(APPLAUSE)
Breakfast meetings are not usually on the agenda of carers,
let me tell you.
So I obviously agreed to do this talk
before they told me what time I had to be here.
So, you know, thank you, everybody, for that.
I was lucky to be able to get a carer to come in
and shower my son this morning, otherwise I wouldn't have made it.
I'm a carer for my son Simon.
Simon has an intellectual disability, autism,
and 10 years ago was diagnosed with bipolar disorder.
I think the bipolar disorder has been the hardest of all to deal with.
Simon is non-verbal and therefore unable to communicate his feelings.
So it has been difficult to adjust his medication
to assist with his mood swings.
Simon now has 20 days of depression, where he wants to sleep all the time,
followed by 20 days of manic behaviour,
where he refuses to go to bed
and will probably get three or four hours sleep a night,
including myself.
So, what can I tell you about caring for Simon?
When Simon was born,
he was one of the first children to have a disability
in our Lebanese family and community here in Melbourne.
It was such a shock for everyone at the time.
In fact, some people in my community
kept their babies away from Simon for many years,
thinking that Simon's disability was contagious.
There are a lot of superstitions around disability
in some ethnic communities at that time.
But thank God we have moved on from that
and people are now more aware and much more educated.
We love Simon dearly.
He is cared for and loved by his extended family and friends.
However, for me, his main carer, it is sometimes a day-to-day struggle.
Simon was toilet-trained by the age of 12.
I had been trying to toilet-train him from the age of three,
so it took nine years to get to this stage of his development.
Since being diagnosed with bipolar disorder,
unfortunately, Simon has reverted to becoming incontinent at night
and is also having frequent accidents as well during the day.
He does wear napkins at night,
but I am resisting putting him in pads during the day at this stage.
Being autistic, I know that once I put a pad on him during the day,
Simon will get very comfortable and refuse to go to the toilet again.
I've been very lucky
in that until Simon was diagnosed with bipolar disorder,
I was able to work full-time
as a community development worker and social worker
with newly arrived migrants, refugees and asylum seekers.
Simon has been attending day centres
and I have been blessed with having a mother
assisting me whenever I need her to share in the care of Simon.
For example, school holidays, program-free days,
Christmas holidays and, of course, on the many, many occasions
when Simon was sick in hospital or at home
and I had exhausted my sick leave and my holiday leave.
However, my mother is now 85 and becoming frail.
So I now am also caring for her with much pleasure,
as our former speakers have said,
because I can never make up to her for the assistance she has given me
over the last 42 years of Simon's life.
So, what are the pros and cons of being a carer?
Well, you just can't pop off with a girlfriend to Lygon Street, Carlton,
for a coffee.
Any outing requires careful planning and organising.
An in-house carer needs to be booked if the husband is not available,
often booked days in advance.
And, of course, you want the same carers who are used to Simon
and understand his behaviours.
As for overseas holidays,
that requires major planning, stress, arguing
and begging for respite from DHS for a couple of weeks.
By the time you organise yourself and your son
with medication, clothing, napkins, emergency supplies,
money for his day placement, money for his taxi and the respite centre,
you are so exhausted, you go on your holiday
and immediately become sick with bronchitis.
This has happened on the five holidays
I have taken in my whole life.
Simon, of course, gets very bored at home.
Despite the many things we have bought him over the years
that we hope will interest him,
he is only interested in photos.
He has over 300 photo albums
filled with photos that I have taken over the years
because I know they give him much pleasure.
And, of course, going for long drives
but not stopping to do any shopping on the way.
So it is very hard to entertain and keep Simon happy.
He also likes very, very loud music, and I fear this is the reason
I have lost lots of neighbours over the years.
Plus, of course, being non-verbal,
he tends to yell and scream quite a bit.
It is difficult taking Simon out
if he is in one of those loud screaming moods.
Also, if I am feeling tired and vulnerable
and haven't slept, which is quite often,
and people start staring at him,
sometimes I feel unable to cope
and just return home without doing the shopping that I need.
I know people don't mean to stare at us,
and, of course, young children get scared of him
when he is quite verbal,
but that doesn't make it easier for us
when we're having community outings.
But there are so many positives to being the mother of Simon.
When Simon was younger, I was worried that I wasn't spending enough time
with his two younger siblings.
I was concerned that maybe they were feeling neglected
and resentful of Simon.
So I sent them to a Noah's Ark siblings group,
where siblings of disabled children
are counselled and assisted to understand their disabled sibling.
When I went to receive the assessment of my two sons,
the coordinator of the group congratulated me
for having two very well-adjusted sons who loved their brother
and had absolutely no issue with him.
To this day, at the age of 40 and 36,
they offer to care for him and take him to their homes.
I know for a fact that when they were taking out girlfriends,
one of the first criteria was that those girlfriends
were able to like Simon and have them around.
Surely that is a blessing and a positive.
I have also developed qualities that I may never have had -
patience, compassion for others, understanding
and also strength to advocate as much as I can for Simon's needs.
When Simon is in respite, my husband and I feel lost.
We swear we can hear his voice throughout the house
and often get up and look
just in case he's suddenly made himself back to the house,
he's managed to get back home.
Simon does understand a lot of things.
I recently had a full knee replacement,
and his father brought him to the hospital to visit me.
He just looked at me the whole time without yelling or screaming,
and when I came home, he was on his absolute best behaviour
and knew I was unable to care for him and I needed carers to assist me.
However, like all ageing parents, we are now facing the dilemma
of where Simon will spend the rest of his life
when we are unable to care for him.
Simon has been on a waiting list for permanent supported accommodation
since he was 16 years old,
so it is obviously a long waiting list.
I recently submitted a new application,
but in reality, I have no idea
if and when my son will get suitable accommodation.
We want him placed as soon as possible
so that we are around to make him understand
that he can come home all the time
but that he lives and sleeps at his new home.
I know I am blessed and lucky to have Simon
and all the support that I have received over his life so far
and that I have managed almost
to be a competent carer and advocate for his needs.
I must also admit that it is difficult
to advocate for yourself and your needs.
I am a wonderful advocate for my clients -
refugees and asylum seekers -
but when it comes to myself and my son,
I feel too emotionally attached
and often need assistance to express our needs to service providers.
And we are fortunate in this country
that there are services that offer this assistance to carers and parents
and, of course, the association that spoke previously,
Carers Australia and Carers Victoria,
is one of those great associations.
My future fear is echoed by so many ageing carers in Australia,
and while many of us are hoping that the NDIS will be the answer,
I don't think we are all that confident
that our child's needs and our needs will all be met.
In the meantime, we do our best,
hope and pray that we don't get ill
and still get great pleasure from having Simon in our life.
Thank you.
(APPLAUSE)