United Brachial Plexus Network, Inc.

Hi
The Board of Directors, of UBPN, are in the planning process for Camp for 2009 in Florida.

We had a nice group of OBPI/adults at camp this time and a GREAT group of teenage obpi campers.

What is it that would encourage more adult/OBPI to attend Camp?

Would those who attended Camp care to share what Camp experience has to offer for adult/obpi?

What would you like to see at Camp for Adult/OBPI?

Kath robpi/adult
Member BOD UBPN

Kath,
I have a couple of thoughts on this:
Either more than one session with teens,& children [with moms...then exit Moms] for questions, venting, suggestions or a designated "hangout room" for the whole weekend for the "Injured Only". a great place for privacy conversations with teens and pre-teens.
Also a "Mom's Only" room , along with an open community setting too like there usualy is.

More BPI families are in the East and Midwest corridor so I feel Florida WILL be more accessible for more adults to attend/ get time off from work for the travel days.We can also continue to post and "bump up" our experiences and BENEFITS each of us recieved at Camp 2007.It was soo awesome including the introduction to the Myotrac machine that was a surprise to us all.

ONE fun "field trip" together to a local attraction?

HUGS,
Carolyn J


Message was edited by: Carolyn J

I think if thee was more that actually pertained to adults like medical info and therapy for adults. Just because I am an adult does not mean I dont want more function.

Or more info on secondary injuries/issues.


As far as what camp has to offer, well, I personally cant wait for camp because it is a chance to see a lot of great people in similar situations. Camp offers life time friendships with other adults and younger children as well. I love being able to ask others of their experiences and what helps and what does not. We have that opportunity to learn new tricks such as dealing with buttons, shoe laces, zippers... We also have a chance to teach the little ones how we do things so that it may be easier to them some day.


Hope this helps and other people please feel free to share! What would you come to camp for?
Hugs,
Amy 20 years old ROBPI from MN

I agree with Carolyn that we need more time with the mom's or dad's asking us OBPI adults questions and more time with the kids to be able to, we could even help the tweens (10-13) yr olds with stuff like how to tie your hair up and stuff, like actually show them and get them to try, without the parents watching. We can always get the parents to watch after the kids feel comfortable. I think I would have been embarrassed at first letting my mom watch me do it when i first figured it out...
Anyway, I can't think of much more now, my brain is dead! If I come with more, I'll post again.
Marieke (31, LOBPI)

Kath,

I liked the parent interaction along with the kids. However, I felt the parents really would have understood and got more out of it had they been the only one's to ask us adults the questions.

I did notice some of the kids getting a bit embarrassed when their parents were asking questions and their children were sitting right there.

I just feel we could answer the parents questions more in depth and hopefully get across to some of the important aspects of our injury which would later help their children prevent secondary injuries.


The kids panel was great also. I was going to try to dig up some self-esteem information from our counselor at school and see if we couldn't try to incorporate it into the kids panel. Those children asked some of the toughest questions to answer and a lot of the questions had to do with self-esteem and handling teasing on the playground. Just a thought.


As far as getting more adults to go: I go to camp mainly because it's great knowing I am hanging out with people who understand what I have gone through. Although all situations are different it is just a great sense of comfort to be at camp.

I also go to camp because I feel if I can make a difference in just one child's life by helping answer questions or showing them how to do something to accommodate to their injury then my camp experience is absolutely worth it.

More awareness.. this is the first time I have came across this website and it has me pretty excited. I didn't know there was a camp with similar situations as my self. I think its great just being able to meet other people.

I hesitate to express my opinion on this but I would be interested in an adults only function--either as part of camp or an extra day adults only .Although, I'd like to attend an all ages BPI camp, I'd like a place to vent and express myself with other birth injured adults where I can freely talk about the effects this injury has had on my life and my own struggles with overuse and emotional issues.
While I agree that the kids are extrememly important, I don't see a whole lot devoted to adults in reading the itineraries for camp.
That may be a selfish attitude, if it is I apologise. I also realize that my overuse at 54 may be an unnecessary scare for a mother whose child is receiving the information, surgeries better ways to preserve function --but in my life--the problem is already there and I would be interested to see how other adults are coping.
I hope this doesn't upset anybody. that is not my intention--just my wish list
Thanks
Pat

Pat, this is exactly what we need to know! Thanks for posting your opinions.

Just wanted to share though that even with the information (I found UBPN at 13) and the surgeries (I have had 5) I am starting to see overuse of my left arm. Thats really sad as I am only 20 years old! It might be a scare but I am thinking unless something more changes, it may be a reality.

It would be cool to have an adult only day.
Thanks again for posting your opinion, it matters!
Hugs,
Amy 20 years old ROBPI from MN

An "Adult only Day" at Camp 2009 sounds great since we adults don't usually have small children to hurry home to get back to school...oops, Rachael, sorry, you'd just need to come alone next time for the extra day. Let's do it! Our emotional issues are very important to share because most of us adults grew up thinking we were the only ones with this injury and need more private time to share and recieve validation that we weren't "bad" or just complainers that our pains etc weren't just "growing pains" or "all in our heads"! We also need to help each other learn how important it is to ask for help from now on so as to save ourselves from further injury to our "good" limbs from over compensation/over-use. We never seem to have enough time to discuss these things.

Thats my 2 cents more....
HUGS,
Carolyn J

I totally understand Pat's hesitation to state her desire. I feel the same way. I went to the last camp, and pretty much felt that I had spent a lot of money to get there, and to be there, but there was not enough there for me. Camp was SO focused on the children. I reasoned that if this is the way that the board wants to do it, nothing I say is going to make any difference, except that they will see me as selfish, so why bother to say anything? Instead of doing that, I had decided that camp was not something I needed, or wanted, to do again. However, I totally agree with Pat.

I'm not dead, yet! When I'm dead my body can go back to the earth and nurture other things which are still living. Right now I'm still alive. I want to get something out of camp for me! Not just the experience of nurturing the children.

I'm not saying that there's anything wrong with nurturing the children. Of course there's nothing wrong with that. It's something that we should do. But I need more than that. I need to have my own needs recognized and addressed, too. If that makes me seem selfish, I'm sorry about that, but this is the way that I feel.

Caregivers are often told to take care of themselves, or they will burn out while taking care of others. This camp had too little opportunity for the adult OBPI's to take care of ourselves. While today's OBPI children know that they are not alone, most, if not all, of us adult OBPI people grew up thinking that we were totally alone. There was no one else out there with an injured arm like ours. We may all have needs that could have been addressed at camp, but weren't.

Events or activities for adults with BPI are also needed so that the children of today can see they have a future worth living tomorrow. They will not be valued only as caregivers to the next generation of BPI children.

I'm sorry that this is so long, but I had things I needed to say.

Joanie