I continue to be flabbergasted by the lack of adequate and accurate health information regarding children with disabilities that families can access here, in my anecdotal experience.
This hunch has been supported by national statistical data in China along with more in depth research (http://www.ncbi.nlm.nih.gov/pubmed/23614374).
April was Autism awareness month in some places around the world.
Another charitable organization here in town was presenting Saturday morning day camps at the Little Turtle School for Autism, for families who have a child with autism, with 3 groups of about 20 children each time.
They invited me to give a medical talk to the parents while the kids were doing fun activities with a host of volunteers, so I recruited a couple of our Chinese family medicine doctors-in-training to co-teach and translate for my portion of the lecture on sequential Saturdays.
[I must admit although I can speak semi-decently on a number of topics in conversation, I still feel very insecure about public speaking in Mandarin so that didn’t happen. Maybe soon.]
We gave our presentation, a basic overview of diagnosing and treatment interventions for autism, as well as age-appropriate suggestions, and were (as usual) bombarded with questions afterwards.
In observing the kids, a couple of us were wondering if all of them truly had autism according to formal diagnostic criteria, but regardless, they had some sort of learning or behavior need and were receiving support and interventions that were targeting gaps and in many cases leading to improvement.
I was especially moved by the parents of the older “kids” (ages 15-25 years) who I was with the second time.
There is so very little available in terms of education, vocational training, or family support for kids older than elementary age here, and I could tell that every single parent in the room wanted desperately to do the best for their beloved child.
One of my Chinese friends told me recently about her first-floor neighbor who has an adult child with some form of developmental impairment, and they only take him out into the courtyard for fresh air after dark because they are so ashamed and hate to hear people’s pointed comments as they go by.
The rest of the time he sits on a bed in their apartment, while the parents sell snacks out the front window to eke out a living.
She said it has been like that for many years for this family, living in the shadows of society.
There is progress being made, with the Disabled Federation at local levels providing support and services, but the need far outweighs the resources, and rural citizens have the least access to anything at all.
With the aging population crisis, coupled with dramatic rises in diabetes, obesity and cardiovascular disease, congenital and acquired disabilities will continue to rise over the next decade.
Ok, enough depressing info.
I am so thrilled to be somehow involved with this work on a very grassroots level, and we have some awesome friends, colleagues, teammates and partners with visions to address these issues in a tangible way.
Come and help us!