five and she has a
global developmental delay, which means that all
areas of her development are significantly lagging.
Natalie has a profound language delay, which
means she struggles to communicate her needs
and wishes, to participate in conversations, and
sometimes to understand what is being said to
She has very poor coordination and low tone
in her muscles, so her day is like walking around
in a lead suit. She struggles to do things like run-
ning, hopping, climbing, skipping. She struggles
to balance, to manipulate small objects or draw,
stack blocks or undo buttons. She's always tired.
Her reasoning and concentration are poor, and
she needs to be taught explicitly how to complete
most tasks. Fortunately, her best teacher is her
seven-year-old sister, Nikki, who is an exemplary
role model, with the patience of a saint.
Natalie wears glasses to correct her vision
impairment, although these don't help with what
we suspect is a depth-perception problem. Natalie
often hesitates at a change of surfaces, such as
tiles to carpet, as she's unsure if there is a step.
She experiences seizures that can last from five
seconds to two or three minutes where she's sim-
ply not present. To bring Natalie back, a simple
hand on the shoulder, re-establishing eye contact
and repeating the instruction is required.
Living with Natalie
Natalie is a lovely, easygoing girl, a beautifully-
natured child with a keen sense of humour, and
she's universally loved by her classmates at Farm
Road Preschool and Bayside Special Development
School, both in Melbourne's south-east.
She's in good health and looks normal, but
things just don't happen for Natalie as they do
for other kids. It's like she's running Microsoft
Windows 95 on an old 286 processor which
freezes every now and then, while her buddies are
running Microsoft XP on a dual-core processor.
Natalie at five is functioning as a three-year
old, slowly moving through the developmental
milestones of childhood, in her own good time.
Why is she like this? We don't know. She's had
every test, but the geneticists are at the end of the
path and mainstream medicine seems to have lit-
tle additional to offer.
It's hard not having a diagnosis, but we do
all the therapies for Natalie -- speech, occupa-
tional, physiotherapy and so on -- which she needs
regardless of a diagnosis.
I'm acutely aware that her neurological path-
ways are forming, and that getting on top of
what's going on for Natalie sooner rather than
later will have a significantly positive impact on
her life expectations.
There's no rest from the searching for answers,
from the implacable fact that no avenue can be
left untested. What if a diagnosis is just around
the corner? What if knowing the cause of the
problem enables us to get a cure or improve her
life outcomes? How can any parent rest knowing
there is still more to do?
There's also the re-occurring grief which unex-
pectedly creeps up, when your child doesn't walk,
doesn't talk when all the other kids do: when
everyone else goes offto school; when allthe other
kids start ballet and make friends and run around
being fairies, and your child looks on in wonder
but doesn't participate; when there's a birthday
party and your child doesn't understand the social
norms, while the other kids have it all worked out.
This grief comes, it hits you, then you get
on top of it, knowing that something new and
equally upsetting is just around the corner,
unknow n, unpredictable, yet ready to devastate
you. The grief comes in waves, and you know
there are many more waves of grief ahead.
Choosing a school
My husband, Trevor, and I made a conscious
choice before our two children were born that
Trevor's children from his previous relationship
would get the best education we could afford.
We didn't choose St Leonard's College, a
school in Melbourne's south east. It was selected
by Trevor's 12-year-old daughter, Jacqueline: she
liked the way the head of the Cornish campus
spoke with her, not at her.
Trevor's son Christopher joined his sister at
St Leonard's for Year 6 and we were so impressed
with the school that our first child, Nikki, started
at St Leonard's for Prep.
MANY CHILDREN WHO HAVE A DISABILITY ARE DOUBLY DISADVANTAGED
BECAUSE OUR CURRENT EDUCATION FUNDING SYSTEM IS INEQUITABLE.
AS ROBYN VIZE EXPLAINS, IT'S TIME TO FIX THAT.
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