United Brachial Plexus Network, Inc.

Hi! I have a daughter who is 7 now. She suffered a severe ROBPI and has had 4 surgeries to date. She was a trooper dealing with all the surgeries and therapy appts. We settled our lawsuit about a year ago so we thought that we could finally start moving forward with things. Now were are dealing with the emotional issues that accompany this injury. I guess I was hoping that this wouldn't happen. My daughter is very nervous about any new situations, is worried that people will laugh at her, doesn't like to draw attention to herself, etc. She is currently on a baseball team (this is her 3rd yr playing) and she doesn't want to go anymore. (I saw the post about baseball so that triggered me to write this!) I have been teaching her to catch/throw with her uninjured hand and she has done pretty well. She won't do it in front of her team though because she is afraid they will laugh or ask her why she is doing that. I offered to talk to her team and the parents about her injury and that she does things a little differently. She said that would help. I just don't know if we should get her to see a counselor to talk about things. I suffered from low self-esteem as a kid, so I know how she feels. I didn't get "help" until recently and it is hard to un-do the damage it has caused. I have no one to talk to about this because I don't have close friends and my family tells me that my daughter is "fine."

Sorry so long!!! I've been keeping this to myself too long.

check out the fall 2003 Outreach:
http://ubpn.org/outreach.html

it has the article about Stephanie Zweig, a collegiate softball player who has done amazing things in the sport despite her injury.

also look at these news stories:
http://www.ncaa.com/softball/article.aspx?id=3224

http://www.ncaa.org/wps/portal/!ut/p/kc ... nd+Updates

I think these articles may help!

rich

It must be really difficult watching your child struggle with these issues.

Although I was 30 when I had my TBPI, I wanted to respond since I had to overcome some similar feelings. I've lived with this for 11 years or so, and spent many of them learning to hide my condition, and trying to look as "normal" as possible.

It wasn't until the last few years that I've realized it's OK if people look at me, or even if I look silly doing something. For the most part, people are incredibly curious about my arm, and are happy (and more comfortable) when I'm willing to talk openly about it.

The thing that has helped me most is being athletic. Even though I have to do things differently, I get a lot of respect from fellow athletes that see me riding a bike with one hand (my other arm in a sling) or running or swimming.

It really helped me when I started to see amazing challenged athletes like Sarah Reinertsen:

http://www.alwaystri.net/alwaystri.nethom.html

Not only do people not feel sorry for her, but they are inspired by her.

I never wanted to think of myself as "challenged", but I've realized that our accomplishments are that much greater because of the things we overcome, and people are inspired by that.

Not that your daughter needs to become a great athlete, but maybe seeing what other people with similar or even greater challenges can do will help her feel proud of her accomplishments, rather than embarrassed about herself.

Hope this helps:)

Heddi

Rich,

Thanks for the articles. We were at the UBPN camp in NY and Stephanie was there, but at that time my daughter was only 2 1/2 yrs old! I wish she could meet someone like her now.

Heddi,
It is just so hard because my daughter can't really express herself and is too shy to stand up to people that pick on her. Right now I am trying to help the best that I can, but it is heart wrenching to see her cry over something that she can't help. We try to point out the positive things that she can do all the time, but that doesn't seem to help. She is smart and funny and teachers love her because she is so well behaved, but challenging things just make her want to crawl into her shell.


Message was edited by: Momx2

My son Frankie is 15 now but when he was young he was very self conscious of his arm he even stopped talking to his best friend at mommy and me class when she asked why his arm was broke from that time on I made it a point to talk to his class and his baseball team and soccer team about his arm and how he does thing differently and may need some help from his friends it was great the whole class helped him and it brought him out of his shell as far as the team sports he played about 3yrs then it becomes competitive not a game anymore the coaches only want the best and the fun is taken out it all about winning so Frankie quit and that was fine he now skate boards. Another thing I always told him was it doesn't matter what others say or think about you it only matters what you think about yourself and if someone picks on you there the one with the problem not you. I never made a big deal of Frankies arm or at least that is what he will tell you but a lot was done without him knowing like talking with teachers and coaches or parents of the mean kids. I hope this helps also try talking with the school counselor our was great with Frankie she met with him once a week and popped in the class just to make sure he was doing ok. Mare

Would it help your daughter to be able to talk to some one else who is injured? I have talked with a number of children, just recently a mom I used to talk to a lot when her little girl was born allowed her little girl to chat with me on messenger. I think it can make such a huge difference for the kids if they know that they are not the only ones dealing with this.

I just recently learned that people admire what I can do and dont look at me bad for doing things differently. My boyfriend was dissappointed that I waited until he changed to put my hair up last weekend so I took it down again so he could see how I put it up and the look on his face, I dontthink I will ever forget, he was so amazed and just impressed.

This goes with softball too. Now, many people fail to notice that I catch and throw with one hand and those that do actually notice are impressed!

Self-esttem is such a battle! Even with my class knowing I still had quite the battle. It was my battle though, I hid my arm and I stayed in my shell. Wish I wouldnt have but it took me to where I am today. Please know that there is no shame is talking to a counselor! I did for a few years and it was amazing for me! If I should feel the need to talk to them again, I sure would.
Good luck to you and your little girl!
If she wants to call or email let me know and I can email you contact info.
Hugs,
Amy 21 years old ROBPI from MN

Thank you everyone for your replies. Since I posted the first time, my daughter had baseball practice again and my husband took her. She was playing catch with the two other girls on the team - one being her friend since preschool and the other one being the girl who bullys her in school. My daughter was throwing to her friend. Of course she can't throw the ball far enough for her friend to be able to catch the ball. The girl got fed up and said "Come On!" really snotty. Then she asked to switch places with the other girl. My daughter was devastated. All of my initial fears after she was born about her getting picked have come true!!! I had to take the day off yesterday because I was emotionally raw.

Tonight I am talking to the team and the parents. I have pictures after her 4 surgerues and I am going to show them how my daughter is going to catch and throw with the same hand so she won't be too embarrassed to do it. (We have been practicing that and she is getting pretty good at it!) I have also scheduled an appt with a psycologist for next month.

ok so i have to know, how do you catch and throw with the same arm? Are they wearing the glove and throwing with the glove? or how are they getting the glove off without dropping the ball? I am curious because i am trying to get my son Drake to play. He refused this season because unfortunately i think he heard hiss dad say he didn't think he could do it. But i know he can. Like everything else he will be a little different but i know it can be done i just don't know how and what exactly to teach him. He doesn't have much use at all in his affected arm.

Drake by the way is still in soccer and loving it and playing great. We still haven't found a support for his arm that works well, but we are still experimenting!

Teresa

Teresa,

My daughter puts the glove on her left hand (uninjured side) and catches the ball. Then she tucks the glove with the ball still inside in her right armpit. She pulls the left hand out of the glove, picks the ball out of the glove with her left hand, and then throws the ball back.

I did talk to her team and the parents the other night and they were very receptive to let my daughter try her new way to catch and throw. I just asked them to be patient with her and to make sure that she has time to get her glove back on before they throw back to her. The coach is VERY supportive too. My daughter felt comfortable to try her new way and it went pretty well. Her problem is not the strength in her right arm, but the releasing the ball at the right time. She tends to release it too late or too early because she can't control her hand muscles. She can't supinate or pronate either and her hand is too weak to pick the glove up on the right hand so that is why we don't really have any other choice. She is an excellant batter though!!!! And she bats right handed. Tell your son to give it a try! I am always amazed at what my daughter can do and we encourage her to try everything once.