A DREAM FROM THE HEART
Written by: Lam Ngoc Bao Phan
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.GW.D.C.
Personal Details-
Full name: Lam Ngoc Bao Phan
Class: Year 11
School: ST Johns Park High School
Telephone: 98236041
Email: azndreamer65@hotmail.com
Sunday 15th September, 2002 –
2002 AUGUST MOON FESTIVAL, CABRAMATTA
My Dream Writing Competition
Second Prize
SENIOR
Organised jointly by I.F. Learning Center and Vietnam Information Service on the occasion of the Moon Festival, September 2002 with the prize distributed by Ms. Julia Irwin, Federal MP of Fowler.