Re: nothing but stares today :-(

[Guest guest]

Boy, do I know how you feel. We've had the band since Friday and the

first day was great. But this morning, we went to Cosco (big

warehouse store) and I couldn't believe how many stares, snickers,

and whispers we got. I felt the same way as you. I was feeling

really good about the band and suddenly I just felt horrible. After

a while, I think I even started imagining people staring and

whispering. It's more difficult to get used to than I had thought it

would be.

My husband told me to just remember that these people are just

ignorant, and that they don't know any better. That they don't know

how absolutely wonderful our baby is. And that WE know how special

our little boy is, that we are doing what is best for him, and that

is all that really matters. Not what a bunch of stupid, insensitive

jerks(he used another word) think.

I'm still feeling uneasy, but I'm going out tomorrow and I'm going to

be as proud as I can of my little guy. He's such a trooper. I have

to be too. Hang in there and let us know how you're doing.

Lily

P.S.

Where in Philly are you from? My husband grew up in Cinnaminson, NJ.

> my son has had the starband for 10+ days and is not sleeping

with

> it yet. however, he doesn't mind riding in the car with it on. so

> today, i decided to go to babies r us. this was our first

trip " out " .

> i felt really strong and comfotable about being in public because i

> started to get used to it myself.

> well...from the moment we walked into the very crowded store

(bad

> weather in philly today), through every isle, i got nothing but

harsh

> stares. people actually had the nerve to whisper horrible things

> right

> in front of me. one ladyeven came up to me and said " i feel for you

> honey " . i know she meant well, probably, but it hurt so bad. i was

> determined to continue shopping but after about 15 minutes i

couldn't

> take it anymore. i removed the helmet.

> i then felt so guilty for being so vain by removing it. i knew

it

> wasn't bothering my son and clearly he needs this. i ended up just

> leaving the store. i put it on in the car again, called my husband

> in tears and moped all the way home.

> i read a lot of peoples post and it didnt seem like anyone

else

> had such a horrible experience. i know i was probably overly aware

> and therefore overly sensitive but i really couldn't deal with it.

> this totally sucks.....sorry, but it really really does and its

> not fair!!!!!

>

> ....i feel a little better now....thanx for listening.....

[Guest guest]

i am definately going to keep going out, but i just don't know if i

can deal with having the helmet on all the time. i am going to keep

trying though. even though the people are ignorant-its really hard to

be a focal point for something " different " , thats not in a good

way.and even though i would love to educate people-i don't think

explaining my sons " condition " to every passerby is so poosible and so

easy. i would rather run a campaign... when its that hit you in the

face thing at all times...i just dont know. how has your son handled

this new addition to his head? how old is your son?

i'm from dresher, pa originally. i am moving to cherry hill in 10

days. i am not sure how far cinnaminson is?

> > my son has had the starband for 10+ days and is not sleeping

> with

> > it yet. however, he doesn't mind riding in the car with it on. so

> > today, i decided to go to babies r us. this was our first

> trip " out " .

> > i felt really strong and comfotable about being in public because

i

> > started to get used to it myself.

> > well...from the moment we walked into the very crowded store

> (bad

> > weather in philly today), through every isle, i got nothing but

> harsh

> > stares. people actually had the nerve to whisper horrible things

> > right

> > in front of me. one ladyeven came up to me and said " i feel for

you

> > honey " . i know she meant well, probably, but it hurt so bad. i was

> > determined to continue shopping but after about 15 minutes i

> couldn't

> > take it anymore. i removed the helmet.

> > i then felt so guilty for being so vain by removing it. i knew

> it

> > wasn't bothering my son and clearly he needs this. i ended up

just

> > leaving the store. i put it on in the car again, called my husband

> > in tears and moped all the way home.

> > i read a lot of peoples post and it didnt seem like anyone

> else

> > had such a horrible experience. i know i was probably overly aware

> > and therefore overly sensitive but i really couldn't deal with it.

> > this totally sucks.....sorry, but it really really does and

its

> > not fair!!!!!

> >

> > ....i feel a little better now....thanx for listening.....

[Guest guest]

I'm the same way, unless someone asks I won't go out of my way to

explain. I'm just glad that this is a temporary thing. I guess in a

way, this is how parents of handicapped kids feel, only they have to

live with it on a permanent basis.

Drew just turned 7 months on the 17th. He really is a trooper. He

doesn't seem to mind the band at all. He reaches up and touches the

band every now and then, but otherwise, I don't think he knows it's

there.

Cinnaminson is right near Cherry Hill. It's right outside of

Philadelphia. But, I'm not that familiar with the area.

If you ever feel a need to vent, feel free to e-mail me directly at

gpfeiff@.... It sounds like we're both just starting with

this band thing. Here's to hoping for more good days than bad.

Take care,

Lily

> > > my son has had the starband for 10+ days and is not sleeping

> > with

> > > it yet. however, he doesn't mind riding in the car with it on.

so

> > > today, i decided to go to babies r us. this was our first

> > trip " out " .

> > > i felt really strong and comfotable about being in public

because

> i

> > > started to get used to it myself.

> > > well...from the moment we walked into the very crowded store

> > (bad

> > > weather in philly today), through every isle, i got nothing but

> > harsh

> > > stares. people actually had the nerve to whisper horrible things

> > > right

> > > in front of me. one ladyeven came up to me and said " i feel for

> you

> > > honey " . i know she meant well, probably, but it hurt so bad. i

was

> > > determined to continue shopping but after about 15 minutes i

> > couldn't

> > > take it anymore. i removed the helmet.

> > > i then felt so guilty for being so vain by removing it. i

knew

> > it

> > > wasn't bothering my son and clearly he needs this. i ended up

> just

> > > leaving the store. i put it on in the car again, called my

husband

> > > in tears and moped all the way home.

> > > i read a lot of peoples post and it didnt seem like anyone

> > else

> > > had such a horrible experience. i know i was probably overly

aware

> > > and therefore overly sensitive but i really couldn't deal with

it.

> > > this totally sucks.....sorry, but it really really does and

> its

> > > not fair!!!!!

> > >

> > > ....i feel a little better now....thanx for listening.....

[Guest guest]

I think we are all more aware of the stares with the helmet on. Even before the helmet people always stared because of the baby. People look at babies.

I know I am more aware and paranoid that people are staring becasue of the helmet. Some people thought it was a great idea and wanted to get one (they thought it was like a bicycle helmet) - yea, if you have an extra $1800 to spare.......! Although the helmet is this little harmless foam padded thing, I could see how people who don't know what it is could think there is some "serious" condition. After all we all talk about educating new moms, drs., etc to prevent plagio, so the more people that know about it the better. I know, it is so easy to just take the helmet off, but I think as time goes on we all take if off less and less. I know I used to take it off when cried and now I know that when she cries it isn't because of the helmet and so I leave it on - unless she REALLY screams and I just don't want the helmet to get all sweaty and smell - that's another problem :-). Some people are just ignorant, right?!

[Guest guest]

It may be harsh, but all I have to say is " Screw 'em! "

People have made (what I consider) nasty comments about what's " wrong

with that baby? " The true question is what's wrong with the people

who ask such a question is such a horrible tone? Please know that

you are doing what's right for your precious little one. As for the

poeple who stare and make nasty comments: the problem is theirs.

Walk like the proud mommy you are. You should because what you are

doing for your baby is wonderful. We can " fix " plagio, unfortunately

ignorance and nastiness cannot be fixed with a helmet.

Sue & Riley (banded since 10/23/00)

Phoenix, AZ

[Guest guest]

Gosh all this talk is making me sad. why are people so rude??? I grew up

with a disabled father and people were just brutal. I dont' know if I

ever got used to it. the comments and nasty whispers anyway.. I can

ignore looks pretty good. especially with having twins we're used to

everyone looking at us like we're the local freak show. now it's just

gonna be extra I guess, and negative. the looks you get with twins

aren't typically negative ones. diane

Sue McAuliffe wrote:

> It may be harsh, but all I have to say is " Screw 'em! "

>

> People have made (what I consider) nasty comments about what's " wrong

> with that baby? " The true question is what's wrong with the people

> who ask such a question is such a horrible tone? Please know that

> you are doing what's right for your precious little one. As for the

> poeple who stare and make nasty comments: the problem is theirs.

> Walk like the proud mommy you are. You should because what you are

> doing for your baby is wonderful. We can " fix " plagio, unfortunately

> ignorance and nastiness cannot be fixed with a helmet.

>

> Sue & Riley (banded since 10/23/00)

> Phoenix, AZ

>

>

[Guest guest]

Okay, in re-reading my post I am (somewhat) sorry I was so blunt. I

just feel very stongly about what's right for my kids.

I believe that you don't have to answer to these rude people, but you

do have to answer to your children. For the most part, I haven't

experienced all that many rude people. But there are always a few.

Who cares what they say? It doesn't matter! My 3 year old son

thinks her " hat " is pretty. My husband and I are happy to be doing

what I can to fix this condition. That's all that matters.

Don't give in to them. Be proud of yourself. You're a good mother!

Sue and Riley (banded since 10/23/00)

Phoenix, AZ

[Guest guest]

Heidi,

I agree with Kendra entirely. Most people are really kind hearted, a

few are mean and nasty. I found it really helped to have 's

name on the front of her band. Whereever we are, people always smile

and say hello to her using her name. It kinda makes them see her as

a person, not just at that kid in the helmet. To all the new members

and those just getting banded, it also broke my heart when

first got her band. I too went through all the emotions, we all did.

But time really does help! looks funny now without her band,

like something's missing. I truly don't notice the stares, looks, or

whispers any more. What I do notice is how much bettr her head is

looking!!!! Hang in there...it will get easier. Sorry to ramble on

so long.

Sue & (banded since 9/29/00)

>

> > I got so sad when I read your email. My son is waiting to be

molded

> > for the

> > DOC and to be honest with you I have thought about the stares

ALOT.

> > I know

> > we shouldn't care what anyone else thinks but it's so hard. Im

> > nervous the

> > same thing will happen to me but I know like you I need to suck

it up

> > and

> > hang in there. Im sure each time we step foot in a public place

it

> > will get

> > easier. I knew a friend of a friend whos baby had to wear the

> > helmet. She

> > was having a very bad day and finally when the thousandth person

at

> > the

> > grocery store looked and asked " why is he wearing that? " she

looked

> > at the

> > lady very matter of fact and said " Oh its because he falls out the

> > shopping

> > cart all the time. " Sarcastically of course but Im sure she felt

> > better when

> > she strolled away. Its amazing how nosey people can be. I feel

for

> > you!!

> >

> > Heidi & Luke (still waiting)

> >

> > eGroups Sponsor

> [Choose 3 DVDs for $0.49 each!]

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> >

> >

[Guest guest]

Hi - go back and read some of the older posts. I was at my

oldest daughter's dance class and there was a mom whose son died of

sids 8 years ago and she had the nerve to tell me that I only think I

need the band because of the marketing done by the manufacturers!!!

Kaycee in Albany, NY

> my son has had the starband for 10+ days and is not sleeping

with

> it yet. however, he doesn't mind riding in the car with it on. so

> today, i decided to go to babies r us. this was our first trip

" out " .

> i felt really strong and comfotable about being in public because i

> started to get used to it myself.

> well...from the moment we walked into the very crowded store

(bad

> weather in philly today), through every isle, i got nothing but

harsh

> stares. people actually had the nerve to whisper horrible things

> right

> in front of me. one ladyeven came up to me and said " i feel for you

> honey " . i know she meant well, probably, but it hurt so bad. i was

> determined to continue shopping but after about 15 minutes i

couldn't

> take it anymore. i removed the helmet.

> i then felt so guilty for being so vain by removing it. i knew

it

> wasn't bothering my son and clearly he needs this. i ended up just

> leaving the store. i put it on in the car again, called my husband

> in tears and moped all the way home.

> i read a lot of peoples post and it didnt seem like anyone

else

> had such a horrible experience. i know i was probably overly aware

> and therefore overly sensitive but i really couldn't deal with it.

> this totally sucks.....sorry, but it really really does and its

> not fair!!!!!

>

> ....i feel a little better now....thanx for listening.....

[Guest guest]

I have a had lot of stares as well but only one (so far) rude 'what

is wrong with the baby?' I answered there is nothing wrong with the

baby, he is SUPPOSED to wear a DOC band! She looked at me liked I

had lost my mind. (with a 12 month old, I sometimes feel like I have).

(banded since 01/11/01

>

> > It may be harsh, but all I have to say is " Screw 'em! "

> >

> > People have made (what I consider) nasty comments about what's

" wrong

> > with that baby? " The true question is what's wrong with the

people

> > who ask such a question is such a horrible tone? Please know that

> > you are doing what's right for your precious little one. As for

the

> > poeple who stare and make nasty comments: the problem is theirs.

> > Walk like the proud mommy you are. You should because what you

are

> > doing for your baby is wonderful. We can " fix " plagio,

unfortunately

> > ignorance and nastiness cannot be fixed with a helmet.

> >

> > Sue & Riley (banded since 10/23/00)

> > Phoenix, AZ

> >

> >

[Guest guest]

Believe it or not, I like when people stare or ask about my

daughter's helmet. It gives me a chance to educate them about

plagio. Maybe I have a different slant because I'm an MD.

Sue

[Guest guest]

,

I read your posting and it brought tears to my eyes. How can people

be so cruel. I am scared the day Hannah gets the stairs and the

talking behind our backs. I don't know if I will be able to handle

it without telling someone off. Don't feel guilty about taking the

helmet off. I even told myself that I would " protect " Hannah by not

letting her wear her band in public. I know how you feel, even

though she won't get her band for two more weeks. Hang in there

okay. I am sure everyone who has children with the band, or who are

getting the band have or will experience the same situation sooner or

later. You are doing something really great for your child. You are

a good parent and smile the biggest smile knowing that when those

uninformed people make comments verbal or nonverbal.

Stacey

> my son has had the starband for 10+ days and is not sleeping

with

> it yet. however, he doesn't mind riding in the car with it on. so

> today, i decided to go to babies r us. this was our first

trip " out " .

> i felt really strong and comfotable about being in public because i

> started to get used to it myself.

> well...from the moment we walked into the very crowded store

(bad

> weather in philly today), through every isle, i got nothing but

harsh

> stares. people actually had the nerve to whisper horrible things

> right

> in front of me. one ladyeven came up to me and said " i feel for you

> honey " . i know she meant well, probably, but it hurt so bad. i was

> determined to continue shopping but after about 15 minutes i

couldn't

> take it anymore. i removed the helmet.

> i then felt so guilty for being so vain by removing it. i knew

it

> wasn't bothering my son and clearly he needs this. i ended up just

> leaving the store. i put it on in the car again, called my husband

> in tears and moped all the way home.

> i read a lot of peoples post and it didnt seem like anyone

else

> had such a horrible experience. i know i was probably overly aware

> and therefore overly sensitive but i really couldn't deal with it.

> this totally sucks.....sorry, but it really really does and its

> not fair!!!!!

>

> ....i feel a little better now....thanx for listening.....

[Guest guest]

has had her band on for about 1 month now (how time flies!!!).

I felt like everyone was staring at us the first couple of weeks out.

I think it was somewhat in my mind because I was so aware of it.

I have actually had mostly positive experiences from people. I told my

husband sometimes I think people " over-do " about how cute she is when

they see her in the helmet - especially elderly people.

Ive been very suprised at the number of moms who know exactly what the

helmet is!! I would say at least 50% of the moms I have encountered

have asked me if " that is the helmet that makes their head round " .

Usually I tell them " yes " and ask them where they have heard about

plagio or " head flattening " . Most have said in a parenting magazine or

on the news shows (like dateline or something).

Anyway, its definatly a hard situation, and I have had my share of

stares as well, but I figure its only for a few more months.

Hang in there - try not to take it personally, people usually dont

mean harm, they just dont know how to be polite !!

and

[Guest guest]

> I even told myself that I would " protect " Hannah by not

> letting her wear her band in public.

>

You don't need to protect Hannah! Any attention she gets from people

starring will be just plain 'ol attention to her. If YOU make it

negative, then that's when it becomes negative. Be proud of yourselves

for getting your children the help they need! Don't give in to people's

curiosities that you are interpreting as put-downs. People are curious,

and if they are brave enough to ask questions, give them the courtesy of

an honest answer. If they are whispering, give them a big smile, hold

your head high, and talk to your babies. Again, this is a temporary

situation! Be thankful that this isn't something you have to deal with

forever.

I'm sorry to be so blunt, and I don't mean to minimize anyone's

feelings, but come on gals! Your babies are counting on YOU to give

them the most positive outlook on life!

kendra

rchapman@... wrote:

> ,

>

> I read your posting and it brought tears to my eyes. How can people

> be so cruel. I am scared the day Hannah gets the stairs and the

> talking behind our backs. I don't know if I will be able to handle

> it without telling someone off. Don't feel guilty about taking the

> helmet off. I even told myself that I would " protect " Hannah by not

> letting her wear her band in public. I know how you feel, even

> though she won't get her band for two more weeks. Hang in there

> okay. I am sure everyone who has children with the band, or who are

> getting the band have or will experience the same situation sooner or

> later. You are doing something really great for your child. You are

> a good parent and smile the biggest smile knowing that when those

> uninformed people make comments verbal or nonverbal.

>

> Stacey

>

>

>

>

>

>

>

>

>

>

> > my son has had the starband for 10+ days and is not sleeping

> with

> > it yet. however, he doesn't mind riding in the car with it on. so

> > today, i decided to go to babies r us. this was our first

> trip " out " .

> > i felt really strong and comfotable about being in public because i

> > started to get used to it myself.

> > well...from the moment we walked into the very crowded store

> (bad

> > weather in philly today), through every isle, i got nothing but

> harsh

> > stares. people actually had the nerve to whisper horrible things

> > right

> > in front of me. one ladyeven came up to me and said " i feel for you

> > honey " . i know she meant well, probably, but it hurt so bad. i was

> > determined to continue shopping but after about 15 minutes i

> couldn't

> > take it anymore. i removed the helmet.

> > i then felt so guilty for being so vain by removing it. i knew

> it

> > wasn't bothering my son and clearly he needs this. i ended up just

> > leaving the store. i put it on in the car again, called my husband

> > in tears and moped all the way home.

> > i read a lot of peoples post and it didnt seem like anyone

> else

> > had such a horrible experience. i know i was probably overly aware

> > and therefore overly sensitive but i really couldn't deal with it.

> > this totally sucks.....sorry, but it really really does and its

> > not fair!!!!!

> >

> > ....i feel a little better now....thanx for listening.....

>

>

> eGroups Sponsor

[Get 3 CDs for ONLY $9.99!]

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>

[Guest guest]

I PROMISE that dealing with stares/comments gets easier with time! I

remember the first time I took Caroline to the grocery store, I was all

nervous and felt that everyone was staring at her the whole time. Then

right before we left the grocery store, a woman came up and said " what's

wrong with her? " (wow, be blunt and rude, why don't you!) Thus began the

first of many times I explained that there was nothing wrong with her except

her head had a flat spot and we were trying to correct it.... After that

time I had people say all kinds of things like " she looks like a little

smurf " , " what is she, an astronaut " , " is that part of her Halloween

costume " , etc. Toward the end of her first band, I was getting a little

sick of being everybody's teacher about plagio but I figured the more people

that know about it, the better off everyone would be. We had a two month

down time between bands, so the first time we went out with the second band

on I had that same nervous feeling and thought " well here we go again " .

Flash forward three weeks -- we just went to the grocery store yesterday and

I honestly don't know if anyone stared because I don't care anymore. I've

gotten used to the band, going out, etc. and I know that the more time she

has the band on, the rounder her head will be. So for all of you that are

dreading going places with your banded/helmeted babies, you are not alone.

But you will get used to it and learn to deal. And it's true, you get so

used to your baby with their band/helmets on that when it's off your baby

looks like he/she is missing something! I even had a girl at Caroline's

daycare tell me that she thought Caroline looked better with her band on

after she had it off for a few minutes for " school " pictures. Kind of a

weird compliment, I guess!

Amy Kropka (Caroline's mom - banded 8/22 and 12/29/00)

Charlotte, NC