United Brachial Plexus Network, Inc.

I am new to this site and only found it b/c I reached out to the Illinois coordinator for support groups for my 8 year old daughter who has a TBPI. Background is that my daughter was diagnosed with Neuroblastoma (childhood cancer) at age 1 and was near death. She underwent Chemotherapy and at the end had surgery to remove the tumor which attached to her subclavian artery and her nerves in her left shoulder. During the surgery the tumor was removed and both the nerves and artery where damaged...we were blessed with her life but were faced with a new injury TBPI!!!! She has had surgery in Texas with Dr. Nath and now has blood flowing again through her arm. Her arm is a few inches shorter than the right, her hand is smaller and no finger extension in the middle, ring, and pinky fingers.
The thing now is my daughter is now having breakdowns b/c she cannot do what other kids do!! She looks different! She is not normal! (she does say she knows she God made her special but...) We have contacted her therapist to start e-stem and advice on at home activities. I encourage her to do whatever she wants...she loves theater and singing...I put her in it! She wanted a basketball...I bought it!! I just found out that jumproping at school is a problem so now this weekend I will go out and help her learn. I thought maybe her talking to a teenager with TBPI regularly so she can ask questions about how they handle things might be helpful b/c teenagers are cool to her!
My question to all of you is WHAT CAN I DO TO HELP HER FEEL AS NORMAL AS POSSIBLE???? Any advice is great!!!!

Sounds like you are doing great to make her feel normal. Treat her as if she does not have an injury. Acknowledge that shw may have pain but do not try to prevent any further injury...She needs to be a kid. Sounds like you are doing great at that though! Your daughter can email me any time she wants to...My injury is a bit different though, I received mine at birth. I am 22 years old and live in MN. My email is hope16_05@yahoo.com if your daughter wants to ask me anything she sure can!

Amy 22 years old ROBPI from MN

One of the best things that ever happened to me was getting involved with the Paralympics. I was incredibly self-conscious about my arm until I started hanging out with people with all kinds of disability. With them, however, I'm normal. There's no staring or sympathy or awkward questions, just camaraderie. It helped me reach a level of self-confidence I didn't know I was capable of. Your daughter doesn't have to get involved with the Paralympics necessarily, but I do think getting around others with disabilities is very important. Camps are great for this.

Also, I believe that sports in general are great self-esteem boosters. With BPIs, it's just a matter of figuring out what can and can't done, as far as safety and comfort goes, and settling into it. For me, it was swimming, but if she's enjoying basketball, that's fantastic!

Feel free to email me a.everlove@mac.com. Your daughter is welcome to email me, too.

You may want to see if there are any OBPI kids/teens too, considering she got her injury so young. She may find that they are pretty much alike in many way.

Just a thought

Marieke 33, LOBPI

What does she really want to do?

Aside from my tbpi I have a disabled child. My oldest has a genetic diseaase that has made life a real "challenge" with a teenage boy who wants to be a professional football player! Physically he looks perfectly fine but the world can not see is the disease in his brain that is such if he bangs his head it could kill him instantly.

Needless to say eight specialist plus myself have had to work really hard to find a sport he culd do and succeed at. In the end it became turning my son onto running. He runs a mile in six minutes twenty seconds and is planning to compete in his first 5k in May.

I know your daughterr is younger but if you figure out something she loves and really wants to do it can be achieved.

minnie

Great advice, Minnie. I too, have a son born with multiple
"fixable medical conditions" which were all done before aage 18 but left him on the "border of invisible MR and Learning Disablilies. I fought and fought to have him
Included" in regular activities until something he was interested in doing caught him. It took along time into his 20's but it did and now he is a productive full time WA State employee who truly supports me in every way because when I worked it was always for non-profit agencies (no reirement benefits).

Your son will give you public "props" for all you have done for him, Minnie, I can promise you.

Thanks for sharing. We all need to be encouraged as mothers no matter what the disability our children have.

Carolyn J
LOBPI/70 & proud of it


Message was edited by: Carolyn J

The one thing I forgot to mention was the school choice I chose. My son is in a school system that is inclusion based. The key difference is how disabled individuals are viewed.

In main stream standard school kids who need help go out of the classroom and to a special room. The child then feels isolated and disconnected in my opinion this horrible for the kid emotionally. Their peers are usually awful to them as well in my opinion.

Inclusion means no matter the disability the child is with their classmates all day long! Literally everyone is equal! My youngest has brought me for show and tell because apparently it is cool to tie your shoes one handed. The children in this enviroment accept disabilities as just normal for the most part. The schools work really hard especially in the elementary years to educate the children to disabilities. Their classmates benefit too. My school system will only allow 24 children per class maximum. Thus if a child has an iep or 504 and needs extra help a helper comes! Some of the classes will have one helper and some more. Literally the helpers are are special education trained teachers and if their student is okay they will help other children. An example of how this works is for example myy yougest son (not the disabled one) is in his fourth grade math class has his teacher plus two helpers so the ratio of teacher to student is 1 to 8. My oldest is in high school and when you observe the kids its more like an old fashioned one room school house in that kids are helping each other no matter who they are. There is still the normal prblems but it is minimal in comparison to other schools.

Inclusion shows up on state tests too. My school system which is public actually beats out private schools on state tests. The best though is on some subjects on the state tests the disabled kids rank equal and sometimes higher than AB (able bodied) kids!

My entire county has this and I pay a fortune in rent to live here but it is so worth it! I have even wrote President Obama a letter and asked him if he could make this an option every where.

minnie