The Story of Our Beloved Son, Hei
From Discovery to Acceptance
This coming March will be our son Hei’s ninth birthday. He is now a student in the second grade.
Looking back on his earliest years, Hei had always impressed us as a calm and serene baby. He had a beautiful smile, rarely cried, and was a joy to look after.
By his third birthday, however, we began to notice that he still wasn’t talking and that he showed poor eye contact. Our concerns prompted us to arrange two independent developmental evaluations for Hei. One of these evaluations was through a private organization and the other was through the local government’s child assessment center. Results of these assessments confirmed our worst fear—that Hei exhibited features of autism spectrum disorder.
As parents, it took us time to accept this news about our beloved child. Fortunately, we feel blessed and grateful for our faith in God, which was what helped us get through the initial period after diagnosis and through our darkest moments. Faith led us from the bottom of the dark valley of fear to taking positive steps towards advancing Hei’s development. We were extremely conscious of the need to act early with the period of three to six years being a critical window for intervention for children with autism.
With the wait for public intervention services here being a year at minimum, we were anxious to start something effective for Hei as soon as possible. In the interest of earliest possible intervention, we immediately secured private pay services for him. In the mornings, Hei received individual developmental intervention from a preschool teacher. In the afternoons, he attended a mainstream kindergarten. This particular kindergarten is not a particularly sought-after school in our neighborhood and did not have any special education provisions for children who presented with special needs. But we were happy with our choice because we appreciated the teachers’ endless patience for Hei and the school’s acceptance of kids who were special.
Further, bearing in mind that children with autism struggle in the social skills area and Hei is an only child, we deliberately worked on constructing a “social world” for Hei using our own family and community resources. For example, we connected him with the Sunday school community, neighbors, cousins, and kindergarten schoolmates in the hopes that these community connections and related activities would pave the way for his social development.
After a year of relentless intervention, Hei was in his second year of kindergarten. We also received word from the government regarding educational placement options for Hei. We were offered two choices:
- Attend an “integrated” placement at a mainstream kindergarten; or
- Continue attending a general education kindergarten and receive developmental intervention from an Early Education Training Center (EETC) outside of school hours.
After much deliberation, we decided to keep Hei at his old kindergarten and bring him for intervention at EETC after school. We made this decision because after a year at his kindergarten, he had grown accustomed to his surroundings and had built positive rapport with his teachers and classmates.
However, we soon found that the quality of EETC services was inconsistent and the quantity was limited. With Hei’s developmental needs in mind, we decided to seek additional services through private channels, including clinical psychology consultation, occupational therapy, music therapy, and social skills training groups. This school and intervention schedule had transformed our Hei into a very busy little guy and our family into a hectic unit. Mom had also changed from working full-time to half-time to eventually sacrificing her career altogether to dedicate all of her time and energy to caring for Hei.
During the third and final year of kindergarten, we felt that although Hei had made considerable strides in his development, he was not yet “ready” to start primary school. After some deliberation, we decided to have him repeat the last year of kindergarten so that we could “buy” more time to better prepare him for primary school. But here we ran into an awkward gap in terms of government subsidized services. Because all EETC services came to an automatic stop at age six and new subsidized support services did not begin until Hei began primary school, we had no choice but to rely on private pay services during this year.
In 2009, Hei finally graduated from kindergarten. We attended his graduation ceremony with his classmates. He performed in the graduation musical, sang a graduation song with his classmates on stage, and triumphantly received his diploma from his teacher. We applauded his achievements with pride and a rush of mixed emotions in our hearts. It was as if our Hei had completed a major developmental stage in his life. We felt blessed and grateful for all of his achievements!
From Kindergarten to Primary Years
In Hong Kong, government aided schools are divided into two categories: mainstream schools and segregated special schools. Although certain mainstream schools offer partial integration, these schools typically have limited resources because they don’t have enough students. We carefully weighed our priorities for Hei and finally decided to pursue the mainstream option because we wanted him to learn important age-appropriate social and developmental skills from typical peers. We were acutely aware of the demands that this decision would place on the family, but we believed this was a major and necessary step toward preparing Hei for inclusive community life.
Currently, Hei is attending second grade at a government aided mainstream school where each student with special education needs (SEN) receives a package of support services worth anywhere between HKD $10,000 to $20,000. They also receive additional speech and language therapy. It is up to each school to decide how to utilize the subsidy. In some instances, schools will hire teacher assistants, hire external professional consultants, and organize group activities. In Hei’s case, he is now being offered a 35-minute session of speech therapy once every two weeks. He received eight sessions of attention training during his first year at the school. One can easily spot the limited nature of these subsidized support services!
Fortunately, Hei quickly settled into life in primary school with support from his class teacher and shadow teacher. He more or less grew accustomed to the school’s routine and rules, and built rapport with his classmates. Although he has enjoyed playing with his peers since his kindergarten years, Hei still needs considerable guidance in terms of the specifics of social interactions and diplomacies of friendship building. We think his greatest challenge at the moment is to overcome attentional difficulties and catch up to grade level in his academic coursework. At present, despite the Hong Kong Education Bureau’s guidelines regarding instructional methods for students with SEN, we are seeing much variability and inadequate resources across schools. Moreover, we feel that the guidelines are too generic and the schools simply don’t offer individualized and streamlined curriculum modifications specific to Hei’s unique learning needs. Consequently, Hei must spend a great deal of time on homework and revisions, thus compromising time available for varies therapies he has been receiving since his earlier years.
As parents to a child with autism, we are always battling with time, energy, and resources. But our utmost priority is to advance our child’s development and ability. To this end, we will give anything and everything. For our son, we feel all of our efforts have been worthwhile.
We thank God for the many people who have appeared in our lives who we call “angels.” Not only have they embraced our Hei with acceptance, tolerance, and concern, they have also provided insurmountable support to us as parents. Because of our angels, we feel that we are never truly alone in this lifelong journey against autism with Hei. At the societal level, however, autism is still a lesser understood phenomena that will certainly benefit from improvements in terms of public acceptance and support.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.