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…A dream from
the heart…
Once a great man proposed that he had a dream that mankind
would all live equally and he was known as Martin Luther
King Jr. and he had a dream like any other mankind. I have a
dream but it’s a dream no one I know have ever thought that
mankind can reach into their hearts and learn love more than
they can ever love. My dream is for the community to open up
their hearts to the disability. What is to be told is a
personal experience – my experience.
I
have a sister who is turning 23 years old in one-month time
and she was born with a mental disability known as Down
syndrome. Down syndrome is a genetic condition caused by
extra genetic material (genes) from the 21st chromosome. The
extra genes cause certain characteristics and they also have
all the other genes given to them by their parents, which
result a combination of features typical of Down Syndrome on
top of the individual features from their parents. This
includes some degree of mental retardation, cognitive
disability or other developmental delays. Some physical
traits that are common but not always present are epicanthal
folds over the eyes, flattened bridge of the nose, a single
palmar crease and decreased muscle tone.
For sixteen
years of my life I can never believe how my parents were
able to teach myself and my brothers to devote ourselves to
my sister and that is why I write this because I want the
community I live in for sixteen years to understand
something so special to me and my family. My parents were
brave then and they are still brave today to teach their
other three children, myself included, showing how to
understand my sister and to love her as our sister. They
taught me so much that I will pass this knowledge to my
future children and they will pass that knowledge to their
children and it will go on endlessly.
I used to
walk down a street or into a shop with my sister, and people
would look at my sister as if she has a contagious disease.
It was painful for to see that but as I grew older, people
come by and talk to my sister, which brings so much
happiness. There are many stories about my sister that I
could tell the whole world and share my feelings. I am not
ashamed or embarrassed to seen with my sister. I am proud to
have a sister with Down syndrome, you can learn so much
about them and I believe that the community or even the
world should feel the same feelings that I feel. There is
nothing to hide but yourself because you don’t know how to
reach into our heart and learn to love these people. They
are human after all, am I not correct?
My sister
does not ask very much but the only request from her is to
give her the attention when she asks for it. What can I say
about my sister? She’s an addict to learning. There’s never
a time I would see her writing or even read something – she
loves school so much that it would take the Chicken Pox to
make her stay at home. What else can I say about my sister?
There’s so much to write in such short space.
Three years
ago, my parents had formed what I call The V.N.P.S.GW.D.C –
The Vietnamese Parents Support Group with Disabled Children
and this group help bring Vietnamese families together with
their child of a disability ranging from Down syndrome,
Autism, spastics and the deaf, to communicate and build
friendships amongst each other. When I see the other
children it wants to make me cry deep within my heart
because they are disadvantaged for what they are. Within
this group, my parents make no profit from it. There is no
government or community funding that supports this group and
what my parents can only give is the knowledge they have
after raising my sister, and the understanding, compassion
of those in the same situation, having been there, done
that.
I want to
reach out to the community to show them and allow them to
understand the disadvantages the Vietnamese families with a
child of disability. The reason is that they do not know
English it is hard for them to receive community support and
they do not know who to turn to for help, which makes it
difficult for them to raise a child with a disability and
taking care of a family. I say this not just on behalf of
the Vietnamese families with a child of disability but also
to any cultural families with the same disadvantages.
I also want
the community to show more awareness to the issue of
handicapped people, like having more understanding for the
difficulties that handicapped peopled like my sister or
autistic children have to face with. Many times parents in
my parents’ support group complain that the community
doesn’t understand the particular behaviours of autistic
children, when they meet these children on the street or in
McDonald or in restaurants. People get angry or upset
because these children show antisocial behaviours but they
can’t help it, and the parents can’t make their children
behave properly, simply because they have mental
disabilities.
Misunderstanding can cause people to have hurtful comments
which I think are unfair to the parents with handicapped
children. My parents had to be very patient to teach my
sister many times to do simple things that parents of normal
children take for granted, such as tieing shoe laces. It
took my sister a year to learn how to tie her shoe laces.
These hurtful comments are not useful to anyone and what is
more, it only highlights people’s ignorance of disability,
the unfairness of life that my parents or other parents
don’t need, on top of all the worries, anxieties they have
in raising my sister or other handicapped children.
Better still,
what the community can do is to say encouraging comments,
show some understanding for the heartaches, sadness that
these parents have to endure since the day their children
were born, give them a pat on their back to congratulate for
the good job they have done in raising their children. These
simple gestures mean a lot to people like my parents, they
would make my parents feel better, feel that the burden fate
has given them now somehow becoming lighter, bearable,
giving them reason to believe more in the goodness of their
fellow citizens in the community, giving them more strength
to go forward while caring for a handicapped child.
People have
this misunderstanding. They think that handicapped people
can’t do much because they have limited capabilites, but my
parents have proved my sister can do many things. My sister
has Down syndrome, however she does lovely pottery, she
works at a doctor’s surgery one day a week, and the patients
comment on her cheerfulness, eagerness to serve them. People
want to buy her pottery, they say these are original and
creative. My sister leads an independent life to a certain
extent, and my parents have more plans for her in the coming
months, like getting her to work in the library. Her life is
active, busy, which proves that with help from the family
and the community, a handicapped person can have a
productive life, full of interesting activities and be an
contributing member in the community, if only people give
them the opportunity to develop their potentials, which are
many.
My dream is to
find a way to open a pathway to the future for these people
and to reach out into the community’s heart to show them
that they can do so much more for the community if they open
up their hearts and help the unfortunate families who need
the help from day one of the birth of their mentally
disabled child. I want the families to receive the help,
support and the services from the community that they
deserve. All I am asking from the community is devote some
passion to the disability and show their family and other
members of the community that you care and you would like to
help them in any way you can.
Whether I do
win the competition or not, I just want to be heard to tell
the community that we should help those who are
disadvantaged to the English language because they need the
help that they can receive. Raising a child with a normal
health is pure luxury but raising a child with a mental
disability is one hundred times harder to raise a normal
child. I write this because I understand the hardship of the
families with a child with a disability due to the fact I
grew up with a child with a disability and that person is my
sister and I thank my parents for teaching me so much about
my sister and other families within The V.N.P.S.G.W.D.C.
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