The Mitten
Lately I’ve been hearing from a lot of parents regarding the use of a prosthetic arm for their child.
Let me share my experience.
I had a number of prosthetic arms as a kid. First, there was the one that looked like a flesh-colored mitten. Oh, there it is, to the left of this sentence. Looks pretty good, right? I have no idea how that was attached to my body. Those are some pretty rad faces, though.
Then there was the hook arm. The hook arm was what I used most as a kid. I also hit a kid in the head with it when I was in elementary school because he made me mad. He started bleeding. It was cool, though, because I told the teachers he tripped me and it was an accident. Not my best moment.
Here are some awesome pictures of the hook arm (read to the end so you don’t miss the amazing[ly embarrassing] video):
Looking Dapper Hook Arm
Thoughts:
1) Nice wall-paper.
2) Bieber-hair before Beiber-hair was a thing.
3) Is that high-chair legal?
4) Sweet candle.
5) WHAT’S IN THE BAG???
Ernie and Bert and The Hook
Now THAT is a chair. Oh, and you have to admit that this is a pretty cute picture.
Father and Son and The Hook
This one is in here mostly just because it’s one of my favorite pictures of me and my dad. Thanks for indulging me.
Sweet Bike, Sweet Shorts and Socks, Sweet Hook Arm
I don’t remember this bike very well. I wish I did. I actually wish I had this bike still.
Original Nintendo and The Myoelectric Arm
Ok, when I first saw this picture, it freaked me out. That hand looks super real! I also wish you could see that sweatshirt. It was a “spring break” motif with people doing inappropriate things. Why did I have that?? Oh…and ORIGINAL NINTENDO. ‘Nuff said. (I still have it, too. Box and all.)
Now that I’ve established myself as an expert on the topic, I’ll share my advice:
Do whatever you think is right.
I haven’t used a prosthesis in at least fifteen years; probably longer. I appreciate that my parents had me use one as a kid, though. They gave me every opportunity to try it and see if it was for me. And it was…for a while. For a long while, in fact. I used that hook arm a lot. And when it came time to use the myoelectric arm, I thought it was awesome. It was like I was a bionic man! Here, look how happy I was with it:
And while it’s true that I thought it was cool at first, let me give you a little behind the scenes on that news piece. I never played with LEGOS with that arm in real life. And I never played basketball with that arm on. Did you see how awkward I looked on that last shot? Yeah, I didn’t even make that basket; they edited it that way. Also, my prosthetist did not moonlight as the creator of the Peanuts gang, just so we’re clear.
The truth is, I used to get in trouble for taking my arm off at school and leaving it in my locker. I used to hate having to practice flexing the muscles in my left arm just right so the hand would open and close. It was cumbersome to me. I was a kid and I just wanted to play. And the main reason it didn’t do it for me: I could already do everything I needed and wanted to do, so why learn another way?
I hope this isn’t coming across as ungrateful. My point is just that, a prosthetic arm didn’t improve my life. I appreciate that my parents had me use them as a kid. I don’t resent it at all. But, in the long run, it wasn’t for me.
My true advice to parents of limb different kids is to just do your best. Explore all your options and give them some thought. Your child can’t make decisions for himself yet, so you’ll have to. And if you love them enough to want what’s best, that’s enough. At some point, when they get to an age where they can tell you what they prefer, listen to them. I would say to be careful about forcing them to do anything when it comes to prosthetics (once they get to an age where they can have a rational discussion with you about it).
And again, I don’t use one, but that’s simply my preference. One time a gentleman suggested I get a prosthetic for aesthetic purposes, “so you do better in interviews.” He was trying to be helpful. I told him, “If an employer doesn’t hire me because I have one arm, that’s their problem, not mine.” That’s me, though. Maybe a prosthetic arm would give your child an added sense of confidence. They’ll let you know.
So, do your best. Love your child. Be ready to listen to them. And value what they tell you.
If you have/had a prosthetic, share your experience. If you’re a parent of a limb different child, please share your experience, too!
That’s exactly why we have Jordan using prosthetics… So she knows her options. I’m also looking for ways for her to build muscles that she wouldn’t be able to use on a regular basis. The lack of hand AND elbow make using prosthetics even more cumbersome – there just isn’t a technology that creates a true and useful motion. But as a tool from time to time, Jordan has success with her “helper arms.” Will she use it as an adult? Who knows. But consistent use as a child will give her a chance to use it as an adult and maybe, just maybe, have an insurance plan that will help pay for it because she can prove a consistent use as a child. I like making sure her options are open!
I LOVE seeing the pictures and videos of Jordan using her arms! They’re so girly. 😉
And you’re totally right in that the elbow makes a HUGE difference. When I broke my small arm in 2008, I was TERRIFIED I was going to lose the use of my elbow. That’s a post all its own, though. hehe
Thanks for sharing your perspective, Jen!
Wow! I thought that I was looking at pictures of my childhood. First the mitten, then the hook which I called my “helper”, then the myo-electric complete with the hole for the sock to pull the arm in. We must have grown up during the same time period!
I loved having a prosthesis growing up! I never left home without it except when the park district required that I not play soccer with my prosthesis (long story…) Anyway, I used my myo-electric every day for many years until my daughter was born. Then I discovered that taking care of a baby was much easier without a prosthesis. So for the next six years I did not use one. I think it was a disappointment to my parents. It was only a year ago when I went back to work full time that I missed having it and decided to get another myo-electric. Now I’m comfortable with or without.
All that being said, I agree that parents should allow their children to be part of the decision making process. I think children should have the opportunity to try one but it shouldn’t be forced.
So cool, Diane! Thank you for sharing your perspective; very insightful.
Ryan,
I appreciate your time in writing this. The pictures are great! Our son is almost 6 and we just recently recognized the need for a prosthesis when he received his first bow for archery shooting. Shriner’s built this for him and we are very grateful. He is able to pull back the bow with a release attached to the distal end and trigger it with his cheek. We are also very thankful for his confidence. Just last night he told me when he goes to heaven someday and gets his NEW body, he hopes he still has a little arm and only one hand. 🙂 We hope and pray this positive body image continues throughout his lifetime!
Thank you for sharing your experience, Crista! Sounds awesome! And his comment about our new Heavenly bodies is so cute. It’s something I’ve thought a lot about, too!
I love your blog, by the way!
Wow. Times have changed I guess. My son is adopted at age 4.5 years old and did not have any prosthetics until he came home to me. They started him right out with a myoe. It was too frustrating for him to use so they’ve gone ‘backwards’—now he has a body powered ‘hook’ (but with the more realistic hand over the hook itself). He uses it quite a bit each day but they just added a locking mech to it so it can also be used as passive non-moving hand which he seems to like even more. He’s only 6 now so time will tell if he starts moving forward again.
I love your sense of humor and realism. Thanks!
Thanks, Annie! 🙂
We probably have had the same experiences. I am LBE congenital…I had used many of the same prosthesis probably at the same time in life..but like you…It really didn’t feel it helped me at sports, playing instruments or just doing day to day things..it worked at other levels though..as an extension of my arm..for aesthetics…not so much at the functional level…I remember one time when I was 11 y.o.; I had the myoelectric arm, I was playing with my brother kind of wrestling and asked him to pull my arm hard so he can take it off and surprised everyone around us…he ended up with the very realistic myoelectric arm in his hands…(kids trying to have some fun)…we actually were in the court house when this happen…I have to agreed it was very funny for a change!!!
I haven’t met many people of my age with amputations..I have been looking for networks or peers..Do you have any recommendations? best,
That’s funny, Julie! I’ve done the same sort of things. I moved to a new school in 6th grade and one day in class my arm was getting hot and sweaty, so I took it off. Well, not every knew I only had one hand! The reactions were priceless.
As far as networks go, I’m still kind of finding them myself. I’ve “liked” a few of them on my Facebook page, so check those out. Otherwise I’d probably just do a Google search. Good luck!
Thank you so much for taking the time to write this article. It was so informative and really puts things in perspective for a parent. We were told early on to wait until our son asks for a prothestic and that’s our plan. I know that the decision is a personal one and like you said, we just want to do the best by and for him. Your stories, as always, are so helpful.
Thank you for the kind words, Amie. It so glad it was helpful!
😀 Thank you for these videos and blogs. My son has symbrachydactyly and my husband and I are always motivated by watching others be successful without a “normal” hand. Thank you!
You’re so welcome! Thanks for taking the time to let me know you enjoy them!
oh wow…you [now] look a lot like your dad, and the video looks so much like sam. = )
Totally! 🙂
Thanks, Ryan, for your perspective. We’re currently in the decision making stage of whether we continue with a prosthetic or scrap them. Micah has one, but doesn’t really like to use it; he says it just gets in the way.
We pursued this route because we wanted him to have an option for 2 hands & to see if it would make some things eaiser. In his opinion, it doesn’t make things easier; he feels like it’s “too much in the way.” So, for now he wears it minimally.
He does, however, like getting to pick his “skin” when he needs a new arm. And, I mean, really, if you get to pick your own skin, it’s really fun to pick checkered flag or sherrif badges rather than something that actually looks like skin. 😉
Sheri
Thank you for sharing your story. I was born 1-handed just like you. Most of my life I have been using a prothetic arm.
One thing I always miss in the discussion about wearing arm prosthesis is that the imbalance in the body can cause spine problems. Nobody ever mentions overuse injury due to the muscles imbalance in the body.
This is my story. When I got children I stopped wearing an arm prosthesis. About 10 years later I was confronted with shoulder and neck pain. I started wearing an arm prosthesis again. But the overuse injury did not disappear and even worsened. A chiropractor found out I had developed scoliosis. It took me more than 5 years from the beginning of the complaint, to overcome the scoliosis. I think it is important that people are informed of the risk of developing an overuse injury when they choose for not wearing an arm prosthesis. Nobody ever mentions this risk but I know a lot of 1-handed people have developed overuse injuries.
I think it is important that in the discussion about wearing an arm prosthesis the overuse injury risk should be mentioned too.
You can read more on my website “Balanced with an arm prosthesis”.
There is also another website that gives more information about muscles imbalance, Amputees fitness.
Balansarm
I understand that some scoliosis might happen to children with limb differences anyway (with the use of prosthesis or not) however it seems that the risk actually increases with prosthesis due to being something you are forcing your body to balance constantly and foreign.
However even if you don’t use anything there is always an imbalance and pressure on your spine since you are functioning and doing things that require different motions and these are not symmetrical and they put more pressure on your spine.
But how will using a prosthesis make things better? I don’t see how..they weight way more than your regular arm..and create many other points of pressure in your body..is pretty much like people walking with a cane all the time… they are usually putting pressure on their spine as well because of the imbalance. I actually heard much more about spine problems caused by prosthesis.. and I am pretty sure, due to my own experience, that using the prosthesis has been way more harder on my spine that not using anything at all.
I guess each experience is different however have you thought what would of happen if you never stopped using the prosthesis.
As you mentioned, this is definitely something to consider when deciding to wear a prosthesis or not. I am inclined to not for many reasons but understand why people sometimes chose them.
Thank you for reaction on my comments. I do not have the intention to start a discussion on this subject but I think it is important that people take into account spine problems when making the decision.
My arm prosthesis has approximately the same weight as my good arm, or is even somewhat lighter. So that is different from your situation. Nowadays they are able to manufacture really lightweight arm prosthesis. I envy you because you have such an excellent arm expertise center in America. I can recommend the website of this center, Arm Dynamics.
How things would have been if I had not stopped using a prosthesis I will never know but it is a fact that I am free of pain. I have reason to belief I would not have been able to achieve this without arm prosthesis.
About the imbalance I would like to say the next things.
What I experience in the short arm side of my body is that all the muscles are much less developed then in the good half of my body. I remember in the period I did not use an arm prosthesis the shoulder and short arm always hang forward. If I wanted to use my short arm during daily activities I had to turn my body in the right position, to be able to cut the vegetables for instance. Not very ergonomically, not good for the spine. Good posture has become very important for me.
This is one of the things everybody with a short arm should be aware of, good posture. Regardless whether someone uses an prosthetic arm or not.
I use my prosthesis during fitness exercises and it feels good to be able to strengthen my short arm. My posture has improved and my shoulder and neck pain has gone.
I can give you one advise, take good care of your spine.
My son was fitted with a myo when he was 5. He wanted a prosthesis to wear to school. He wore it in public only once, and to practice at home. He decided pretty quickly that he felt more comfortable as himself. I am glad that he tried it and has that perspective. He’s 12 now, and last year we dusted it off, and donated it back to help another child.
That’s great, Kristina! Giving him the choice was important and allowing him to make the decision about wearing it really empowers him, I think. Thanks for sharing!
I live in India and my husband and I have explored all options for my son, who was born with symbrachydactyly of the left hand 5 months ago, available in our country. That includes toe to thumb transfer or prosthesis. We are pretty sure we do not want our baby to undergo surgery, thanks to people like you who show us that nothing’s impossible for him to do, only perhaps difficult or different. However, we haven’t closed the option of a prosthesis yet. In fact, my husband is traveling to London later this month to meet surgeons and prosthetic consultants to be sure of what options are available to our son. I will give my child a prosthesis, and then leave it up to him to decide what he feels about usin one. The I-limb by Touch Bionics looks like a great device that may be useful to him when he grows up. I hope to be able to provide tha to him if he chooses to opt for it. I’m also pretty confident that by the time he grows up, inventors would have come up with more viable and functional prosthesis for people with limb differences 🙂
I love your hopeful outlook! It sounds like you’re doing a wonderful job exploring all the options and giving your son a choice. Keep up the good work!
I am a recent RAE amputee, hoping to get a mechanical prosthesis soon. This discussion of the pros and cons of using a prosthesis has been very informative and helpful. I love your blog. May God bless you for the support you are providing. It is apparent that he is doing so already.
Thank you, Judy! So glad LOH has been helpful to you!
Thank you so much for your blog and THIS post. I’m a mom of a beautiful, outgoing 2 1/2 year old that was born without her left hand. We’ve been to an ortho dr twice with her. We just want her to be her and have never even thought about prosthetics, we want to love and accept her for who she is without the use of something else. I appreciate you putting your thoughts out there for others to read. BTW we’re in Milwaukee!
This is AWESOME, Sarah! Sounds like you’ve got rule #1 down already. Rule #1 is loving your child no matter what, of course. hehe We should try to get together sometime! 🙂 Thanks for commenting and keep in touch! (You should “like” the Facebook.com/LivingOneHanded page, too!)
Ryan, thanks for taking me down memory lane. Ha! My thought when I saw Justin Beiber for the first time was that you had the Beiber haircut first! Your mitten which you received at 6 months was supposed to help your motor skills. Balance, crawling sitting up etc. were supposed to be made easier for you. I think it helped. You were a few years older when you graduated to the hook. It was second hand to you.(unintentional pun!)When you got the Myo I knew you were coming into your own and starting to make your own decisions regarding the prosthesis. You didn’t like it much and didn’t wear it much and then it was just a non-issue. There were so many people that knew you for a very long time before they even noticed you had just one hand. That’s amazing and so are you.
Aww, thanks mom. 🙂 And thanks for filling-in some of the details!
Tate got his first prosthesis last summer, just before he turned 5. it looks exactly like your hook arm. he wore it a lot the first week or so, and has only brought it out a handful (har) of times since. It seems useful for bike riding, and just today he used it to try and jump rope (we rubber-banded the handle to his prosthesis – it worked!), but he has no desire to use it on a regular basis. Of course, his arm is quite long, so I think that makes things a bit easier on him than if it was closer to his elbow.
He’s now trying to learn to spin a basketball on his little arm, which is amusing. 🙂
I never mastered the ball-spinning on the hook. Hopefully Tate gets it down so I can see it. hehe
I have just found your site and I love it. My son is 4 and is also a left arm below elbow amputee. We are in Canada and are blessed with the War Amps Champs program. The War Amps provide funding for prosthetic limbs for children. Also, each year they have conferences across Canada (in each province) for Child Amputees and their parents to get together. The greatest thing I learned from these conferences is that a prosthetic limbs are not just for cosmetics. We don’t have to hide our sons arm from the world. However, prosthetics have a whole lot more to offer than cosmetics.
I find that one aspect of prosthetics that are missing from these kinds of discussions is the adaption limbs. If our son want’s to play guitar he can get a limb that will hold a pick, or a bow for a violin, or a hockey stick, or a ski pole, or a jump rope. I am sure there are many out there who have figured it out without a limb but I am also sure there are some people who have gone without an activity because they didn’t have an adaptive device.
My son’s favorite arm right now is a passive hook. He does not wear his arm every day but there are times where it helps and makes a difference. Having options is the best way to live.
Thanks for the discussion.
Hi Julia, are you in Manitoba by chance? I’m in Winnipeg, I was involved with the War Amps for many years growing up. I actually do miss the seminars now. I’d really love to meet/help some other amputee’s locally.
Hey, I never get to talk with other amputee’s so it’s cool to stumble onto your page and get your point of view on a lot of things.
I also did not like prosthetics for the same reasons you listed, they felt so awkward to me and I had already learned everything without. I was 2 when I cut my hand off at the wrist. Now I’m 28 and an Auto Technician, I can keep pace with any of the other tech’s at work. I feel living with one hand had given me better manual dexterity and hand-eye coordination.
Dave, we are on Vancouver Island in B.C.
Since you are a Champ grad the war amps might be able to connect you to some local champs.
Figured with a name like Warkentin you must be from MB haha. I did call the War Amps today but no one got back to me. I would absolutely love to attend a seminar again.
LOL understandable. A lot of Mennos in B.C. as well 😀
I was born missing my middle three digits on my right hand; we belonged to an amputee support program when I was young – my first exposure to prosthetics. I thought they were cool, but couldn’t imagine needing one (even then sensing that I was more “impaired” than anything else.) — one time when I was much older, my mom mentioned to me that it never occurred to her or my father to offer me prostheses. “Would you even have wanted them?”… and the answer was no.
Thanks for sharing. I linked this to my blog, http://www.myshelbybaby.blogspot.com, hope you don’t mind.
This article couldn’t express my opinion and experiences any more clearly… Even down to the arm hanging in the locker at school. Great message to young parents.
OMGOSH! I had one of those arms! I hated it! Well, didn’t hate it… I hated putting it on (the stocking thing sucked!) but I loved going to the city and getting the plaster mold done and spending time with the specialist at the childrens hospital Nadia (who even made trips to my place to practice with it)
But I agree it was cubersome. I’ve never been sporty, but whenever we had PE I’d take it off. And I just fazed out on it. Luckily dad didn’t have to pay anything, except for the trips to get it fitted, but they were mini holidays so I’m going to exclude them from costs.
I still have that arm. I remember I decided to take it to school (I boarded) in maybe my… eighth or ninth year? And my friends had so much fun with it. It didn’t fit me anymore, but the batteries still ran alright, and I remember my friend borrrowing it to chase boys around, opening and closing the hand. That same week, we tucked it into my school jumper and used it to prop open our dorm door to give the teacher a fright when she came to turn out the lights. Good times.
I also had a claw. I don’t really remember it, but from what I’m told it actually didn’t give me the use of two hands as I had to pull and loosen a string to open and close it. I apparently had a blast though as I’d spend ages picking things up with it.
Thats my experience. Those photos are super cute BTW. You had super photo faces :]
Ryan, I agree 100%. I’m 27, grew up as a Wisconsin farm kid. I had a prosthetic kinda clampy thing. I tried to use it for a few years, but it was cumbersome, hot, and I don’t think it really helped me, but every child should at least have the option to try it out. Trust me it got me in more trouble than it did good. With the clamp and the strap across to the opposite shoulder I could produce a lot of clamping power to crush everything from nuts to hands.
As a congenital RBE and soon-to-be physician (in Pediatrics no less), I really appreciate your encouragement for parents to do what is right for their child. That being said, by choosing not to fit their child at an early age, research shows they are, in essence, making that choice for their child (i.e.- they will never be comfortable with a prosthetic). I grew up with parents who fortunately had the means to provide a myoelectric arm at an early age, and, for better or worse, insisted I wear it. As a teen I chose to ditch my arm most of the time. However, because I had used a myo so regularly for so long, when I got to college and needed a second hand in my chemistry labs, I was comfortable using my prosthetic. Later, when I decided to go to medical school, I had the option of wearing my arm for procedures that require two hands. I don’t have to worry about finding someone to be my extra hand (because let’s face it, there are medical procedures and skills that try as one might, cannot be done one-handed). This saves me a lot of time and hassle explaining to others how to assist me. Though I may have protested endlessly as a child when my parents told me to go get my arm, I am extremely thankful that they equipped me to be as comfortable with (and adept at using) my prosthetic as I am with going without it. For that reason, I encourage parents to at least give their child the option by fitting them early, if they can financially afford to do so.
You seem to be saying that if a child doesn’t wear a prosthetic at a young age. One will not work for them when they are older. You said “Research shows”. I am wondering about the research. Do people not wear a prosethetic for physical, reasons, such as they can’t adapt. Or, do people not wear one because they feel they don’t need one. Does it have something to do with the brain’s inability to send messages…I guess I am just not clear. Do you have more information available. We have a prosethetic for our two year old, but haven’t really had him wear it because he can do everything without it.mit just seems so cumbersome for him.
Look forward to hearing from you,
Barb
Thanks for asking, Barb! It’s not that it won’t work physically, it’s that the odds of them choosing to continuing using it diminish. Which is fine (I don’t wear one and I had one basically from birth). I’m sure there are all sorts of reasons people choose not to wear a prosthetic. I decided not to because it was annoying and I could do everything I wanted to without it. But, for some it’s incredibly useful; especially those who lost a limb as opposed to being born that way (I assume). As far as more information, I’d just speak to your prosthetist.
Thanks, Ryan, for fielding that one since I’ve been a bit MIA. I actually choose not to wear my prosthetic most of the time because it can be uncomfortable and I’ve developed ways of accomplishing nearly any task without it. That being said, there are procedures I have to do in the medical field that require two hands. For those, being very adept with my myoelectric because my parents made me wear and learn to use it well has been incredibly valuable. Interestingly enough, I’ve been doing some more literature searching on this topic, and some new(er) studies are suggesting that there may not be any difference in functional outcomes for kids with limb differences who use prosthetics vs those who don’t. In other words, kids do great regardless of the route they choose. Again, though, there may be instances where being really adept at using a prosthetic, which only comes from lots of practice, may be useful. Thankfully, adult rehab literature shows that this skill can be acquired later on, it just takes more time and effort.
Beth, You said, that research shows that if a child doesn’t wear a prostheses at a young age, they will never be comfortable wearing one. Is that for physical or psychological reasons, or is it the way memory motor messages have peen formed? Out little guy is two. He has a prosethetic. However, we don’t have him wear it because he can do everything fine without it, and it seems combersome. I would be interested in mor information about the research.
Barb
My amputation (RAE) was 10 years ago, and it took me a long time to get through my skull that a prosthesis wouldn’t “replace” my arm. Even now, I’ve found that even the most empathetic physiatrist rarely asks, “do we even need a prosthetic device at all?” I’m lucky in that I’m not particularly inhibited by the right arm I don’t have, and once I got comfortable with that life got a lot better.
I am a 35 year old who was born missing my left arm below the elbow. I have been wearing a hook since about 6months old.
In discussing whether or not to use a prosthetic I think it is very hard to remove my own experience from the conversation and remain objective. What I mean is this. There is one common character trait that most of us as one armers have developed and share: determination. Do not tell me I cannot do something. I will figure it out. For me, that determination can turn into pride. Not the good kind, the ugly, not listening, not compromising pride. The pride that says my way is the best.
I must admit that reading some of the comments about not using a prosthetic arm rub me the wrong way, and that is my pride. I’m not proud of that but it’s true.
I would think that after 35 years of being a “disabled” person I would not be judging of others. Truth is, I still think to myself “how could they do this or that without a prosthetic”? That makes me as bad as anyone who has judged me over the years. But, that’s what human pride will do.
It works the other way as well. “What good is a prosthesis, I can do everything without it.”
The benefit to these discussions is not for us. It is for the parents facing the decision for their child. The number one thing you can do is this. Follow their lead and never, ever stop them from trying something. They are born with the same natural tendencies as any child. Some want to play sports, or instruments and some want to read and write. Don’t push them one way or the other. They will likely fail, just like kids with two arms sometimes suck at sports. That’s ok. Give them the support and encouragement they need. And give them the option from an early age. If they hate it, don’t make them wear it. But if they find themselves trying a task and can’t get it with the stump, see if the prosthetic helps.
My hook is a tool to me. It’s not a replacement arm. It doesn’t help my body image. I use it to push, pull, pry, hammer. I cannot do my job as an electrician without it. There may be another “me” out there saying the opposite. Or, may have chosen a different path. I prefer to remove it when I’m home with my daughter. It’s hard and sharp even though I have great control of it.
Bottom line: instill in your kids self esteem that is not based on body image or performance. There failures are likely due to being human, not because they are missing a hand. Don’t let them use it as an excuse. The underlying attitude is what leads to success and a content life.
Thank you so much for your thoughts, Scott! So insightful and vulnerable.
Thanks for writing this (and reposting it on FB haha) ! I’ve really appreciated the insight and humor on your blog and Facebook page over these past few months. My son is 16 months (amputation below right elbow) and our docs recommended a prostectic from soon after birth. We tried at about 9 months – and all he wanted to do was pull it off and bang things with it (as would be natural for a little dude). We got discouraged and decided to take a break from it for a few months and try again when he’s a bit older. Can I ask here – at what age have your kids (or did you) start with their prosthetics? Had folks wished they had started sooner or held off? We obviously want what’s best for him, but not sure what our next move is. Thanks!
Very well said Ryan! My experience, if you care, is that I was hospitalized for 3 months at 5 years old in 1961 to be fitted, educated and practice the use of a prosthetic arm by Shriner’s Hospital in Greenville SC. I appreciate that experience. I wore my arm(s) for school but not so much outside of school. I’ve worn it mostly in work environments but at home I am much more comfortable without it. I am an above elbow “amputee” with a small humorous and other left side anomalies. I was born with a locked elbow joint and about 2″ to 3″ inches of arm beyond. The end looked like the joint end of a drumstick. I had the elbow down removed as a 14 year old. It was removed for aesthetic purposes. Wouldn’t change that. I am soon to be 60. I have worn prosthetics off and on for years! I am currently wearing a old fashioned harnessed hook at work (most of the time) and have a modified prosthetic that I put on at home when it’s needed. It really is helpful! I went many years without anything before about the last 7 or 8 years.
I started having problems with neck pain and thought wearing one again would bring my shoulder down and that would help. The jury is still out on the results. I also have to wear it because I’m still paying on my portion of the bill….. !
I think that children should be introduced to prosthetics at about the same age I was. 4 or 5. My opinion is that if children are older they will reject it without trying long enough. I also think that the parents should encourage wearing it if they have one. There is something to be said about the usefulness of using two hands together! I am a Certified Occupational Therapist with Poland Syndrome working in schools and that is (some) of my story.
Thank you so much for sharing your story, Pamela! 🙂
Thank you,Ryan, for your wonderful post with photos and narrative.
Thanks to all the respondents as well. It is such useful info.
Can’t believe I’ve just found you and your blog! I too was born (in 1981) without my left hand (just nubbies and limited cartilage for a hand- I’ve always called it The Paw)
Although I look different, I’m not all that limited in ability (like, I assume, pretty much all of us). I can play instruments, drive a car, paint my nails, and beat my two-handed friends at fooseball and Mariokart. That’s a fun racket. 🙂
I spent a lot of time at Shriner’s in Philly as a kid. To be honest, they totally freaked me out with the prosthetics. They took me into a huge room with them playfully strewn about and hung on the wall. Quite disturbing actually to a small child! I did see that news video of you- they used it to introduce us to that advancement in prosthetic technology. And I totally thought the doctor made Charlie Brown! But, since my parents had always made me do things for myself and figure out my own way to do things, I never felt like I wanted or needed it. I’m pretty sure I would have poked multiple people’s eyes out with that badass hook (Buster from Arrested Development for sure).
I don’t regret never using one, but I’m curious how that would have changed how I do things in everyday life.
I like to think that people like us with congenital differences don’t “adapt”, for which well-meaning people often try to compliment us. We learn a different way alongside our peers. My classmate in preschool taught me to tie my shoes without batting an eye- we learned together while we were supposed to be napping.
Now I offer myself as a resource to parents of young kids and babies with ABS, and as a shoulder to cry on for the middle school kids who are really starting to notice the stares.
I own a coffeeshop/roastery/mobile coffee truck/consulting/training biz in PA. I train lots of people in a typically two-handed trade. I start with “hey! Check out my hand- I was born like this but it doesn’t bother me. Try not to let it distract you. Let’s go win a barista championship”. It goes very very well and they are always good sports!
I will also say- kids are usually ok. Parents are ok too when they are trying to help their kids be kind to different strangers, and I’m happy to be the guinea pig for their kids to learn- a safe space for them. It’s the totally rude adults who point, stare, comment, and mock that are not ok.
My three little two-handed kids actually run interference for me sometimes!
I’m appreciating your resource here! We’re on the same page, and it’ll be helpful to share this.
Cheers and Shalom!
Just want to add my thanks. I’ve never had to face this choice, but from talking to friends (and trying to understand them) ive come to the same conclusion – its about choice!