United Brachial Plexus Network, Inc.

My daughter has worked so hard since she was born with BPI in 1998. Her arm was completely paralyzed at first but slowly began to gain some motion as a toddler. we began intensive therapy. As she got older, we had surgery which gave her increased range of motionand her strength grew. She does not have homal range of motion now, but it is much better than it was. She cannot put her hand on her heart or her hip or straighten it all the way over her head. She also gets very fustrated because at 12 years old she cannot brush her own hair well enough to make it look good enough not to be teased. We opted when she was young to sighn herup for cheer class instead of paying high copays to the insurance for physical therapy. she loved it. She was ever on a championship allstar team with the gym. But now she wanted to try out for middle school cheer team. I saw no reason she shouldn't go for it except that she cannot do a back hand spring like the other girls her age. I relayed the reason why to the school in a note but needless to say she was passed over for other girls that had higher tumbling skills and cleaner motions. Isn't this a little discrimanatory in a middle school public school? Should I tell her to give up and try something else like photography or chess club or try harder and maybe she'll make it next year?

I think you should encourage her to follow her heart, if that means doing other things this year (possibly continuing them in the coming years) and if she wants to try again to cheer for the school team next year, then that's what you should do.
Take into account it is like any other sport though, and as much as we would all love to be able to do everything, certain activities have some limits. If she gets involved in other activities, come next year she may be immersed in other things that she doesn't even care about it anymore. So encourage her to do other things, but not to give up on things she enjoys.

As for the hair, I don't see why she wouldn't be able to do her hair... Ponytails are possible but more challenging... big hair clips work well or head bands. Grant it, braiding or more extravagant style can be very limited, but day to day hair maintenance shouldn't be too bad... that might be a good passerby for some relaxed summer mornings ... maybe let her practice on your hair to get some ideas on how to do things?

good luck!

I'm not sure what type of hair your daughter's hair is so I don't know if I'm helping much, but I have really long, thick, wavy/curly hair and there are a couple of things I do to keep hairbrushing from being painful and snarly. Usually I use two brushes. First I use a boar bristle/natural bristle brush (goody has one for around $6) just to pull my hair straighter and smoother so it doesn't snarl as easily. I've found this step to be a life (and hair) saver.
Then I use a flat paddle brush. The important thing is to start at the ends and work your way up to the top of the head so you pull snarls out as you go. If you start at the roots and go straight down, you'll have one big knot at the end. I also brush very slowly. I've made comparisons and if I try to pull the brush through my hair too fast, it makes the hair snarl. If I go slowly, the hair gets a chance to "unwind itself" before snarls can form.
Another thing that helps is make sure you use a good conditioner as this will help keep the hair smoother and keep it from snarling too. I also sometimes really shellac on the conditioner in the shower and use a wide tooth comb to comb my hair, again slowly and starting at the ends. The thick layer of conditoner combined with the water make it pretty easy.
As for styling I use a those little goody plastic claw clips and do a kind of bun/french twist. One of these days I'll get a video as I can usually get my hair secure and fashionably out of my face in about 5-10 seconds. Just keep in mind too that I don't think anyone thinks they have great hair at 12 years old, ;P

Ang

my parents brushed my hair until i was in college >_< .. i just couldnt get the knots out myself... they put my hair up for an entire summer before work too... my freshman year of college i learned to put my hair up using my desk as a shelf. i also believe that she should follow her heart and do what she wants to do. i did karate for 6 years, they knew my limitations, but always pushed them... it was a good thing. if she wants it, push her a bit, encourage her.

Thanks guys, I'll try the claw clips for her hair. I want to brush her hair for her and she tells me, (no, I have to figure out how to do this myself!" It is curly and gets knotted. Girls at school can be mean and say things like why don't you ever brush your hair. Some may not understand because to look at my daughter you can't tell that there is anything wrong with her arm. I guess that's why we have these posts though, to get through these tough little moments together with helpful advise. I appreciate it. I was cruising along quite well through having a child with BPI but this pre-teen thing is fraught with new challenges!

I forgot to add. Since I wear my hair curly, I only brush it before a shower too keep it from getting ratty. To style, I use a little gel and either airdry, or blowdry with a diffuser. I never brush it after I shower as this pulls out the curl and leaves me a puffball. This really works with curly hair.

For the knots, at least for my hair, i have resorted to the johnson and johnson de-tangling spray... that stuff is awesome! LOL It just takes a lot of the extra hassle away for those days when it seems like there is not a strand not stuck in a knot .

I love posts like these. They are so much fun to answer and I love reading everyone's opinions and ideas.

My take on the hairstyling question: I have always had a love-hate relationship with my hair. When I was a child my mom kept my hair short. She says this was because the wear was hot, but then I wanted to grow my hair out like the rest of the girls so one day I finally made the decision to do it. Since then I've grown and cut my hair depending on how irritated my arm would make me in the morning. I am currently growing my hair for at least the 3rd or 4th time now. The frustrations stem from not being able to do certain styles (which may seem to come easy to others). I have finally found some hair styles that I can do. By myself. Tell her to experiment with hair styles until she finds one she likes and can do herself. My mom brushed my hair till I was around 14 or 15 when the point finally arrived and I could brush my hair myself and feel good about myself. Some things just take more time than others to learn, and I think that's part of everyone's life, not just someone affected with BPI.

My take on the cheerleading: Yes, some things in life are discriminatory. If the cheerleading tryouts were or not? Who's to say...However, if they are discriminatory, then do you really want your daughter hanging out with them anyway? If she wants to do an active sport there are many other options aside from cheerleading. I took dance lessons from age 3 on up till high school. And in high school I was in color guard. I enjoyed it because it was artistic and when compared to cheerleading, which is more about image. She could always look into spinning baton. I always loved seeing those girls out on the football field.

Like your daughter, I have limitations, but then again, so does everyone else.

I want to add about the cheerleading. The truly crappy part of this injury is, it doesn't really show. That's good sometimes, but bad sometimes. I'm willing to bet a cheerleading squad would make an exception for a girl who had only one arm, for instance, and couldn't do certain things. Because everyone could tell she was excelling despite her disability. That gets more support. But with a BPI it just isn't obvious why you can't do some things, so there's no "extra credit" given even if that person is doing spectacularly well despite his/her limitations. That part just stinks.

Kate

Totally agree with you Kate!