United Brachial Plexus Network, Inc.

I am a father of a 21 yr old son who was born with erbs in his right arm. I have been reading the mesages for about a week.The messages have been so helpful to me.I gave some to him, at first he refused to read them,but he did late last night.I think it will be of great comfort to him that he is not alone.My wife and myself are so thankful.I will definitely be on line quite often.Looking for advice for him and myself and offering some when needed.

I'm glad that you've found this site and that the contributions made by forum users are helpful. They have been very helpful to me too.

It's important that your son know that he is not alone with his injury. I'll be 65 next month so I've dealt with my injury for along time. Questions are always welcome and, as you might have aleady noticed, will often result in many different view points based on many unique life experiences. It's very likely that yours and your son's experiences may be helpful to someone else. We'll be interested to read about them.

John P.

Thanks John for your response.My son feels so inadequate and concentrates on what he cannot do rather than what he can.He is so concerned about what kind of work he can do for a living.He dropped out of college after 2 yrs and has done nothing for the last 2.He was awarded some money due to the his injury.His anger is taken out on my wife and myself.He had a job offered at a sleep away camp,drove to upstate NY and left after a couple of hours. He said dad I felt so different than the other counselors.It broke my heart but it must have been so much harder for him.I just hope he finds happiness some time in his life,He refuses counseling and I do not know what else to do,Thanks,lenny

Thanks John,I am not sure if you received my previous response, so I will reply again.My son is so angry at having erbs.He dropped out of colege 2 yrs ago and has done nothing since except mope and vent his anger towards me and my wife.He was awarded some money due to a law suit but is so concerned what his future holds.He had a job offered at a sleep a way camp,drove to upstate Ny. and left after a couple of hours,feeling different than the other young men his age.My heart broke for him because he was so excited about the whole idea.I know he was devasted.He will not go to counseling and I do not know what else to do.Any advice would be welcome

Hi rosey,

My daughter is age 20 and was born with severe left BPI. I am sorry to hear he quite college. What are his interests, hobbies, likes, dislikes?

My Jill was also born with a talent for art. Seeing this, I took her to private art lessons beginning in 5th grade. Now she is a Junior in college to become a k-12 art teacher. I do wonder if she will be able to get a job. Our high school only has one art teacher (they could use 2) but Art is not funded very well, and often cut when money is tight. But still this is what Jill does best. When Jill was in High School she became discouraged about becoming an art teacher when in her art class they had to do pottery. She was afraid that when she became a teacher she would not be able to teach pottery to her students because of her disability. I suggested that she could instead bring in an outside person (maybe a pottery artist that could benefit from the exposure) that could teach for that one area. Apparently the idea worked and Jill has gone on to study for her profession.

Does your son have any use of his OBPI arm or hand? My Jill does not like to come on the posts either. She also does not like to talk about it much.

Years ago, when she was young I worried about her being teased at school. At that time a friend pointed out that because she was a girl, she probably would not be teased as much. My friend thought that boys teased each other more about physical things. I realized she was right, and fortunately, Jill was not teased very often. Has your son been teased and mistreated about his injury? If so I can imagine that makes his feelings about his injury worse.

Does your son have siblings he can talk to? My Jill has sisters close in age that she talks her heart out to. I am so sorry the Camp didn't work out. I wonder what someone did or said to you son?

Hi Angela,Thanks so much for responding.No, Adam was not teased at camp or highschool.Rather a popular guy in the latter.He just feels so different and inferior due to his arm.He is a great athlete and feels cheated that he never could pursue his dream in sports,but how many of us men make sports a living.Someone probably said something in college to upset him greatly that made him leave school.He went to the camp,saw a bunch of guys with basketball shirts on and could not deal with it.That is 1 sport that is more difficult due to BPI.

He has limited use of his arm and stays in great shape,but has not gotten over the anger phase and will not seek counseling at this time.Treats both my wife and I with no respect,our fault etc.I know he loves us both greatly,the vulgarity and fits of rage are sometimes very hard to deal with. I brought home some mesages from the board.At first he threw them on the floor,but I found them in the basement so I know he read them or hopefully he did.Getting on this site would be so great for him. Great for me and I just got on a week ago.Yesterday I printed out numerous message and pictures of the ubpn camp gathering.Hopefully he will decide to read them.I dont know what else to do.I have gone to a therapist that he used about 5 years ago to help myself deal with him Hopefully 1 day he will find his way back to someone to speak to.My daughter lives in LA and has tried to speak to him.He even went out there for 3 months and rented a place close to her.He hung out for that time and did nothing. Any advice would always be appreciated.Have a good weekend and again appreciate your response

After hearing about your 21 year old son feeling upset with his situation, I felt compelled to respond. I am a 27 year old man, I have had BPI in my left arm my entire life, and as you probably know I lack the ability to do things the way someone with two fully functioning arms would. I also grew up with social skills that were hard to develop because nobody else looked or did things quite like me. I am currently a successful personal trainer in PA, and have had a long line of positive athletic and scholastic achievements (ie, bachelors degree, wrestling, karate, etc...). I would like to talk to your son, maybe I can offer him some insight to overcoming the "looks", comments and any other inhibiting situations. Or maybe he'll feel better to know that it'll take more than this obstacle to hold him back. If he decides he would rather not talk to me, thats ok, but please make sure as his parent you understand that positivity and normal inclusive treatment will help him feel as normal as he really is. If you decide to contact me, you can e-mail me at jbc762000@yahoo.com, take care & tell your son to keep his head up, life gets great if you make it happen. respectfull yours, Joel Craig

Thanks for your reply Joel,I tried e mailing you,unsuccesfully,my e mail is Lrosenfeld@mlslirealtor.com.I would like nothing better than to have my son contact you.It breaks my heart seeing what he is going through and if it does that to me I could only imagine how he must feel.My wife and I have been positive with him,he just feels inferior and has been quite depressed.Any advice would be appreciated.Please e mail me,maybe I had the wrong address.thanks so much for your concern

Hi. I'm new here and was reading your post about your son. I know how he feels. I've been living with Erb's for 30 years now. Like him, I had many dreams though mine focused on music. I wanted to play the violin and tried very hard to. I found that if I did my exercises it helped but eventually it got harder. So I turned my focus a bit. I found I had a talent for singing and worked on that. Unlike your son my parent's ignored my disability all my life. I was tormented terribly in school and almost flunked out of PE several years because my Father refused to inform the school of my limitations. Over the years I learned different ways of doing things in sports and such. I'll admit people thought it was weird the way I did things but I found that it didn't matter as long as I did them. I even took gymnastics which was quite a feat. I'm still rather self conscous (sorry spelling isn't my strong suit) about my arm but you wouldn't beleive how many people truly don't notice it. I try to focus on that. I know it's tough not to let our disability to be more of a problem than it is. I really hope your son is able to come to peace with this.

Rosey,
I hope your son is able to read this site soon. I think the people and information here will eventually help him cope better.
Best wishes-