How do you deal with rude or unwanted attention because of the helmet?

[heatherific]

My daughter, Ember, has been in her helmet for about a month now & has at least 2 months to go. I'm so sick of the unwanted attention every time we go somewhere. Has anyone else had problems with this? How do you deal with it? Today a man at the store walked right up to us, pointed at ember and said "that baby has a helmet on it's head." and he was talking to me! What am I supposed to say to that? Does he think I don't know she's wearing a helmet? And a few days ago the woman working at the grocery store made a huge spectacle of her. She kept saying things like "look at that helmet! i've never seen anything like that. look at it!" then she turned around to the employee behind her, "look at this!" She even got on the pager to page another employee "get up here, you gotta see this!" She never once even acknowledged the baby, she just kept pointing out the helmet to everyone. I was mortified. I guess it doesn't help that I'm painfully shy. I'm so irritated right now. I guess I just wanted to vent to people that can understand. If anyone has any advice or encouragement, I could sure use it. Thanks!

[dannlark]

I don't have any helmet experience but I feel your pain. People can be as dumb as posts sometimes, can't they? Did your daughter have surgery for cranio prior to the helmet use? If so, you could always just say she's just had a MAJOR surgery to reconstruct her skull to the proper shape and the helmet is doing the rest of the job. That usually stops people in their tracks... Either that or point out something very obvious about their appearance that they might be self concious about... "Hey, did you know that you have a REALLY big nose? I've never seen anything like it in all my life!!" That should do it.... It takes guts, but I think Idiots should be made to feel like Idiots when they act that way...

I hope you don't have much more time dealing with the helmet. Remember, it's not forever (that is a good mantra for you when times get tough). And remember, that woman will forever have a big nose, or crooked teeth, or just be darn right STUPID for the rest of her life, while your daughter will have the most beautifully shaped skull known to man... ((HUGS))

[Jenny]

Oh i've been there! That was just downright cruel of that woman. She should grow some respect! Some people are just ignorant and dont give a sh*t if their curiosity offends anyone. In the case of that woman, im sure i would have had something sharp to say. Most people I ran across though were just curious. I would explain to them that she had surgery and has to wear the helmet while her head heals, and go into more depth if they so needed. I would rather inform people than t put them off, and at the same time were spreading awareness. Every now and then you'll find a jack*ss. Just take it with a grain of salt. Were the privelaged ones, they are our special gifts to us. Everyone else just doesnt understand, and in the end, they dont matter.

[LovingLeina]

Hey, :hugg. I'm sorry that you've encountered such rude people. Leina has been in her helmet for 7 months now (only 2 weeks left!!!) and we've definitely had our share of attention. Mainly curious but there's always a few that are shocked or surprised and make it known.

Do you have Ember's (love the name!) helmet decorated? I have to say that we got MANY more blunt stares and comments before we decorated Leina's helmet and put her name on it. That really seemed to soften the reception.

Sorry it's been a hard thing for you guys, there's enough that's hard about our situations without throwing in rude people! Hope things get better for you and Ember.

[Monica]

Just ignore them. Most of them probably aren't meaning to cause any harm - just ignorant, or probably innocent, of what it is and what it is doing. Just manufacture a simple short statement of what it is and how blessed you feel there is a "cure" for her. She's your special girl - let them all know that!!!

[heatherific]

:thankyou

Thanks everyone. I know most people don't mean any harm, I just wish they would ask questions instead of just making stupid comments. I'm going to try your suggestions though. I'm sure it will be less awkward if I go ahead & offer the information even when they don't ask. Ember's helmet came with a pink butterfly pattern on it, but now I'm thinking about adding her name. I'm not very artistic though, have any of you tried stencils or stickers? I don't know what to use. I saw a thread about this, maybe my question is already answered. I'll go check. :)

[dannlark]

You've got such a beautiful family. Ember is just precious (the surgeons did a great job!) and I love the helmet design, cool butterflies! I know that people uses stickers to put the names on and then use clear nail polish over them to keep them fresh for a while. They do need to be replaced over time though. I'm sure someone with helmet experience will chime in...

I think most people, when they aren't just being darn right rude, are curious at heart... And I always look for an opportunity to talk Craniosynostosis to whomever will listen. I think putting her name on her helmet will make her more present to people and take a bit of the focus off of the helmet itself. Good luck and keep us posted!!

[LovingLeina]

Yep, stickers work great. There are different kinds...I found the ones for Vellum (they'll say that on the sticker package) worked better than the paper backed stickers. I didn't know about the nail polish trick, wish I had. Oh well. I just replaced stickers every few weeks to a month.

I got her stickers at Michael's or Hobby Lobby...art and crafts stores.

I LOVE the design on Ember's helmet. They had some designs when we got Leina's but none were that cute.

I found having her name on the helmet helped a lot... unfortunately, no one could pronounce it. Oh well. (it's Lay-nuh and we always got Leena). But they were still nicer and more friendly about the whole thing.

*Now that I'm thinking of it, I'm not sure I ever found vellum ones (alphabet) for the name. I think I just used the regular ones for that. ??? I always put lots of stickers on to decorate the helmet and those were vellum.

[Janet]

My daughter never had a helmet, but we had a ton of looks after her surgery, when she was still swollen and her scar was very visable.......people automatically think brain tumor or something like that.....people are curious, especially when it comes to babies. I wish I could give you some advice!! Stay strong.

[charliesmummy]

How rude can some people be!! I dont have any advice but the sticker idea sounds a good one.

[Holly]

Some people are diffently rude. If I caught people starring I would keep starring at them untill they noticed.Ha! With my younger son Jakob I put his name on his helmet with stickers and I think that made people more comfortable asking us about it. Once I put "craniosynostosis:google it" on the back of his helmet. Your little girl looks really cute in her helmet. All your daughters are adorable.

[dannlark]

Holly, that's an awesome idea about the google it!!!!

[jumpingjacksmom]

Stickers: paper backed ones don't work well at all... go for the plasticy ones!

Comments: BEEN THERE!! As time goes on it does get better, but i admit that I followed two old bitties in the grocery store just yesterday because I head them talking about Jack's helmet. I think what bugs me the most is when people talk "about" Jack's helmet as if they know what its all about...

I'd rather they say something to me and most of the time people will (or to him... as if he can talk to them - haha) say something about it and I always take it as an opportunity to spread the word about cranio. they don't always ask... I ALWAYS tell them anyway. If they've made an effort to comment I feel I have the full right to explain to them why he has a helmet.

it's my one chance to educate that person. and way too few people know about cranio. be upfront... don't be ashamed... have fun with it... people are very open to hearing your story.

here's my "rant thread about stupid people and Jack's helmet!

http://www.craniokids.org/support/showthread.php?t=6356

[heatherific]

I bought some stickers last night! Now I just have to find a time to decorate. I think I'll go back & buy some smaller ones so I can do the "google it" thing too. I love it! I also plan to embroider a really cool cranio shirt for her. If I ever get it done I'll post it.

Jackson's mom: I appreciate your outlook. You've inspired me to be more upfront with people. I kept thinking that I'd love to share if only they'd ask. But now I think I'll try your approach - if they say anything at all it's my opportunity to tell them.

Larkin: Thanks so much for the compliment. You cheered me up :)

I'm so glad I finally decided to start posting on here.

[jumpingjacksmom]

btw... she looks great in her band! i love how their sweet faces are framed! pretty soon it'll be coming off and you'll actually catch yourself say "I think i'm going to miss it" -- never thought i'd hear myself say that, but i did just a few days ago... it's weird how it becomes a part of them...

don't get me wrong, i'm so ready to get it off, but it really is a neat part of him that will be looked back on as an exciting stage of his life!

[dannlark]

We're glad you decided to join us here too!! :smooch

[boonseamus]

We had the helmet for a year after surgery. It is hard to get used to other people's reactions but I promise the longer she is in it, the more you just want care anymore. I'll never forget how right after my son got his helmet, my 2 year old daughter fell and got a concussion and we were at the emergency room. My son was in his stroller with the top down so I didn't think anyone could even see him. The nurse came out and made a beeline for HIM to take his vitals because she just assumed he was the one who had fallen. I was like "ummm what are you doing? My daughter is over there."
Humor is really the best way to deal with the stupid questions cos at least it makes you laugh instead of get mad. Some of my faves: "Yes we just got him a helmet so he can start practicing football. He's going to be a pro when he grows up by God"
and " well I was trying to hang him out the window like Michael Jacksons baby. Guess the wasn't such a great idea."

[Kaitlynn's Mommy]

I would've walked away as soon as she went to get another associate! Luckily we haven't had to deal with rude people like that. People just ususally say " I see lots of babies with helmets" and then when I explain what happened to her they chime in "My third cousins (you know) baby had to wear a helmet, they had that too. " Like it's the most commen thing. SERIOUSLY. Here it's not that commen. Kaitlynn was only the 2nd baby/child that had been treated for it in our local hospital.

HUGS, it gets better I promise! I agree though that making it personal always helps! And we try to go to the same stores, that way pretty much everyone knows our story, and they're not always gawking at her helmet because it's new.

[jumpingjacksmom]

a little lady asked yesterday in the parkinglot of wal-mart where i got jack's helmet cause she thought it was cute and had a grandson that was about was about to turn one! i think she wanted one for his birthday!! HAHA

[Tawnia]

LOL Kerre.

We didn't have a helmet but when Azia was all swollen I had a sweater (zip up) made for her that said "Post Op Pretty" :) then peolpe wouldn't think I beat her up lol

[whatatrip]

We have triplets. One is getting a helmet next week. People seem to think they can just say whatever they want and they make comments about us having three babies constantly. I can't wait to see what they will say when one has a helmet on. And you are right. They do not even consider or notice the child. They talk around you, not to you. Ember is precious and they will be stupid forever!

[dannlark]

Well put, and WELCOME!!

[heatherific]

thank you, and CONGRATULATIONS on triplets! i've always thought multiples are amazing. playmates for life! :)

[Jenny]

Heather,

I just noticed your kids' names.. how adorable! I also noticed they are close in age to my three. :adore

[GavansMom]

First off! Lots of love to you and your baby girl.

- if an employee of an establishment is making a big deal, find a manager and make sure the incident goes down in their file. I would wait until they wrote a final pay check and said adios to that horrible checker!!!

- the man who pointed out the helmet I would say "Oh my God. She's wearing a helmet???? I had no idea. Thank you for pointing that out! I would've never known" which can always be followed up with "you piece of crap asshole!"

- You said you're shy- here's a one liner: RUDE!!!! you have to go to youtube.com and
watch MAD Tv's Bon Qui Qui http://www.youtube.com/watch?v=jZkdcYlOn5M just copy her ;)

-You could be very straight forward as well "this is my daughter. she is a person who has feelings. she's wearing a helmet because she is being treated for a medical condition."

I go into full mama tiger mode over my kids and family, you don't mess with them. A PETA protester once called my Aunt a big dummy and I started in with "look you skinny little bitch...." oops, ear muffs kids! But really, don't ever let anyone make you feel inferior. You're a mommy- that means you are strong, brave and capable of anything!!!

love love love

[heatherific]

thanks jenny! and i didn't even realize, but they are pretty close, huh? is mikayla in school? autumn will be going next year, i've been on an emotional roller coaster about it for months!

baylee, you're hilarious! i'm definitely too shy to do that but maybe next time i'll get their phone # and have you call them! i did contact the corporate office of that company & they jumped through hoops to make sure i was happy. btw, gavan is adorable!!

[dannlark]

Heather, Ember looks FANTASTIC!!! She's Beautiful!!!