United Brachial Plexus Network, Inc.

Hi everyone,
I hope you don't mind if I ask you a question.
If you could think of one thing that you wish your parents had done differently regarding your injury, what would it be?
Anything, big or small - I really would like to know.

Thanks for sharing
Mary

Mary
I can't think of anything my mother could have done more for me...
She did the best she could to treat me as a normal kid while getting me to move my arm and gaining the best possible movement.
When I was young I was so annoyed because she gave each of my arms/hands assigned tasks.
I realize now, that if she had not pushed me, I would never have moved nor would I remember to use both hands.

When I was born they, sort of, gave up on kids like me and I have a severe injury.
Formal therapy was limited and then it was up to the parents to do the rest.
My parents devoted their time to getting me moving.
My mother was left with most of the work because my Dad died suddenly when I was only 10
She had to do it all on her own.
One of my older brothers was a great help to her and constantly "played with me".
He took me to the park to hang from the parallel bars.
He would do arm stretch and even held my feet so I could make believe I was walking on my hands.
This all contributed to the recover I have.
They did the best they could with the medical knowledge and advice they had at the time.
My family used to "play" with me and I never realized all that "play" was therapy.
It was when I got older that I realized other children did not do many of the things I had to do.

My mother use to tell me "can't means you won't".
I was never allowed to say I could not do something.
I was given the courage to try anything.
I was told I could do anything I put my mind too!
Sometimes she tried to steer me away from things she felt might be dangerous or particularly frustrating.
She gave me the strength to believe I was normal.
I never thought of myself as disabled nor did I expect anyone else to pick up my slack.
If anything I tend to push myself beyond what I should do.
I guess what I am trying to tell you is she gave me WINGS.

BPI children are very creative.
I never look at anything without wondering "can I do this".
It's funny I never think "do I want to do it" just can I.
As a result I have explored many artistic crafts and enjoyed them.
I guess you could say that is one of the positive results (for me) of being OBPI.

BTW I was not able to use my hand until 5/6 year old and my fingers and hand are weak but I can type very rapidly with both hands.
I have a pronated hand so that makes it easier.

Please feel free to ask any questions you would like.
I realize this must be a tough time for you.

Kath (robpi/adult/66)

Dear Mary,
I too, am glad you asked, but it is hard to pick just 1 thing. EQUALLY important to me is :
#1 I wish she and others TALKED about my LOBPI; it was "that elephant in the corner" no one ever talked about, thus I felt "they" were ashamed of me and I didn't have any self esteem until I found UBPN at age 65 and was/AM Validated.
#2 Let my siblings play with me. They were told they couldn't play rough, so they didn't play at all & subsequently the 3 of them never bonded with me & we are "strange" even to this day.

I am always open & willing to answer all questions. I am very comfortable doing that.
HUGS,
Carolyn J [I smile alot now!]


Message was edited by: Carolyn J

I wish my parents had explained it to my phys ed teachers in elementary school (primary school). She never understood that I could simply not do things the same way or at times at all. I would feel stupid and not good at gym, when in reality it was b/c I had more trouble with my left arm (climbing a rope, shooting a basket, lying flat on my back was painful due to the winging I have).
But really that is all I can think of,,,
Marieke (LOBPI age 30)

Mary:

I can't think of anything my parents would have done differently except maybe to explain the nature of my injury a little better. They told me that I was injured during birth - that I got stuck - which of course was true. However, for many years I went to a PT clinic with kids that had Cerebral Palsy. I became friends with the CP kids there. Consequently, I figured that I had a form of CP but not as severe as others. I cannot recall anyone ever putting a name like BPI or Erb's on my injury. That said, I doubt that at age 10 or even 25 knowing I had a BPI instead of CP would have made any difference in my treatments or the recovery I achieved.

A doctor set me straight when I was in my early 30's. It was uncanny how he was able to touch my hand and ask if I felt anything. I didn't. He smiled and then proceeded to explain my injury in detail although he never did put a name on it!!

John P. (ROBPI for 67 years)

I too wish my parents would have explained a bit better what had happened to me when I was born so I could have explained it to others.

Like Marieke, I wish they would have explained to my gym teacher/ basketball coach why I could not do the things others could do. I was always known as a tough strong girl until I had to do a push up in gym/ or a pull up on the bar and I reallyh remember telling myself I can do this I know I can. But when the time coame I had absolutely no strength to do it.

Basketball was so humiliating to me because # 1 I wanted to play so bad however, I could not dribble a ball with my left arm. The coach used to put me in a room before each game and make me dribble with my left arm until I was in tears before each game. The coach just thought I was uncoordinated. It was very embarassing to me.
All of my brothers and sisters were very athletic and involved in all types of sports. I would try but only to get cut from the teams the older I got. I suppose now days they would consider it discrimination or something because of the disability but back then nothing was every really said or done. You just simply got the boot.

I met a kid last year who has OBPI and is a great basketball player. I really enjoy watching him play because I remember trying so hard and not being able to get a chance.

My advice, tell your child to try anything, explain what has happened to them with their coach and the child will eventually decide wht is comfortable for them.

P.S.

My parents probably would have explained better to others what happened but the doctor told my mother I was deformed when I was born and if they did range of motion on my arm it would eventually straighten out.

I would like to put my two sense in here as a mother of a child with BPI. I think years ago, there weren't the resources, that we have today. I would have never known the true "MEANING" of my son's injury if it weren't for the internet. My daughter who is 15 was born with shoulder dystocia and I would not have had a clue so in "DEFENSE" of the parents of some of the adults, they probably didn't have the "WEALTH" of information that we have now.......I don't think that they did it on purpose. I talk to Brandon's teachers every year and they always look at me strange but I have documentation that I print from the internet. IT wasn't always like that.....GAYLE

Like the other adults who have posted, I am so very grateful to my parents (both now deceased) for all that they did for me. In an Ohio small town and on a limited income, they still managed to get me to PT, and sought out specialists who performed two operations (in the 60s) on my hand and shoulder.

To be honest, there are two things I wished they had done. I would have liked to have met another child with the injury and I think we all could have benefitted from some family therapy.

My mother expected a lot from me, and while that did drive me to succeed, it also left me wondering if what I did was ever enough to make her happy.

Nancy Birk
UBPN President

Mary
I know I said a lot already but we each have different experiences and our families were given different information.

I am 66 but my mother was told when I was 2 weeks old that I had Erb's Palsy. She always spoke to me about my arm and how it happened and her limited knowledge of this injury. The only problem for me was it seemed as if no one else ever heard of this injury so they did not understand what I was talking about. She started therapy on me at 3weeks and I wore a brace for the first 11 months of my life. It was only removed for massage and ROM. Information was not out there for her. I searched and could not find any and thought they made up the silly name Erb's... LOL... until I discovered UBPN I was at a loss for medical information or others who understood.

If I could go back in time I guess the one thing I missed most growing up was meeting another obpi child to talk to. I know my Mother really could have used some support. I agree with Nancy about family therapy. In my case I am from a large family and each of my sibling had different responses and feelings about my injury.

Try to bring your child around others who have this injury it is so healing. I met my firt OBPI when I was 60 in Fla. Judy T and Nancy it was such a great experience.

Kath adult/robpi