Re: nothing but stares today :-(

[Guest guest]

I know how you feel....but please don't let it stop you from going out...i

have had some nasty looks and remarks BUT I just tell my self....this is for

my daughter and it is helping her.....the helmet is something to get used

to...we are in a DOC band....4 days ago I had a little girl ask me " does

that keep her brain from falling out? " ....okay...so since she was a little

girl i calmly said.... " no this is helping her head grow round " ....she then

in turned raaaaaaaan to her mom YELLING for everyone in the store to hear "

Mama....its not keeping her brain from falling out...its making her head

ROUND " ......then it seemed like EVERYONE that heard her was staring at

us...soooo....to make a very long story short we had a lot of stares...still

do....and if people say something rude correct their " idiotic "

comments.....I understand that people don't always know what to say when

they see a helmet...or what to even think that its actually doing.....but

there is def. no need for nasty comments! Set them straight but do it

politely...we don't have to stoop to their levels! From one mom to another

HUGS and I wish you courage and strength because this is a tough road to go

down...but one that has a GREAT reward at the end!

Domi and Aimee (helmet wearer since Nov.29,2000)

----- Original Message -----

From: <lisabnetz@...>

<Plagiocephalyegroups>

Sent: Sunday, January 21, 2001 9:25 PM

Subject: nothing but stares today :-(

> 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]

:

Don't worry, it will get easier as time goes on. When you see people

staring, talk to your son in a happy voice. Keep busy. Keep your head

up, look proud, and smile at the people. You know that you are doing

what's best for your child, and it doesn't matter what others think.

There are a couple of samples of handouts in the files section.

Consider making one for yourself. I found it fun to hand my handout to

people who felt it was better to whisper and make up their own stories,

rather than politely ask what Hanna's band was for. I'm sure they felt

like heels after.

Chin up! You're doing great!

Kendra

lisabnetz@... wrote:

> 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

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>

>

[Guest guest]

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)

[Guest guest]

In a message dated 1/22/01 8:10:21 AM Pacific Standard Time, Hashworth73@... writes:

My son is waiting to be molded for the DOC and to be honest with you I have thought about the stares ALOT

Maybe because I'm in Wisconsin, not sure, but people have been so nice to us with the band. I've never had a bad experience yet! Also this only gives us as parents a small fraction of what it must feel like. Think of all the people in this world that are severely handicapped, disfigured, terrible diseases, conditions they live with. Please, lets not make a big deal out of this and be grateful that this is a small problem to deal with in this big world.

Tammy & 12/8/99

[Guest guest]

Heidi:

Please don't expect the worst when it comes to going out in public. I

had nothing but good experiences out there. Of course people are going

to look, it's in our nature to check out something we have never seen

before. Just keep your thoughts positive, and you'll be fine. You'll

find that the people who ask are children and the elderly. When you

speak to children, be honest, and talk loudly so that their parents can

hear you (I guarantee they will be listening). The elderly will usually

tell you that they wished they had something like that when their kids

were learning to walk. If it's in passing, just say something like " ya,

it's pretty handy " , or if it's a conversation, just tell them what it

is. Like I said in a previous post, consider making a handout that you

can give to people who ask questions. It's a way to educate them, and

they may end up passing that information to another mother who needs

it! Check the files section to see some sample handouts.

Kendra

Hashworth73@... wrote:

> 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)

>

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[Guest guest]

We get people staring all the time, but it is kind of fun to have them look

at . And the silly (stupid) things that they say as quiet as possible

are actually funny to me, because they should just ask questions.

My husband is really good that anytime anyone looks at us or we talk to

anyone, he gives a quick explanation about the band...he was born with a

misshapen head and this helps shape it correctly....and everyone just goes

ok....

You'll get to that point, but be tough, remember he needs it. We've done

really well and will be starting his second in two weeks.

and 6/26/00 (banded 12/21/00)

[Guest guest]

In a message dated 1/21/2001 10:19:09 PM Central Standard Time, kbgarv@... writes:

.. When you see people

staring, talk to your son in a happy voice.

You do get used to it after a while. Just give it time. There are times when I just tell Vince to say "HI" and people turn away real quick or sometimes answer him! When people stare he has always stared right back.

Belinda(Indiana)

[Guest guest]

> I just tell Vince to say " HI " and people turn away real quick

>

Hanna says Hi to EVERYONE! I would say that 7 out of 10 people just

look the other way. Why is this??? Why would you not want to say hi to

a baby? That just bugs me!

(for those who don't know, Hanna is no longer wearing a band, and her

head looks fine!)

Kendra

bgles2@... wrote:

> In a message dated 1/21/2001 10:19:09 PM Central Standard Time,

> kbgarv@... writes:

>

>

>

>> . When you see people

>> staring, talk to your son in a happy voice.

>

> You do get used to it after a while. Just give it time. There are

> times when

> I just tell Vince to say " HI " and people turn away real quick or

> sometimes

> answer him! When people stare he has always stared right back.

> Belinda(Indiana)

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[Guest guest]

In a message dated 1/22/2001 3:34:17 PM Central Standard Time, bailykuhn@... writes:

Think of all the people in this world that are severely handicapped, disfigured, terrible diseases, conditions they live with. Please, lets not make a big deal out of this and be grateful that this is a small problem to deal with in this big world.

Tammy, I totally agree with you on this. During this last year we have dealt with the bad and the good. We have taken all of this as a learning experience. My 5 yr old included. Since she has heard the explanation so much, she can also pass the info along especially to kids her age like her classmates. It was very difficult at first because I had to explain to her why so many people were starring. She has handled it very well because we never made it a big deal. We never acted devastated or like it could not be treated. So now, when I catch her starring at someone I remind her how we don't like people starring at us because of Vince's helmet. I, too, have realized how difficult it must be for those who are physically or mentally challenged. We are lucky, if we don't like the way our child looks with their "device" all we have to do is remove it!! Belinda(Indiana)