Cập nhật 16/3/2011 - 10:41
Open Letter of the Club (Thư ngỏ)
A glance at who we are and what we do
AN OPEN LETTER FROM
The Hanoi Association of People with Disabilities
Hanoi Club for Parents of Children with Autism
Ladies and Gentlemen,
We are the fathers and mothers of children suffering from a syndrome which has remained difficult to understand: Autism Disorder.
Like many other fathers and mothers, we were immensely happy when our children were born. Our babies were exceptionally beautiful and smart looking without any signs of abnormalities. Then one day, we suddenly noticed our children failed to jabber like other kids, or look into our eyes, or be interested in toys. We were terribly shaken. Our whole world seemed to collapse as the unbearably painful truth manifested itself. Our beloved children had autism!
Before this happened we knew very little about autism. We found out that there are only a few doctors who diagnose, and treat autism. We were informed that intervention measures designed for autism had only very limited results. In addition, neither public education institutions nor health care centers were in existence to fully satisfy the needs of autistic children.
We were embarrassed by the lack of support and understanding our society provided and desperate for answers to our many questions. It is really impossible to explain the pain we felt when we looked at our children. Although they looked like any other child, and they did not have a fatal disease, we felt they would live their lives knowing nothing about their surroundings because they were trapped in a world full of illogical fears and obsessions.
Eventually, after overcoming our initial shock, we threw ourselves into a battle to find some answers. As you may know, autism is an extremely sophisticated syndrome. Each case of autism is unique, which means each child needs a customized plan of treatment. We wrote letters, made phone calls, met with professionals, read documents, debated different viewpoints and therapies. Because of this course of action, and the fact that we were living with these children, we found ourselves becoming the experts in autism. And although every day was and is a struggle, we all understood that we could never stop searching for ways to understand and help our children.
The Hanoi Club for Parents of Children with Autism has acted a catalyst in bringing together people and research regarding the treatment of autism. The Hanoi Club has been in existence for many years. It is made up of several hundred families who have joined together in a long term fight to find a cure for autism. The Club has organized numerous workshops with local and foreign experts, worked out a variety of intervention programs, translated countless documents, and amassed a rich collection of experiences regarding the treatment of autism.
The members of the Hanoi Club for Parents of Children with Autism would like to express our sincere thanks to the professionals who have studied and worked out valuable intervention therapies for autism. These include, but are not limited to, behavioral, linguistic, occupational, and bio-chemical therapies. With appropriate application of these therapies, our children have shown hopeful progress. Having said this, we know the road ahead still remains an uphill battle. The number of autistic children keeps increasing, the disorder continues to baffle experts, and society does not understand nor seem to tolerate these people.
Today we are requesting relevant government agencies to set up facilities for consultations, early diagnoses, and treatment of autism. It is important that such facilities have many experts from a variety of fields including but not limited to health care, education, and psychology.
We need the education sector to implement a policy of integrated education for children with disabilities – a very human policy. At the moment, schools largely lack teachers with experience or training in the methods of working with disabled children in an integrated classroom. In some cases, schools refuse to accept and discriminate against children with mental disabilities. A child with autism receiving intensive intervention in the early years can develop relatively good language, behaviors, and basic self-service skills. When this happens, the child then needs to go to school and be integrated into the educational and social life of that institution. We need schools, teachers, pupils’ parents, and the students themselves to open up their arms to welcome our children. Children with autism need to have the opportunity to become educated so they can move forward and eventually become independent, contributing members of society.
In addition to educational expectations, we need career training for our older children. We are aware that job allocation in our society is a challenging proposition, but many autistic children have valuable abilities. With training, they can become contributing members of our work force. It is our hope that one day people with autism can live independently. We pray for it everyday, but we are very aware that this is a long and difficult road.
Another problem we must address is the one concerning economic difficulties. Bringing up a child with autism is extremely costly. Professional consultations, study aids, physical exercise equipment, medication, and tutors all cost money. These things, added to the fact that one person in the family often has to quit their job in order to take care of the child and manage his/her treatment program, makes money even more problematic. A number of families have had to stop or cut down their children’s therapies because of the rising costs of treatments. In some countries, families with autistic children are given allowances from their governments, and grown-up persons with autism receive ongoing assistance from social workers.
Because Vietnam is presently dealing with many economic difficulties, such policies have not yet been feasible in our country. We have thus found ourselves in the position of asking for assistance from private individuals, organizations, associations and agencies. Contributions have been given directly to families or to The Hanoi Club for Parents of Children with Autism. The Hanoi Club has used these contributions to translate documents, establish material labs, organize workshops, invite overseas consultants, purchase sets of diagnosing devices, etc. We are deeply grateful for and sincerely acknowledge all financial support.
Finally, we are asking for support from the mass media. If television stations would broadcast short, educational programs about autism on a regular basis, this would be a tremendous help in educating people. These programs could teach parents how to identify children with autism. They would help people understand and accept the children who have this syndrome rather than discriminating against them and ostracizing them. The programs would encourage people to sympathize not only with the autistic child but also with the families dealing with this long term disorder. When we receive encouragement, it lifts us up and helps us move forward in lives which are otherwise mostly filled with many, frustrating obstacles.
We have all sacrificed many things in our own lives in order to help our children. We have invested a great deal time and money to sort out the best treatments available. We have listened to the experts and one another. We have dealt with discrimination and ignorance from people who know nothing about our children. What keeps us going is when one of our children says a new word, or learns a new skill, or plays appropriately with a toy, or looks us in the eye. When this happens, we know these sacrifices have been worth all our efforts.
We are deeply grateful for your attention to our message and we do hope that you will listen to us, and continue to support our efforts.
The Hanoi Club for Parents of Children with Autism