“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.
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