United Brachial Plexus Network, Inc.

Here's another question for all you "older" OBPI. (In older, I don't mean old, just older than my son who is two, LOL) I'm wondering how your parents handled your BPI and if you liked or disliked how they treated "it" or you in regards to it. I mean, I am planning on talking to Caleb when he gets older about what happened at his birth and telling him everything so he can understand. But I'm also wanting some words of wisdom on just how you would have liked to be treated by your parents or if you thought they did a good job on it. Also, there is a big debate amongst my friends as to whether we should consider our BPI kids "disabled". I'm not sure if labeling my son disabled will change how I treat him or not...to me it's just a label...but perhaps it's a negative label he doesn't need. Let me know what you think. I really appreciate you all letting me post here and ask questions. Gaining your thoughts on this is valuable to me as a parent.

Kari

Kari:
I have written of this in previous responses so forgive me if this sounds repetitive. Like you, my parents were devastated by my injury but soon focused on doing what was needed to help me. They worked hard to give me the physical therapy and surgery to achieve the maximum possible recovery. Their dedication and support cannot be overstated. All during my childhood and teenage years my injury was essentially no big deal to my family and friends. Consequently, it was no big deal for me either -- more of an inconvenience. I've never considered myself as being disabled. Certainly, there are physical tasks that are difficult for me to do but I figure out a way.

John P.

I am with John on this one.

My Mother never shared her pain with me. She was very matter of fact about my injury. I was injured by the doctor he pressed to hard and that was that...

I had extensive family therapy... The total focus of every game was getting me to move. I was told I could do anything I wanted to as long as I made up my mind to do it... And I believed that!

I never was treated as disabled I never heard that word nor handicapped nor did I ever think of myself that way...

I was treated just like their other children but since I am the "baby" everyone played all sorts of games with me... of course now I recognize all those games were therapy and it was a family effort.

I think that I was given the best care that they could give. And some of the things I had to do are still the same things that children have to do for therapy today...

My love of clay comes from my first toy... clay for my hands.. I am very grateful for all the care and attention... and as a way of honoring my Mother I stayed here to support others and give them what was not available for her..

I am a mom of a four year old with a robpi. I can tell you that my son has never heard me say that he cannot do something or that he had a bad arm. I would say it yes, but behind closed doors when he wasn't around. When he started preschool a month ago, he had no idea that he was "DIFFERENT" or "DISABLED" He went in with the other kids and began to play with them like he was one of the crowd and then all of a sudden his teacher heard him say " boy, your arm looks funny" looking at another child's arm. Well, it is his arm that looked funny but he is used to it and even though he has brother's and sister's he didn't realize that his arm wasn't right. My son has an advantage with older siblings I guess and although mommy has spoiled him(IT IS A GUILT THING) I don't let him get away with saying that he can't do something. He swims, throws a ball and does eveything a four year old should(Two surgeries later) He has brought so much joy to our lives that I wouldn't do it any other way. Yesterday, he found a old splint that TCH made, that he never wore because it was 3 sizes too big. His oldest brother is in a cast because he broke his arm, so he insisted on wearing his "CAST". The child never would keep a splint on and now he begs us to put it on. Anyway, I feel that we as parents choose how our child feels about the injury and all I can suggest is that you do what you feel is right(IT HELPS THE GUILT ISSUE) Sorry so long winded !!!

I cannot add anything new to previous posts. I never felt disabled too. I just needed some help sometimes to do a few little things.
When other kids asked me why I had my arm in this way since I was 3-4, I was more or less aware of what happened to me. So I was able to answer them.
What's more? Ah, do not feel guilty of what happened. Just help your child and support him in every way is possible, to recover the more is possible. But you are not responsible of what happened!
This is my opinion..
Gabriele

I remember thinking how mean my father was when he sat me on the floor at 5 years old (47 years ago) and told me to learn to tie my shoes by myself. He used to say, "You have to learn to do it on your own. I won't always be there to help you."

But then, as I got older, if he saw me struggling to do something by myself, he would help me out. Never in a manner like,"because you can't do it." It was more like, "let me make this easier for you."

Up until he passed away in 1991, if I told him I was making soup,he would show up at my door just to peel and cut the vegetables for me.

My soup has never tasted the same...

-Stephanie

Stephanie,

You brought tears to my eyes. I hope my son Garrett ( 3 months ) will someday be so reflective.
Bobbi