Cyclone Disability
Everyone of us has had their own personalised version of growing
up and whilst the template of life for most is the same we have
all had different experiences. The families that we come from are
different, the cultures that we live are all different, life's opportunities
for us all have been different. Mostly along the way we have control
over the decisions we make, we are fairly comfortable about the
directions we are taking, we take a lot of things for granted and
generally go forward with our lives. At the stage in our lives where
we make the decision to have children we have thoughts like other
parents before us - we say and think the usual things not caring
if it's a boy or girl just as long as it's healthy.
The point in our life when we learn that that our child has a disability
will be different for all of us but the effect it has on us will
be similar. It alters our expectations of parenting, throws us into
a world of unpredictable emotions and dumps us into the patchwork
of services that exist to support families like ours.
This change in our lives is as unpredictable as the weather. With
the weather we know the four seasons will happen year in year out,
forecasters can now give us the prediction for a whole week but
you still don't know until the next day if it will turn out the
way they predicted. With our own lives some doctors try to become
the forecasters and often the long range forecast is fairly bleak.
As parents we mostly try to avoid the long range forecast and just
manage the next 24 hours. The trouble is you can never predict how
you are going to deal with the little cyclone of emotions that are
part and parcel of the new parent that you have become.
Remember before you had this child life was a breeze and all mapped
out – suddenly "cyclone disability" has entered your
life and the directions you now take will be different. Whilst the
initial cyclone goes on it's way, in it's wake are little whirlwinds
of emotion that enter your life when you least expect it. Nothing
is predictable any more.
The full force of the cyclone hits when you learn that your child
has life long disabilities. When you are in the eye of the cyclone
you think that you can not bear it any more, the pain you feel for
yourself, your partner and your child almost tears you apart.
Just when this happens is different for all of us. Some of us had
some warning, for others the cyclone hit at birth and some were
living in the cyclone belt but it took longer for the cyclone to
hit. With the aftermath of that initial disclosure you start to
rebuild outwardly, at least. Just how you rebuild will be as individual
as the person that you are. The love for your child prevails and
the practical aspects of identifying what to do next fill your life.
Now just like the unpredictable nature of where a cyclone touches
down, our access to services will parallel that pattern – it
seems to be just as unpredictable. Everything relies on the expertise
of the medical person who makes the diagnosis, their knowledge of
the service system, the type of disability, the age of the child,
where you live, the waiting lists you encounter and your tenacity
to persist.
The predictable aspects of rebuilding your life include the introduction
into your life of many new people, continual questions and assessments
relating to your child, more assessments again to access services,
the need to meet eligibility criteria before getting limited services
and then, depending on where you live and how much of the inevitable
small "bucket" of money is left according to the time
of year it is, the probability of only being put on a waiting list
for services.
Some of the spontaneity leaves your life and decisions that in
the past were trivial can now seem daunting and are put aside. Just
going for a walk can become an expedition - the sunshine calls,
you gather the children for the short walk to the local playground
and before you even get to the front door you are questioning the
decision. As you lift your child from the floor to the change table
and lift again to the wheelchair some of the sunshine outside seems
to fade. As other little hands grab yours there is a need to continue.
The short walk includes sideways glances from passersby until you
reach your destination. Running ahead the other children spill onto
the playground as you stop and lift again, there is no physical
access into the playground for this little boy, so you carry your
excited child to a little rocking duck asking him to grasp the small
protruding handles as you help adjust his legs - all the while looking
out for the others. "Mummy look at me" "come and
push me mummy" - you can not leave the little boy who needs
you there to keep him on the rocking duck so you smile and say "I'll
be there in a minute."
Others come to the park and a mother with a toddler waits patiently
while you untangle your 8 year old son's legs from around the rocking
duck and carry him back to the wheelchair. You push him closer to
his brothers and put on the brakes. Smiling, patient faces look
up to you and say "push me mummy" and you do - all the
while looking out for your son in the wheelchair waiting patiently.
The sun goes behind a cloud it's shadow seems to cover the play
ground. The shadow moves as quickly as the children going from one
end of the playground to the other. Smiling briefly at the other
unknown mother I bend, lift and carry my son to the seesaw positioning
him as I call to his brothers to jump on the other end.
With a final bend, lift and carry, calling to the others you all
head home again. The simple, short journey to the playground did
become an expedition and whilst you don't always reflect on moments
like these sometimes the emotions you experience may make you think
twice before embarking on another simple journey.
The outward signs of rebuilding may seem to others that you have
accepted your situation - but they are not you and not living your
life. On the inside, when the full force of the knowledge of your
child's disability hit, the emotions it brought with it do not just
disappear. They seem to subside only – resurfacing when you
least expect it – sometimes as an overwhelming anger or sadness,
or that exquisite almost "sad-joy" at the smallest achievement.
Just when you least expect it, when you thought you were in control,
one of those emotions can sneak up on you. I know I am not the first
and will not be the last mother to shed a silent tear whilst watching
another child the same age as mine, doing something as simple as
riding a bike whilst thinking of what "might have been"
for my child.
After a cyclone hits the outward signs of rejuvenation become evident
but the shock of living through the experience will forever alter
those that have lived through it. All the outward signs of rebuilding
are there but it is difficult to reclaim the person that you once
were before the storm hit. Mostly you continually make adjustments
physically and emotionally neither becoming a better or worse person
just different, perhaps stronger, more determined, possibly more
assertive but definitely a different person.
Diane McCarthy
Parent Support Worker
Association for Children with a Disability
NoticeBoard
September 2000
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