Children with Disabilities

34
PERSPECTIVE
The new normal
By Claire Halford
Claire Halford lives in Melbourne,
Australia, with her partner and
their two children. She worked in
fashion and the visual arts before
becoming a full-time caregiver for
her son Owen.
Everybody hopes for a healthy
baby when expecting a child.
When asked, “What are you having?”
expectant mums and dads
respond, “Oh, we don’t mind, as
long as it’s healthy.”
I remember the first-trimester
milestone with my first-born son,
Owen: I told the midwife that I
had stopped smoking and drinking,
ate a healthy diet, exercised
moderately and felt pretty good
about carrying a child. “That’s
great,” she said in a reassuring
tone. “After all, what can go
wrong with a healthy female in
a first-world country in professional
medical care?” Little did
I know that in about six months
I would find out exactly what
could go wrong.
My son’s birth, at full term, was
incredibly traumatic. When he
finally entered the world, he
could not breathe. His brain was
deprived of oxygen. He was
resuscitated and ventilated, and
for two weeks he was swapped
between intensive care and
special care. He had his first
seizure at 1 day old. Until he was
2 years old, epilepsy invaded our
lives all day, every day.
My son was diagnosed with
cerebral palsy (CP) at 5 months.
Cerebral palsy is a broad term
describing a brain injury that can
occur in utero, during birth or in
early childhood. In Australia, CP
is the most common cause of
physical disability in childhood,
and it is a disability that affects
children in all countries whether
they are affluent or poor. The
condition mostly affects movement
and muscle tone. Owen
has severe CP: He cannot sit,
roll, walk or speak.
Following his diagnosis, correspondence
from doctors arrived
in the post on an almost weekly
basis. Initial letters delivered
brutal realities, using medicalspeak
like ‘spastic quadriplegic’,
‘cortical visual impairment’
and ‘globally developmentally
delayed’ – terms that were completely
foreign. Every online
search ended in ‘prognosis poor’.
THE STATE OF THE WORLD’S CHILDREN 2013: Children with Disabilities
In those early days, the only
shining light in all this shocking
darkness was Owen’s beautiful
personality, infectious laugh,
obvious engagement with the
world around him and emerging
handsome looks.
The first year was very hard.
Anger – no, rage – and disappointment,
devastation, loneliness
and disbelief lurked at
every corner. As the midwife had
suggested, this wasn’t supposed
to happen to me, to him, to
us – this was a mistake! Friends
and family could say or do nothing
right, so I sought out others
who were in a similar position,
through support groups in my
area and on the Internet.
Around the time of Owen’s diagnosis,
I received a phone call
from the university at which
I had once worked, asking if I’d
like to return to teach life drawing
and design part-time. This
job was to have been my ticket
out of employment in retail; it
was to have been something
meaningful I could sink my teeth
into. I declined. I had new work:
Now I was a full-time caregiver.
It turned out that Owen had
intractable seizures that did not
respond to epilepsy medication.
So we started 2-year-old
Owen on a medical diet for