United Brachial Plexus Network, Inc.

I didn't want to hijack another thread but I really am curious about some comments that were made on the thread regarding Adults & Camp.

I noticed some comments about wanting more time with injured only. Especially getting the injured kids away from their non-injured adults. It even sounds like some kids are embarrassed with their own parents about their injury.

I do not understand this. As a child you should be more comfortable with your parents than anyone else! And I am always leery when people what to remove my presence from my child.

Does anyone care to expound on this?

Thanks,
Kristie

I am 32 yrs old and I have klumpke's palsy. In my experience, i have found it to be excruciatingly difficult to fully explain to family members how the injury impacts my life. I still get comments about how no one else really notices it, so it should not bother me. I have never met anyone else that had this injury. If I did, it would be a very emotional experience. I would be asking the person lots of questions about difficulties that they have had, and how they deal with things. I would imagine that the conversation would be smoother without others around to listen in.

I am the Mom of a young child injured at birth, so this what I was guess the reasoning would be. Here's an example.

At camp this year, there was an opportunity for a meeting for Siblings of injured individuals (whether obstetrical or traumatic). My 12 year old son attended seeming interested in seeing what others had to say at this meeting. When I asked him afterward how things went, he said, "Great." When I asked him what was talked about, he said, "What we talked about in there can be personal for some people Mom, and it should stay in that room." I took no offense to that. I was actually proud of that statement because he was respecting the rules of the meeting, and the right to privacy after freely expressing themselves for all those individuals who shared in that meeting. I didn't take that statement as anything along the line of him trying to hide anything from me. I don't know if he was one of the kids who chose to share in that meeting or not. I may never know, and that is okay. If he did share though, I am grateful for that opportunity being extended to him. It is hard for my son having to rearrange his schedule for his sister's therapy and doctor's appointments, seeing her getting "more attention" as he self-describes it at times, and I am sure it is difficult watching his sister struggle to do daily activities that he takes for granted, knowing that life doesn't have to be this way for her but it is. He is helpful and I am grateful for this and tell him this, but sometimes you need to be around others who walk the same walk and talk the same talk.

I think basically "more time with injured only" as you put it basically is just trying to get others who are walking the same walk together and letting them help one another in an environment where there are no parental or MD eyes watching them. It may be difficult as a parent, but it is basically a support group that we as parents cannot be a part of, just as our children cannot be in our parental support groups. It's not to separate and divide in a negative connotation...but rather to bring others who understand together and are maybe able to help one another.

I hope this helps and it seems I've started rambling again. I wish I had the knack for just putting things in a few words instead of rambling. Sorry.

Tanya in NY
Amber's Mom, ROBPI, 5 years old

Actually, I thought one of the reasons was that it would also be easier and more comfortable for adult injured to talk to parents separately and answer their questions without their kids around. There is a certain discomfort with talking to parents "in front of the kids" and different things might be said/discussed if the kids aren't there. I think I would be a little uncomfortable discussing my experience and questions without Joshua present if he were older and vice-versa.

I think it's really important to realize that the parents of OBPI and the children with OBPI have very different experiences and possibly very different feelings and questions about the injury and dealing with it. And especially if the parent still has some guilt or grief over the injury (who doesn't have at least some?) the child might also feel guilty for really going into all the things that are hard for them with mom sitting right there because they are very sensitive to us. So some separate time for them to ask questions just for them sounds really important, especially for the older OBPI kids.

My two cents.

Kate

I don't have children and I am a TBPI so didn't have to deal with this as a child but I've attended 4 or more of the injured only panels. I'm also very sympathetic to your statement "leery when people want to remove my presence from my child" and would feel the same way if I had child.

As much as parents try you'll never understand this injury through the eyes of the child or injured. I see people at camp who have had this injury decades and it isn't until they interact with another injured person that they realize something new about it either positive or negative. If people with the injury don't fully understand the dynamics of it then you really can't expect the non-injured to even come close.

The number one question that comes up during these injured only panels relates to playground time. Either the monkey bars or some kind of climbing equipment. Kids are cruel and this becomes an immediate target on the playground. The relief seen on kids faces when they realize everyone in the room is having the same struggle is amazing. It's the only time in their lives when everyone, and I truly mean everyone, around them is having the exact same difficulty. This is a comfort that cannot ever be duplicated. Most kids cannot express a feeling of watching everyone else in school be able to do something they physically cannot. But, there is always one in the group who is able to express a little. That one triggers another and another and another and soon enough you've got a room full of kids who have never discussed this before discussing it. It's not because they didn't want to or were purposely hiding it from their parents it may simply be the fact that everyone around them is now sharing just enough to provide a collective understanding and it brings peace to a lot of these kids.

Please don't ever think that a child is embarrassed about their injury because I don't think it really is embarrassment. Every child wants to make their parents proud. It is extremely difficult to admit that you can't do something simply because you physically can't and not because you don't want to. Parents praise their kids and kids hear this praise. They know what other parents are saying about their friends and they want their parents to be able to say the same about them. There is a lot being bottled up inside the head of any child. When you've got a physical injury there is more in there then I think parents realize at times. It comes out only in a safe environment and for many that safe environment happens when we feel as if those around us are bottling the exact same emotions. This is why the injured only is so important.

This is also why the sibling group is so important.

It's why the UBPN has a fathers panel and a mothers panel.

These panels create the environment where, no matter what it is, you can be sure someone else in the room has that same thought that has been in your head. It's the one place you can share that thought and no one is going to think differently of you.

Kristie I don't doubt that your children are more comfortable with you then anyone else. That comfort is so important they would not risk putting you in an uncomfortable situation by asking, telling, sharing, etc. something with you that the child feels would put the two of you in an uncomfortable situation. I certainly didn't discuss everything with my parents and I don't expect any child to either. I think we all have sought out the advice of friends when we were unsure of our parents reactions to our questions. Where is a child to go to find a friend when they are the only one they know with this injury?

Many of the questions that were asked at Camp during our injured only session with the kids had to do with school and how to deal with bullying or being made fun of. As a child I had a hard time telling my parents what was sometimes said and their advice was not always helpful or what I wanted to hear, BUT hearing these same things from other kids who have exactly what you have means a lot! The older kids gave some great advice as did we adults who were there.

We also got a chance to talk to the parents and answer their questions. The kids were present for this, and some questions had to do with how you g your hair in a pony tail..
(I may put up a clip of me doing that on Youtube that btw).

It has nothing to do to with hidding things from the parents, it's just sometimes kids are shy to ask certain questions, and want to speak to those who "get" it.

Marieke (32, LOBPI and MISSES camp)

"Ipeverywhere" said it so beautifully and accurately for all my life experiences and at Camp as well talking to young'uns trying to bring a few out of their selves and share with me. Those same girls and a boy, did very well and better in the Injured only session; it was sooo healing for me too, to see the light shine in their eyes that I hadn't seen before when I talked with them. They felt soo at ease asking me questions after this time together...I love questions!!

Marieke, I miss Camp alot too. 2009 Can't come son enough!!

HUGS,
Carolyn J
LOBPI/69

Hi Kristie,
Injured only time is like Ryan said the only time we are together with other people who truly understand what we are going through.

There is not a single thing that I am embarrassed to talk to my parents about but try as they may, they just dont get what I am going through.

Example, Recently I emailed my doctor a question, I wanted to know how long until I would be allowed to go rock climbing again, when I got the reply of "never" It was devastating to me. So I tried telling my mom, my sister, my OT, my roommates and very close friends and even other parents with injured kids but most all of the replies I got from that were something along the lines of find another hobby because rock climbing is not important in life. After trying to talk with some of the non-injured people I took my troubles to Kath (Adult ROBPI) Kath actually understood what this meant to me and why it hurts so much to lose this ability.

Sometimes only other injured people are able to help get us through what hurts the most. This is very similar to younger kids who so desperately want to do the monkey bars. It hurts a little less when those around you are in the very same boat that you are in.

Its not at all that we dont want parents around, you are doing every thing youcan to learn what we go through but why try and get the answers from some one who is learning when you can get them from some one who is living with it?

Another angle to this is sometimes our parents dont care to talk about what is going on because they still havent been able to deal with what happened. I would absolutely love for my dad to come to camp so he can begin to deal with what happened almost 21 years ago. he never wants to talk about my questions, in fact, every time I bring it up when he is around me I hear the same thing "It never should have happened" well, I know that but it did and I need to live with it. So I get that chance when no parents are around, its ust me and my injured friends and we are all in the same boat.

I hope that helps, if it brings more questions, please do ask! You can email me too if thats more comfortable.
Hugs,
Amy 20 years old ROBPI from MN (also missing campand all my great friends!)

I guess it's hard for a parent to understand that you can't possibly understand what your child is going through.
It's not that injured adults want to be alone with the children.
It's really about the children and their comfort level. When the parents are in the room the children are very quiet.
Parent tend to think that certain things are important. But children have different issues that are really important to them.
Once their parents stepped outside the room the children were very open and had so many questions for us.
Most of the questions parents could not answer because they can't identify or fix the problems that bpi brings to our childhood.
We can all identify the problems of childhood.
But only another bpi can share the experience of childhood as a bpi injured.
It's not easy to be a bpi child struggling to fit into the crowd.

Actually, I think bpi children can sense the pain in their parents eyes when they tell them of their struggles.
I think parents tend to brush off things that THEY don't think are important.
But to a bpi child, some seemingly trivial things are so important.
It's hard to watch others do the ordinary mundane things in life so easily and for us it's such a major struggle.

My husband comes to Camp and volunteers to help at Camp.
He really knows and understand what I go through now...
But he still does not get my frustrations sometimes.
I need my bpi friends to talk to and share with.
They understand, they don't try to tell me it's no big deal. The get it all the time!
The biggest gift, as far as I am concerned, was finally having another bpi person to talk too.

Support is about understanding and knowing where another person is coming from.
It's hard to understand a persons frustrations unless you have walked a mile in their shoes.
Life as a bpi is very different. I was keenly aware of the difference as I raised my own children.
I was in awe the first time I realize other people shampooed their hair with two hands.
The absolute freedom to move their limbs was something I could never experience.

The responses on this thread are really so great.
Each adult, at the workshop, brings a different life experience just as each child does.
Support is what the Injured only shop is about.

Kath robpi/adult

Amy,

I e-mailed you.

Joanie