United Brachial Plexus Network, Inc.

Hi. I have a situation that drives me crazy. I will be with my little girl somewhere, and someone will come right up to me and say "What's wrong with her?" I am always caught off-guard and a bit dumb-founded, but try to be strong and positive b/c my little one is listening. However, I never feel like I know the 'right' thing to say. My question is... What are the best responses you guys have come up with?

There is really nothing like answering a question with a question. Say,"she's fine ,whats wrong with you"? Be sure to look concerned when you ask

I havent had this problem yet, but as Lily gets older I fear she will have problems with braty kids and dense adults as well.

that sounds like a wonderful idea. haha i like that response!! if anyone ever asks me again, i'm stealing that phrase! people can be so rude!!

As irritating as it is I use it to educate them and be really nice and polite about it.. usually embarrasses them to pieces too!

when I see someone with a difference, sometimes I find myself looking probably too long --- not because I'm "gawking" but just because I am interested and curious... sometimes I'll ask. Sometimes they treat me nicely and we become friendly and sometimes they are offended and I apologize and walk away. I always wonder about the ones who are offended - I wonder - why be so defensive? did I say something wrong? and then i do get it that they probably get a lot of that and I'm just one more person and they have no idea if I'm genuine or not. When I saw that video that was recently posted, they rarely focused on her legs and I wanted to look at them to see how the prosthetic worked, etc. Because I am interested. My brother in law is getting prosthetics for his leg that they had to remove a large portion of and I'm curious how it all works. And if I met her in real life I absolutely would be focused on her prosthetics for the same reason - I think they are so cool!! especially the plain metal ones.

When people ask about Maia, Maia says that she got injured during her birth and that her arm works differently. I've heard her tell people that she's had a lot of surgeries and had a lot of therapy. Sometimes they've asked to see how it works and she shows them. She always does this with a smile -- I guess she's not sick of it yet. I'm glad she can educate people.

When we took time at school to show the classmates what it was, how it happened and what kind of function she does and DOESN'T have (how differently it moves) -- kids in the classroom stopped gawking and it was ok and just normal.

And the last thing I want to share (which I wrote up once before but want to share it again) is that I am morbidly obese. I went to an acupuncturist office for a treatment and his 6 year old daughter was there and when she came in my room because she was there after school that day, she stared at me and screamed "YOU ARE SO FAT!!!!!" and I felt mortified but said to her in the same tone of voice "AND YOU ARE SO SKINNY!!!!! isn't it great that we are so different? Life would be really boring if we were exactly the same!" and she agreed and then asked me if I wanted to color with her and we did. and we were friends since.

It's all just a matter of perspective.....plus these moments can be great sharing and educational moments.

When people ask me about my arm, I use it as an opportunity to educate them and hopefully prevent another injury.
It's often embarrasses them because they don't expect so much information. But most of the time they ask more questions and are really interested and sometimes thank me because they will share it with friends and family.

When I was small I traveled public transportation to school. People had no problem asking "what happened to your arm little girl?" I think that was because I traveled without an adult. My mother was very smart and gave me a good answer. " I was injured when I was born. The doctor pulled to hard and tore my nerves. My arm was paralyzed but we worked hard and it's a miracle because I can move it."
I think giving the children the words and not getting upset, when people ask, helps the child to feel confident .

I was asked in a store a few years ago and just got annoyed because the clerk wanted to know why I couldn't take my change in my free hand. My older brother got more annoyed and said I should have said... "Why do you want to know?" I don't feel that answers like that serve any purpose. I guess because my Mom was so open and comfortable when people asked I've always been polite when I answer. Not to say that it does not bother me sometimes. I find it harder when people pretend they don't notice and then you see them staring.

It took a lot of practice, but now I always take the opportunity to approach the situation in a positive manner. I look at it as a way to spread awareness. I can remember when it use to offend me when people would stare, but I thought about it and practiced over and over what I would say. So, when I notice someone looking longer than they should I just simply approach them and say, "I noticed you noticing my little boy and I would like to explain to you his condition." I usually talk about how it occurred, what the condition is called, the procedures that he has had, and answer any questions that they ask. I have made friends that way and I always walk away knowing that perhaps I have spread awareness to someone who knows a mommy and daddy with a baby that has similar issues that may not even know the importance of seeking early intervention. You never know what a positive thing it can be by taking a breath and calmly explaining what you know. Hope this helps.

Ok,OK... You're all right, I agree the best aproach would be to educate them, and understand. Maybe I was a little harsh.

One thing that I've taught myself to leave out is how big my daughter was at birth, especially when she is around. My daughter just recently said to me, "if I hadn't been so big, this never would have happened." Although, certainly size does play a role, proper delivery techniques and positioning could have reduced the risk. It seems that "being big" made my daughter take on some of the responsibility for her injury -- body image issues put on the poor newborn. I've even felt a little bit of an accusatory attitude when I tell her that her weight at birth was certainly not her fault. I may have been reading way more into that -- projecting my own issues, but since that time when someone asks me, I do not say she got stuck because she was 10 pounds. I'm walking the pre-teen minefield these days!

when people ask me about my condition i tell them the truth. the reason? because before my wreck i never heard of it and since...well i too am intriged about how many ways this can happen to you. so i educate them as well as myself. they usually have the same look that i did when i first got on here and read about it. i have always been blunt and forthcoming in my life and this affliction has not changed that.i think once people hear about it that it will make them more mindful of it in their life. just for the fact that i to this day wouldn't wish this on even my worst enemy. just my opinion.
daniel "the paralyzed punk"