Emotional Issues of Brachial Plexus Injuries

[Its1105]

Hi,

I don't want to argue or anything, but I do want to say not to totally just not use a counselor becuase they do not have OBPI and therefore cannot relate to the child.

Counselors are trained and while not all know what they are doing, there are good ones out there. No one is ever going to understand fully what someone is going through except that person. It is important to realize that yes, those with similar issues empathize better with us, but you can still have empathy for someone even if you do not have that exact condition.

I only say this becuase I have been skeptical of counselor too. During my freshman year of college I was raped, contracted viral meningitis, tore my pateller ligament, went to the hospital about 3 times in 8 days and a total of 6 times that semester, and had a terrible roommate - all of this within my first 4 months of college...and I was over 750 miles away from home. Needless to say I got a bit depressed... or more like very depressed. I went through about 3 counselors before I found one I connected with, but the one I did connect with - she NEVER went through any of those things that I listed. She helped me tremendously though becuase she helped me find coping mechanisms,she listened, she tried to understand, she didn't judge, and she didnt act like she did know what i was going through but she did let me see that she understood that it would be difficult etc. Now, I stopped seeing her as I was not as depressed but went back to seeing her this past year due to my TBPI (she does not have a BPI either)... but she has been more help than anyone (in addition to this board of course!) due to her training and skills with counseling.

Now, counseling is not right for everyone and it does take a special counselor and someone you connect with for it to work. That might take time to find and not something everyone wants/needs to do. However, counseling can be helpful and I just want to put it out there.

I definitely do not tell my parents everything because I know that it hurts them too to hear my frustrations. Now, if you and your daughter are open though that is awesome and a great thing and not something that should stop. Just know that there is another outlet for her if you are able to find someone she can connect with.

again, I am not trying to start an arguement or debate so please do not think I am. I just wanted to give my experience with it.

[marieke]

I agree that seeing a counselor can be of great benefit. After I was paralyzed I was not interested in seeing one even though they were there if I wanted and for free. A years later I did decide to go after all and I found that it helped a lot, even though they did not have any paralysis, illness or anything that I had. As said above, some counselors suck and they aren't a good fit for you, but others might be.

I never saw one for my OBPI but when I did finally use one for the paralysis I had in 2005 I did bring up some old issues about that too. She helped me figure out ways to cope with all the changes, the anger, the disapointments...

Good luck with what you do decide to do!

Marieke 33, LOBPI

[F-Litz]

Just want to clarify that I'm not against counseling -- I, myself have been in and out of counseling since I was 17 years old and I'm 50 now. I just think that counseling for a younger child with bpi may not offer a lot of help because you need concrete ideas (that an OT can help you better with) and they won't understand it at the level that the younger child needs it. When Maia's a bit older and can understand things better - I'll be the first one to sign her up.

In my practice I was taught to search for the priority issue. And by reading this mom's post I found the priority issue was to learn how to do more things independently so that there's a reduction in differences between her and her friends. That's why I suggested an OT for a start. Not all frustration has to be emotionally or psychologically based --

-francine

[Kath]

I am not against counseling at all! I just feel that OBPI has not been studied nor the emotional issues of an obpi child. It would be hard to apply some of the training a counselor gets to an OBPI child. There are no papers on the long term effects of this injury. There are no long range studies on it and I would imagine no phytosociological papers to support counseling models.

As an adult, I did not seek any help. Quite frankly I found most doctors are ill informed on the total impact that obpi has on our bodies. I also found them totally oblivious of the problems that obpi adults face. Mostly I found them to be disinterested in my arm. One of the many issues adult/obpi seem to have is the lack of interest on the part of the medical profession in our well being. Most adults report that doctors never mention or assess their arms during a physical exam. I have been told by doctors how "lucky" I am, only to find out that the Dr's making such statements had never met and obpi before. I think OT/PTs who work with children are much more aware of the challenges obpi children face.

OBPI is something that is so hard to explain to most doctors. They somehow live in old world text books. They most often think it's only an arm and if we compensate well... that should be it. They do not recognize the pain that we have lived with and never connect the secondary issues with the initial injury. Physically obpi is more than just the baby's arm. The medical profession is far behind when it comes to understanding the total impact of this injury or it's long term effects due to sustaining it as a newborn.

That is why I would be very careful in choosing a counselor for a child. Our life experiences and challenges are very different than the average child.

Kath robpi/adult

[swimhappy]

I remember going through those exact same feelings when I was that age. It was awful. (I'm a TBPI, but my accident happened when I was 8 so I went through a lot of the same things that OBPIs go through growing up.)

For me, sports and art helped me tremendously. Rather than hang out by the jungle gym, I'd play handball or four square or other non-two handed games during recess (tag is great! my friends just weren't allowed to tag my bpi arm). Would she feel comfortable suggesting other games to her friends? That way she doesn't get left out. There were times my friends wouldn't change their game, though, so I would hang out in the library and read instead.

Outside of school I took lots of art classes because it was something I was good at and gave me a confidence boost. Art - at least painting and pastels, what I did - requires little to no compensating.

You said she doesn't have any ROM, but is her arm/shoulder loose and flexible enough to be raised up? Because when I shave my underarms, I pull my BPI arm up like I'm stretching it (like this: http://www.fitnessgenerator.com/images/ ... %20bar.gif except I stand straighter) and that gives me access to shave under there and it stays up and out of the way. Unless you're talking about shaving her non-BPI arm? In which case I just shave like I'm a monkey, the same way I put on deodorant. I refused to let my mom help me so I learned pretty quick.

Doing my hair was beyond me until i was older. I've found that straighteners are the best for my independent streak, though. Curlers/curling irons, ribbons and putting my hair into a true ponytail are all too frustrating to even attempt anymore (although I can do a little ponytail/bun thing, but it's not very pretty), but straighteners let me 'do' my hair on my own.

My self-confidence sky-rocketed once I started hanging out with others with disabilities. I actually know very few fellow BPIs, but a lot of my friends now are missing legs/arms/both, are in wheelchairs, are blind, etc. I've met them all through swimming (I'm a Paralympic swimmer) so we'd hang out at swim meets. It was great because they were going through the same feeling/emotions/experiences that I was so we could empathize with each other. We no longer felt like misfits, and we also all shared a love of swimming. I highly suggest going to events like the Endeavor Games because there's the social aspect and the kids get to try out different sports.

[Cara]

We have dealt some with the emotional issues. My kiddo is almost 9. She hasn't felt very comfortable talking about it with counslors. I try to get her to focus on the positives. She calls her BPI arm Fred. IF it were not for Fred she would not have met a lot of the PT and OT she has grown to love and admire. We also wouldn't have met Grandma Carolyn or Gayle or Kath here on the boards (She thinks you all rock) She also wouldn't have her pen pals. We wouldn't have gone to the pinics or flown to Texas and met new friends there. She might not have learned to be as outgoing, speak up for herself, or been as advanced in some areas as she is. Sometimes it works to get her feeling better, sometimes it doesn't. I try to focus on the fact that God has a plan. She has a little sister with a lot of medical needs. Since her sister has a shunt to her lungs and a pacemaker she can not be lifted under her left arm or get blood pressures or IV sticks in that arm. Rosalynn's BPI is also on the left side. She is very empathetic and she tries to compare surgery scars with her little sis.

[Carolyn J]

AWESOME Girls you have, Cara!! YOu are Right On too!

Gramma Careolyn J

[Kath]

Cara
You have truly given your daughters wings!

I always say my Mom never disabled me she enabled me and gave me Wings!
The reason I came to UBPN was to search for information. The reason I stayed and worked on the BOD for so many years was to honor my Mother, who had no support. She really would have love being with all of you here. I often wish she had lived long enough to see UBPN . But she was a strong woman and a great role model. That is what you are Cara.

Kath robpi/adult 69

[Karl w a K]

COMFORTABLE IN THEIR SKIN...do a search on this post by Christopher. I think the info will help you find answers. Its never easy dealing with an injury that alters your life. But if you see that others are dealing with it also, it helps tremendously. It helps you take the focus off of you, and onto others. Keep reading, keep searching, keep loving her to bits and she will persevere. Keep fighting the good fight...ciao...

[Carolyn J]

I BUMPED up the Article COMFORTABLE IN THEIR OWN SKIN that Karl mentioned...it IS good! & speaks LOUD to this Topic/Issue.

Hugs all around,
Carolyn J
LOBPI adult/71