Tag Archives: special needs

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!

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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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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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Missing Him

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Brothers of a sort

Brothers of a sort

We hosted Daniel, a foster child who is originally from an orphanage in the area, for the month of January as a respite for his regular foster mom.

Daniel has a complicated history, but it includes a lot of self-stimulation that is likely a combination of institutional survival skills on top of possible autism and other diagnostic conundrums.

It was quite grueling for me in the sleep department (he literally woke up nearly every night at 2 am-ish and was up for the day after that), and rather stressful as the rest of the crew still had their daily needs that needed met.

So much that I would describe it as the most stressful month of my time in China, except for the few months after having a newborn in a brand new culture, illiterate and also sleep deprived to the max three years ago.

But despite our night-time adventures, he was actually quite pleasant during the day and our kids became quite fond of him.

Especially our second daughter and China Surprise really grew to love him.

After we returned from our month away, they were begging to go and visit, so the past two weekends we have taken a little family mission to v

isit him and his foster family and play together for a couple hours.

As soon as we entered the door these past two Sundays and the kids began playing with him, he lit up and clapped and really enjoyed himself.

I do not regret a single day of having him in our home, especially seeing the relationship our kids have with him that is continuing after a time of separation.

I hope all of them grow up to have a heart of compassion for those who are vulnerable, marginalized and cast aside by most in society.

We love his smile!

We love his smile!

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Doing exercises

Remember the time he snatched a banana from China Surprise's hand and shoved it all in his mouth before she even started to cry?!

Remember the time he snatched a banana from China Surprise’s hand and shoved it all in his mouth before she even started to cry?!

Group hug!

Group hug!

 

He’s Going Home!

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We were thrilled with a bittersweet taste to find out Tuesday that “Jerry”, age 3, will be picked up by his adoptive parents on Monday!

His foster mom has had about 5 days to prepare for his departure, including taking him to the orphanage 4 hours away to get a passport and other papers, and have a goodbye party at his kindergarten, collect some photos to give to his new parents, and prepare him by telling him he will get on a plane and fly away to a new home, to a new language, and new mom and dad.

We love you Jerry!

 

Surprise!

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Last week was yet another scramble as an orphanage that we visit several times a year offered two children for us to foster, seemingly out of the blue.

As recently as January we had pleaded the case for LXT, who is actually much older than he looks in this photo.

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He is about ten years old, although he looks 3 or 4. 

At that time he was not allowed to be fostered.

After the Lunar New Year, he apparently deteriorated and an orphanage caregiver took the initiative (very surprising but good!) to contact the director about him and a new little guy, who talked to someone else who then called our group. 

The end result was that suddenly we were trying to drum up two more foster family caregivers out of the woodwork, through our network of contacts in the city.

This is easier said than done, for several reasons.

1)  We try to identify people interested in fostering ahead of time, so they can have some preparation time, time to learn about common issues, etc.  But they don’t actually respond with a sign of interest until the heat of the moment, in many cases.

2)   The general realities of fostering, including the great uncertainties of how long will we have the child,  is the child adoptable and will my family adjust to the child coming or leaving sometime in the future, are enough to dissuade many from jumping into this wild river. 

3)  We often have no clue about the child’s actual health situation until we lay eyes on them, at the time of pick up.  Even then the workup and available information is often marginal. 

4)  Even if we know the child’s state of health and functional level at the orphanage, it is not an accurate indicator of how the child will do in a home setting.  Although we are optimistic that many will do well, some have very severe neurological disabilities.  It is not easy to predict who will be extremely resilient and who will need lots of labor of love. 

Anyway, back to the story.

We did manage to line up two households who have been willing to take the children for at least the first month. 

Two women who both have fostered before: 

The American woman fostered a little guy until he was adopted by her parents in the US!

The Chinese woman is still fostering an older girl who uses a wheelchair and has cerebral palsy. 

They are both on my list of people I admire.   

In the first couple weeks we should have a more realistic assessment of the children’s ongoing needs and can give a clearer picture (hopefully!) to the long term families who are yet to be identified!

It is truly amazing.

Despite local factors (most of which I have no clue about) which dampen the orphanage’s willingness for children to be fostered, we get these surprises placed in our laps!

And as I well know, even a surprise addition to the family is still an indescribable joy.

 

Another Baby Out!

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Another one of the babies we had our hopes set on getting permission to foster from an orphanage was indeed able to come out yesterday, just in time before the Chinese New Year’s holiday sets in for 10 days and the caregivers are minimally available.

We had initially asked permission in late December when SZC was taken to his new home, but this girl was still in the hospital at the time for some feeding issues.

She seemed to improve each time she went to the hospital, but upon returning to the orphanage she would worsen.

Most likely less attention was given to taking adequate time to feed her, and she would inhale more formula into her lungs.

The director called us last week and asked if a doctor from our team could come up and evaluate her, to see if she would benefit from additional testing or coming to the big hospital in our city.

The bigger the hospital, the better, of course.

Anyway, on Monday our pediatric assistant (a med school grad who wants to become a resident with us), the potential foster mom and I took a long distance bus for the four hours to this city and checked out the child.

After some discussion, the director said we couldn’t take her that day, but “soon.”

All we could do was hope and pray.

And two days later he called our director and said someone could come back and pick her up!

The foster mom, M, already has two special needs children she is fostering, and was so thrilled to be able to foster this little girl, ZY.

Final instructions at the orphanage

 

Ready for some lovin'!