United Brachial Plexus Network, Inc.

Karen and whoever might be involved in coordinating something like this:

I've been thinking about something that might be beneficial to include in the camp program somehow (if time permits of course). I'm really proud of Nicole b/c she does such a good job at tying her own sneakers. Many children her age (6) who don't have injuries cannot even tie their sneakers (at least that's what the school tells me). Anyway, I just thought that it might be helpful for other children her age who are having difficulties to see Nicole do it and learn from her. Although I didn't talk to Nicole about this, I'm sure she'd be glad to help demonstrate. This is just one example. I'm sure there are many things that are difficult for so many of us and thought how people can help one another. I realize that this is something that can and likely does go on informally at camp, but was just thinking about something a little more organized. For example, I recently read a post from a girl who is 18 (?) and figured out a way to do her own hair by lying down to do it. I think that's great! I know that eventually most children w/BPIs prob. all figure out their own way to do things, but maybe it would also be helpful to learn from others in the same / similar circumstances. An added benefit is that it'd be a great confidence booster for children who have learned a life skill in a special way to be able to teach that to others.

I don't know if this makes sense or what you or any of the camp planners think of the idea. I'd be glad to discuss it further via e-mail and / or phone.

~Tina, bpmom@comcast.net, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. w/NOBPI)

Tina,

This is just a super idea!
We are going to have two roundtables held simultaneously: a mother/daughter and a father/son. We are hoping that the kids and their respective parent will share/demo just this kind of thing, including things like how to tie up a ponytail etc.

We decided to divide it into male/female in hopes that it might give an opportunity to share more freely about some more personal issues as well.

Can't wait to see Nicole tie her sneakers. Maybe I will learn something from her myself!

Nancy Birk
UBPN President
LOBPI, 51 years

Learning to tie our own shoes is a major event. At least it was in my family for me... Can't wait to see her demonstrate her new found skills.
Kath

We'll be sure to attend the roundtable. I just talked to Nicole about it and she got a big smile on her face when I asked her if she'd like to demonstrate to show others how she ties her sneakers so they can learn too. She loves being the "teacher" and is not shy at all (she didn't get that from me!). We worked for a long time at this so it was a big deal in our house too. When I was in a PPT meeting at the school, the OT made a comment that Nicole learned how to tie her shoes in one day. I was so upset at her comment b/c she very well knew we'd been working at it directly and indirectly for months -- she even used to have Nicole practice those shoe tying puzzle things in her office! I spoke right up and said that it was not one day and that it took months to accomplish that and that while she could do it, it still wasn't tight enough to stay tied (that was in Nov. and she's gotten even better at it now with all this practice). Then, the P.E. teacher had the nerve to say, well it probably just wasn't her time to do it yet. Hellooo!! He wasn't in our house all summer seeing how frustrated she was at not being able to tie her sneakers. I did not like them minimizing her injury and her hard work at accomplishing that. Aaahh, feel better now that I got that venting out. Thanks!! We're all looking forward to camp (oh yeah, haven't gotten that paperwork returned yet -- sorry!!).

~Tina :O)

P.S. I think the separate gender thing is a good idea too! I hope that people will understand why it's separated by gender so that they will respect the arrangement.

Being the 18 year old referenced in Tina's post, if it would help I would be willing to show people how I do my hair, provided thaqt I can do it again by that time. I will have to gain enough strength back in my hand and wrist after my surgery, but I think I should have enough time if I work extra hard. Being in a cast for 3-4 weeks is going to kill my hair skills. But I should be out of the cast and my brace by the last week of August I hope, so that will give me 15 days to practice and get good again. Surgery is the 19th of this month for me,

Any way I can at least bring my softball glove, I can do that no matter what shape my hand is in. Softball RULES!!!

Amy
18 ROBPI from MN

Hi, Amy! I hope you didn't mind me bragging about you. I didn't mention your name, but hoped that you'd read the post and add some input. Thanks! I'm glad to know that you're going to camp. I'm looking forward to meeting you. ~Tina

Tina,
I don't mind at all and I don't care if you use my name, if it gives some one else hope I am all for it and would be proud to have my name by it! I can't wait to meet you!
Amy

Amy,Tina and all,....I can't wait to meet you all!!
Watch out for my hugs!!
Carolyn J

Hey Amy I lay on the bed to do my hair too! I thought it was the greatest thing in the world!! Also clips are great! I will make sure to bring some to camp to show what i mean....

COurt xx

I prop my arm up on a door way to blow dry my hair and when it was very long that's how I put it in a pony tail.
I put the blow dryer in my hand and keep moving my head to dry and style my hair... never thought of laying down...
Kath