Tag Archives: china

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.

 

 

 

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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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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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