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Twice as Lucky: Adopting a Child with Bilateral Limb Differences

April 29, 2017 0 Comments


“How does your son do it?”

I am frequently asked this question by loving, curious, and experienced friends in the special needs adoption community who want to know how our son navigates the world with bilateral upper limb differences. Having already adopted one child with unilateral limb differences, we also wondered how our son would navigate the world before we adopted him.

When a good friend sent us a link to our son’s information on Madison’s waiting child page, she said he looked like he belonged in our family. We agreed.


Ten Fingers are Overrated

We learned from our first child Lydia that “ten fingers are overrated” (The Lucky Fin Project). We adopted Lydia when she was 23 months old, and she immediately taught us that this whole idea that “as long as my baby has all ten fingers and toes” was preposterous. Born with symbrachydactyly (her file said “absent palm of left hand”), she has five fingers on her right hand and a “lucky fin” with boneless nubbins on her left.

We call our kids’ different limbs their “Lucky Fins” like Nemo in Finding Nemo. This term has grown in popularity because of The Lucky Fin Project, an online community that celebrates and supports those with limb differences.

Despite not having all ten fingers, Lydia could peel an orange by herself before her second birthday, tie and untie elaborate knots before she was three years old, climb a rock wall, pick up a cup and drink from it with her lucky fin, and button and unbutton her jacket with ease. We witnessed kids her age and older who had all ten fingers struggle doing what she could with half the fingers they had. But, how would her brother do everyday things with bilateral upper limb differences?

So how does my son with bilateral limb differences do it?

My son was born missing most of his fingers on both hands. Though symbrachydactyly is rarely bilateral, he is a rare one. On the left side, he has one typical finger (his pinky), about 15-20% of his thumb, and a tiny ring finger that does not move. His right arm extends a few inches beneath the elbow. His other nubbins do not aid him functionally at this time.

We have learned from others within the limb difference community that it is important for our kids to figure out how to do things, with us cheering them on. With Barrett, that meant I had to force myself to let him struggle and try to figure it out (and this has often meant I have had to sit on my hands and let him struggle a bit). For example, he didn’t want to try to learn how to pull down his underwear and pull them up on his own. He screamed and cried. “Barrett, you can do it! You can do hard things. Figure it out!” we would say. His little sister is his biggest cheerleader. And you know what? He figured it out quickly and uses his lower body in genius ways to pull his underwear up and down when necessary to use the potty. Kids with limb differences are often excellent problem solvers.


More Alike than Different

But just like his sister, there are many tasks that he can do with bilateral limb differences that his peers with ten fingers cannot do. He was one of the first boys in his class to be able to take his shoes on and off. He can use typical scissors, though it takes him more time. He can use chopsticks. He can climb the six-foot tall rock wall on the playground. He struggles with buttons, but so do most three year olds. He can buckle himself in his car seat, but struggles unbuckling (though I am not sure I want him to know how to do that just yet). It took him a couple of weeks to learn how to use both of his limbs to open a round door knob, but he can open it now and quickly.

I thought Barrett might need an adaptive writing device for school, but he has figured out how to use his thumb nubbin to develop enough of a grasp to hold a writing utensil properly. In fact, his drawings are advanced compared to his peers. He drops things from time to time, but he picks it right up.



The Social Aspect

The social aspect of being born with a limb difference is more of what impacts our day to day life. Truly, being born with an upper limb difference is more of a limitation in other people’s minds than it is in actuality for our family. My kids figure out how to navigate the world, but I sometimes need to help them navigate the social aspect of being visibly different.

Children start to notice visible differences around four-years old, and around four, my daughter was able to navigate most questions or comments from peers and strangers. Barrett is nearly four years old, and is beginning to be able to communicate about his limb differences. At times, teachers or I might need to step in and help guide a conversation, but that is rare. When my kids were two and three years old, I often modeled how to respond for them. At home, we would role play what to do when someone said something unkind or asked a question out of curiosity.

Sometimes, adults stare too.

My kids teachers have been great about teaching the children in their classes about limb differences. I so appreciated when one of my son’s teachers said that she had never met a child with a limb difference and wanted to know how to talk about it and address it with children.

Our kids have a tribe of teachers and loved ones who surround them and believe in them.

To teach their classmates about limb differences, we use the amazing children’s book Different is Awesome by Ryan Haack. He is an adult who was born with a limb difference. Whether or not your kids have limb differences, you should buy the because it has a great message for all kids about all kinds of differences!


They Can Do Hard Things

I always start with the assumption that my kids can do something and need to try it first. Molly Stapelman, founder of The Lucky Fin Project said, “A child being born with a limb difference is not tragic. It’s extremely important to show our children how capable and wonderfully made they are. If we treat them as flawed or limited that is who they will believe themselves to be–and that would be the tragedy.”

Though I truly believe people’s motives are good, my kids and I sometimes have to teach people to only offer help when it is asked for. Sometimes, people start with the assumption that my kids cannot do something. Our kids have taught us to start with the assumption they can do something.

A doctor once told me that my kids would never be able to play the piano, but my kids have taught me that the only reason they might not play the piano is because they do not want to, not because they cannot.

My husband and I have had to get over our people pleasing ways to advocate for our kids, and let adults in our kids’ lives know that we all need to encourage them to do things that we think might be hard for them. At times, we need to watch them struggle and come up with solutions. Confidence comes from doing hard things, from embracing the struggle, and from figuring it out. We give our kids room to figure it out and a space to celebrate when they do. But with most things, they really don’t struggle. Just last week, Lydia was shocked I couldn’t open a plastic egg. She showed me how to do it quickly one-handed.


What About Prosthetics?

Before people see my kids in action, they ask me when my kids will get prosthetics. Often, for kids born with upper limb differences, prosthetics become expensive paper weights. As my kids show interest and participate in more sports and playing musical instruments, we know that there are great prosthetic options for these specific tasks that are available, and we won’t hesitate to use these if they need it.

Lots of times, stories about 3D printed prosthetic hands have gone viral, but so far our kids have no interest or need. In fact, it would likely get in the way of what they are already able to do. If that changes for them, the great thing is that 3D printing has made prosthetics more affordable and accessible. We assumed incorrectly that our son would need an adaptation to his tricycle to help him steer it, but he figured out how to do that too.

See, they have taught us to start with the assumption that they can.


What About Surgical Options?

There are some hand surgeries that might help a child gain more functional use, but no two limb differences are the same. My single biggest recommendation to parents raising a child with a limb difference is to go see the leading experts for an initial evaluation.

Our daughter’s limb difference was misdiagnosed as amniotic band syndrome three times, before we got the accurate diagnosis from Dr. Goldfarb at Shriners Hospital in St. Louis. At a place like Shriners, they treat far more kids with congenital limb differences than doctors or OTs at our local hospitals. They have expertise and have provided us with research, contacts with other families, expert advice when our daughter was teased at school, and OT recommendations that have helped our kids.

Both of our kids have had surgery on their lucky fins. Lydia had web-deepening surgery on her lucky fin to help her develop a small pinch. When she is older, she can decide if she wants to deepen it more or not. In a year or two, Barrett might have a procedure to lengthen his partial thumb, but we are wrestling with that decision.

To learn more about specific congenital limb differences from an orthopedic hand surgeon’s perspective, see Dr. Charles Goldfarb’s blog here.



My children have showed me that they are not limited. They are capable. They are beautiful. And we are twice as lucky to be their parents.

Resources for Families:

The Lucky Fin Project
Congenital Hand and Arm Differences
Texas Scottish-Rite HospitalShriners Hospital
Living One-Handed
Born Just Right


On Bundling Babies and Snap Judgments

April 29, 2017 1 Comments

The day we were set to leave the hospital with our newborn daughter, no one asked us about our car seat. She was our first baby, and so I didn’t understand at the time how significant this insignificant thing would become to me. At the time, I didn’t realize that had she been born on this side of the Pacific, we would have had someone from the hospital staff inspect our car seat installation before we ever could leave the building. In the USA, they don’t give you a manual on babies, but they do make sure they are latched in properly for the ride ahead.

But in China we were asked about blankets.



And I thought I was prepared. I had a cute, fluffy, 3-sizes-too-large snowsuit that I zipped our newborn baby girl into when they finally told us we could go home. It was white with little ears, and she was our sleepy, cuddly teddy bear. Around the snowsuit, Jacob carefully tucked a fleece blanket and we were ready to brave the frigid-but-bright Beijing day. As we prepared to leave the hospital with all the confidence two new parents can muster, one of the older nurses looked at us bemusedly and rhetorically asked if we planned to leave the hospital with our child dressed like that?

Jacob and I looked at each other and back at the nurses, not sure how to respond. She was more direct in her questioning the second time around. “Do you have any more blankets in the car? Your baby will not be warm enough dressed like this.” As she spoke, she reached for Cora while another nurse ran off to gather up some more blankets. She deftly wrapped a few more blankets around Cora, pulling tight and tucking loose ends until she was satisfied with her work. She handed her back to me and sent Jacob down to the car to look for other clothing items that might pass for blankets so that we could swap out the hospital-owned blankets with our own at the car.

January in Beijing is frigid-beyond-description. And as I rode down the elevator holding my bigger-than-a-watermelon bundle of newborn and blankets, I almost laughed. She certainly wouldn’t get cold. When I got to the car and out of the nurse’s watchful eyes, I peeled off a few layers and tucked her into the car seat, setting aside one set of cultural values for another.

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A couple of years before I left the Beijing hospital with my own newborn, I stood in a cold room in central China measuring babies enrolled in the formula project New Day Foster Home operated in the area. The room was not adequately heated, and all the foster mamas were frustrated by our insistence that we undress the children’s layers so that we could get more accurate chest measurements and weight.

Our team joked that the babies gained 3 pounds every winter – simply because of the extra winter clothes – but it was no real joking matter. Because in those long, cold months, the babies would fight an unrelenting stream of illnesses. The bitter cold and limited food and close quarters seemed to create the perfect storm for sickness, and as the little ones struggled to stay healthy, they inevitably lost weight. It was a slow march to springtime, and our wintertime visits to the foster program made my fingers numb and my heart ache.

At first, in all the idealistic confidence I could muster, I found myself as irritated at the foster parents for insisting on bundling the kids in so many layers and refusing to undress them, even for important measurements, as they were with me for wanting to unbundle them. To my western-eyes, the children seemed dirty and unable to move because they were so tightly bound. Plus, didn’t the foster parents understand we needed good data?

But it only took a few months of making these visits for me to start to see thing through their eyes. Bathe the babies in the winter? The house is cold and then the baby will become chilled. It’s too risky; they might get sick. Undo a bit of their clothing and make it easier for them to move? It’s too risky; their fingers or toes might get frostbite. Undress them so the once-a-month visitors can get good data points for their charts and graphs? It’s too risky; no chart or graph can make winter end any sooner.

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It’s human nature, I think, to judge what we don’t know.

And I judged those foster mamas for bundling their little babies too tightly just as harshly as that Beijing-nurse judged me for bundling up my newborn too loosely. The thing is, judgments rarely ever take into account what life is really like from the other person’s perspective.

Sometimes I open up Facebook and see indignant posts about the “plight of orphans.” I see harsh pictures that paint orphanages and their caregivers in the most negative of lights, often at the expense of an orphaned child’s privacy and dignity, combined with self-righteous proclamations about how it ‘should’ be done; how we ‘should’ care for orphans; how others ‘should’ adopt. But so often this harsh perspective fails to take into account the humanity and point of view and intentions of the person on the other end of our pointing fingers… and so we wound, isolate, and divide rather than heal, understand and bridge.



One of the wisest pieces of advice I’ve ever received is: “Don’t should on yourself.” Which could be extended to: “Don’t should on others.”

And when we are standing on the periphery of an orphanage with 900 children, limited resources, and a handful of low-paid staff who spend their days cleaning up messes, making bottles and attempting to provide some amount of human interaction for each child, it’s far too easy to slip into the self-righteous position of a ‘should-er.’

I know, because I’ve been guilty of it.

On one of my first trips to visit an orphanage, I was part of a small team. We spent the first part of our week just hanging out in the giant playroom with a bunch of toddlers and a few caregivers, and in the course of about 3 days, I’d pretty much mentally identified all the caregivers’ weaknesses and none of their strengths. I developed strong opinions about how the nannies could do a better job and harbored a secret suspicion that none of them cared for their kids.

I had been in their world for less than a week, and I was a self-proclaimed expert (at least in my own mind) on the subject of how to do their job well. On the 4th day, one of our team members planned to do a training with the nannies – on how to better care for their children, of course. The training was scheduled to happen during naptime, and I took it upon myself to step into the nanny role for the 2 hours that were needed for training. The nannies put the babies to bed and turned off the lights in the rooms and traipsed down the hall to listen to a well-intentioned foreigner lecture them on an academic history of child development.

But while they endured the training, I set about my covert mission of being a better nanny than they were. I sat outside one of the bedrooms where 7 little ones had just been laid down to sleep. One of them started crying and so I tip-toed into the room. I laid my hand on her chest, and she quieted. But my presence disrupted the normal routine and one of the little ones in the crib to the left began to cry. I reached over and patted him with my other hand. I can almost remember smugly thinking that it was, in fact, possible to be emotionally present to these children, if only someone cared more for them more than they cared for a tea-and-conversation break.

But before long, one of the children behind me began to quietly cry, hungry for the same sort of attention. So I moved to that side of the room to whisper and pat and soothe yet another child. You might imagine what happened next… Before long every child in the room was crying, and I frantically moved from bed to bed, my hand a mere pause button on their sorrow. I’d pat for a moment, and they’d quickly quiet and settle; I’d move on to the next child, and the first would start up again.

In a matter of minutes, my inadequacy and their need brought me to my knees. I slipped out of the room and shut the door on their cries and sunk to the hallway-floor.

And I wept.
I wept for the injustice that led to these 7 babies calling this concrete building home.
I wept for the nannies that faced this kind of sorrow and hunger for affection every single day.
I wept with regret for my own ignorance and arrogance – sinfully assuming I would be so much better at the job than they would be, yet not even lasting 20 minutes.

There were no evil villains in the story… I came away that day believing that everyone was doing the best they could with what they have and deeply knowing I could do no better.



And I guess that’s what I want for our community.

I want us to embody grace and mercy – directed not simply towards the children growing up in orphanages, but also to those people who find it is their lot in life to be their caregivers.

I want us to treat others with dignity – not simply the nameless children whose orphanage-pictures we share on the internet, but also the staff of the places they call home.

And I want us to live with humility – doing the best we can to love and care for orphans through adoption, advocacy, and outreach, but never at the public expense of criticizing the actions of someone on the other side of the world, whose culture and values we do not understand.

I want us to believe that everyone is simply doing the best they can with what they have.


Find My Family: Jonny

April 28, 2017 0 Comments

Meet adorable, almost-three year old Jonny.

Jonny likes to look at himself in the mirror and make faces, smiling or opening his eyes and mouth wide. A restless and active boy, he is very interested in new things, and laughs loudly when he’s happy.



Jonny was born in May 2015 and is diagnosed with Down syndrome. He has no other known medical needs. His voice is low and he doesn’t scream or shout. Though he doesn’t speak yet, if he needs something he lets his nannies know by making sounds or crying.

His caregivers can easily tell how he feels by the sound of his voice, and he responds appropriately to their facial expressions. When praised he is happy, and when scolded he gets very quiet.

As of October 2016 he can crawl, sit on his own, and go up and down stairs by holding onto the railing. If Jonny doesn’t like something he’ll refuse it by just not moving, and his caregivers know now that means he doesn’t want it!

When he sleeps, he sucks on two of his fingers, and his nannies will sneak over later and move his hand out of his mouth once he’s asleep.



This cheerful little boy needs a family who will give him all the care and attention he needs!

Jonny’s file is currently with WACAP. He has a $4,000 grant available for qualified families. For more information, please email Ckids@wacap.org.

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A few resources or those considering adopting a child with Down syndrome:

An excellent Q and A post on Down syndrome adoption
A dad’s perspective on Down syndrome adoption
More posts on NHBO about Down syndrome
National Down Syndrome Adoption Network Facebook Page
China Adoption Special Needs Information Facebook Group
The National Down Syndrome Society website

Love Stories: Dear Nanny

April 28, 2017 5 Comments

Dear Nanny, As soon as we walked away from our wildly brief time with you, I began to realize what I’d missed, what I’d failed to do. I didn’t say thank you as I wanted to. I saw you, spoke to you, took photos with you, but I know I didn’t truly look into your …Read More

Stay the course. Help is on the way.

April 27, 2017 1 Comments

In an article posted by on orangeblogs.com it’s noted that 90% of people with special needs do not attend church. A study concluded in 2014 shows that 1 in 6 people in the US have a diagnosed special need. That means for my small city of 160,000 people there are roughly 26,000 with a diagnosed …Read More

All She Needed Was A Family

April 26, 2017 0 Comments

I saw a serious and sad little girl when I looked at her referral picture for the first time. My experience with referral photos told me that she had been through a lot in her short time here on earth. Her eyes reminded me of an old person who had known loneliness and sorrow. Her …Read More

Find My Family: Bristol

April 26, 2017 0 Comments

Goodness gracious – just look at that smile. Bristol was born in March 2015. She is a sensitive little girl and gazes at people when they talk to her. When her caregiver gently touches her on the head, she will call “mama” and smile. Bristol is diagnosed with Down syndrome, and also had surgery for …Read More

Love Stories: What I Saw When I Stopped Searching

April 25, 2017 10 Comments

We are so quick to fill in the blanks, aren’t we? We get one part of a story, and we use our imagination to complete the rest. But it’s too simplistic to do that with the care of orphaned children halfway around the world… to see an image and create a tragic narrative, hear a …Read More

Love Stories: A Second Chance

April 24, 2017 2 Comments

We are so quick to fill in the blanks, aren’t we? We get one part of a story, and we use our imagination to complete the rest. But it’s too simplistic to do that with the care of orphaned children halfway around the world… to see an image and create a tragic narrative, hear a …Read More

Urgent Medical Need: Owen

April 24, 2017 3 Comments

Owen is a precious 9 year old boy who is currently living in an amazing foster home near Beijing. Owen quickly adjusted to his new foster home and reports that he likes it there. He has become a kind big brother to many of the younger children living there. He wishes to have a family …Read More

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