Category Archives: Medical Education

Bumper cars and more

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As our fledgling foster program grows, one of our goals is to provide a community for children and their foster parents, where folks can have fun together and connect with those who understand their situation better than most.

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This includes outings in the parks during warmer weather (which we are all longing for now…), with volunteers coming along to toss a ball, sit in a bumper car, or chat with the adults.

These outings always have an element of surprise, like most things do in China.

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This particular time, I was hanging out with some people when a lady came across the lawn with her baby and her mother.

I recognized the child as someone I had seen in the clinic a few weeks earlier, to assess some developmental delays and provide some input.

I wondered aloud how on earth they ended up in our gathering, and a foster mother standing next to me said she met the family on the street one day and struck up a conversation since they both had a child with special needs, and had invited her to the park outing to meet some other nice people and share about the source of her joy and faith.

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I was thrilled to see this young mother, who had moved from another province here with her child and mother to work, engage in conversation with her new friends.

Unfortunately parents who have a child with a disability here are often greeted with blame and feel intense shame because of their child’s condition.

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The stigma is very tangible.

One person told me that a family lives in their apartment building on the first floor, and they have a son about 20 years old who has a developmental disability.

She said the parents only take their son outside after dark so they don’t have to face the looks and comments from their neighbors.

For 20 years.

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Maybe our efforts are very small, very grassroots, but we believe that in the apartment complexes and neighborhoods and parks where these brave men and women live who have taken in an orphan, even one with a “problem,” can be the stirrings of change.

Already we see the fruits of people encouraging each other, and connecting with others who are struggling.

Last month some parents who have children with cerebral palsy (not orphans) attended a support group meeting hosted by another group in town doing outreach to these families.

I attended, as did two of our foster families who are both caring for boys with cerebral palsy.

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The most poignant moment of the day was when a mother of a girl who had been born prematurely, turned to a foster mother and said, “You’re so great, choosing on your own to care for such a child.”

The foster mother responded fervently, “You’re the one who’s great, since you chose not to abandon your child to begin with but decided to keep her.”

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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.

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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.

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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.

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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!

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Mosaic

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Look closely.

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The beautiful tapestry of our little local orphan care community.

This month two of our beloved children are finally joining their forever families.

Bittersweet tears were falling at our foster family support meeting yesterday as Chinese foster moms saw the face of one adoptive mom here to pick up her child.

I read a quote recently.

“In general, to “do justice” means to live in a way that generates a strong community where human beings flourish. Specifically, however, to “do justice” means to go places where the fabric of shalom (peace) has broken down, where weaker members of societies are falling through the fabric, and to repair it…How can we do that? The only way to reweave and strengthen the fabric is by weaving YOURSELF into it. Human beings are like those threads thrown together on a table. If we keep our money, time, and power to ourselves, instead of sending them out into our neighbor’s lives, then we may be literally on top of one another, but we are not interwoven socially, relationally, financially, and emotionally. Reweaving shalom means to sacrificially thread, lace, and press your time, power, and resources into the lives and needs of others.” ~ Tim Keller (Generous Justice)

Seeing this tapestry in process in front of my eyes is humbling and proves to me, yet again, the existence of the Master Weaver–He is the Creator of the pattern and knows what the final image will look like.

We can choose to obey and be one small, yet essential thread of His masterpiece.

The finished product is more astonishing than we could ever imagine.

(I am trying something with WordPress for the first time, participating in this week’s writing challenge).

On Seeing

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ZZ was blind and the orphanage asked if we could find a foster home for him back in January.

He also could not roll over, sit, stand or do anything else a 2 year old was supposed to do.

They thought he had cerebral palsy, like most other kids who grow up untouched and unstimulated in orphanages, with resultant developmental delay.

No workup had been done on him, to our knowledge.

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We found out he had congenital cataracts and indeed was somewhat responding to light, so the doctors deemed him a candidate for eye surgery.

Then we found a heart murmur, with a resultant heart defect, and they wanted to fix that first, and then wait a period of time before fixing his eyes.

We’ve also found out he has no hearing, but is a candidate for cochlear implant surgery.

In the meantime, he has been receiving lots of one on one attention, and daily exercises to stimulate development.

He has progressed to standing, pushing a toy to walk, and reaching out to play with things on his own!

I am fairly convinced he does not have cerebral palsy at all, but has significant delays due to the combined visual and hearing impairment, plus the overall lack of environmental stimulation due to institutional care.

So finally in October he had his eye surgery, one eye each time, one week apart.

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Inpatient the whole time (10+ days including the pre-op and post-op mandatory hospital stay here), with around the clock babysitting provided by his foster mother’s church group.

Now he is getting visual stimulation therapy, which includes holding a blinking light in front of his eyes to train him to focus on it, and stimulate that dormant area of his brain.

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So far, he is liking it!
He’s even trying out new positions, just for show!

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Premature Ponderings

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Sometimes things just creep up on you and suddenly you realize, this is a huge deal.
Why did it take me so long to notice this particular thing going on all around me?

So you pitch a fit (whether audible or just in your mind) and get all puffy.
Break out the chopstix STAT!

In this instance, it suddenly truly sinks in how prematurely born infants are handled here on a global scale.
In general, most parents who give birth to a preemie cannot see them in person, touch them or hold them until they are discharged.
Often a mother’s breastmilk is not deemed acceptable for various reasons and the babies have no chance to get the best stuff even if the mom really wants it.
Etc, etc.
Shocking, right?

And then just as you start to operate in your high-and-mighty expat mentality–“how on earth can this stone age approach be acceptable in this modern world, I’ll tell them what’s what”– you catch yourself.
Hopefully before you’ve done too much damage.

You open your eyes, ask a lot of questions, and read.
You listen, read and ask more questions.

You learn that this was exactly the case in the good ol’ United States not so long ago–well within your, ahem, young lifespan, and to some extent, your own (even younger) career.
The same fears, concerns, issues.
Fear of infection, concerns that parents will get in the way of the staff.
Incentives by formula companies to promote certain unmentionables to new moms.

And you dig a little more, and realize that while the US was building new NICUs that had parent beds and private rooms, this country was just recovering from political chaos of decades++ and there was not even portable oxygen available 20 years ago.

A preemie had no chance at all.

In the interim, babies who had no shot at life at all and were deemed “stillbirths” at 28-30 weeks, are now surviving and their odds are improving from year to year.

Wow then. Curb the rabid mutterings of a wild-eyed child advocate.
Fresh perspective here.

So thankfully, by the time you walk into your lecture with about 25 young doctors at a Women’s and Children’s hospital, you’re a little less judgmental, less critical and a lot more ready to have a real dialogue with your audience.

[switch to first person]
And we truly had some good dialogue going.
I buttered them up with a lot of factual slides, loaded with statistics (which any self-respecting Chinese student expects) and peanut butter chocolate chip cookies.
Homemade.
Thanks to social media, I had received photos from many moms with their infants in the NICU in other countries, touching, holding and feeding them.
I ended my lecture early, and surprised the class with having them break up into small groups to discuss a few questions in depth.
There was a lot of mutual learning taking place as I heard their perspectives, and they wrestled with new ideas in this context, perhaps for the first time.

Now then.

This was really not about preemies (although it is) as much as it was a reminder to me of how reflexively I slip back into “west is best” mode, even when I think I am being openminded and receptive.
How do I keep that kind of attitude from coloring my interactions with people I want to truly connect with?
Even if my words are ok, my attitude speaks so much louder, especially in a culture where everybody is trained from infancy to recognize nuances of body language that are invisible to most westerners.

One of my mentors, Dr. Karen Olness, always says effective cross-cultural communication demands that we enter any new situation as a learner, regardless of hierarchy.
If we forget we are learners, we risk losing the opportunity to understand what is going on.

China has in many ways astounded the world with rapid progress in many areas.
I believe the story has not yet been completely told regarding preemies in this context.
I’m just privileged to be stepping into the middle of it as it unfolds here.

Hidden Treasures

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Our medical team had a new type of outreach this week.
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We had some extra medical visitors in town, including a dear pediatric colleague who lived here for 2 years and there was an opportunity to go to a smaller city about 3 hours away to a special needs school.
This school was absolutely phenomenal.
We saw a total of about 60 patients, with 5 residents/recent graduates seeing the patients and N and I precepting/teaching.
In addition, the children seen that day also all received fluoride varnish treatments and some basic oral hygiene training from our team.

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I was struck by the parents’ hunger for information on how to help their kids learn and thrive.

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Some have received a diagnosis and have no idea what it means.
Others have no diagnosis, just are told their child is “delayed.”
I asked many of the moms and grandmas whether they felt like having their child at this school had made a difference.
The answer was an overwhelming YES.
Countless times we heard that prior to coming here, the children were unable to walk, or talk, or do much for themselves.
Now, 6 or 12 months later, they can!

This boy was being hauled up to the 4th floor by his grandmother every day, her lifting him under his arms.
And he’s not a tiny kid.
In the past months, he can actually climb all the stairs by himself, holding the handrail.
They were both beaming with pleasure, and I had tears in my eyes.

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I was blown away by whatever the teachers and therapists are doing.
Perhaps not all according to our ideal US standards–they are eager to have colleagues come and do more teacher training and therapy training–but they are certainly already making a huge impact on these families.

I was reminded of the fact that 85% of people living with disabilities are in the developing world.
And 98% of children with disabilities have no access to education worldwide.

(for more, read Unicef’s report on disabilities here)

I have certainly found limitations to education here in our city–for one, pretty much anybody with a disability cannot attend the regular school.
Each district has a public special needs school but there are reportedly tuition fees that many families cannot afford, even if distance is not an issue.
But I am still learning about that issue, so cannot wax too eloquent yet.

In any case, this particular school is a bright spot in their city, and we are looking forward to our next trip and planning more targeted educational and medical interventions.

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