Maybe my best attempt.

[Guest FourAnchors]

Where people will go.

Edited September 24, 2009 by FourAnchors

[Guest GingerSnap]

Four Anchors: What a beautiful little girl! Gosh, I have a son with Down syndrome and people have given us "looks" for 23 years and comments of course and I just give them "looks" and comments back. There are many people with ugly hearts out there and I am sorry that you and yours are having to endure their existence. I identify with your stress and wish I had more to offer you. I swear I don't know what is happening in the world today. I am sure that one of the professionals on the website will have some assistance to offer.

[Guest FourAnchors]

Thank you Gingersnap!

I have done my share of staring back.

In fact one story I love to tell is the day my children and I were at a Sarbuck's.

There was a lady with three teenage girls with her, as she slightly covered her mouth, (as if I couldn't hear) to tell the girls to look when they could,

and just as one of the girls turned around take her look, I spoke VERY loudly and said " Oh look kids, here, everybody turn around in a line, these people want to look at us!" ..The lady and girls looked horrified and if they could have crawled in a hole I'm sure they would have because I called them out and loudly.

They immediately turned around and walked out of the store.

I don't understand people with ugly hearts. I see children and adults with what I assume to have down's Syndrome, autism etc., my first reaction is I always want to go right up and start talking to them!! My experience is they are so kind and I love seeing them smile and their faces light up as they tell you about something that is exciting to them!

My daughter's have a rare genetic syndrome which "can" cause facial "abnormalities" but not always. It is a cranio-facial condition and nothing more. But I still wonder, what is it that stands out about my daughter's looks that would bring on the comments. I do know the answer obviously, I'm just wondering if anyone here can point it out.

My heart goes out to you and your son (sorry I first put daughter). I wish I had advice but it sounds like you deal with this better than I.

[Guest GingerSnap]

I'm not sure if you live in a small town but that can be especially rough and especially if the people are in general ignorant about different types of conditions. There is a woman, I don't even believe that she has a disability that goes to the center where my son goes for day services and she has some condition where she has warts and this sounds bad, but like what a "witch" usually has. She almost always looks down but now I always smile and say "hi" and she now greets me with her head up. I did see her once at the little grocery store and an ignorant woman and her unmannered child were there and the child said and pointed, of course, "Mommie whats wrong with that ladies face?" I gave them the most dirty look I could muster (and I am really good since I have had so much practice). I once had a little boy come up and ask me what was the matter with my son (my son was young then) and I explained to him and he listened so carefully and kindly and always greeted us pleasantly - you know, it is usually the adults that are the real problem. When I was a kid, I got made fun of all the time, I was poor, my clothes weren't right, my parents weren't born there, I was not good in gym class, etc. My dad would have beat us to death if we ever made fun of anyone. This could be a really bad idea but often education does help. I have seen where someone with a "condition" or someone for them presents the facts to the different groups that they might be a part of. People fear what they don't understand or so I hear. Like I said, I just don't know what is happening to people these days that they are so selfish and uncaring but I swear on most days it seems like they are taking over the world. My best

[mscat]

Four Anchors,

I looked at your daughters picture, and could see NOTHING wrong? She looks like a beautiful, happy little girl to me.

On a personal note, My child he has cognitive delays and has a diagnoses of being on the autism spectrum. Sometimes his behaviors can cause others to 'stare" When he was very young, he was more out of control and his behaviors were more chalenging. YES, I remember to this day grown ups coming up to me asking me what's wrong with him?? I thought how Fu**** RUDE.

Now , there is me. I have severe scars all over my arms. Sometimes , idiots still approach me and ask about them, strangers do. WTF? my feeling is that it is nobodys damn buisness about my burn scars , or my childs behaviors. He is not hurting anyone, I am not hurting anyone, why are people so damn insensitive?

My son, now is 16yrs old. He hates it when we are out in public and people have the nerve to either stare, or ballsy to approach me about my arms. I have even ignored them. Just turned away and walked off . Let them assume whatever they want happened to me, or why my child seems so much younger then his age.

I find that when people have a physical outward sign of looking a little different, their are more stares or remarks. My son physically looks normal, but sometimes he says things or does things in public that people know somthing is not right about him. I have to be extrmemly patient with those people. But then they see me, and my physical scars, that shuts them up about my child. But, it never fails. Either my son or I are always looked at , by others . It is rude, insensitve and annoying.

Gingersnap, I often wonder too, about what is wrong with our society? There is no common sense anymore , just ignorant people , who have no tact, or even care or think that what they say effects others.

I don't get it either! AND yes, I live in a very small town....

Edited September 18, 2009 by mscat

[Guest FourAnchors]

This will be a short reply..

Edited September 24, 2009 by FourAnchors

[Guest GingerSnap]

I wanted to mention that when you mentioned the condition that your daughters have, I knew what it was immediately since I had saw 3 or 4 television shows about it. I would never had guessed that your daughter had any condition at all. I hope that you can explain to them the defect lies in the heart of those people that act less than humans and not in them. In our state and all others there is sort of a disability network setup and they are a clearinghouse for information in the state they are in - have you heard of anything like that where you live? Ours is called "Families Together" and when my son was in school (thank you God that is over - mostly homeschooled) I called on them for different issues. You're a good mom and the girls are lucky to have you so hang in there.

[Guest FourAnchors]

Just to answer a few questions..

Edited September 24, 2009 by FourAnchors

[Guest GingerSnap]

You probably already know about this but did you see the Yahoo has a support group online for people with and I hope this is more or less right, craniofacial which includes the condition you are talking about. Again, I am sorry that some people are so uninformed and rude but they will get theirs as in "you reap what you sow". My best to a really good and caring mom and her three beautiful inside & out daughters.

[mscat]

Just to answer a few questions..

No we don't live in a small town, actually a rather large area, at least that is where they have grown up.

They do in fact have the condition you seen on television, it's called Crouzon's syndrome, however, in our family's case, our genetic marker is two marks away from actual Crouzon's and that may be the reason the severity seems to be less, my two oldest have had surgeries to open the sutures of their skulls, my oldest has had 8 surgeries to date yet she still looks fairly normal, funny thing is with her is the most noticable difference is one caused by one of the surgeries itself and that is just a small area where her nose bone fused with the rib bone they placed to fill the void when they did her mid-facial advancement.

As far as support we have no resources, there are no groups around here that we could go to and aren't financially able to travel to Seattle on a whim.

We have always discussed our differences very openly, I had NO ONE and I do mean that literally that I could EVER even bring up my hurt as to why I was teased.

Really, the biggest diffeence is our eyes are wide set...that's really about it.

Seems such a small thing but the public has done a wonderful job at making sure we know we look like aliens, fish eyes...the list goes on, and so does the torment.

The public, (complete strangers) are the offenders of tormenting others who have even the slightest flaw > Nobody is perfect. This is what pissess me off when people are so mean, or cruel. Usually it is those people who have their own deep seated personal problems themselves, for them to judge others based on appearance only.

It is painful to see the looks, and hear the comments in regards to my child, his behaviors , can be odd, and other kids are like vultures , they prey on his developmental delays, know that he is "different" therefore is easy pickings , even younger children have a go at him, total harrassment, even throwing bottles of water at our door, laying dead animals at our door too. The name calling, never stops , they do it as much as possible, When I finally know who the boy is, I take action. Report it to the apt. manager, I won;t tolerate their bully behavior . Other kids join in ,their is always a ring leader . I deal with the ring leader , and then it stops. This has been going on for yrs, regarding my child. It's awful, and I have learned to protect my son by taking swift action. Typically the kids run off, or are stunned when I tell them off. However, it all becomes too much at times.

People can be cruel, however their are many more people who are amazing, empathetic, and understanding. Thank goodness for the kind people in this world.

WHen I saw your daughter's picture, she looked like a cute, normal little girl to me. However, I am one that does not judge a book by it's cover, I never have. Especially children, I love children , being a former teacher, & having raised my special needs son on my own for 16 years , I've seen many , many children with all kinds of special needs, including genetic disabilites.

I guess , I am very use to being around children, adults with all kinds of needs .

I am disabled, lots of people are , it is what it is, and all should be treated with respect, and dignity.

[IrmaJean]

I'm looking at the picture of your little girl and I see a beautiful, smiling child. What could be more precious than that? No person is ever born out of a "perfect mold", but they can be perfectly themselves. And what other way to be? It's sad that anyone would consider treating another person (especially a child) with such cruelty. Most likely this comes from insecurities within the people who have treated your children in this way. All children are treasures and bring hope and joy to the world. True beauty comes from within. The rest is merely perception. I'm sorry that others have treated your family so poorly. I imagine that must be very painful for you and your children.

[Guest ASchwartz]

Dear Fouranchors,

I agree with IrmaJean. I looked at that wondeful picture of you daughter and she is very beautiful. In fact, she seems so lovely that I find myself confused as to why she is being so terribly teased and tortured.

There is a book that you might find interesting in that it will help you know that you are not alone. It is called Odd Girl Out. It is now in paperback and, come to think of it, all of you might find it helpful. This woman was doing her doctoral dissertation and came upon this issue. So, she studied how girls all across the nation treat one another and what she found was horrifying. Girls from the poorest to the riches neighborhoods and from all ethnic groups are mean to each other and, for no other reason than they get together and target another girl.

I have two adult daughters who confirm this when I discussed it with them.

What do all of you think?

Allan:(

[Guest FourAnchors]

Allen,

Yes, I agree that girls are genarally very cruel to each other.

It is not the case with mine however.

On another note, sorry to confuse anyone, but

if you happened to quote me in this thread (or any other)

would you mind deleting it? Please.