What would you have said?

[dmom]

This was strange. Twice this week, I was in stores where I am SURE the clerk who was ringing me up had a BPI. I could just tell by the arm and hand positioning. I so much wanted to say something - just to make a connection, show compassion or empathy, make a friend, etc. But then I just couldn't do it. I didn't want these people to feel funny that I asked. Plus, I didn't want to be wrong and feel embarrassed!

Has anyone else with an OBPI child ever been in this position before? What did you do? And I'm wondering if those of you who are adults would feel offended if a stranger came up and asked you about your arm. Would you think that was just incredibly rude, or would you appreciate the opportunity to talk about it?

Janet

[Mandie]

I was in a Doctors office, for myself, and had Sarah with me. She was barely 2 at the time. A lady sitting there kept staring at her. So I told her hi and started a conversation and come to find out her neice has a bpi as well. She said that she couldnt help to notice how she was moving her arm and that it was the first time she saw anyone but her neice with it. She was a very nice lady. The staring was kinda creepy though. So maybe instead of staring, which she has probably noticed, you might wanna just say something like, Hi, my name is ---, and my child has an injured arm too. Do you mind if i ask what happened? Never know what she might say. Doesn't hurt to try though.

Just my 2 cents

Mandie

[admin]

Janet,
Personally I'd say leave him/her alone. I'd rather not be asked because I think it's a very personal question. I guess it's better to ask than to talk behind his or her back, and assume something, but not everyone wants to talk about it.
I think it would be different if you had the injury and were in that situation, you could show that your arm is injured too, but if a parent said something I'd feel very uncomfortable. Would you want someone to point out your problems or injuries in a public place?
I'm not ashamed, but I'm a private person, and I'd feel disrespected. It's one thing to volunteer that kind of informtation, it's another when someone calls you out on it. I think you did the right thing by not saying anything.
Carrie (23, ROBPI, Virginia)

[brandonsmom]

My neice who is 22 worked at the Naval Base last summer as a recreation supervisor. She invited us to family fun days....so we went. They had vendors from all over there. There was this car salesman that kept looking at my 6 1/2 year old ROBPI(at that time he was 5 1/2) it made me feel creepy so I went over to check this guy out. As I got closer I noticed dthat this guy had a BPI justs like my son, so I went and got my son and took him over to him. The man started to cry. I said " I think that you and my son have the same injury.....may I ask how you were injured?" He had a traumatic injury from a car accident 20 years ago. He had no surgeries, they told him there was nothing they could do. He was staring at my son so the he could learn how he did things. Although he had much less movement than my son, my son taught him how to tie his shoes. He had never tied his shoes in all these years. He was so happy. We also got him information on BPI, this board and my personal favorite doctor, Dr. Nath. I haven't spoke to him in a while but I know he had wanted to go see Dr. Nath the last time I spoke with him. It was awkward at best, but considering he was starring down my son, I thought I had to protect him. It was cute though because my son noticed that the mans arm didn't work right, but never associated the two. (My son thinks that his arm is normal and ours are screwed up.) ha, ha
I would ask because I have asked more than one person and usually I am right. All they can say is that they do not want to talk about it.Gayle Mom of brandon ROBPI

[hope16_05]

Janet,
I am 18 with a ROBPI and it does not bother me when people ask I just treat it as an educational session, And if I found some one else that had something in common with me near my hometown I would absolutely love it. Every thing is always easier when you can share it with some one else, ya know? Softball prctice started this past Monday and a 6th grader came up and was watching my partner and I throw and catch the ball. She noticed that I was doing both with my left hand and asked me why I didnt just get a glove to put on my right hand. She did not notice there was anything wrong with my arm, so I took that as a chance to educate her a little bit.
Those are just my thoughts,
Amy

[Christina]

I don't have BPI, so I don't know how one might respond if asked, but I work at a fast food restaraunt and one of our regulars has an arm injury. I finally asked her about it. I tried to be very polite. She kind of looked at me odd, then laughed. Turns out she doesn't have a BPI, but we do have a connection now and she smiles and waves every time she comes in.

[CW1992]

It used to bother me when someone would ask me about my child's arm and it used to bother her too. I guess I just did not feel very comfortable about talking about it - and if they noticed it meant that maybe I wasn't doing enough therapy! Over the years my perspective has changed and so has hers. A few years back someone asked me if she had broken her arm - I was offended - like I wouldn't put a cast on it and have it healed????
Two years ago Britt went to a week long camp with the YMCA. Her cabin friends all circled around one day and asked her about her arm - said all of the cabins were curious (which made her feel paranoid that they all were watching her) but she told them all and then they quit watching her! It was hard for her but she said that after she explained they all said, "Cool" and that was the end of it. She said that she was glad that at least they asked instead of just wondering and whispering. She doesn't have a problem about having an injury - but wants others just to understand. Now in Middle school she has no problem talking about her arm. It is no big deal to any of the kids - because they know. I think we all just go through phases - and sometimes if the wording is wrong it will tick you off - but if people are sincere and truly want to know - that is great because they care.
I think Mandie has a great way to approach someone - with very caring wording. I also loved Gayle's story - Brandon must be such a great kid.

(I still haven't had the courage though to talk to the guy at our hardware store - but maybe I'll use Mandie's wording and go say HI to him!:)
Christy

[dmom]

Thanks so much for answering, everyone! The stories and advice were great.

I think this sort of thing really does depend on the wording you use, the situation at the time, whether or not anyone else is in earshot, etc. I really appreciated the advice that it's one thing if YOU are injured and start a conversation, but to be the parent and start the conversation is another matter. Very wise counsel! I definitely wouldn't want to make anyone feel self-conscious by my well-meaning "do-gooder" tendencies! I think I will just be quiet.

Thanks again,
Janet