How do you explain BPI to people?

[carron]

Well Thomas is doing great. I was afraid he would stop walking but he is walking better now after Mod Quad than before! So we went to buy groceries Yesterday and I had people asking how did he brake his arm, what did he do to his arm, poor baby, and so on. It seemed I was asked a hundred times....... at first I tried to explain his injury and would just get blank looks and then the oh then he will be fine. answer. Then I started saying the doctor who delivered him did this pulling on his head. Then I would get why did you not have a c-cection. " I would have if the doctor would have came in more than twice that day!" I just wanted to get home and stay. Will our kids always be asked what happened! How do we answer and how do we explain it to them.... Just needing to vent. Thanks Carron and Thomas

[TNT1999]

Hi, Carron. Whenever Nicole was wearing a post-op splint, we got hit with tons of ?s all the time too. I usually kept the response very brief since most people wouldn't understand anyway and usually don't really "care" if you know what I mean. When someone asks, I usually say something to the effect of -- she was injured during her birth (and if she's in a post-op splint, then I'll add and she just had surgery in TX to help to repair some of the nerves / muscles, etc.). Then if they ask more or seem sincere then I might add a little more. To be honest with you though, after this past surgery I "accidentally" found a way to eliminate most of the ?s. I decorated the straps on Nicole's Capsulodesis splint with iron-on patches and fabric paint. If TCH didn't give you an extra set of straps, then you might be able to find a local OT with the same material that they can provide to you. The fabric paint takes 24-48 hours to dry. I decorated the arm strap and the 3 straps on the front of her trunk, but she always wore a shirt over the splint when we went out so the arm strap would've been sufficient. Sometimes Nicole also wore a loose-fitting bracelet on her splinted arm too. Well, it was so amazing what happened b/c rather than all the ?s, people commented on the flowers or rainbow (painted) or bracelet, etc. and how pretty they were. Hardly anyone even asked what happened. What I perceived from this all is that the post-op splints are very large and impossible not to notice, so people feel the need to acknowledge that they see the splint, BUT I think that most people really prefer to find something "nice" to say about the splint rather than to ask what happened, etc. So, I think this helped everyone deal better with the situation. You can also find BP Info business-sized cards that you can print out from this site in the Awareness section. I had actually done that and was prepared to hand out the cards to people who inquired so that I could raise Awareness without having to go into the whole thing in front of Nicole. I did hand out a few cards, but not nearly as many as I thought I might have had to. Always keep in mind too that although Thomas probably doesn't have a lot to say yet (at least that you can understand LOL), he's listening to everything you say. So whatever response you give to people might very well be his response too. I try not to say anything about the dr. that might in any way cause Nicole to distrust doctors. At some point, I'll discuss more with her, but for now I feel that it's important that she trusts drs. and doesn't think that they're going to injure her. Well, that's just how we deal with the questions. So, basically in a long-worded answer, I'd recommend decorating the splint and carrying around a few BPI Info. cards with you. Others have decorated the splint in other ways too and I'm sure they'll post too. BTW, Nicole has asked me many times and in different ways about her arm and I just keep it simple and honest -- but it can be very heartbreaking sometimes to hear the ?s she asks. I can relate to how you feel and sometimes just wanted to stay home the whole time the splint was on, but I don't think that's a healthy way to handle it either. Oh well, I hope this helps. Sorry it's so long. -Tina

[pattyc in mi]

when HAnnah was in her splint last year ,We just said she had surgury and her arm needed to be imobilized. then poeple who really acted interested we went into more detail.
Just today I took Hannah to the dentist and the dentist ws trying to explain what the different tools were and then he said. turn your palm up and let me show you how this works.. it was the suction tube that sucks the spit etc.. well she cant fully turn her left palm up and was having a hard time and I said "she just cant do that hand, can you try the other.." and he said "Why?' ANd I said " she had nerve dmamge when she was born. I was already about to lose it with his attitude. He had told me to let him do the interacting with her since he needed her cooperation, or he couldnt work on her.. so I was asked to stop answering for her etc.. Shes only almost four and just about petrified in the chair...but he did get her teeth polished and she had no cavities.

[Tessie258]

About the dentist...I'd shop around.

About the questions I've gotten pretty weird rude depending on who asks and how...Some people ask in a way that makes you think that you must have somehow injured your child...those I don't give much time to but I usually say something like, "It's a long story. Do you really want to know or are you just making conversation?" O.K. it's a little rude but the ones who really want to know will understand that it's not a simple phrase...It's almost like I've developed radar over the years...I mean people can be so rude sometimes.....Have you ever seen a complete stranger pat a pregnant woman's belly? LOL I mean would someone go up and pat someone on the belly who wasn't pregnant? So I guess if people can be weird and rude I can too in my response.....I don't respond to all people like that but it just happens sometimes.

[francine]

I'd shop for a new dentist, too. If he didn't have patience for a one sentence thing - then how is he going to have patience to drill? (BTDT won't ever submit a kid to a something like that ever again)

I think we educated a LOT of people when Maia was in her splint. Of course if Maia were to have surgery now, it would be different. AT an older age I think I would just hand out a card if they needed something more than "she just had surgery". Right now, Thomas is really young, so if you feel up to it you can do a lot of explanation - if you're up to it. I shocked a LOT of people with the information - nobody had heard of it before. Sometimes I'd start off by saying - have you seen advertisements from lawyers on tv about kids with Erb's Palsy or birth injury? People see those ads and they have no clue what they are talking about. Actually - this is how I first heard about it myself before I knew anything about it.
-francine

[christy]

Splinting time was a an awareness raiser in our area as well. You could always tell the ones that were really interested though. Most would say "how did you break your arm sweetie?" I soon learned to say she didn't the dr. did. caught their attention, even the ones that didn't stick around for further information. The ones that stand out in my mind the most however were two local educators that I have known in the educations system for years followed us one day, whispering and giving us disgusted looks but would never get close enough or make eye contact for me to blurt it right out without just being as rude as they were and stopping them to let it rip. Burns me now just thinking about it again.

Now that she is two when someone asks her about her arm (mostly when she has one of her braces on) they usually try to touch her and she just yells NO and pulls away. I figure that is good enough for now and she can explain as she gets older. If they persist or look like they want information I do tell them--depends upon the mood. Plus they always ask who was the dr and I don't want to do that scene right now. I just had outpatient surgery and one of the groups that is in litigation was assigned to my case. I tried to delicately ask which group and could they get the other group without causing a big stink but couldn't, the nurses were all curious. So I kept my mouth shut when they reassured me that whichever group I was getting would know my name long before I got over to surgery. And they did but rather than just pass me to the next rotation the Dr. came in anyway with this huge enterage (sp?) and lots of other staff memebers around and proceeded to loudly explain to me that he had issues with me, my family and legal issues with my grandchild and he wasn't touching me. He would explain to the other group and "see if they will take you but I don't know if they will or not". What I tried to avoid he caused--a big juicy scene for other patients and staff to witness. So I just try not to name those that were involved with this. Besides, the group isn't going to be delivering babies anymore and that takes care of any future injuries on their part.

[My Alexyss]

When Alexyss was in her splint, alot of people didn't say anything. I guess I was just lucky. When they did ask, I told them that she was pulled to hard at birth which damaged some of her nerves. That pretty much explains it don't you think?
Tracey

[admin]

When people would ask these stupid questions, I would tell them the cold, hard facts. I too, get the 75% of people that were just being nosy, but, I also got the 25% that really cared and heard me out. The ones that took the awareness to the bank, so to speak. Just be honest and let them sort it out for yourself. (I too, decorated his splints, with appliques and paint and anything I had around. HE loved it and so did his therapists. Don't forget to put one on reverse side of the splint to help with suppination !!!)

[claudia]

I'm with Tina on this one. When Juliana had biceps lengthening in April, I was down there with Rachel and Amanda (caps). There was a shortage of beds and we ended up sitting in recovery forever. I had read about using velcro to attach things to the splint. We had just had one of my daughters' birthday party and made foam door hangers. I brought the foam shapes and foam glue and little scissors with me. Rachel and I (and her sister) sat in recovery with our morphined kids and made cute little things for their splints. Each day I would show Juliana the different things we made and she would choose what she wanted. People would say how cute the animals were or how pretty the flowers were and I got many fewer questions.
When I did get questions, I just kept it short and sweet. Injured at birth, surgery to improve function, no she is not "all better", we just try to improve function. Thank you for asking. Move on.
Sometimes, less is more.
hope it helps,
claudia