Re: [it's not jeopardy

[Guest guest]

WOW! You’ve got a big heart, to offer up an explanation to people who even have the nerve to ask you about Aedan’s eyes, my hats off to you. First - you owe no one an explanation about your child’s eyes or nose or feet and to even take the time to explain any reason for them is detrimental to Aedan and your self. That’s why he needs a machine to stop the idiots from asking mommy stupid questions, he feels embarrassed and he is very aware of what’s going on. If you continue to address questions about his eyes he will withdraw and not enjoy being in your presence in public, we all go through the idiot

questions sometimes it’s better to walk away . Second - every thing he believes in will come from you, the stronger you are the stronger he will become your only as strong as your weakest link. Third - explaining to him in a manner a child can understand about his eyes and the need for surgery and then ending this cycle of explanations and excuses to stupid people who have no right to even think they can ask. Finally (when you can’t walk away) learn to divert stupid questions especially if your son is in your presence, if the lady at the check out counter asks about your son’s eyes ask her (how much

was that). She will get the message. I’m sorry if I sound a little upset, I remember how much I hated being with my mother in public. Every time I started feeling good about my self some idiot would ask about my eyes and I became embarrassed when she started giving reasons. I

was comfortable with my eyes, it gave the impression she was not! My father always had his mean face on in public no one asked him anything and if someone dared to ask, he would ask them (“is that any of your business”). So guess who made me feel good about my self and who I enjoyed being in public with.

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[Guest guest]

This is a fabulous conversation! I'm catching up on my reading and

just can't seem to shut my laptop off!

I have a question to the group and those who are experienced with

kids with BPES and school. Do you think a pre-emptive strike

against the teasing in school is helpful to the children or

harmful? I have a soon to be a 2 yr (Jasmine) who will attend

preschool this fall. I'm not too worried about teasing in

preschool, but do worry when she will attend kindergarden. Of

course by this time she will have her first surgery.

I also agree about not making such a big deal out of her eyes, but I

do plan on educating her on BPES and how to handle the idiots out

there. But do you think speaking to her future classmates about

BPES goes against this thought?

I would love to learn about other's experiences. I've been teased

in school which my parents didn't do anything about it; nor educated

me on my eyes, nor gave me the confidence I needed to face the cruel

words. But over the years, I've learned to gain this confidence on

my own and vow to instill it into Jasmine.

Each time I go and read the entries in this group, I get more and

more impressed with the diversity of this " rare " disorder. This

group proves that what is considered rare may no longer be true. I

am very confident and hopeful that Jasmine WILL have a better

childhood than I did. And partly that is because this group exist!

From what I gathered from the entires that are a few very important

teps to remember: believe that BPES is really not a big deal;

instill confidence in your kids by having confidence in yourself;

and to educate the kids and show them there are no reasons for shame-

only reasons for pure beauty that they posess.

So any feedback from parents out there with kids in school, what

your plans are or what you've done so far will be greatly

appreciated!

Thanks,

Min

--- In blepharophimosis , Good Day <foxl202@...>

wrote:

>

>

> WOW! You've got a big heart, to offer up an explanation to

people who even have the nerve to ask you about Aedan's eyes, my

hats off to you.

> First - you owe no one an explanation about your child's eyes or

nose or feet and to even take the time to explain any reason for

them is detrimental to Aedan and your self.

> That's why he needs a machine to stop the idiots from asking

mommy stupid questions, he feels embarrassed and he is very aware of

what's going on.

> If you continue to address questions about his eyes he will

withdraw and not enjoy being in your presence in public, we all go

through the idiot questions sometimes it's better to walk away .

> Second - every thing he believes in will come from you, the

stronger you are the stronger he will become your only as strong as

your weakest link.

> Third - explaining to him in a manner a child can understand

about his eyes and the need for surgery and then ending this cycle

of explanations and excuses to stupid people who have no right to

even think they can ask.

> Finally (when you can't walk away) learn to divert stupid

questions especially if your son is in your presence, if the lady at

the check out counter asks about your son's eyes ask her (how much

was that).

> She will get the message.

>

> I'm sorry if I sound a little upset, I remember how much I hated

being with my mother in public. Every time I started feeling good

about my self some idiot would ask about my eyes and I became

embarrassed when she started giving reasons.

> I was comfortable with my eyes, it gave the impression she was

not!

> My father always had his mean face on in public no one asked him

anything and if someone dared to ask, he would ask them ( " is that

any of your business " ).

> So guess who made me feel good about my self and who I enjoyed

being in public with.

>

>

>

> ---------------------------------

> Brings words and photos together (easily) with

> PhotoMail - it's free and works with .

>

[Guest guest]

Hi Min

Kirsten is 3yrs now and has been in 4 nursery schools/ daycare since

she was born because we have moved so often due to my husbands job.

In my experience she has never been been teased by the other kids.

She had her sling surgery at 2 (relatively later than some).

Initially she gets stares and the odd pointing from the older kids

(5 yrs and up), but that soon stops as they get to know her. I find

that the questions come from the parents and I give them a short

explanation. Most parents have been concerned that she can't see.

Her brother is 7 yrs old and recently one of his friends said she

looks chinese and he asked if her eyes will ever be normal. I just

said that she was born with small eyes and yes, they will eventually

look normal and he accepted that and didn't mention her eyes again.

I still get caught off-guard when a question/ comment pops up and I

haven't worked a standard answer - is there ever one?

So to give my opinion on your question about a pre-emptive strike

against teasing, I would say that at 2yrs it is unnecessary to say

anything to the kids as a group. It may be useful at 5yrs or older

if she were being teased. Your point has given me food for thought

and if I were to say anything to Kirsten's group, I would be present

with the teacher in the classroom setting, make the explanation

short and simple and answer questions. It would be a good

opportunity for the children to discuss anti-bullying and even bring

up their own issues.

To tackle bullying successfully I feel you need the support of the

school as well as the parent. If you were to address her class don't

stand on a soap box on your own, have the teacher and even head-

teacher next to you. I hope I am not faced with this predicament in

the future, but to be honest I am expecting it.

Regards

P

> >

> >

> > WOW! You've got a big heart, to offer up an explanation to

> people who even have the nerve to ask you about Aedan's eyes, my

> hats off to you.

> > First - you owe no one an explanation about your child's eyes

or

> nose or feet and to even take the time to explain any reason for

> them is detrimental to Aedan and your self.

> > That's why he needs a machine to stop the idiots from asking

> mommy stupid questions, he feels embarrassed and he is very aware

of

> what's going on.

> > If you continue to address questions about his eyes he will

> withdraw and not enjoy being in your presence in public, we all go

> through the idiot questions sometimes it's better to walk away .

> > Second - every thing he believes in will come from you, the

> stronger you are the stronger he will become your only as strong

as

> your weakest link.

> > Third - explaining to him in a manner a child can understand

> about his eyes and the need for surgery and then ending this cycle

> of explanations and excuses to stupid people who have no right to

> even think they can ask.

> > Finally (when you can't walk away) learn to divert stupid

> questions especially if your son is in your presence, if the lady

at

> the check out counter asks about your son's eyes ask her (how much

> was that).

> > She will get the message.

> >

> > I'm sorry if I sound a little upset, I remember how much I

hated

> being with my mother in public. Every time I started feeling good

> about my self some idiot would ask about my eyes and I became

> embarrassed when she started giving reasons.

> > I was comfortable with my eyes, it gave the impression she was

> not!

> > My father always had his mean face on in public no one asked

him

> anything and if someone dared to ask, he would ask them ( " is that

> any of your business " ).

> > So guess who made me feel good about my self and who I enjoyed

> being in public with.

> >

> >

> >

> > ---------------------------------

> > Brings words and photos together (easily) with

> > PhotoMail - it's free and works with .

> >

>