RE: Ear Surgery

[Guest guest]

.. For us, it is not worth the surgeries to make his ears look like they are expected to look. For others, this is not the case.

I am not trying to convince anyone that they shouldn't have the surgeries. I am also not criticizing anyone for choosing the surgeries. All I am trying to do here is get people to consciously make the decision surgery vs. no surgery. I think parents _may_ get caught up in the "must fix" mentality, and don't consider not having the surgeries at all. I know I have come across this "must fix" attitude from a few Dr's we have met with.

steve

i respect your point of view,...

actually, i don't...

i respect you, and what you've done to establish the group.

i don't at all respect your point of view, and i believe failure to

do everything in our power to fix, is nothing less than the failure to pass the test of successful advocacy, intervention and parenting.

i frankly find that viewpoint as shockingly insupportable now, (even after coming to have known and respected YOU, )

as i ever did.

and yes, i hope other parents will feel as i do,

and no, i too am not seeking to stir this up again.

but i can never let the point pass, having pointed 500 kids towards the fix, over 15 years.

jack

[Guest guest]

Jack,

A suggested that I attend a meeting that you were organizing with Dr. J and Dr. Brent. Is there anything you could tell me about that. Time and Location??

Leanne (mom of Nate)

was cancelled for 10/14 due to..well, you know...

trying to reschedule for the spring..

i will post the invitation here.

jack

[Guest guest]

Jack,

A suggested that I attend a meeting that you were organizing with

Dr. J and Dr. Brent. Is there anything you could tell me about

that. Time and Location??

Leanne (mom of Nate)

[Guest guest]

but i can never let the point pass,

Jack, I have learned to expect this of you.

Steve

[Guest guest]

i don't at all respect your point of view, and i believe failure to do everything in our power to fix, is nothing less than the failure to pass the test of successful advocacy, intervention and parenting.

It has been pointed out on this list that we should all avoid Dr's who try to prove their worthiness by attacking other Dr's, or other approaches. Please don't attack my opinions to prove yours. My opinions are mine, and I don't try to persuade others to think as I do. I am simply trying to present my point of view. If people don't agree, so be it. At least they are aware of other points of view.

I know I am in the minority here with how we have chosen to raise our son. And despite that, I am extremely confident that we have made the right choice....for our situation. Perhaps there will be some new people on the list that have never even considered not having the reconstructive and cosmetic surgeries. At least I have put the thought in their minds so they can make an informed decision. Maybe there won't be anyone who decides to do the same as we have, at least they can rest assured that they considered ALL possibilities.

And unlike you: I respect not only you, but more importantly your right to have your point of view. I try very hard on this list not to offend, or call down someone's decisions. I would appreciate the same courtesy. I was trying not to respond to this, and stir things up any more, but anyone who has been told they are a failure as a parent has trouble not getting their back up.

Steve

[Guest guest]

It is difficult for my

seven year old son when his friends ask him why his sister has not got an

ear - but we already seeing a little boy full of love and compassion for his

little sister! He answers the questions very matter-of-factly, saying that

she was born like that! Simple, really! No embarressment on his part! I

think that as long as we, as parents, hide the ear/ears, or feel ashamed or

embarressed, we will only be sending that negative image to our children!

If we are proud of their 'little ears' or missing ear or whatever else, we

will have confident children - knowing that they are loved no matter what!

,

You hit the nail on the head!! That is an American expression for "you are absolutely right"!! has anotia, he is missing an ear and has only a small earlobe. He is also a boy, and unlike a lot of other parents, we have chosen to keep his hair at a normal boy length which means his missing ear *is* noticeable. We don't feel we should hide his missing ear with his hair because we want everyone in our town to know him for who he IS and we are NOT ashamed of him. We think he looks beautiful. Exposing his ear forces people to confront their own uneasiness, deal with it and get past it. It also shows them that you / the parent, are not ashamed or in denial and that you are comfortable with it. And believe it or not, this makes them more comfortable with it. I have had total strangers (supermarket check out girls, etc, comment on how cute he is and then, reach out to him and actually caress the side of his head where his ear was missing). I don't think they would have done this if they thought that I was trying to hide is uniqueness.

Self-esteem, fitting in, feeling, (dare I say) "whole" and respected comes from parenting and love. NOTHING ELSE CAN SUBSTITUTE. This includes our own. We must learn to NOT feel guilty or ashamed OR FEEL as if anyone even is "owed" and explanation. THEY ARE NOT. Treat your child normally, and almost everyone else will too.

As you said, children are curious and not afraid to be vocal about their curiosity. I am sometimes asked by a child, usually around 5 to 9 years old, "what happened to his ear?". I just say that "this is the way he was born" As you said, I also found that children are very accepting of this simple explanation. They just kind of shrug it off and play with him like any other normal child...... It REALLY is very simple : ).

Jeannie

[Guest guest]

<< He is also a boy, and unlike a lot of other parents, we have

chosen to keep his hair at a normal boy length which means his missing ear

*is* noticeable. We don't feel we should hide his missing ear with his hair

because we want everyone in our town to know him for who he IS and we are NOT

ashamed of him. >>

When my son was first born my own mom told me I could grow his hair long. I

was so hurt and offended. I was also told that by the geneticist. I know

some people choose to have their boys hair longer as a style and not to hide

the microtia, but my 2 older boys wear their hair very short and I wouldn't

think of doing anything different for Brayden. I too would never hide this

part that " is " Brayden. Actually many times when people are staring at first

I think " what are they looking at " It sometimes takes me a while to

" remember " and then I just chuckle to myself.

Autumn

[Guest guest]

see.............this is the support that is lovely to hear/read!! thanks for writing back so soon.

It is past 1 am now - i should be sleeping - - - but this is now MY time!!!!! (And I must adamitt, I am rather intrigued about the comments that are sure to be posted soon!!!)

Jeanie - we are all trying our best to cope with all these sort of situations - - - it is good to hear an 'echo' of what happens to me too!!

-----Original Message-----From: Jean11375@... Sent: 04 February 2002 12:33To: AtresiaMicrotia Subject: Re: Ear Surgery

It is difficult for myseven year old son when his friends ask him why his sister has not got anear - but we already seeing a little boy full of love and compassion for hislittle sister! He answers the questions very matter-of-factly, saying thatshe was born like that! Simple, really! No embarressment on his part! Ithink that as long as we, as parents, hide the ear/ears, or feel ashamed orembarressed, we will only be sending that negative image to our children!If we are proud of their 'little ears' or missing ear or whatever else, wewill have confident children - knowing that they are loved no matter what!, You hit the nail on the head!! That is an American expression for "you are absolutely right"!! has anotia, he is missing an ear and has only a small earlobe. He is also a boy, and unlike a lot of other parents, we have chosen to keep his hair at a normal boy length which means his missing ear *is* noticeable. We don't feel we should hide his missing ear with his hair because we want everyone in our town to know him for who he IS and we are NOT ashamed of him. We think he looks beautiful. Exposing his ear forces people to confront their own uneasiness, deal with it and get past it. It also shows them that you / the parent, are not ashamed or in denial and that you are comfortable with it. And believe it or not, this makes them more comfortable with it. I have had total strangers (supermarket check out girls, etc, comment on how cute he is and then, reach out to him and actually caress the side of his head where his ear was missing). I don't think they would have done this if they thought that I was trying to hide is uniqueness.Self-esteem, fitting in, feeling, (dare I say) "whole" and respected comes from parenting and love. NOTHING ELSE CAN SUBSTITUTE. This includes our own. We must learn to NOT feel guilty or ashamed OR FEEL as if anyone even is "owed" and explanation. THEY ARE NOT. Treat your child normally, and almost everyone else will too. As you said, children are curious and not afraid to be vocal about their curiosity. I am sometimes asked by a child, usually around 5 to 9 years old, "what happened to his ear?". I just say that "this is the way he was born" As you said, I also found that children are very accepting of this simple explanation. They just kind of shrug it off and play with him like any other normal child...... It REALLY is very simple : ). Jeannie

[Guest guest]

*I thought* a support group for Microtia was a group in which people can talk about issues that arise as the child or person is confronted with them.

do nothing about these issues.

I myself was looking for a group that had others that were willing to discuss these occurences ie: someone may have been through a situation where somebody stares at them or their child and I am wanting to know how they deal with that.

do nothing about this!

Or hints on how to help my son with his learning abilities.

do nothing about them!

Or even tell their tales of

hurdles they have come across that I wouldn't even think of.

don't tell of them!

don't think of them, either!

Then again Jack, you have given me a wonderful idea!!!! If I come across more people with similar views as you then maybe I will start a support group for people who decide not to have the surgery. I don't think I would be the only person. But then again , if I did start a support group just for that , then I feel I am being small minded and selfish in not willing to give my support to everybody affected with Microtia.

rebecca

i've exaggerated your responses so my suggestions would appear silly.

but you ask me to support a decision in which YOU say..: "do nothing!"

you wouldn't *think* of not dealing with your issues above, nor would any of us...

i've just...connected the dots.

Thank you for your criticism it makes me think harder and do better!

likewise, rebecca!

jack

[Guest guest]

G reat advice Jeannie. We are very open with , and others who ask questions. We encourage to answer these questions as well. He explains that he was born that way, and his hearing aid helps him hear. The other children shrug, and continue playing with him. I agree that how you as a parent talk about it, makes a big difference on how your child talks about it, and thus his feelings towards it.

Steve

hey steve!

i agree!

HONEST|!

jack