United Brachial Plexus Network, Inc.

Hello Everyone: Awhile back I used to post frequently when my daughter was enduring surgery after surgery and just kinda fell on the wayside while in nursing school. She is 10 yrs old now and literally her little heart is breaking. There have been alot of comments recently for example: "Why did god have to do this to me?" Meaning her arm. She had one of the worst bracial plexus injuries from birth an infant can get. Three surgeries later she still does not have ROM, she cannot use her hand she barely has a pincher grasp and its quite noticeably smaller than the other arm. These comments from her are new and killing me inside. She told me last night that she watches her friends do alot of things on the playground, they play while she sits and watches because you need two hands to hold on to things. As she told me these things, I could not help but cry. She cried and I cried and I feel like I don't know where to go from here. This has just began to surface and I feel like its going to get worse. She has just began to get a little hair under her arms and she calls me in the bathroom to shave the left underarm for her because she can't. I do her hair every morning because she cannot put it in a ponytail. Obviously I don't mind doing these things but it bothers her. We all get advice on therapy, surgery or no surgery, E-Stim or not but what does a mother do when her child is hurting inside?? Please help. Also any suggestions on hand strengthening would be great.

My son is 20 now. I have to say puberty was very hard for him...he started saying things like "I wish I had never been born."
We took him to counseling and it did get better but for us the best thing we did was to home school him. It took him out of the bad bully environment. He was able to learn in an environment that no one was staring at him. Also meeting other people especially adults who have disabilities helps too. Not just arm problems but all problems because then she will see there are a lot of people who also deal with a lot of problems.
My son met a guy at church who was in his 40 who had had a stroke in utero and had a paralyzed side and they built a friendship and it did seem to help. He also got interested in gunsmithing and the gunsmith was missing a leg....so there was no easy way, but to just keep going...talking about it is good. Good luck to you.
Teresa

It is great that your daughter is talking to you about these things!

I would suggest therapy though. Counseling is so helpful sometimes. Just being able to get away and vent about your feelings to someone helps so much. I have a TBPI not OBPI but I went to counseling to deal with my feelings (still am in counseling) ... I talk about my anger at what happened, the frustrations of not being able to do thing, pain, and sometimes just anything even if it doesn't deal with the BPI. I talk to my family as well, but I don't want to burden them or make them cry/feel bad etc... so it helps for me personally to have a counselor to just go vent to.

It may or may not be right for her, but I would look into it and try it for a month or so and see how it goes. Definitely don't give up on the first time going to it though as it usualyl take a bit to warm up to the person and begin building that relationship.

I would highly suggest a bunch of OT for one-armed living training. For the last two surgeries that Maia had, I had the OT continue to come so that she could learn how to live one-armed. I knew that we had no guarantee that her arm/hand were going to continue to work on any given day so this was really important. And I'm so glad I did this because when she's not oxygenated enough, her arm stops working completely. The first time she learned how to open up a yogurt container one-armed her eyes popped out of her head. Until then EVERYTHING had to be bilateral (both arms) and giving her permission to use just one arm took such a weight off of her. She was SO happy - it was HUGE.

Long hair is an issue for Maia -- her hair is wavy/frizzy so it's very difficult for her to take care of her hair. So for now, while she's at home with me, she has the long hair and I do it for her. I figured she can get it out of her system now -- so that when she moves out she'll (hopefully) be ok with cutting it shorter or getting it straightened so that she can more easily comb through it.

As she gets older - we have to relearn things and figure out new things.

As Maia became more successful with her one arm, she felt less different and she was able to take on more things to do that the other kids were doing. She did great on the baseball team and even though she hasn't played in about 3 years, she was in a game just a couple of weeks ago and did better than some of the boys - so she didn't forget how she one-armed the catch/throw routine.

We also spend a lot of time discussing how every single person on earth is different. I had her do a writing survey and she found that every single person wrote differently. hmmmm I had her do a teasing survey and she found that every single person she surveyed was teased throughout their childhood for all sorts of things.

It's a daily conversation.

I shy away from the counseling thing because none of the counselors understand all the parts to this (or all the parts to Maia and because I have previous experience with multiple counselors with my eldest daughter and they did NOTHING to help after 20 years, so I am not very trusting of them anymore) -- I like being proactive about problem solving though so that Maia can hopefully bring this approach into her adult life and thank God we are able to talk deep with each other so I'm grateful for that.

I find all of your responses EXTREMELY helpful. I tell you there is NOTHING in this world worse than watching your child fall apart and there is nothing you can do. I told her there will be bad days, we all have bad days. Her higher power has a plan for her and you can't always visibly "see" someones challenges in life. She has had a ton of OT in fact they just discharged her from the school program because she compensates quite well. I think now I need to start back up with PT because of the elbow contracture and her hand is just not getting any stronger. I did notice a message board for 13 and up children. What about 10 and 11 yr olds? I think chatting with other children dealing with these issues would be very beneficial. Any suggestions?

Maybe a pen pal or email pal for her wih other kids on here...

Marieke 33, LOBPI

Yes, emotional issues related to low self esxteem & body acceptance etc is very common for us BPI-ers. There is a lengthy and helpful topic thread on the "Adults With OBPI's " Message Forum. EVERYONE is welcome there. Just type "Emotional Issues"(without the quotes) in the SEARCH FORUM LINK at the top of any page and post on that topic should pop up from the last 2 yrs. in particular.

Please try to come to Camp 2010...watch for details on the UBPN FORUM coming soon also probably will be on the Home Page too. It IS LIFECHANGING for EVERYONE who comes especially parents and all individuals with our Injuries.
...[i am not yelling, "Bold" doesn't work for me...]

Carolyn J
LOBPI adult/71 & proud of it.


Message was edited by: Carolyn J

There are many emotional issues with this injury. Often children share only bits and pieces of their issues. They are so perceptive, they can detect the hurt their parents feel and sometimes hide their problems.

Meeting other children empowers them. When we meet other obpi we don't feel alone and isolated. I turned 60 when I met my first obpi friend. That was ten years ago and the healing and comfort I received by sharing with MY peers has been amazing.

If possible, try to find people near you with bpi children and try to meet with them. It truly helps the children.

At the injured only workshop over the years I notice that the isolation was a big problem for the children. Parents often think that "their child is so well adjusted, nothing bothers them." I thought I was perfectly adjusted and had no problems. Once I met others who truly understood the issues I faced on a daily basis, I realized I just knew how to hide my issues.

Camp, Support groups and an informal get together with other bpi children would be great for the kids.

I wish I could say that I never shared the same feeling your daughter has... but I can't. I often felt left out because I could not do some things in school. As an adult I've never felt left out or was ever left out of something because of my arm. Life deals some hard lessons to obpi children or any disabled child. I believe we develop other skills that help us to become more creative and accomplished because we are injured.

Kath robpi/adult 69

I agree with Francine. Unless the counselor has experience with bpi there is no way that they can truly related to the obpi child.

An OBPI child is challenged beyond their level of maturity on a daily basis.
Frustration is the constant companion of an obpi. I believe it's the same for tbpi but as children it's much harder to cope with. I find sometimes as an adult I still get frustrated when I can't accomplish something I want to do.

Kath robpi/adult

AS USUAL Kath says it wayyyyy better than I can.
Everything she shared I can say "ditto" it is the same with me. PLEASE listen to your children even when it's trival sounding.

Oh yes, meeting others with an OBPI was LIFECHANGING and HEALING for me like I had never before felt I was OK...and that was at Camp 2005 at age 67. It's never too late to heal.

Thank you, Kath for saying it for me too.

Carolyn J
LOBPI/71