Re: How to handle questions?

[Guest guest]

,

Yes, you are right. Strange looks, comments, and questions are going to be coming your way. When my son was in his helmet, at first I was reluctant to take him out in it. I wanted him to be treated like a normal baby. I found that without the helmet, people would talk to him and tell me how cute he was. But with the helmet, I felt avoidance towards , like people were pretending he wasn't there. At first it made me feel really bad, but when I kept the reason I was doing it in perspective, it made it easier. You will get to the point where you forget it's even on her head. That made it the easiest for me. If I acted like there was nothing different about , people would act the same towards him. It was when I seemed like I had a chip on my shoulder when someone would look or comment, I think people picked up negative vibes and probably felt there really was something wrong with .

There are some people who will not even be open to hearing the true reason for the helmet. Most people would make jokes like: "Oh, crash helmet, huh?" Or "Is that for if he falls when he's learning to walk?" I mean, yeah, it did help with falls, but who would actually put a helmet on their kid's head for only that reason?

I have to say that there are others on this list who have had more unpleasant experiences. I was pretty lucky. Don't get me wrong. I got plenty rude comments and strange looks, but there are also very genuine people out there who could be educated from your experience. That's how I looked at it. A chance to get the word out about plagio. The fact that my son's ped dismissed this problem repeatedly before it was treated led me to believe that there are others out there about to embark on this condition who will be just as clueless as I was. When a mother or grandmother or even father would ask me about my son's helmet, depending upon the amount of interest I detected, I would sometimes explain plagio to them and what the helmet was doing. Most people were taken aback but realized that with back sleeping, that was inevitable. Some actually asked me directly if it was to shape his head from being flat. Some told me that their niece or nephew or cousin or whatever was going through helmet therapy. Then there were those who would say things like, "Well, my niece is a teenager and she had a flat head when she was a baby. She's okay now." A Safeway checker once laughed at when we went through the line and she looked at me and said, "Yeah, I guess these shopping carts can be pretty dangerous..." Besides the fact that they can be very dangerous for children, she wasn't saying it like that. She was saying it like I was a very overprotective mother.

When your daughter starts wearing the band, I would look at it this way. Even though it would be nice if people would just mind their own business, it's human nature to stare and question the unknown. Just think, you probably would too if you didn't know what it was. I would use the opportunity to spread the word. You never know how many babies out there you could help. Maybe some grandma sees a in her band, asks what it's for, you tell her about plagio, and then she realizes that her little granddaughter has developed a flat spot on her head that until now has been dismissed as "not a problem. it will round out on its own." She may be able to get something done about her grand-daughter's head.

As for family and friend's comments, it's kind of like you're damned if you do, damned if you don't. The same people who were telling me I had to do something about 's head were the same people who wanted the helmet taken off in pictures and such. There's always going to be that one person that is very cruel about it. Above all, you just have to remember why you're doing it. For a. a's not going to care when she's 16 that your friend made fun of her when she was a baby. But she will be forever grateful to you that you did everything you could, out of love for her, to ensure she lived a normal life and treated equally. The way I see it, life and growing up in this world is hard enough with a normally-shaped head. Believe me. I was tormented from 7th to 10th grade and I had a perfectly round head.

So sorry this is so long. But this is one of the biggest hurdles, I feel, with the treatment. I wanted to give you my 2 cents, or more like 25 in this case! I'm sure others can chime in and give you some witty responses. My MIL told me to tell people was a skateboard champion when people would ask me if it was a bike helmet or a hockey helmet. (????) Anyway, good luck, and please let us know how it goes.

Kellie, mom of , 19 months

Seattle Children's helmet, 1/17/02 to 4/20/02

[Guest guest]

Very well said, Kellie!

Someone here gave me the advice to say something like, "Aren't they the cutest things in the whole world?!" whenever I had someone staring at me and the twins. And many have suggested decorating the bands to make them look more fun and less sterile to people who don't know what they are. Then they ask about the decorations rather than the actual medical reason for the band. This almost always lead to a very comfortable, but short discussion about the band. Also, just remember that the time in the band is so short in the scheme of things that before you know it, your baby will be graduated and no one will even know anything was ever wrong.

Gail, Sam and Sara's mom, DOC grads

Re: How to handle questions?

,Yes, you are right. Strange looks, comments, and questions are going to be coming your way. When my son was in his helmet, at first I was reluctant to take him out in it. I wanted him to be treated like a normal baby. I found that without the helmet, people would talk to him and tell me how cute he was. But with the helmet, I felt avoidance towards , like people were pretending he wasn't there. At first it made me feel really bad, but when I kept the reason I was doing it in perspective, it made it easier. You will get to the point where you forget it's even on her head. That made it the easiest for me. If I acted like there was nothing different about , people would act the same towards him. It was when I seemed like I had a chip on my shoulder when someone would look or comment, I think people picked up negative vibes and probably felt there really was something wrong with .There are some people who will not even be open to hearing the true reason for the helmet. Most people would make jokes like: "Oh, crash helmet, huh?" Or "Is that for if he falls when he's learning to walk?" I mean, yeah, it did help with falls, but who would actually put a helmet on their kid's head for only that reason? I have to say that there are others on this list who have had more unpleasant experiences. I was pretty lucky. Don't get me wrong. I got plenty rude comments and strange looks, but there are also very genuine people out there who could be educated from your experience. That's how I looked at it. A chance to get the word out about plagio. The fact that my son's ped dismissed this problem repeatedly before it was treated led me to believe that there are others out there about to embark on this condition who will be just as clueless as I was. When a mother or grandmother or even father would ask me about my son's helmet, depending upon the amount of interest I detected, I would sometimes explain plagio to them and what the helmet was doing. Most people were taken aback but realized that with back sleeping, that was inevitable. Some actually asked me directly if it was to shape his head from being flat. Some told me that their niece or nephew or cousin or whatever was going through helmet therapy. Then there were those who would say things like, "Well, my niece is a teenager and she had a flat head when she was a baby. She's okay now." A Safeway checker once laughed at when we went through the line and she looked at me and said, "Yeah, I guess these shopping carts can be pretty dangerous..." Besides the fact that they can be very dangerous for children, she wasn't saying it like that. She was saying it like I was a very overprotective mother.When your daughter starts wearing the band, I would look at it this way. Even though it would be nice if people would just mind their own business, it's human nature to stare and question the unknown. Just think, you probably would too if you didn't know what it was. I would use the opportunity to spread the word. You never know how many babies out there you could help. Maybe some grandma sees a in her band, asks what it's for, you tell her about plagio, and then she realizes that her little granddaughter has developed a flat spot on her head that until now has been dismissed as "not a problem. it will round out on its own." She may be able to get something done about her grand-daughter's head.As for family and friend's comments, it's kind of like you're damned if you do, damned if you don't. The same people who were telling me I had to do something about 's head were the same people who wanted the helmet taken off in pictures and such. There's always going to be that one person that is very cruel about it. Above all, you just have to remember why you're doing it. For a. a's not going to care when she's 16 that your friend made fun of her when she was a baby. But she will be forever grateful to you that you did everything you could, out of love for her, to ensure she lived a normal life and treated equally. The way I see it, life and growing up in this world is hard enough with a normally-shaped head. Believe me. I was tormented from 7th to 10th grade and I had a perfectly round head.So sorry this is so long. But this is one of the biggest hurdles, I feel, with the treatment. I wanted to give you my 2 cents, or more like 25 in this case! I'm sure others can chime in and give you some witty responses. My MIL told me to tell people was a skateboard champion when people would ask me if it was a bike helmet or a hockey helmet. (????) Anyway, good luck, and please let us know how it goes.Kellie, mom of , 19 monthsSeattle Children's helmet, 1/17/02 to 4/20/02 For more plagio info

[Guest guest]

Kellie had a great reply to you as well as others. You will do fine and you

will be surprised at how much you end up liking the band and your little

cutie in it. Just decorate it and put her name on the front- I put hi I am

l'il on his and even though we had stares most people just said hi

smiled and went on their way. You will get some questions but just do

what makes you comfortable. One little girls response to seeing the helmet

was that God wasn't finished with her yet-maybe you just want to say that and

keep moving or there is a little info card you can print out fo the files

section that you can hand people that stare. Do whatever you feel comfortable

with and you will be fine. We are so glad you have found us!

beck

[Guest guest]

and Matt,

I would second everything that Kellie addressed- she did a great job at

really peeling the layers off this complex social issue. It's not uncommon

for people to stare at anything that's different, whether its blue hair, a

huge nose, or funny pants! I could handle the stares just fine, and I would

always have a smile on my face- and I would be even more loving and

affectionate with in public. I think it really confused some

people, like, why is she so happy? For the most part, I had really genuine

concern from people with polite smiles, and a one liner about why it was on.

I would tell people it's to help the shape of his head, and for kids, I

reassured them that it didn't hurt and he did not have a boo-boo. Kids

seemed to be very friendly and even wanted one of their own by the time we

were done talking. It seemed to attract kids sometimes in a more friendly

way, they wanted to play with him more. For parents that stared and just

wouldn't budge, I wish I had used Marci's line of, " he's cute, isn't he? "

The hardest part was always in a waiting room somewhere- but it was also the

only time people seemed to approach me about it. I think its great that you

want to downplay it for family and friends, as I feel it did make

" different " from his peers in the family, but I still educated them on plagio

so that they would not feel " sorry " for us as it is very treatable with

great success. It's all about your attitude. I did cry when it was first

put on him, sobbed like a big baby, I just felt so sad. But that passed

within days as I knew full well this was the right thing to do (many thanks

in part to this great group of people!). Good luck and don't worry about the

comments, as I like to say, this too shall pass, and one day you'll look back

and say, " what a piece of cake! "

' Mom