United Brachial Plexus Network, Inc.

I was on the open forum tonight with Dr. Water's which was very interesting and helpful, but it raised some questions in my mind. Some of the parents were talking about their children with BPIs taking gymnastics and swimming and playing various competitive sports. Are these children with very mild BPIs, or do you just put your child in and encourage them to try even with the use of just one arm? My daughter's injury is quite severe. Her right arm is almost completely paralyzed. A realistic look at it would lead me to believe that Alexis will never be a gymnist or a basketball player. Am I off in my thinking or should I be encouraging her to try these things. I would hate for it to just be a discouragement to her. Please help if you have advice.

Amy
I don't know how severe your daughters injury is but mine is considered severe. I did not use my hand until 1st Grade in school.
My mother had me try everything. I could cartwheel one handed and fake it so I looked as if I was using two hands. I played basketball I was a guard in the good old days when girls had different rules. When I turned 60 I learned to use a potters wheel... I always felt I could do anything I put my mind to.

We use to have an in ground pool and until someone pointed it out to me I never realize my arm showed when I swam. In my mind I was using my arm normally...

I believe every child should be able to try and fail rather than not trying at all... You just never know what we can do... we have ways of doing things and accomplishing more then others think we can. Don't set the bar low for her. Let her reach out for what she wants. I took all sorts of lessons dance, drama, art, music and piano... I hated piano but that was for therapy... ugh I am the only one in the family that does not play... that was hard.
I type with both hands. My hand is pronated so that is easy for me.

I believe I looked at things differently because I was OBPI. I would see something new and wonder if I could do it, therefore, I tried. I have so many more hobbies and interests than many of my friends because each new thing is a challenge and I must know if I can do it! I never wonder if I want to do something or if I would like try it... I just have to know I can...
I took tennis lessons at least 10 times. All of my friends and my husband played but because I could not serve... toss the ball... I got frustrated and quit... then I realized I don't like to play I was doing it because my friends played and I just had to do it... It took me a long time to realize that was OK... I think about ten years before I gave up... because I hated to play... LOL..


Kath adult/robpi

Amy:
I would echo Kath's comments especially about letting her figure out what she can and can't do because that's exactly what happens. I played just about every sport as a youth. I figured out that I couldn't tackle with one arm very well so I played flag football instead. I couldn't catch up to a well thrown fastball so I played slowpitch. I played competitive slowpitch into my 50's when my unaffected arm started bothering me.

She'll probably want to participate in a sport or activity because her friends are participating. Be supportive and encouraging when she tries and put an arm around her should she encounter disappointment but don't tell her she can't do something because of her injury.

John P.
ROBPI

You'd be surprised at what we can adapt to. I didn't have any use of my arm till I was 2 or so. Even after that I was severely limited for another 10 years. But even with that my parents encouraged me to do some things though they prefered me to stay away from more physical things. But I learned to play the violin and was the best in my group. I always had trouble with gym sports but I learned what I could and couldn't do. I was 4th seat on my College Tennis team and did some extracurricular gymnastics in High School. Like Kath I learned to do cartwheels one handed. There were things that I couldn't do and sometimes it was depressing but that's life with or without an injury. The most depressing thing was when someone told me I couldn't do something because of my arm. I had a ballet teacher tell me once when I was young that I couldn't take her class because of my arm. It was stupid and it really hurt. So I taught myself and though I never performed I have the knowledge that I can do it even if it doesn't look perfect. But the thing was that that stuck with me more than anything I tried and faild at on my own.

So I would encourage her do try what she wants to.

All I can say is that I am amazed. I have never known or even seen anyone else with this injury before. All is see is other children with two unaffected arms playing catch, swinging on monkey bars, etc. and I just assumed my daughter's life would be different in terms of what she could not do. Your stories certainly are an inspiration to me.
I must say, Alexis is an energetic, precocious, strong-willed child - the "I do it myself" type. Even though she is only four, at every stage I keep thinking there will be something she cannot do, and at every stage there is NOTHING she doesn't try and accomplish. I guess she is already showing me how wrong I am!!
I would LOVE for my daughter to be able to meet some of you someday. Thank you so much for your encouragement.

Hi Amy.

My daughter is 3 and has a pretty severe injury. We've had two surgeries and a third is getting closer and closer.

Sarah does tap, ballet, and tumbling. These exact questions came up when I was enrolling her... Do I enroll her and set her up to fail, or do I keep her out of something she REALLY wants to do, just because it will be difficult for her? Well, she's been in dance over a year now, and she has proved me wrong. She does everything the other girls do, although sometimes she does have to compensate and do things differently.

I had a long talk with her teacher before we enrolled her and told her about Sarah's limitations and abilities. She was more than willing to give 'special' attention to Sarah when needed, although we've found that she doesn't need it as much as anticipated. It has been a wonderful experience for her.

Don't get me wrong.. I don't have any dreams of Sarah becoming a ballet star or the next olympic gymnast. (Although, wouldn't that be a great comeback story! ) But, as long as she wants to continue, I'll let her.

Feel free to email me with questions!

Cherie

Amy,
Even if Alexis has a severe injury, she will do what she wants. We find our own ways to do things. I know it is possible to play basketball onehanded because I did from 3rd to 6th grade. I did not have a lot of use in my right arm so I did every thing with my left. I could even make 3pt. shots. But I am way out of practice because I found my passion to be in softball not basketball. So from 3rd to 12th grade I played softball, and I love every minute of it. I only with I was playing right now. But I am not playing in college, at least this year any way. They miss way too much school.

I can do any thing in softball hat every one else can, I just do it a little differently. People that dont know me are even ammazed by how fast I am when catching and throwing the ball because I do both with my left hand. I can bat ok, but I prefer to play in the feild, I guess in a game I get nervous. I am a great hitter in the batting cage though. That did take time and a lot of practice. I would play at home with my family and stay after practice if the coach would stay just so I could swing at a few more balls. But like I said, I absolutely love softball so for me that extra time was just more fun.

Any way the point is no matter how bad your daughters injury if she wants to do something bad enough, she will find a way!
If you ever feel like taking a trip to northern Minnesota I would love to spend time with your daughter. That sounds like fun.

Amy 19 ROBPI from MN

one more thing I forgot to add,
Let her try any thing she wants, being able to try even if we dont succeed is so much better than not being able to try. There were only two things my parents never let me do and it still bugs me because I have not had another opportunity to try those things. One was water skiing and the other was shooting clay pidgens with a shot gun. (yes I am a hunter girl). Now I dont know if I can do those things and it bugs me.
Amy

Amy
I got to water ski but my mother did not know about it. I lived on Long Island and was about 20 and most of my friends had boats.
I had a real struggle getting up until I held on in the middle of the rope... I did not have the strength or grip in my right arm/hand but I got up quite a few times.
Then I used the excuse that my hair got too curly when I fell in the water... LOL..

My brothers taught me how to shoot at bottles on a fence in the country... again my mother did not know until after the fact...
NO I am not a hunter girl the only thing I like to shoot now are photos... LOL..

You may get a chance to try water skiing yet, it's never to late... but it's hard.

Kath (robpi/adult)

Amy, When I came to these Board almost eight years ago, I thought all was lost with my son, he had nothing at all. No finger no nothing. These people on these boards are so wonderful. My son is 7 1/2 and I can tell you a few things from a mom point of view. My son has never-ever heard me say that he could not do anything. He does what he wants to try and usually suceeds. He has a severe injury but it doesn't let him down. He has had two surgeries and the day he got his splint off after mod quad, he hung by a bar off the slide and kicked his feet in the air. I was devasted , the only restriction he had was not to let him hang....well, after calling the doc, he said I shouldn't worry, that he thought he was fine....well, he is a monkey bad freak now. The more monkey bars the better. He is gaining so much strength it is incredible. I think when you tell a child that they cannot do something, they either feel like a failure or that they can and would be fun so they do it anyway....LOL !!! Brandon is so independent. He does everything every other child does and even more. He cartwheels(around my living room) constantly.....the jury is still out whether they are one handed or two handed. !!But seriously.....he does everything with more determination than you can ever imagine !!! Gayle