written by ChenMing Hu
On a December morning in 1976, my wife woke me up and said, “It is time to go to the hospital.” My diary captured some moments in the next 72 eventful hours.
“The obstetrician gave our baby a score of 9 on the Apgar scale, meaning he is in very good condition.” A day later, “Dr. Mills and I sat down besides Margaret’s bed, and he told us that several doctors have examined the baby and believe that he has Down Syndrome………. When we were alone, Margaret started to weep. We comforted each other and agreed that we could cope with the challenge, that life with Raymond would be full and good.” “I decided to call parents in Taiwan again. Their phone was busy the entire evening. I knew that they were calling relatives and friends about having a new grandson……… The call was brief for tears rushed out for the first time in my adult life …… Afterward, I had a good cry. I felt better. I know that I will never cry for Raymond again.” Another day later, “At 6am Dr. Mills called to say that Raymond needed blood transfusion in intensive-care nursery …12 hours later, Raymond needed another transfusion…. another…there is a hole in his heart….”
Having a child with developmental disability is hard for parents, at the moment of diagnosis and during decades of caring for the child’s physical and mental disabilities. The hardest part is perhaps not-knowing what’s ahead, what her life will be like, what happens to him after the parents pass away.
We also keep wondering how hard it is to be that child. This is not to say that we think the child cannot have a happy life. Raymond likes to say smugly, “I am disabled, but I also have abilities.” But I know that he has very hard times, too.
This book is a story about a few persons striking sparks and 10 families lighting a kindling and inviting the community to build a bonfire. Today, this bonfire is illuminating the ways and making lives better for hundreds of children and adults with special needs and their families at three sites in the Southeast San Francisco Bay Area.
Perhaps more importantly, this book, especially the early chapters, is also a guidebook for building the bonfire. It is best, perhaps necessary, to build the bonfire with strong parent involvement, and therefore best done locally.
Chapter 2, The Dream Project, lays out the key concepts. The special-needs citizens should have, beyond their immediate families, a small community where they are respected, loved, and fully accepted. This small community is not a replacement for, but a buffer to the community at large. They live in both communities and can each choose how to divide their time between the two. This small community reminds me of the African proverb “It takes a village to raise a child.”
Like a village, this community needs community space and structures for learning, playing, and being together. Some special-needs adults may require residential facility in this community, where they can grow old with friends and dignity. If public and private financial support is the life blood of this community, one can say that parents serving as board members and part-time executives are the heart and brain, and paid staff are the bones and muscles. One mustn’t forget the community volunteers; they are friends from the larger community to our children.
This story is ongoing. The community started with Chinese American families. Laudably, its staff, clients and board have become multi-ethnic. The transition of leadership and culture from the first-generation parents to a younger generation of parents (of the younger children) is in progress and appropriately gradual. All signs suggest that the community will navigate through this challenge, perhaps the hardest test for its longevity, as it has done so many times before.
One may hope that, with the help of this book (and perhaps its future updates) and an online network of dream builders, thousands of bonfires will shine in the US and throughout the world one day for children with special needs.
– Chenming Hu
FCSN Parent, Board Member 2010-2018, Chair 2016-2018