United Brachial Plexus Network, Inc.

Parent needing help,
Does your daughter have resting hand splints for at night? Sounds like that might be a good option. I would ask the OT what they think. Also the balls might not be a bad idea either. Something to look into.
Amy

Mica,
FYI, all my life,up until I "lucked into" the Ball "thing", my lt. BPI hand was always blue in cold weather.I never thought to ask someone for a hand massage!...LOL.I never asked for help at all, still trying to pretend it wasn't there & trying to "fit in"[read, invisible]. I just filled the bathroom sink with the hottest water I could stand and soaked my hand until blue went away and warmed.

HUGS ALL AROUND,
Carolyn J
LOBPI/69

She has a Benik (sp?) but really hates to use it as it makes her hand sweat. She mostly complains of stiffness in the AM and I often catch her moving her thumb around, stretching her fingers out as far as she can (not very much however). What kind of ball are you using that can be heated?

Also, in reference to the "fitting" in. that is a large role for those of us w/o injuries. How hard is that on you guys during those developmental years? It has been suggested we seek counseling to keep a check on her self esteem.


thanks

I worry about the "need" to fit in, also. Our goal is to provide Aria with a home environment where her arms are neither a taboo subject, nor the focus of our lives. We're hoping to teach her the attitude of, "I can't do it THAT way, but so what?! I can still do it!", rather than simply "I can't do it."

It's going to be so hard to know how to fully respect her right to get angry, frustrated or sad about her injury, but to teach her simultaneously not to let it overtake her life. Prayer will play a huge part in that, as will learning from the injured adults on this board.

Sorry - didn't mean to make that so long. I just wanted to echo your concern about the social and emotional aspects of this injury.

mica

Self esteem can be a problem and while I never really admitted it bothered me to my family... it did!

OBPI kids can often be great actors and pretend nothing is bothering them...
I think that counseling could help them deal with some of the problems and frustrations they face on a day to day basis.
It would help the family if they also had some counseling because siblings have issues due to the medical demands of caring for an obpi child.


This is just my humble opinion.
Hindsight is always 20/20 and most people think I was always well adjusted and well balanced.
That is because I never talked about my arm or complained about things I could not do.
I just kept it all in and smiled a lot to get by.
I think if I had met with other children and teens that faced the same issues it would have a huge help.
I know once I found UBPN and met others with obpi I became much more comfortable talking about my arm and the issues I face.
I also became a passionate advocate for education and awareness.
Sometimes I feel like I am a preacher on a soap box.
I never miss an opportunity to make people aware of this injury.
My kids tease me about it... but they understand and know how silent I was for too many years.

Kath adult/robpi

Mica
I think you have a good plan and it is a hard thing to balance.
OBPI children are frustrated minute to minute and it is so hard for them not to vent.
They do not have the maturity to understand their brain it telling them to do something and their arm/hand won't respond.

My Mother's first line of defense was praying for me.
She gave me a great gift when she taught me to pray when I was stressed.

She also always told me "can't means you won't."
"I can't" was not allowed in my vocabulary.

We have to learn to perform even the most simple tasks in a different way and often no one can teach us.
Simple movements that others take for granted become a challenge for obpi children until they master it.

I think that most of the obpi/adults/children are creative, persistent, determined and a bit strong minded... LOL.

My arm was not the focus of our family and I was treated like a normal child.

Kath robpi/adult

I was treated like I didn't have an injury, apart from my mom freaking out and trying to put restriction on what I did, lol.. that never worked! I was allowed to try just about everything, even though mom would freak, she still figured it was up to me to discover what I could and could not do or how to do it "my" way.

I never really complained to my parents when other kids or adults (gym teacher) would make comments. I just kept that in. If friends heard another kid be mean they would stick up for me. I wasn't one to verbalize my feelings, I would just cry or be grumpy. It took my parents a long time to realize that things were bad when I was 11-13 yrs old. I got counseling then, but really should ahve done it earlier, but again, you can't always guess what a kid is thinking! It's important to try to get them to talk (once they are old enough to do so).

We are a tough bunch, figure things out for ourselves and just deal.

I turned out ok in the end! I am strong person now, and when I am upset I tell people now. I find that hard still, but that is just my personality. Not much stops me and I was (and still am) always one to jump in and participate in life.. school life (band, prefect board in high school), with friends and activities (ballet and figure skating for 15 yrs), and life. Going back to school for my 3rd degree and FIANLLY realizing what I want to do with my life (nursing). It was not an easy decsion for many reasons (you know some of them) and if it was not for how I was raised and treated I do not think I would have had the courage to do this!

Ok, enough of a ramble,, not sure if I got off topic!

hugs to you and your beautiful daughter!
Marieke (31, LOBPI)

> I was treated like I didn't have an injury, apart
> from my mom freaking out and trying to put
> restriction on what I did, lol.. that never worked! I
> was allowed to try just about everything, even though
> mom would freak, she still figured it was up to me to
> discover what I could and could not do or how to do
> it "my" way.


Marieke,

This just cracked me up! I thought to myself "yeah this has nothing to do with you having a OBPI this is just part of being a mother". LOL LOL We mothers tend to "freak" out cause, well... we can!

Thanks for the smile!

Joy

hehe, yeah, true. She also was this way because I was born 3 months early and barely alive and then found out she could not have carry a baby for longer than 6 months so having another child meant possibly losing it or going through it all again, so I was "IT".
Marieke
keep smiling!

Does the benik splint only bother her in the summer? A thermalplastic splint myight be better heat wise in the summer plus they are hand made so they fit perfectly.

As for fitting in, I never did in school. But I didnt really want to do what the other kids were doing especially as we got closer to graduation when they all thought smoking and drinking was the cool thing to do. So I was the observer, loved to stand back and watch.

College however has changed me! I am trying to get out there and speak my opinion. I dont have to fit it, people can just like me for who I am. I tend to tell all about my injury, people have the right to know that this could happen to them too.

Amy 20 years old ROBPI from MN