Repressed emotions due to BPI

[Mica]

Maryanne's post got me thinking about repressed emotions due to this injury. (Thank you for posting about that, Maryanne!)

As a parent of a 2-year-old bilateral OBPI victim, I'd really appreciate advice about how to help our daughter know that she can talk openly to us about her injury - any time she wants to.

We want to raise her in a manner where she never learns to define herself by her injury, but she never feels like it's glossed over or taboo, either. We want her to feel both encouraged and respected.

Are there specific things your parents could have done to help you in this fashion?

Thank you!

mica

[Kath]

Mica
My mother always spoke, to me, about my injury. She was very open about it and I don't remember how old I was when I learned the word's Erb's Palsy. When I was in first Grade I told the teachers all about it. I knew the doctor pressed too hard and tore my nerves. I knew that it was a miracle that I could move at all and we worked hard to do that. It was a simple answer but I could talk about it all I wanted in my family.

I had friends, growing up, that I could speak to but not too many. I don't remember ever letting it hold me back or making a big issue about it. Most of my close friends have always known I was injured at birth. When I found UBPN many of my friends were very interested. We all learned a lot more about this injury because I learned more of the medical information.

I feel a parent should always be open about our injury and never limit us or define us by our arms. We have two arms a right arm and a left arm... NEVER... a bad arm or a healthy arm. Years ago people would ask which was my bad arm so that they would not hurt me.

I think parents have so much information they could overload a child it is best to keep it simple and age appropriate. My Mom was very matter of fact and did not place any emphasis on the doctor that injured me. She never displayed any anger towards him but also never mentioned his name. I had to look it up on my birth certificate when I found UBPN. She said he pressed hard I was injured, later on she explained how they tried to hide it from her and lied for the two weeks we were in the hospital but I was older then. She constantly spoke about a Prof. Cornell from NY Hospital who created my brace and helped us. She was positive about all the things I could do. She always told me "can't means you won't."

Hope this helps
Kath robpi/adult/68

[Mica]

Thank you, Kath!

[LuckyFinMomOf3]

Kath said it rather well.

The only other thing I can think to add is this. When my mom would take me to my appts (no matter what my age) she made the doctors to me not her. Her reasoning, it was my arm, my injury & my life. It helped grow to be my advocate on things.

Lisa
lobpi/32

[Carolyn J]

My 2 cents on this is:

Please please include your daughter in all meetings with Doctors and Educational systems and therapists, even before she is able to verbalize. She will just know it is okay to talk about her injuries and feelings. She'll pick up on your voice tones and you will also be able later to help her put words for things so she won't "Stuff". I think it is great that parents make Doctors talk directly to children with the questions they can answer themeslves.

I agree with Lisa, that is the way to learn to be her own advocate for times when you are not with her,i.e. school.

Hugs,
Carolyn J

[admin]

Hello again!

I'm glad I was able to open this discussion about feelings and emotion. I 100% agree with those who have advised to include your child in the discussion, with doctor's for example. I remember sitting very quiet in the office while my mom talked to the doctor. I remember she would tell my teacher's, my friends parents, etc. I never really had the chance to tell them. By the time I was older, I didn't know how to say it to my teachers, friends, collegues and employers because I was afraid they would judge me and I was also afraid I would make them sad. Their sad face alone would trigger my emotional pain. I remember my mom always had animosity toward the doctor too. It's very important to nurture your children, but be careful not to make them feel like a victim. On the positive side, my parents tried not to hold me back from activities like dance, music, sports and art. The stage was always awkward for me because people would notice my arm looks weird, music was too stressful because most instruments require the usage of both arms, I was never on a sport team, but I enjoyed playing, and art...well I can't imagine my life without. Well, I hope this helps!

[Mica]

Thank you - all of you!

[kristoffer]

growing up, me, my siblings and my parents really didnt talked about my condition and even if im 20 now, i still dont really understad my situation. my relationship with my parents is great though honestly i kinda blame my parents of what happened to me. they never explainded to me what really happended. they just told me that it was becuase of the difficulty labor. they never really explained to me the things that i undergone to help me. im sure they think that im now ok becuase i laugh a lot, have many friends. they dont know that im a bit mad of them. they never asked how i feel about my condition or my plans about it. im 20 now and this is only the time i truly understand my situation because i search it in the internet. i never had operations nor extensive visits with the doctor. i really plan to visit a doctor if i will have the money of my own. my condition really affected me a lot maybe becuase we never talked about it. im pretty sure that my parents and my siblings doesnt even know what my condition called it. and its really frustrating and sad.

[Carolyn J]

I am the poster child/Gramma at 70,for represed emotions that had made my life dificult to say mildly,. My LOBPI/Erb's was never talked about. The best thing you can do for your children is please have them in the same room when you talk about it so they hear your voice; this can tell a child who, even tho' not understanding all of what you say, that it's ok to talk about and answer every question they ask you in easy words they can understand. Please talk openly to your children at any age. This prevents them from thinking you may be ashamed of their injuries and helps them in Self Esteem,body-image acceptance too.

This is only my experience,opinion & 2 cents...

Carolyn J
adult LOBPI/70..sometimes called "bossy"

[claudia]

Talking about this injury is no different from talking about a child with epilepsy, learning difficulty, scoliosis or trouble in a particular subject matter.

The idea, I think, is to separate the "issue" from the child. Juliana is not the sum total of her arm, any more than Andrew was the sum total of being an epileptic or Nicolette is because of a kidney problem...or Izzy is because of her allergies. All of my kids have "issues" though you would never know it if you met them. And anyone who has met them can attest to that.

I emphasize working hard in school and ride them like Secretariat if I think they are slacking. I am honest about the things I DONT do well, because Nicolette once told me that I did everything well (and she wasn't saying it as a compliment). I don't compare one sibling to the next and I don't compare my child to another. I will try anything with them: any sport, any art, any music....so they can find something they like and can excel in.

I have 3 teenagers right now (yippeee!) and our lines of communication are quite open. I have asked all of them how they feel about "things". They answer because they know I don't judge them. Their opinions are valid with me. It doesn't mean I agree, nor does it mean they "win".

I ask Juliana on a regular basis how she feels about her arm. Most of the time she tells me she doesn't really care. She is smart, engaging, making new friends, playing really good tennis and is fearless at gymnastics. She tells me when her arm feels bad, weird, buzzy or just plain annoying. She says she wants to do surgery to make it work better, but she understands that Daddy is scared. She is too. I went into her class this year to talk about "differences" and her bpi because she is still shy and felt better having me explain it. I told her it is up to her next year. When the keyboarding teacher would not listen to her when she explained that her "arm just doesn't do that." And "her fingers don't move that way". She told me she didn't want to go to school. Why? well.....and out came the story about the the keyboarding teacher. I told her that she did the right thing, that she can tell me right away if someone doesn't listen, and that we are lucky that this year's teacher is great and she can call on her to help. She has learned from me to speak up about her arm, but she also carries her own laundry upstairs. She cleans her own room, makes her own bed.

Most of all, when it comes to her arm, she is part of the solution. How can "we" do it better?

She knows, as do all of my kids, that they are part of a tightknit, loving unit. And that I will go to the ends of the earth for any and all of them. BPI or no BPI, that would always hold true.

just my thoughts,
claudia