Category Archives: Medical Education

Year in review: our broader life

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January:  delivery of some of the hundreds of footie pajamas we transported from generous donors in the US.

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February: I love the red associated with Chinese New Year!

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March:  3 wheeled cart transporting a sign

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April: early morning run in Shanghaiimg_2557

May: Our occupational therapist visitor has a message from KFC “It’s not that bad” as we embark on an outreach to children with autism; we begin our English class outreach to minority children.

June: We tried to to go North Korea, but the door was closed and the boat was leaky, so we had to be satisfied with the view across the river.

July: our local dancing grannies, puppies on a ride, and two fathers helping their children during the talent show at the weekend camp for kids with disabilities.

August: Reindeer wedding.  Enough said.

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September:  Chinese history and culture–Big Z’s favorite page in his brother’s 3rd grade reader.  This scene is from a story about a teacher who sacrifice his life so that his students could have books during wartime. We also had another visit from an expert in children with cerebral palsy giving pointers on positioning.

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October: dried vegetables hang everywhere in anticipation of a long winter. Plus, it’s time for a cut and shave.

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November: Thanksgiving came to the minority neighborhood as an awesome group of volunteers put on a feast and entertainment.

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December: Foster parents, their kids and friends watching talent show performances of fellow foster kids. Plus, even on a blustery Christmas Day, it’s never too cold for a cut and shave.

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5th annual fun run for foster care

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Despite early morning downpour from a typhoon somewhere in the region, a huge number of adults and kids showed up to run 5 and 10K on Saturday morning! 



With amazing help from about  75 volunteers and several key sponsors, kids of all ages were racing, playing games and getting faces painted while adults helped fund the bake sale donations and cheer on the 150-200 runners. 



Life in China is always a bit unpredictable but everything came off even better than we had hoped for! 


My favorite moment was when Timotai crossed the finish line after running the whole 5k with his foster mom, despite legs that are kind of awkward from cerebral palsy.  This boy could not even sit up 7 years ago when he first came into foster care at age 7. 


Another highlight was when current and former foster kids handed trophies to the winners of the races.  


I saw many people very moved by the enthusiasm of the children, and I feel like the moment captured the essence of the reason for this event–to demonstrate that kids have inherent value and deserve a loving family–with or without disabilities.  

Of course, it was also fun to announce the second place of women’s 5k as my oldest daughter!  


Back for more fun next year! 

Talent, tears and water balloons

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Talent, tears and water balloons

An awkward yet beautiful dance, an off-key song, a child stumbling into his father’s arms … these are the images emblazoned into my (Papa Chopstix’s) mind after being a part of a Joni and Friends Family Retreat.  An elegant old hot springs hotel in the quiet countryside provided a perfect backdrop for refreshing activities for 30 children with disabilities and their parents.  With tears welling up I thought, “These children and their parents are my new heroes.”  What these families do day in and day out is truly amazing.  For them to have this time of relaxation is very rare.  Joni and Friends combines a service team from the USA with local volunteers and our family served alongside them. Children had various diagnoses including cerebral palsy, autism, Down’s syndrome and hearing impairment, and each one was paired with a volunteer so all the adults could fully participate in the activities.  The activities included consultations with doctors, a physical therapist, a special education teacher, and a professional counselor.  There were lectures, group sharing, all day activities for the children, a carnival, swimming, and the beautiful talent show.  How deeply this weekend impressed upon me that indeed we are all created in the image of God and have inherent value, dignity and worth.

 

 

 

Honesty and truth telling with Chinese characteristics

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Do you want your doctor to tell you everything, right away, as soon as she knows something bad is coming at you?

Take it another step:  who do you want the doctor to tell first: you, or your family?

In the US and other places like northern Europe, the answer to the former is umm maybe now but for sure eventually, and the second one is not even a question with HIPAA laws and all the other ways we strive to protect our privacy.

My experience here in China has been vastly different.

From our early days here (back in the Dark Ages of 2009) we quickly heard about how often serious diagnoses are not disclosed to the patient, but to the other relatives, and they decide when and if to tell the patient.

Of course I was aghast and fumed about patient autonomy, rights, lying to the patient, and more.

There are many questions surrounding this that I can’t begin to answer, beginning with how..and why…and what on earth…and strong adjectives that I might quickly jump to using like insufferable and paternalistic.

However.

A friend was telling me about her father’s recent diagnosis with advanced lung cancer, and how she and her sister want to tell him but their mother does not.

The mother has declined chemotherapy for him and they are telling him that his illness cannot be cured but he should eat healthy foods and take good care of his health.

Every weekend the three adult kids come home with their families and have a good family time together.  The dad says he didn’t have it so good until he got sick.

She is pretty sure he suspects.

My friend says they will go along with their mother because she will be around a lot longer and they don’t want to upset her too much since they have to deal with her.

As we talked and she described their family’s situation I had a sudden a-ha moment.

In the Chinese culture parents take care of children when they are young, and the expectation  is that the children will take care of the parents when they are old and/or sick.

In addition, major decisions about a young person’s life-college, career, spouse-are often all made by the senior decision makers in the family.  When they age, the roles are flipped to some degree.

In the US a big deal is made about living wills, health care power of attorneys, DNR statuses.

We entrust our decision making to our designated loved ones only at the very end of the journey when we can’t make the decision ourselves.

I wonder if the same choice is made but much earlier in the process here-at the beginning of the diagnosis, not at the end of life.

There is an element of trust that seems very deep-trusting that your spouse and children will do their utmost to decide what is best but not only for you but for the family as a whole.

I may not necessarily agree with that method in every regard, but that doesn’t mean it is less valid than my western perspective.

Can family members be loving, honest and truthful without the element of naked and complete disclosure that we value so much in the west?

Can doctors work within this system and still make sure that the needs of the actual patient are met appropriately?

These are some of the bigger cross-cultural issues we are grappling with as we, a group of western-trained doctors, attempt to teach and mentor a  group of young Chinese physicans.

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[random couple in park]

My week in photos

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Accidental shot mid-market run (mangoes and grapes on the handlebars, going to buy vegetables)

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Special time with my girl, painting very breakable stuff (this is our 4th)

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Lecture one morning at college class for students studying to be Chinese teachers for foreigners

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Song lyrics at Sunday morning church

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Junior colleagues and a grandma discussing the kid’s development.  Today was a fascinating observation in cultural issues in (grand) parenting.

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Apricots in season!

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Playing hard to get

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18 months ago we visited a school with over 100 children with disabilities, providing basic medical consultations on some very complicated kids.

We returned last week with an energetic pediatric OT in tow, who was the star of the show for 3 days while she gave presentations to teachers and parents as well as answering questions for up to 4 hours nonstop on the last day.

It reminded me again of the desperate plight of children here with any kind of health condition, but especially those involving physical or mental disability.

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These kids are at such high risk of abandonment, as evidenced by the “baby hatches” which experienced skyrocketing numbers of new arrivals, all with disabilities, as those sites opened up in various cities around China.

The way I see it, getting involved with children still living in the community, albeit marginalized, and somehow supporting them and their families is a form of orphan prevention work.

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Very little, if any, reliable information is available about health conditions like prematurity, cerebral palsy, autism, Downs’ syndrome, etc, and parents have no clue that they can often make a difference in their child’s ability to move, communicate and be a active part of the family.

Physical and occupational therapy are only available in limited quantities and often based on the one-size-fits-all approach.

These kids cannot enroll in a regular school.

There might be some kind of laws in place that say otherwise, but the reality is that the typical elementary classroom has 45-50 children, taught a uniform curriculum with no adaptations available for those who need educational interventions, with the prime objective being the college entrance exam score.

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There are special education schools in some places, but there are distinct criteria for who might qualify to attend such a school, and it is only for a few elementary school years.

The result is an estimated 5 million children growing up with a physical or developmental disability of some kind, with more than half to two-thirds having limited or no access to education, therapy, assistive devices and more.

The hunt for a diagnosis and believing false claims to cure chronic problems drive many families into poverty, if they were not already poor previously.

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This all points toward the very multifactorial issues surrounding orphans and abandonment of children in China.

As I mentioned in a previous post, I was so excited about what is happening at this school.

Children are coming from other provinces to get some basic therapy.

Parents are finding out that their preemie baby with mild cerebral palsy of the legs will indeed, most likely walk before going to school.

They are learning, slowly, how to communicate more effectively with their language impaired child.

The leaders and teachers are the heroes here.

We are hopefully returning in a couple months with another therapist bringing gifts!

Little Beauties

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Yesterday we took our second trip to this absolutely amazing school for special needs children in a small city 3 hours away.

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This school was started ten years ago by two sisters, one of which had a
ten year old daughter with cerebral palsy who could not get any schooling elsewhere.

This problem is very common here, as any kind of disability excludes children from regular school, and only a select few can go to the limited spaces in the official special ed schools in the big cities.

From 9 am until 3 pm, our team of family medicine residents and graduates, a visiting OT and two lowly attendings saw a steady stream of children from 1 to 20+ years old.

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Diagnoses included Downs syndrome, Retts syndrome, congenital deafness, every variant of cerebral palsy, autism, and mystery genetic syndromes with developmental delays.

In contrast to our usual experience in orphanages, these parents and grandparents are highly motivated to help their kids improve, and this school has made an incredible difference for so many kids.

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Currently 100+ kids attend the school, and they are just moving into a brand new building thanks to support from the local chapter of the Disability Federation.

24 teachers, some with special education training and some with early childhood education training help these kids on a daily basis.

After our day’s work, we had one of the best team discussions with the director that I’ve ever been a part of here.

She was eager to know what our doctors observed, and how they could use that to do a more effective job with their families. She took notes on everything that our various team members said, and a number of our group contributed to a robust conversation.

Our awesome visiting pediatric occupational therapist is staying on for 2 more days to do more intense training with the teachers and parents, as well as more evaluations of different kids.

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I can’t wait to hear what she has to say.

This kind of setup for helping special needs kids get what they need–privately run, but supported in part by government funds–may be a feasible model for other smaller cities in China where access to therapy is notoriously lacking.

I have a dream…

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