EMOTIONAL
was very basic, so we had no real way of knowing
what she was feeling. Chez requested an MRI,
to check for problems in her brain.
As big as a car, an MRI machine looks like a
doughnut. Lily was terrified. It soon became clear
that she would have to be sedated. It took two strong
men, plus me, to keep her still while the sedative was
injected. She needs to have this done, I kept telling
myself, feeling like a terrible mother. Finally the
sedative took effect and Lily stopped struggling. They
placed a plastic frame around her head to keep it still,
then secured straps around her body. A technician
told me to come into the observation room. I said
I preferred to stay close to Lily, in case she woke up.
I sat there, watching my little girl. She looked so
vulnerable strapped into the weird machine.
I waited with Lily in the
recovery room and the technician
brought me her films. I was relieved
to find she had no tumour or lesions.
She [had] a mild brain abnormality
called a Chiari malformation type 1.
The lower part of her brain had
slipped into an opening in the
skull where the spinal cord passes
through. The resulting compression
can cause headaches.
A few days later, Jack also
had an MRI. Fortunately, he did
not have any tumours, lesions or
the Chiari malformation. His
epilepsy was electrical.M
any people still do not
know what autism is.
When they encounter
it, they are often
puzzled and alarmed.
Or they assume that the child wailing or flapping
in front of them simply needs discipline. There have
been times I have had to stand in front of a crowd
of people (on a plane) and announce, “My child
has autism. Please be understanding.”
But, on the whole, people are a lot more aware
of autism now. There have been books, films and TV
shows in which major characters have autism. More
kids with autism are being mainstreamed in schools.
Special-needs teachers, carers and therapists are
part of a compassionate army of helpers who try
everything to reach our children. Through music,
physical, speech and play therapies and sensory
integration, we are telling our children, “You matter,
and we want to know you. Nothing you can do will
stop us from trying to reach you. We will be here
when you are ready to venture into our world,
and when you do we will keep you safe.”
P. J. a nd I know that living with autism in the
family is survivable. It’s not a tragedy, just a road less
travelled. In the past, I sometimes tried to go it alone,
but I have learnt that I am not enough for my kids.
They need more than just me and my love. Allowing
other people to help allows me to be stronger and
brings new friends into Jack and Lily’s lives.“A doctor once told
me my autistic kids
may never love me.
It was devastating”Jocelyn and P.J. on
the NSW set of their
2012 film, Mental.This is an edited
extract from
Unconditional Love
(Text Publishing,
$32.99) out now.PH
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LY.
My life has had its moments of heartbreak
(whose doesn’t?) but also moments of absolute joy.
Seeing my kids’ personal achievements helped me
understand that by climbing our metaphorical
mountains together, our love grows stronger. Sure,
there is always another mountain, but if we can
climb one together, we can conquer them all.
Climbing [them] can be exhausting. It took me
years to realise that a lot of the pain I was feeling
was of my own making. I was fighting an internal
war between my instinct to cling to my dreams
about life, and my need to accept the truth.
I worked for years on the script idea I had
conceived back in 1999, about a couple who raise a
changeling. I don’t know if I will ever make the film.
In the story, the parents spend a long time trying
to rescue their perfect child.
They know this child has been
kidnapped by bad fairies, who left
behind a wild, scary creature who
merely looks like their daughter.
At the end, they realise they have
been under a spell of sorts. Their
real daughter is that wild and scary
creature, and they love her anyway.
They finally see her beauty. The
parents’ epiphany was, of course,
my own journey to accept Lily
and Jack for who they really are.
Something else I had to do
was to accept myself. Part of me,
an important part, is an artist. For
too long, I felt I had to deprive my
creative side. I felt I must have
sinned against my kids by making
A Thousand Acres, and trying to
make Eucalyptus. I had chosen
to pursue my art, and my career,
and in doing so had deprived my children. I had
committed treason against motherhood! As a mother,
I thought my duty was to devote as much energy
as possible to improving the lives of my children,
even if that meant ignoring my own needs.
But it didn’t have to be one or the other. I could
be a loving, working, committed, creative mother.
The simple truth is I needed to work. Not working
made me sad and frustrated. Continuing to deny
the part of me that yearned to tell stories, that loved
making movies, was to deny the self that existed
before all my other roles in life. I had always been
that person. Why deny that she still existed?
A neurologist [once] told me my autistic kids
may not ever love me. It was devastating to hear [but]
completely untrue. Our love is deep and strong ... to
weather the times when we cannot reach each other.
And there are plenty of those times. Loving
someone with autism means building a bridge from
one reality to another. And when [that] crumbles and
falls, it means finding the strength to build another.
Our bridge-building will continue until I can build no
longer. I want all my kids to feel that they belong in
this world, and are loved for who they are. I think, in
our hearts, that’s all any of us wants for our children.