United Brachial Plexus Network, Inc.

WOW Kath nicely put. You know I was kind of hoping you would jump in BTW Elisa, Aaron is 7 mos old. So yeah he is starting early. But, he's MY boy! Gotta love em'
---Paula

Oh yeah, thanks guys I feel so much better knowing I'm not the only one with a child like Aaron!
---Paula

Well, Nicole (3 y.o.) is our only child so far, so I don't have any other siblings to "compare" her to, but she often gets very frustrated. I can see that almost always the cause of her frustration is due to having difficulty doing something that requires the use of both arms / hands, etc. Ultimately, it is tied into the BPI. I even recently saw her hit her L (BP) arm with the other hand and I've never seen her hit anyone before so it's not like that's a typical behavior for her. I've also seen her forcefully put it on the table when it won't "stay down" on its own. I definitely attribute this behavior to Nicole's BPI and extra challenges that she faces all the time.

It's interesting that others also posted about control issues. A couple of the others' descriptions really fit Nicole well -- for the most part, she's a happy child, but she does NOT handle it well when things do not go her way. I had never related that back to her not being in control about so much of her life. However, it really makes a lot of sense to me.

Kath, you put it all so well in your post. I know you've written about these issues in the past and it really helped me to try to see life through Nicole's eyes (or arms). I'm glad that you posted it again though b/c there are a lot of new people here and I think it's really beneficial info. Thanks so much for your contribution to this board!

Thank you all too for helping to remind me about these very issues that others are facing too. It does help to know we're not alone. I pray for patience everyday so I can deal with and try to help Nicole deal with these problems. I've also encouraged her to include patience as one of the things that she asks for in her prayers.

-Tina

Thanks, Kathleen for letting us realize just how frustrating it is. Like Tina said, Michaela also is a very happy child most of the time, but there are the times when I have to make her do things she doesn't want to that we fight and most of these things are BPI related so that's why some of the control issues come up. There is alot of conflict between us because she is so strongwilled.It's like when you go shopping and you get a grocery cart that's fine and everything goes smoothly and your out in half an hour (compliant child)and then the next time you go the cart has a bum wheel and goes in it's own direction and it takes you an hour to get your shopping done for fighting with the cart, It wants to go where it wants to go(defiant child). I don't begrudge her that will because I know she' needs it to get through the frustration and that's the only thing that will get her through her life with BPI.Just harder on the parents to work with and deal with effectively,picking your battles I guess. I know from Kathleen's post that she'll thank me for it someday, and I'm just being a good MOM, but right now it creates alot of stress.If I'm still here when she's 40 and has her own kids I hope to hear a thank you and that keeps me going, and if I never get it, I'll know I've done the best for her. Maybe I'm sharing too much! LeeAnne

Thomas is is going on 11 months and he has always cried from day one. I know he is frustrated because you can see him wanting to do things and he will just lay his head down and cry "I should say Scream"
He does ok in therapy till they start moving things away from him to make him do things over and over he hates it. But I know it is to help him in the long run. But their are days we take a break from it all and just play!!!!!!!!! I guess it just makes them a little stonger and more will power I see him doing things they said he would not do.

That is so true... I guess we are like the shopping cart with the bumpy wheel... LOL... not easy kids once you get that stubborn streak to work...there is no off button... I think I am still stubborn... once I make up my mind I want to do something... I just push and push till I can do it... I can't help it...
I loved that bumpy wheel.... LOL... so true...

Also just a reminder... there is pain ...
Most doctors say that there is no pain for a bpi baby... but yet when an adult has a bpi... they put them on tons of drugs to help... and most don't work...

I wonder why the pain issue is not addressed immediately... Ever since I watched 20/20 ... that thought has haunted me... no wonder they said I cried all the time... my brother told me no one slept after I was born.... I just cried all the time... wonder if anyone has the answer to that one..???

Kath

In our case, our BPI baby is the sweetest natured! Parker has always seemed like "pure sunshine" to us...and he continues to be. He always has a great attitude and sees the humor in everything. Our 3rd (last) child, on the other hand has enough temper to make up for the other 2!!!

Sharon here, 54 yrs left obpi.

Kath said it sooooo well, except I never refer to myself as stubborn others do. I call it determination and when that fails, I still would like to scream, cry and throw something. Butttttt being an adult and knowing I have to clean up the mess and if I scream or cry, my headaches gets worse. So there are things that will buffer all that determination as your children get older but don't look for it too soon in their life or you will not survive but your child will do well. lol Thanks for letting me lurk and post on your board.
Blessings and patience to all of you.
Sharon

My baby is almost a year old and he has a temper too.

Morgan is a only child I find that her BPI makes her more determined & yes fustrastion usally comes along with that.She strives for perfection in all she does and although a parent is pround it also is disheartening knowing with BPI your child does have limitations. She can do most tasks but only in the manner she has learned to do them. It amazes me how with weakness these children develope so much inner strength.