Category Archives: Vulnerable children

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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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.

 

 

 

How about another one

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A friend recently told me about a mutual Chinese friend who has a baby close to a year old.

She and her husband were not going to celebrate the Chinese New Year (THE important family holiday in China) with her relatives because most of them don’t know that this is her second baby.

Although the one-child ban has eased to two as of recently, their child was born a few months too early, thus putting her husband at risk of losing his job if the second child is found out.

Being a mother of many children, I think about the anticipation of each pregnancy (once I adjusted to the shock), and the joy that the arrival of each one brought.

How friends, neighbors and family all rejoiced together.  How they helped with the older ones, and shared stories, brought meals, lived in community with me.

But this precious woman (and man) have kept not only a 9.5 month pregnancy a secret–they also moved to a new neighborhood around the time of birth, and they are now wrapping up their second year of keep a major life event a secret from important people in their lives.

How on earth can you not slip and tell a funny story about your baby? How about pictures on your phone?  Buying baby supplies at the store?  How does the older preteen sibling keep his/her mouth shut?  I cannot even imagine the ramifications.

I am struggling to comprehend this kind of forced secrecy.

Yet, I just read another article on the topic today, and thought I’d share.

People around me everywhere were in their childbearing years in this era.

Not just my young newlywed friends, but my friends with one grown child.

How many of them have a similar story swept under the carpet, suppressed as a forbidden topic?

I have no idea, but I do know that when I go through the city with my little group, the first question is always, “Are they all your children?”

Sometimes I imagine a hint of wistfulness as they examine each child, decide who’s the fairest, who’s the most beautiful, who’s the smartest, who’s the most hyperactive.

I catch their eye and smile gently, but always with an awareness that there is more under the surface.

 

 

On being found

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Papa Chopstix, Big Z and I took a little field trip this weekend.

Armed with an address from his orphanage file, a camera and Google maps we rode the subway to find the location where he was reportedly found shortly after birth just over 2 years ago.

As we came up to street level and looked around, we noticed the train station, a large bus depot and several large shopping markets in the area.

We ambled down the middle of the street since the sidewalks were crowded with vendors hawking tea eggs, corn on the cob and other traveler’s snacks, and found a building with the correct number on it.

“Found on the second floor,” our information had stated.

The building was a medium sized hardware/electric market, which means several floors of narrow aisles and dozens of tiny stalls and counters loaded to overflowing with bags of screws, coiled wire, electrical tools and other things I am not an expert on.

As we rode the escalator up to the second floor, I was filled with an indescribable painful stab in my chest as I wondered who had stood, possibly on that same escalator, with a tiny bundle in a fuzzy blanket and formulating a plan in their mind.

Was it the birth mother (although Chinese tradition dictates she cannot leave the bed for a month), or the father, or another family member or friend? We will never know.

As a mother now five times over, I cannot imagine the thought of leaving my baby for someone else to find.

Although since it was winter time, it seems like they wanted him to be found alive and perhaps allow for a solution to repairing his severe heart defect.

So many factors are at work that are outside the scope of my culture, understanding and imagination.

As I talk to more and more people about children, orphans, disabilities, health care, insurance, poverty, education….it only serves to make any quick pat answer seem trite and shallow.

But my heart aches for somebody who carries the burden of this secret around forever.

I have never met a person who told me that they abandoned their child.

It’s probably not dinner conversation for most.

Our joy in loving this special boy is intertwined with the harsh reality that somebody else’s heartache permitted it to happen.

We asked a couple of shopkeepers standing around, and even a guard, if they knew of a baby that had been found in the given time frame, but nobody seemed to quite understand the question.

We didn’t push, and wandered back out into the bright sunlight and noise of traffic, bus horns, and cute puppies for sale.

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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Migrant Children

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Our humble medical team made our first foray into the world of China’s migrant children last week.

In China the household registration system prevents children who are not living in their “registered district” (i.e. parents’ hometown) often have limited access to health care benefits as well as public education options.

Unicef has a brief overview about this here and the Wall Street Journal gives more in-depth coverage here on the plight of millions of Chinese children.

In China, people moving away from their place of registration are considered migrants even though the term is referring to Chinese citizens, not foreigners.

In fact, these construction workers, restaurant staff, and manual laborers might as well be foreigners, in many cases.

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Their health insurance (limited though it may be) is often invalid outside their local area, and their children may not be able to go to health stations for free vaccines. They may need to pay more money to enroll their children in a public school, if they even are permitted to attend without a local registered address.

Many kids end up living with their aging grandparents, often unprotected from predators in their villages, and seeing their parents at the Lunar New Year if they’re lucky, when the entire country boards a train to go somewhere far away and clogs the travel arteries around the nation for 2-3 weeks.

Recent updates to the previously strict anti-migration laws are allowing the possibility of children living with their hard-working parents, albeit in difficult conditions, in more urban areas.

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So what does this mean for us here in our 9+ million city in NE China that you’ve never heard of if you don’t live in China?

Another Chinese NGO has been doing wonderful things in our city with some of the in-between children who have come in from the countryside to live with their parents, and we were invited to partner with them in addressing health issues.

We visited two preschool-kindergartens on opposite ends of the city, driving down small bumpy alleys past halfway-done modern highrises on one side of the road and demolition rubble on the other.

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In between is a rapidly shrinking zone of small one story homes, fruit trees and corn on the cobs drying everywhere.

We entered the first school to a group of about 45 fairly subdued 2-5 year olds.

They lined up quietly and waited for their turn with one of the doctors, a few cried but most were fairly unemotional.

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My new friend Jiang the NGO worker told me that these particular children are living with both parents (if only one parent were working in a site, the child would like stay behind in the village with grandparents), they are fed two meals a day at the school and are picked up around 6-7 pm after the parents get off work.

At the second school, which had less than 20 students, I was told that some of the children would stay all night at the school (also the director’s home) for days at a time if the parents were gone.

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The children at school #2 were a lively bunch, with one kid whispering English words to me non stop, and the youngest, a little 2 year old, playing peekaboo.

Two girls gave an impromptu recital of a number of songs/poems they had memorized and others chimed in as able.

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We found a few things of medical significance, and plan on coming back to do fluoride varnish treatments and oral hygiene teaching.

As is not unusual in so many of my rural clinic experiences, children in the poorest, most outlying areas starved in every other way often have terrible oral health with numerous cavities.

It seems like even if real food is scarce, there are always pennies available to buy candy.

When we went to Cambodia this was rampant, with the dentist on the team commenting that he would term it an oral disease epidemic, and was pulling out horribly abscessed teeth right and left on preschoolers.

Then there is the problem of the compassionate volunteers who add fuel to the fire and send mixed signals, so while the doctors and dentists are preaching “no sugar” on the inside, the rest of the team is passing out candy on the outside.

As an aside, if you are involved in short term teams, please leave the candy behind and pass out stickers, little toys or books instead to be a part of the solution instead of the problem.

The best part of the day was the wonderful book distribution, funded by a local business who gave us a large donation recently.

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Even this gave me another eye-opening moment.

As a huge Reach Out and Read proponent in my US clinic days, I was thrilled to see the kids paging through books, looking at pictures, and jubilantly shrieking at the stacks of books being passed out.

I asked my NGO friend whether the parents could be encouraged to read aloud with their kids in the evenings, for maximum impact in the social, emotional and academic realm.

She told me that they were worried that with the cold winter looming, that anything flammable would likely end up being used as heating fuel at some point so the plan was to leave the books at the school so teachers and volunteers could read with the children.

I mentioned this to my young colleagues, who all said, “oh no, they wouldn’t burn books.”

I don’t know who’s right: the NGO worker or my urbanite co-workers.

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