It's on my heart!

[jennifer_w]

Hello Everyone!

My name is Jennifer. I live in Florida and have four beautiful children; ranging from the age of 3 to 9. There are two reasons I am writing today. First and foremost, I would like to gain some insight of how to encourage my oldest son, who has erbs palsy as as result of a birth injury. And I suppose I am also using this for personal reasons, as a means to address (and express) the concerns that lay heavy on my heart.

I wish every one of you could meet Wesley. He's such a vibrant, smart and caring little boy. He's funny, friendly and a great artist (all his teachers tell him so.) He has never used his injury as an excuse to not do something that he has wanted to do. He may have had to be creative and do it a little differently, but nonetheless, has always gotten it done.

However, recently I have noticed a change in some of his behavior. He is becoming more aware of his condition and is beginning to realize that he is "different" than his peers. I'm not so sure that his friends or classmates can pinpoint exactly what is different, but they know that he cannot do certain things (like chin-ups in P.E.) like they can. He communicated to me one time that people laughed at him in gym because he runs "weird" (he holds his arm in.)

I'm so afraid that he is going to confuse his injury with his identity. I'm already starting to see the emotional affect erbs palsy has on him. It's hard for me to look down the road, 5 years from now, and think about some of the major obstacles he may have to face. And i'm afraid that he is going to feel "alone" and/or that no one fully understands his situation--or possibly worse, that he will allow it to define who he is. And as most of us probably already know from our own experiences; kids can be so very cruel. It saddens me to think about how this sweet, carefree, and innocent child; whose thought-process should be far from worrying about “fitting in”, will too quickly be introduced to the harsh realities that come with his disability.

I hope this entry will not be viewed as pitiful; that’s not my intentions. I am not on here to express a hardship of this situation (or discount similar situations); as we know how very fortunate we are to have him in our lives. As I mentioned in the beginning, I guess I also wanted to use this as a tool to spill out my heart—and the concerns of this mom.

Would anyone be willing to share their experiences and how they managed to get through them (or how someone else may have helped them?) Or, if you have erbs palsy how it might have affected you (if it did at all?) Were you able to walk away from some of the hurtful situations with self-confidence or was it something that was a burden? Either way, what would have made a difference in your life? Can you offer a word of encouragement?

I hope i'm not over-thinking this. I know about as much as I can about the physical aspect of his injury (i've researched it since he was born--and have had him in therapy, off and on, since he was 2-weeks-old), and have done almost everything I can do to help him. But now, more than ever, I am beginning to realize that I need to understand more about the emotional aspect this injury could potentially play...and I want to make sure that I am able to do my very best to protect some of his greatest qualities; his self-esteem and self-confidence..

I appreciate your time and look forward to any and all responses.

Jennifer Ward
Pace, FL

[Mare]

Dear Jennifer Welcome
You have come to the right place for both you and your son to get answers to everyday questions that arise with bpi. And to get caring support when you feel lost or sad or mad. My son Frankie turns 15 yrs old Fri so we have been right where you and your son are now. First I have to tell you I think its harder on us moms then the kids and I think its harder on little girls then little boys but this is just my opinion. Frankie doesn't post he hates to talk about his arm with grown ups. He feels its just an arm and we make to much of it but he's a teen. If your son would like to ask him any questions or chat Frankie will do that his email is Tinny61@aol.com. I remember when Frankie was 8 yrs old he was bent down on the side walk tying his shoe on the way home from school and some boy walked past us and made a mean comment about Frankies arm. Frankie just looked at him and said hey look I can tie my shoes one handed you can't do it with two. It was that day that I knew in my heart that he would be just fine in life and he needed me to stop protecting him from the world and boy was I overprotective. At 15 Frankie likes to hang out with his friends and skateboard and talk on the phone to his girlfriend and he works at the local garage 3 days a week to save money for his dream muscle car. I should tell you Frankies left arm is non functional so theres a lot he has to do different from others but he doesn't care and in school if he needs help doing something he asks his friends or a cute girl. He is not shy he's more of the class clown and a lot of kids that interact with him in school have no idea about his arm even the teachers have said if I didn't tell them they wouldn't know it, he is just well adapted. I Hope this helps for a start you can email Frankie and I or even call us at 908-705-6918 if you or your son just want to talk. Mare

[marieke]

Jennifer,
First of all, let me say welcome to the message boards. No question or comment is "dumb" and all are welcome.

I have LOBPI (left obstetrical brachial plexus injury), what is called Erb's Palsy (you won't find Erb's used as much anymore). It sounds like your son has a functional hand then, right? If so he is like me. My shoulder is affected more than my hand/elbow...

In elementary school (Kindergarten to grade 6) I had to deal with some nasty comments/being made fun of at times and some teachers who were just plain ignorant (PE teacher). I had a few good friends who didn't care and this helped. I was also very active in a few sports/activities (figure skating and Girl Guides) and there no one cared and I felt like any other kid.

In high school (grade 7-11) I dealt with a few rude/nasty girls when I was in gr 7-8, after that people seem to "mature" a little, at least enough to know that dumb comments are not to be said... I had surgery at age 14 when I was in grade 9 and so then most of the school saw that something was different. No one cared though, as I said, they matured a little by that point. I was also active in school activities, Prefect Board, Jr and later Sr Band, Drama Club, grad committee, and did Ballet and Figure skating outside of school. In grade 10-11 I would tutor kids in lower grades during my free period. I developed confidence in myself through these activities and by having a few really great teachers who encouraged me. My parents did too, but coming from others seemed to make a bigger impact on me (it's the "you have to love me, you're my parents!" theory, lol). I had a good circle of friends who would support me, hang around with me, they didn't care about my arm.

It's not always been easy, but with a few good friends, support and love from parents and other adults, your child will be fine. He loves art, get him involved in art projects or later on, maybe set design with the drama club at school...

Good luck and keep posting!
Marieke (32, LOBPI)
http://nurse-to-be08.blogspot.com

[Carolyn J]

Hello Jennifer and WELCOME!,

You will find alot of sharing about the Secondary injuries related to OBPI, 1 of them being emotional streses due to childhood issues of teasing etc. I'll try too "bump up" the thread on teasing for you. It sound a litle like your son could have teasing going on...some boys often don't like to talk about because of appearing like a wimp; is there someone you can check with at school? Things go along OK sometimes for years and then new kids at school bring it on...

You asked a very important question about what your son will experience. Please feel free to come here and ask any question as we adults love to share...it heals. Venting does too.

Carolyn J
LOBPI/69 & counting...


Message was edited by: Carolyn J

[Chris88]

Until I found UBPN about a year ago, I never realized how much of an impact this injury has on the entire family. Except for my Dad being overprotective, my parents did a very good job of hiding any anxiety that they were experiencing.
I found and copied a few quotes from the board archives. They were written by some very wise OBPIers that also have experience in the parenting department.

Hope this helps.
Chris LOBPI

“…Most of all I would have loved to see my Mom have some of the support that is available today. It would have been so good for her. She was told it was not her fault but I know she always felt responsible. I wish she was able to find all this information and we could have shared it together as we did so many things.
As far as making their lives better, bring the children to support gatherings. Perhaps having local gatherings at least a few times a year would greatly help them as they begin to mature. Having people who are facing the same daily challenges and frustrations helps. It also helps them to realize that they are not alone and will help to build better self-esteem. They will learn from each other and what better teachers then those who live with the same injury."
Kath /robpi
Posted 18 Aug 2002

“…the future can be pretty scary for OBPI parents and victims alike. OBPI parents have enough to think about in the present let alone prepare their child for the future. However, I think my parents could have helped me look at the future better by discussing potential career choices when I was in high school. I may have listened or maybe not because at about the same time, I had realized that I could not effectively compete for physically demanding work. So, I focused on going to college and ultimately decided on a career in engineering. Hence, I think OBPI parents need to consider the maximum possible recovery of their child to include the education and training to lead a productive life. OBPI parents need to help their child take advantage of the educational opportunities available so their child can make the best career choice for themselves.”
John P.
Posted 20 Aug 2002

“I have read all the post on surgery techniques and how will my child do this or that. We all survived and have had good lives. Sure there are some of us that have had been teased when we were younger and some of us who still live in pain or discomfort, but we are stronger willed people. You’re kids will do fine. Just let them be kids!!!. They know their limits. When I came to this board, I received a lot of support from the adults. I thought I was alone with this injury as a lot of other adults thought. The world is very fortunate to have the technology that we have today. So be thankful!!!!”
Judy-T
Posted 31 July 2004

“I'm sure by now you do know that you are not alone.... When I was growing up my injuries were never talked about, therefore I didn't get any information about it until 2 years ago and then I took a computer course and learned how to get information about this. “
Carolyn J
Posted 30 May 2004

[Carolyn J]

Jennifer,
How are you doing?? Please let us know.

((((HUG))))
Carolyn J

[MaureenK]

Jennifer,
I have a ROBPI, and I have had similar experiences as your son. I think that he's a fairly normal stage in his life with this injury. When we're younger, we don't notice differences as much, they don't seem to matter. However, later on, we're all trying to figure out who we are and who we want to be. Age 10 or so through high school wasn't easy for me. People made fun of my arm a lot, and it hurt even when they weren't trying to be mean. I just wanted to be like everyone else. It was hard for me to realize that some of my options in life were limited. I would never be a ballerina, a model, a volleyball player, etc. (Not that I would have been anyway...) It takes some time to figure it all out.
I think you are doing the right thing by learning more about all aspects of the injury. I feel like no one ever acknowledged what a hassle my arm could be. (My mother still asks me to come over and change her light bulbs...) However, I'm also glad that no one made me feel disabled. It sounds like you have the right balance. Just continue to be supportive and understanding without being too overbearing.

[Baeta]

Welcome! Your heart is in the right place looking out for your son, you obviously care about him very much. I have a ROBPI and i think the worse part for me was in grade school and junior high. I got teased tremendously. I have to say though that if it wasn't the encouragement from my parents i would be completely withdrawn. The teasing is probably going to be a reality for your son, but the best thing for me was my mother encouraging me to do normal things and expect respect. For the longest time i thought nothing wrong with my arm as a child but as i got older i started to feel every out of place and like everyone was mocking me. when in reality most people don't care and those who do have something in themselves that they hate and feel the need to take the hatred out on someone else. As an adult i lead a normal life as possible, i work i'm engaged i go to college. your son is going to notice he is different then others, but point out to him, isn't everyone different. it took a lot of times with my mother sitting me down and explaining that i was just a person, and not my injury until it really sunk in. I hope some of this helps! You are not under minding anyone else's injury you are just a concerned parent, like any parent when a child realizes something about themselves that bothers them.

[jennifer_w]

Hello Everyone,
I just want to thank you guys for the kind welcome and warm responses. It means so much!
I was talking to one of my family members this morning (and bragging about the kindness (and care) you guys have shown through your comments)and I realized, more than ever, that we (as individuals) NEED that kind of support (for so many situations) and I feel fortunate to have found such a place. So, Thank you.

This also made me think about all the others who are in search of a support group where their feelings, concerns and thoughts can be shared. It's been on my heart for some time to organize a group locally. As far as I know, my community doesn't have this type of organization, but i'm sure there are plenty who would participate.

Any suggestions of how I could go about getting a "support" group started?

[jennifer_w]

Hi,
I just wanted to thank you for your words of encouragement (and hope)..and I think you're right about it being harder on the moms. I think the momma-bear in us comes out when we feel someone's messing with our cubs!

I will definitely keep your number and email addresses handy. I really appreciate your openness and genuine interest. It's a virtue that seems to be rare these days.

It is so nice to hear that your son is doing great. He sounds like a very confident teenager; which is exactly what I want for my son.

Thanks again!
Jennifer