Prosthetics do not change everything
The awesome expansion of the eNABLE program has made it possible for more and more children to have access to the experience of wearing a prosthetic hand. The media loves it. As someone who used to work in the tv news world, I love the story: A cute child has a chance to flex a hand and hold a ball for the first time. It’s an amazing sight to see. But it’s a great moment. It’s not a moment that changes everything. Journalists tend to overstate the moment.
“A 3-year-old girl’s life is about to change forever thanks to some new technology. She is getting a prosthetic hand, and thanks to 3-D printing, it is cheaper and easier than ever.”
–KCTV, February 9, 2015
As a mom who is the parent of a prosthetic-wearing limb different child, I know the reality. There are moments in my daughter’s life when prosthetics are very cool. Jordan has a great “sports arm” that helps her kayak and ride her bike. Her body-powered elbow arm helps her build balance to her body’s core strength. It also helps her experiment with motions she wouldn’t be able to do any other way. Upper limb prosthetics don’t change everything. They provide tools that can be helpful at times. I know there are times when I have felt an emotional connection to Jordan wearing prosthetics. We’ve had moments when she did something awesome she couldn’t do without her helper arm and it has brought me to tears. But those are moments. Moments Jordan wouldn’t have enjoyed without the help of prosthetics. I guess you could say they changed Jordan’s life. But prosthetics don’t make everything perfect.
I recently learned statistics on the number of children born with limb differences each year from the Centers for Disease Control or Prevention. In the United States, 1500 babies are born each year with upper limb differences. 750 babies are born with lower limb differences. That means, each year, there are new parents going through the process of acceptance of raising a child with a limb difference. We all deal with the acceptance process differently. I worry about a family that sees these reports about 3D printed prosthetics and think they really are the answer to a child’s limb difference. Prosthetics aren’t a solution. Prosthetics aren’t a “fix.” Prosthetics are a tool that can be helpful at times.
I don’t know how to change the ongoing reporting process that glorifies prosthetics. But I would love to open some awareness to the limb different parenting world… I believe in the use of prosthetics as a tool. 3D printed hands and arms are very cool. But they don’t change everything in the life of a limb different child.
I would love to know how old you started Jordan with her helping hand. My little guy just turned one and has a helper hand and does not like it. He screams when I put on him.
Jaimie, I totally understand. As a baby, Jordan wasn’t a fan. She wore it a little each day starting at nine months. She wore it the most when she had occupational therapy once a week almost every week right up through Kindergarten. We use OT and PT services less now that she’s in third grade. But she’s also old enough to understand why we wear it – to keep her body strong. This post explains how she wears prosthetics these days. Here’s a little history on her earlier arms when she was a baby. Toddlers fight everything – shoes, socks, pants, shirts and helper arms. Hang in there. I know you’re getting pushback, but that is totally normal. Being consistent shows you consider it a helpful tool… and the older our kids get, the more helpful that tool gets. 🙂
I teach deaf kids, and you could easily replace prosthetics with cochlear implants, and it’s the same thing. Parents see heart-warming stories on TV about a baby “hearing” for the first time. They think this will be the cure to their baby’s deafness, and once they have the surgery, all will be well. Well, CIs are not a cure. They are not a fix. They are a tool, and they don’t work on everyone.
Thanks for writing this! My son was born without a left arm and is now almost 8 months old and we are just starting with his first prosthetic. It’s been really hard for us because we thought it would be a great thing but in reality he has been using his little “fin” so much better without it. We are going to keep at it and hopefully he gets used to it as time goes on. Love your blog though and can’t wait to keep reading through it.
Thank you Jen. My little guy wears his his helping arm more when the therapist comes to. I love to hear your post they are so encouraging to me. Thank you so much for doing this
Hey everyone ,can someone teach me making a hand for my self. It would be so nice of you if you can.
The Enable Community Foundation has a guide on creating 3D printed prosthetics: http://www.enablecommunityfoundation.org/