|
Ms. Nguyen Tuyet Hanh, representative of the Hanoi Autism Family Club, participated in and contributed her opinions at the international scientific conference "Improving the Quality of Inclusive Education and Towards Sustainable Education for Children with Disabilities in Vietnam" held at Hanoi Pedagogical University. (Photo: provided by the interviewee) |
Supporting families with autistic children to alleviate their burdens.
Having spent over 29 years caring for her autistic child and over 20 years working in the field of autism, Ms. Hanh understands the difficulties, hardships, obstacles, and challenges faced by autistic children and their families on their path to integration. She has never been discouraged by the fact that her child has autism because, no matter what, a mother's love for her child remains unchanged.
Twenty-nine years ago, when her daughter was only three months old, Hanh, with her maternal instincts, sensed something unusual about her child. The baby didn't like being held, cried and struggled whenever she was cuddled or comforted. Only when placed down on the bed and left alone would the baby stop crying. Later, she understood that these were the first signs of autism. When her daughter turned two, she exhibited many behaviors different from her peers, such as preferring to play alone and becoming irritable for no reason.
At that time, there was not much information about autism in Vietnam; in fact, not a single medical document mentioned the condition, so Hanh and her husband were extremely worried. There were nights when Hanh couldn't sleep, looking at her child and shedding tears.
It wasn't until 2000, during a hospital check-up, that she learned her child had autism spectrum disorder – a lifelong developmental disability that causes behavioral, language, and communication impairments.
Initially, when she learned that her daughter had an incurable disease, she was shocked and couldn't understand why her child was suffering from it. Overwhelmed by grief and misfortune, she eventually rose above it all, regaining her composure and accepting her child as "different" to support her. During the process of raising and caring for her daughter, through personal connections, she learned from the experiences of others, independently researched special education methods, and dedicated time and effort to finding specific ways to teach her child that were suitable for her…
|
This photo was displayed at the exhibition celebrating 20 years of establishment and development of the Hanoi Autism Family Club. (Photo: Provided by the subject) |
Driven by the desires and needs of families with autistic children in Hanoi and surrounding provinces, in October 2002, with the support of Ms. Nguyen Thi Hoang Yen (now Professor, Doctor, and Distinguished Educator), then Head of the Department of Special Education - Hanoi Pedagogical University, Ms. Hanh and a number of parents with autistic children established the Hanoi Autistic Children's Family Club (now the Hanoi Autistic Family Club), the predecessor of the Vietnam Autism Network. At that time, the club had about 40 members, mainly parents of autistic children and some teachers who teach autistic children. To date, the club has thousands of autistic individuals and their families participating in its activities.
The club was established to provide a platform for parents of autistic children to meet, support each other, learn and share knowledge about autism spectrum disorder; raise social awareness about autism, reduce stigma, and facilitate early detection and intervention. timely action is needed to raise awareness and responsibility within society regarding autism spectrum disorder...
To make the journey of supporting people with autism less arduous, the Club has translated many foreign documents on autism; organized discussions and exchanges on the problems families face in caring for autistic children; and organized training sessions on biomedical therapy, psychological therapy, and nutrition for autistic children, giving families the opportunity to learn from and interact with experts from both within and outside the country.
Additionally, to raise community awareness and in response to World Autism Awareness Day, the Club organized two walks for children titled "Helping Autistic Children Understand Community Integration" and "Taking Action for Autistic Children" in Hanoi, with the participation of thousands of people.
Furthermore, as a dedicated space for autistic individuals and their families, the Club regularly organizes sports and cultural events. Notably, in November 2020, the Club held its first ever "Autistic Individuals' Vocational Training Fair," showcasing a wide variety of handmade crafts, food, cakes, dried fruits, and pre-processed vegetables. It is expected that the "Autistic Individuals' Products Fair" will resume this April, after a four-year hiatus due to the Covid-19 pandemic.
|
The Hanoi Autism Family Club organized a free training course on "Applying Speech Therapy in Speech and Language Development for Children with Special Needs" for teachers in the field of caring for and educating autistic children and parents in many provinces and cities. (Photo: Provided by the Club ) |
The inspiring journey of a great mother.
Recalling the arduous journey of caring for her daughter, Ms. Hanh shared: "If raising a normal child is difficult, then caring for an autistic child is ten times harder. My daughter only developed language skills at the age of 5.5, so I had to spend months diligently teaching her to speak, to call everyone in the house by name, to answer yes or no questions, and with immense patience to teach her proper toilet training or how to brush her teeth and wash her face. Every day, my family and I had to persistently teach her, repeating the process over and over again."
Supporting her child's integration into the community has also been fraught with difficulties and obstacles. During her child's elementary school years, for various reasons (including discrimination), she was forced to change schools about 10 times. When her child reached adolescence, worried about her child's inability to protect herself and the risk of sexual abuse, she had to make the agonizing decision to move her child from an inclusive education environment to a special education environment.
|
Workshops and exchanges of experiences between autistic individuals and society to foster a shared understanding of autism spectrum disorder. (Photo: Provided by the Club) |
To become the optimistic, strong-willed, and inspiring person who helps many parents of autistic children that she is today, Ms. Hanh also went through periods of emotional "breakdown."
“There were periods when, looking back, not just me but the whole generation of parents with autistic children at that time felt emotionally devastated. Back then, everyone had aspirations and dreams, but having an autistic child meant putting everything on hold, and difficulties piled upon difficulties. At that time, I felt there was no longer any chance to pursue those dreams, and I sank into a very negative state,” Ms. Hanh confided.
However, according to Ms. Hanh, self-awareness is a process. After going through many challenges and hardships, even to the point where there are no more tears left to cry, it teaches a very simple lesson: one must accept one's circumstances and life early on, and accept that one's child has problems that need support. Acceptance here doesn't mean giving up, but rather accepting to find out what skills one's child possesses, or what aspects can still be salvaged, and through that, guide and educate the child.
She recounted: “It all started with a teacher's question, 'Are you at peace? Are you happy? If you're not happy, if you're not at peace, what will you give your child?' This question completely stirred my mind, causing me to change my life entirely, because I wasn't happy, I wasn't at peace. From then on, I decided that I had to live happily. I rearranged my unfinished dreams, rearranged my plans to fulfill them. I rearranged my daily life to be filled with bright spots, from those bright colors, creating positive energy to work with my child during the most difficult times. Clearly, when I work with my child in a peaceful and loving state of mind, my child thrives . ”
Ms. Hanh shared that autistic children rarely experience peace because they have sensory processing disorders, so when they go out into the world, they are often restless, fearful, and anxious. Therefore, what Ms. Hanh wishes for is for her child to be peaceful and happy. But to achieve this, she herself must have happiness and inner peace. Because without these, nothing can be accomplished. From her own experience, it has become a source of inspiration for her to pass on that inspiration to other parents in similar situations.
"Raising and intervening with a child is a long and arduous process, involving significant financial, emotional, and physical effort. That's why I always encourage and share my experience with parents to accept life with an autistic child early on, to stabilize their mental state, and to dedicate time to rebuilding their own lives. From there, they can create a 'lesson plan' for their child and develop a long-term strategy to support them throughout their lives," Ms. Hanh confided.
Recalling the time she went through, Ms. Hanh said that the children who participated in the first Club are now all grown up, over 20 years old. When the parents meet now, they only share smiles of encouragement, sharing, and a maturity in understanding and accepting their children as "different children" after a long period of therapy and integration together.
A national program for people with autism is needed.
Having served as President of the Hanoi Autism Family Club since 2015, Ms. Hanh has recognized the need to expand beyond the club's core activities to include policy consultation. She believes that only through policy advocacy can long-term and sustainable benefits be provided to people with autism. Therefore, the club's executive board actively participates in workshops and policy consultations on disability issues in general and autism in particular, hoping that the government and relevant ministries and agencies will cooperate to ensure the effective integration of people with autism into society, especially in education, healthcare, and career guidance.
|
Ms. Nguyen Tuyet Hanh, representative of the Hanoi Autism Family Club, participated and contributed her opinions at the "Consultation and feedback seminar on some key contents of the planning of the system of educational institutions for people with disabilities and the system of centers supporting the development of inclusive education in the period 2021-2030, with a vision to 2050" organized by the Ministry of Education and Training. (Photo: provided by the interviewee) |
Given the increasing number of children with autism in recent years, and through her own story and that of the club members, Ms. Hanh has always longed for a national program for people with autism, the establishment of specialized schools, job support to help people with autism integrate into society, and support for people with autism when they no longer have family members...
According to her, if the State does not intervene early, does not take appropriate measures, and does not even have specific social policies, then in the future the social workforce will be very thin - both in terms of quality and quantity.
To provide support for families with autistic children, Ms. Hanh hopes that the government will establish local or national vocational training schools that are suitable for the abilities of autistic individuals, with the goal of helping them grow up to be able to participate in production and business activities within their capabilities, thus achieving an independent and meaningful life.
Furthermore, the government needs to play a leading role and encourage the contribution and socialization of human and material resources from the community and families of autistic individuals in building Community Homes (Group Homes) in localities to create opportunities for autistic individuals to live according to their abilities and feel useful and happy with the support of social workers and the community, as autistic individuals have a good understanding of autism and the skills to work with them.
“The club has been established for over 22 years now. The children who were just a few years old back then are now over 20, with the majority of autistic children aged 14 and above unable to continue their education in high school. Our biggest worry is what will happen to them as their parents get older. We sincerely hope that the authorities will provide more appropriate, comprehensive, and sustainable support in career guidance and vocational training for people with autism,” Ms. Hanh expressed.
Comment (0)