By Ali Fung, with content from Shanghai Huaxin Rehabilitation and Education Institution for Disabled Children and help from Xinxin Zhang
When Xiaobao was born in 2010, his family discovered he had anophthalmia; he was missing his right eyeball. At six months, he was diagnosed with brain hypogenesis. A hospital assessment revealed that he had a developmental delay in language, motor, intelligence and psychological growth. In Chinese society, mental illness is still strongly associated with shame and stigma, and as a result of this, Xiaobao’s parents’ relationship became strained, eventually leading to their separation. Xiaobao’s mother took him away to live with her side of the family. Despite many moments of hardship and hopelessness, with his mother’s depression, his grandfather’s passing and his grandmother quitting her job to look after Xiaobao, Xiaobao’s mother finally came across Shanghai Huaxin Rehabilitation and Education Center for Disabled Children through recommendations. This is where the lives of Xiaobao and his mother begin to look up.
Encouraged by other families at the center, Xiaobao’s mother joined the Parent Association for Children with Brain Hypogenesis. Slowly, Xiaobao’s mother began to regain her confidence, as she started to help her son and others in the association through mutual support, encouragement and assistance. The parents support their children through each rehabilitation training each day, watching their children progress. While Xiaobao’s mother works, his grandmother spends her day looking after him. She brings Xiaobao to Huaxin Center every day without fail.
Come rain or shine, Xiabao is never late. He is always the first to arrive at the consultation when the volunteer specialists visit each month. He takes part in all the activities at Huaxin Center, from football camp and Wiser ball games, to the charity run. Xiaobao is now seven years old and he has come a long way. When he first arrived, he couldn’t sit up, crawl, stand up, or walk. He did not respond to others or to the environment around him. He could only say “daddy” and “mommy,” and refused to interact with people, let alone strangers. When he first joined in 2011, he wouldn’t cooperate with the foreign teachers. He cried and cried, lying stubbornly on the floor, as his grandmother looked on helplessly. Huaxin Center’s volunteer specialists never gave up on him. With their continual patience, encouragement and inspiration, Xiaobao gradually began to follow instructions during consultation, and has even grown fond of the volunteer specialists.
Now he can walk independently for a short distance, and when he is emotionally stable, he sits at a table, drawing little pictures and coloring. He can communicate in basic terms with those around him, actively greeting people and waving at them. When he leaves, he says goodbye to each and every person, with a sunny smile and an adorable little wave. At his monthly consultation, he’s learnt to greet the clinicians in English with a “Hello!” and “Bye-bye!”
Xiaobao is also enrolled in Huaxin Center’s special education class. His progress makes his grandmother extremely proud. There is hope that one day Xiaobao will be able to attend a public school. This encourages him to keep making progress to make this dream a reality.
From the eager, determined child to the hardworking, persevering mother and the devoted and caring grandmother, Xiaobao, his mother and his grandmother are all inspirational examples to follow. They are incredibly grateful to the volunteer specialists and the teachers at Shanghai Huaxin Rehabilitation and Education Center for Disabled Children for giving them hope and supporting them each step of the way on Xiaobao’s road of growth.