A journey filled with patience and love.

(Baonghean) - Having visited the Neurology and Rehabilitation Department (Nghe An Children's Hospital) and the Provincial Children's Protection Fund many times to learn about autism, I've always been impressed by the women who hide a profound sadness in their fleeting glances. They might step out of a luxurious car, or hurry along on a rickety bicycle... but behind their footsteps, they always have bewildered children and a heart full of anxieties. Day after day, they accompany their children and grandchildren with all their patience, love, and hope of reaching a miracle...

Many of them were once people who believed they had all the happiness in the world: financial security, a steadily advancing career, a loving marriage, and a large family. Then, one day, they noticed something unusual in their child, who was just learning to eat and talk, and the diagnosis of autism shattered their hearts. They tormented themselves for various reasons, then turned to seeking treatment for their child, putting aside their work and family responsibilities. They avoided the judgmental stares of those who called it "the disease of the rich" to begin a new chapter in their lives: fighting to reclaim their children and bring them back into this real world.

A large number of people walked to show their support for World Autism Awareness Day. Photo: Ho Lai

But in this article, I want to talk about other extraordinary mothers and grandmothers, those who have endured so much hardship and suffering, yet never lost hope because of their love for their children and grandchildren.

Le Thi N. is one such person. Every day, she takes her child to the Children's Hospital on her old, worn-out bicycle, after crossing the Lam River by ferry. Her family lives in a small house on the alluvial plain of the Lam River in Nghi Xuan district, Ha Tinh province. Sometimes I see her, frail and with her mud-stained brown dress fluttering in the headwind, cycling with her child on the wide, noisy streets. She seems lost, as if she's forgotten herself. It's as if the world, for her, is just the small figure sitting comfortably in the wicker seat tied to the front of her bicycle.

I remember the story told by psychologist Tran Thi Huong Nhai from the Mental Health Unit, Department of Neurology and Rehabilitation at the Children's Hospital: When she carefully explained to Mrs. N. and her husband about the "illness" their son, Ngo Le KH, had, the father suddenly burst into tears: "We have nothing left to lose!" Mrs. N. remained silent. The mother received the news with a heart that turned to stone. During her pregnancy with H, their first daughter died of a brain tumor, and their second daughter was born with Down syndrome. H was their son, the only hope of this poor farming family whose lives revolved around fields and rivers. When H was born, they thought God had compensated them, that their family had been reborn after so much misfortune... Until H turned two years old...! "He seemed different from other children, preferring to play alone. He often walked on tiptoes, occasionally spun around, refused to speak, and avoided eye contact with his mother even when she was talking to him..." - Ms. N recounted. Then, ominous premonitions returned. The worry about his illness was nothing compared to the sadness she felt seeing her child so indifferent and seemingly unable to understand her feelings and longing. Before coming to Nghe An Children's Hospital, Ms. N and her husband had never even heard of autism spectrum disorder.

Then, having understood everything, she hugged her child tightly on the way home. The mother's heart was devastated, like after a storm. The sleepless nights had to pass. She pulled herself together and resolved to help her child get treatment. For months now, from early morning, the mother wakes up on the ferry and rides like a lost soul on her rickety bicycle through the city. Despite the wind, the rain, and the biting cold, people still see those two small figures together. She patiently listens to every lecture, and together with doctors and specialists, teaches her child to see, to listen, and to find joy in every game. And the overwhelming happiness of that mother is the first meaningful words uttered from her child's lips. A simple happiness for so many mothers in the world, yet for her it was so difficult and immense!

Also present at the Children's Hospital was Mrs. Nguyen Thi Th., the grandmother of Hoang Phuong Ng., a 4-year-old boy from Thai Hoa town. Ng. was born to a mother with intellectual disabilities, and his father's identity is unknown. When Ng. was 38 months old, Mrs. Th. noticed that he often mimicked words, talked to himself, and didn't know how to answer questions. He also became irritable, self-harmed, indifferent to others, and did everything according to his own will. Since being diagnosed with autism, Mrs. Th. has been taking him to Vinh by bus every month and renting accommodation to accompany him during treatment. For two months, the two of them have been "going to school" together, and just the other day, she shed tears of joy when, on the way home, Ng. started chatting happily in the back of her car and even got toothpicks for her after meals. She shared: "Even the smallest progress my grandchild makes brings great hope to my heart. And with that hope, I don't mind anything anymore...!" Despite being constantly ill and worried about "leaving her grandfather and mother at home for too long," Mrs. Th. believed in the future and remained steadfast beside her beloved grandchild.

Two other grandmothers also accompanied their grandchild: the paternal and maternal grandmothers of Nguyen Tran Khanh Ng. (Do Luong). At birth, Ng weighed only 1.7 kg. Her parents are factory workers in Binh Duong. Just four months after birth, despite being weak, she had to go to daycare so her parents could go to work. When Ng was nine months old, although they loved their child, Ng's parents had to take her back to their hometown to rely on both sets of grandparents. When they noticed her unusual behavior and she was diagnosed with autism, the journey of the paternal and maternal grandmothers to Vinh began again. The two grandmothers, their hair already graying, having spent their long lives toiling to raise their children, now shouldered the heavy responsibility of caring for their grandchild "so that her parents could focus on providing for her." Each small step forward for the child led to a long-distance phone call to her mother in Binh Duong. These calls were filled with tears of longing, joy, and hopeful anticipation...

It's also the story of young mother Nguyen Thi L. (from Vinh City, working in Can Tho) who had to quit her job for two years to take her child to the Nghe An Children's Protection Fund for therapy. It's also the story of Ms. Phan Thi M, mother of Phan Hong Q (Thanh Chuong), Ms. Ngo Thi Th, mother of Vo Khanh H (Vinh City)... and many other mothers and grandmothers. They faced seemingly insurmountable pain, yet they rose from that very pain with boundless love for the little children they or their own children gave birth to. "It is this immense support, along with their patience and perseverance, that has helped us succeed so much in treating autistic children," Ms. Huong Nhai confided. Having worked with autistic children for many years and witnessed firsthand numerous tragedies and family breakdowns caused by the "sentence" of autism, Ms. Huong Nhai always reminds herself to carefully consider each diagnosis she makes for children suspected of having this syndrome. She also hopes that families and everyone else will have a better understanding of autism so that children with this syndrome can integrate into the community early. Early detection is crucial for early intervention and support through appropriate educational and therapeutic methods, minimizing the difficulties encountered in a person's development.

According to Ms. Ton Thi Tri, a Master of Psychology from the Counseling, Guidance, and Treatment Department for Children with Autism Spectrum Disorder at the Provincial Children's Protection Fund: Currently, the rate of autism spectrum disorder is 1 in 150 children. There are approximately 160,000 children with autism in Vietnam, of which Nghe An province has over 100 detected cases, and this is still only a small number in the community.

Despite having a significant number of autistic children, Nghe An province still lacks an organization that brings together families with autistic children into a club for exchange and sharing, as Hanoi has done since 2002. The club's practical activities—thematic talks, experience sharing, knowledge education, launching movements like walks for autistic children, and music events for autistic children—have had a positive impact on each family and have fostered societal concern for autistic children. The community's attention and understanding are crucial, ensuring that the families of these children, especially the mothers and grandmothers mentioned above, no longer feel alone in their patient journey.

Thuy Vinh