The YangAi Parent Club Guangzhou, China, invited a family with a Down syndrome child to visit and meet with families and professionals at their center. The YangAi Parent Club is attempting to connect families to families. Therefore, they invited the Ball family: Douglas, Jane and daughter, Caroline, to visit their center. Plans are underway to invite a Chinese family with a Down syndrome child to visit North Carolina sometime next fall. In addition, I was invited to present a workshop on Down Syndrome: Education and Communication to the YangAi Parent Club families. Along with my colleague, Dr. Grace Hao, we have a long-standing relationship with the YangAi Parent Club. The Parent Club is helping to standardize Dr. Hao and my Chinese version of their Developmental Scale for Children with Down Syndrome. The Club is also assisting in several other research investigations with Dr. Hao and myself. Either Dr. Hao or I travel annually to China to assist families and professionals with family needs.
Following is a letter written by Jane Ball, recollecting her family’s experience in Guangzhou, China. This letter was originally published in the Triangle Down Syndrome Network newsletter, which can be downloaded from their web site at TriangleDownsyndrome.org.
– Dr. Thomas Layton
TDSN parent Jane Ball shares her impressions of China:
My expectations for our China trip were somewhat skewed by the life we are afforded here in the U.S. I knew it would be different, but never having been to a country anywhere near the size of China, I was way off.
If you’ve been to Manhattan, multiply the scale of that by 100,000! Minimum 25 story buildings side by side, back to back, on tiny areas. There is no green space unless you can afford the penthouse and a luxury roof-top garden. Then, for the smaller cities, these buildings house roughly 16 million people.
I think we saw at least that many people on the streets looking at us, as we are two blue eyed blondes pushing a jogging stroller carrying the Queen, Caroline, the freckled redhead with Down syndrome. You think we stood out??? I noticed one teen-aged girl with DS on the street in Hong Kong walking hand in hand with her mom. I saw no other individuals with any type of disability on these crowded sidewalks.
We left Hong Kong by train to meet Dr. Layton in the city of Guangzhou, population 21 million people. Meetings with other families at a special school had been arranged two days of our trip. When I informed them that I had a prenatal diagnoses of DS and a heart defect with Caroline, you could see the shock on every one of their faces. The termination for any disability is most certain. China does not offer anything as far as services, public school, etc. like we experience here.
They do not take their kids out in public. Only one of the families that we talked to actually had a diagnosis at birth; the rest found out months and up to two years later, after realizing themselves there were developmental delays. Once diagnosed, most did not tell their extended family that they had a child with DS. I explained that this was not our practice in the States, given that we rely greatly on the support of our family and friends. Unfortunately, the evolution of China is decades behind our way of thinking that every child deserves every opportunity.
Caroline totally showed off for these parents and professionals. She worked the iPad, sang songs for them, even put one mom in time-out. I know that they were definitely entertained, and hopefully left there with a different perspective on the education/communication level that their kids are capable of. Definitely worth the trip!
Thanks Dr. Tom.