OT -How to deal with comments from strangers?

[Tigger&Aidan]

I'm not sure where to turn for advice, but I thought maybe someone here has been thru something similar. My DS was born with a Cleft Lip, which was pretty severe. It was repaired and his lip does look good - not 100% "normal" but it looks a thousand times better than it did before.

Last night, we went out to eat. While waiting to be seated, we sat down next to 3 kids. The oldest was next to us and she was probably 10. Aidan was next to her and he was being the social butterfly he normally is! I was talking to DH but i heard her say to her brother, "ew, look at this lip". I guess he didn't hear her, cause she said it again. I just stared at her and didn't say a word. I didn't know what to say. I know this shouldn't bother me, but it does.

I realize this girl was young and maybe didn't know any better (parents were on the other side of the room). If she has asked me what was wrong, it would have been fine and I would have been happy to explain. It was just the way she said it - I guess it made me realize that Aidan will probably get made fun of more than a "normal" kid...... He will have a revision surgery in the next year that will make it better, but it will always be a little different than everyone else.
I don't want him to become self-conscious or ashamed of his lip. I want him to understand that everyone is different and different is ok.

I've gotten questions from younger kids and I just say that God made him that way, etc. I wanted to say something to that girl like it's not nice to say things like that, but I didn't. DH jokingly said I should have told her it was from picking his nose, since that's what she was doing when we got there, lol!

Anyway, anyone have advice for dealing with "differences"? I realize Aidan's probably going to have to deal with this more and more as he gets older.
TIA!

 

[SandrainNC]

Kids just say anything. That is for sure!

In that case, I would have looked at the little girl and told her that wasn't a very nice thing to say.

I think what you have been saying about God making him that way is good. Or say, he had to have surgery.

I had a little boy ask me the other day why my son does not talk. He was probably 3 or 4. I was like, well it just takes him longer to do some things. And another woman (we were in the office of a daycare we were visiting) spoke up and said "he might just be shy". And then of course the little boy was like, well why is he shy, etc. So he was just curious. No harm done. And I was trying to answer him honestly.

I just try to answer as best as I can depending on the age of the child and how they ask. I know sometimes I get caught off guard and have to think for a minute how to answer.

Sandra

 

[dzorn]

If the child is being is asking I would explain if the child is just commenting my standard would be
"if you can't say something nice don't say ianything at all"

Denise in MI

 

[GroovyWheeler]

I was born with a craniofacial syndrome known as "Apert's" (Crouzon and Phiffer's are the two closely related to it). When I was younger, my mom dealt with it by explaining what my syndrome was, to adults. I don't know how she handled the kids, but I guess she might have said something like, "She was just born that way."

The worst thing that I had to deal with, was the same kind of comments your son experienced ("Eww, look at her face/hands/feet" were some of them), and it hurt me a lot inside. But, now that I'm older, if I get hurtful comments directed at me, about me, I just ignore them.

But now that I'm also a walker and wheelchair user too, because of back problems and balance issues when standing for long periods of time, I also explain the reason why I use a wheelchair too, in addition to explaining about my syndrome. The hardest thing is, when people see me in my wheelchair, they automatically assume that I don't understand about the world around me. Even though I have profound hearing loss in my left ear, and wear a bone conduction hearing aid, I'm able to understand what goes on around me.

Samantha

 

[rwrocksme]

Ohhhh, geeze. You know, we shouldn't NEED to say anything. Maybe I was wrong, but I always assumed that teaching tolerance and acceptance was a part of parenting.

We have always said someting like, "It's not nice to stare," etc. It doesn't always work, but at least it calls attention to it.

P.S. OP, you said "I guess it shouldn't bother me, but it does." That's not true--you have every right to be bothered. The world has put us in a tough spot, and rude people make it all the worse.

 

[HappyDznyCamper]

My DS11 was also born with a cleft lip/palate, we must be lucky because I don't recall anyone commenting like that after his lip was repaired(9wks old).
Just try not to let it get to you for now. It is likely after the next revision it will be much less noticable. My son is a patient of the Cleft lip/palate clinic at Duke and we go once a year for check ups with a wide variety of specialist including a child life specialst, she always asks if he is bothered by his scar or if people ask him about it, for us the answer has always been no but since she asks I would guess it happens often. Perhapse your Dr can give some advise or direct you to someone(child life specialst) who can help make sure your son never feels self conscious about the way God made him. If you need more help or just to talk PM me, I'll be headed for vacation tomorrow but should have internet acccess at some points of the trip.

 

[Tess'smom]

I am sorry that you and your family have to deal with this kind of ignorance. I know you said the girl was about 10 and young, but IMO a ten year old should know better, mine certainly would never say that. Curiosity is certainly normal but this "Ewww" stuff was hurtful. Just like you said, explaining that everyone is an individual and differences are normal and even good. I am sure that you will instill a healthy self-esteem in your children and your DS will be comfortable with himself. You sound like you are already doing just that!

 

[livndisney]

My daughter (6) found her "own" way of handling strangers questions/comments. She knows when people ask questions she has the choice of answering or not. She can say "God Made me that way" or "none of your business". I guess one day she got tired of the questions and when an older child (who should have known better) asked horrified "EEEW WHAT happened to your hand?" My daughter looked and her and said "EEEW what happened to your manners?"

 

[BeckyScott]

We've had two different "responses"...

First off, Justin has an older brother with a big mouth. So. If anyone says anything, or looks at him funny, his brother just says (and usually quite loudly) that Justin is autistic and he can't help it, he acts that way all the time. Coming from a 9-year-old, and he'll say that to adults, catches people off-guard enough that it always shuts them right up. We knew we would need to eventually "train" him to advocate for his brother, and he seems to be doing a bang-up job so far.

The other thing is, and I don't know how you could adapt this, but you can make "kiss-off" cards. (that's not exactly what we call them) I suppose it could work for a 10-year-old, 'cause likely she would have given it to her parents and then they could have handled her. But it's just a business-size card that explains what the deal is. They're handy to have w/ autism because if the kid is having a melt-down in public you get those snot-looks from people. So then you can just hand them the card, give them the evil eye, and go about your business. They usually also embarrass people enough they'll shut up.

I have gotten very good with the "evil eye" and most children recognize it even if you're not their mom. That's probably what I would have done in your situation, because that child was old enough to know better.

 

[*KeepMovingForward*]

Ohhhh, geeze. You know, we shouldn't NEED to say anything. Maybe I was wrong, but I always assumed that teaching tolerance and acceptance was a part of parenting.

We have always said someting like, "It's not nice to stare," etc. It doesn't always work, but at least it calls attention to it.

P.S. OP, you said "I guess it shouldn't bother me, but it does." That's not true--you have every right to be bothered. The world has put us in a tough spot, and rude people make it all the worse.

You are so right! I try to have the "say something nice or don't say anything at all" attitude too, but I am amazed at how many folks don't share that sentiment or teach it to their own kids. I still get blindsided by rude people and I'd like to say it doesn't bother me, but it totally does.

 

[Tigger&Aidan]

Thank you all for the support and advice! It really helps to know that others have been there, done that! I suppose I did give her the "evil eye", lol! It was more like the "I can't believe you just said that, aren't you old enough to know better" stare....

 

[HappyDznyCamper]

My daughter (6) found her "own" way of handling strangers questions/comments. She knows when people ask questions she has the choice of answering or not. She can say "God Made me that way" or "none of your business". I guess one day she got tired of the questions and when an older child (who should have known better) asked horrified "EEEW WHAT happened to your hand?" My daughter looked and her and said "EEEW what happened to your manners?"

Your daughter is very clever!! I LOVE that response!!!!

 

[rwrocksme]

Just wanted to tell you "grown ups" (I'll never g row up! PP!!)to keep instilling your wonderfully unique children with empowering messages -- about themselves and TO others.

My teenage marvel (what do you call them here? Precious princesses or pirates or whatever! SHE is the blogger -- not me!) has a myriad of problems. She defies a negative prognosis daily, is small, crooked and blue because of congenital heart and lung defects (and thanks to everyone on dis boards who kept her "company" last time she was in the hospital! you have NO idea how much that means to us...) but looks in the mirror and sees a goddess...and mirrors that to the rest of the world.

She ROCKS! And will change the world (and not just Walt's!) and your children will too!!!!!!!

The Queen "mother"

 

[bzzymom]

I will say this. My son is almost 10. He is very literal. He sees things, he makes comments on them. Not like "Ew", but he may ask a question like why does your lip look like that. Even though it is not said in a mean way, but I get embarressed by it.

I have been reading on these boards and then went to so other web sites. I think he may have Asberger's. We have a doctor's appointment this coming week and I am going to talk to his doctor about it.

 

[BeckyScott]

bzzymom, our kids do that too. They just honestly want to know. And there's a difference. When it happens, I will usually try to explain it to our kids. But it seems like, especially with our oldest, since he has a brother with a disability he doesn't pay too much attention to what other kids look like or how they act. He just takes everyone the way they are. Some days I think we are doing a pretty good job raising him. The youngest, the one with autism, is very curious that way, most of the time he is oblivious to that stuff- he went to a special needs preschool so he got totally used to other kids being different- but if he asks, I will jump in and explain it to him in a way that he'll understand.

I have also made quite a few "friends" that way-- if we encounter another family with a special needs child, you kinda get a bond right away. You have something in common, been down that road together, even if it's a completely different disability, any parent that has had to do IEP meetings you know they understand on a whole different level.

If we have a child or adult ask about Justin, I will explain autism (appropriate to age level). I see it sort of as a responsibility to teach others, so that the next time they encounter it, they'll understand. Usually with adults, they figure it out on their own, or I'll just tell them he is autistic with no further explanation. Since autism has been in the media so much lately, most adults have read or seen something about it before. If it's a kid, I'll explain it differently, but I have found that since alot of schools now have special needs kids fully mainstreamed, the kids are kinda used to "different" and don't think so much about it. I hope that continues as they grow up, the world would be a better place.

However. Genuine questions are completely different from the "snoot look". I have no tolerance for that at all, and am more than happy to snap. It's the same thing as if someone questions my parenting skill, oh that's opening up a can, don't even go there. I would say the biggest thing Justin has taught me is how to stand up for myself, and for him and for our family, I never thought I would have such a big mouth.

 

[livndisney]

I'm sorry, I think I have misunderstood the last few posts. Are you saying you think it is ok for a child or adult to approach someone and ask them why they look different?

 

[Notatourist]

I'm one of the first people to ask if there's anything I can do to help. I have worked with kids in the past so if a kid is having a meltdown, I might go up and say hello to the kid. It works for a few seconds and calms the situation down enough where the parent, who is giving me the look halfway between "Who the heck are you?" and "thanks" tends to work.

And I like working with Autistic kids. One common thing is that they like to spin...

As for the original poster, I once met a 39 inch teen who had girls his age asking if he was real. His reply...

"Yes, and my name is Josh, what's yours..."

 

[rwrocksme]

Just wanted to tell you "grown ups" (I'll never g row up! PP!!)to keep instilling your wonderfully unique children with empowering messages -- about themselves and TO others.

My teenage marvel (what do you call them here? Precious princesses or pirates or whatever! SHE is the blogger -- not me!) has a myriad of problems. She defies a negative prognosis daily, is small, crooked and blue because of congenital heart and lung defects (and thanks to everyone on dis boards who kept her "company" last time she was in the hospital! you have NO idea how much that means to us...) but looks in the mirror and sees a goddess...and mirrors that to the rest of the world.

She ROCKS! And will change the world (and not just Walt's!) and your children will too!!!!!!!

The Queen "mother"

MOOOOOM!!!!

 

[BeckyScott]

livndisney, I don't mean that "it is ok for a child or adult to approach someone and ask them why they look different", that's a bit more extreme.

This is what we've experienced, keeping in mind that autism isn't a visible thing, and it takes at least 30 seconds of being in close proximity to Justin for it to be noticed. Well, sometimes it's pretty obvious. Depends on the situation. Usually with adults, if he's interacting with them, there is this moment where they realize that something is different. At first they don't notice. Takes a sec. They usually get kind of an odd look on their face, usually I see it, when the thought enters their mind. Sometimes I will say something and sometimes I won't, depends on how I'm feeling that day, and what situation we're in. If it is a situation where he'll need special accomodations of some sort, or we are in an educational setting, I'll bring it up right away.

It's just my personal opinion on this, everyone is different. I mean like swim lessons, I tell the instructor straight-up right away, so she isn't there for a half hour trying to figure out what's going on. Stuff like that. But I certainly don't announce it to every waitress when we're out eating. When we went to Branson last weekend, there was only one time that I said anything to anyone about Justin, and that was when I got our "GAC" at Silver Dollar City. Actually, I didn't even tell her, I just asked about non-visible disabilities, and he was flapping and singing to himself, so she figured it out on her own.

I wouldn't say it's appropriate for a child to just walk up to another one and say "what happened to your face?" but I think you have to figure out the intent. My kids would ask that if the kid had a stick-on tattoo or if they had popsicle stains or whatever, they don't see a difference and view it as just a question-- there isn't any maliciousness involved, just curiosity-- the same matter-of-fact approach that they'd use to tell a kid they liked his t-shirt or what they have on their GameBoy. I know they've been taught to look beyond, and they've also been taught that if they don't understand something that they can ask questions and we'll do our best to answer them. We regularly go to a children's hospital for various appointments and I've had to field questions about why kids didn't have hair or why they had some machine attached to them. If they ask the child directly, it's out of curiosity and usually long after they've already been interacting with the other child, I have found that most parents and children know the difference and are willing to explain. After a very basic explanation, they're kinda like "okay, whatever" and go back to interacting just like before.

I think it's much better for a child to ask, honestly, if they have sincere questions, than it is for a child to be taught "not to talk about it" or to whack them upside the head if they look at someone.

 

[Tigger&Aidan]

However. Genuine questions are completely different from the "snoot look". I have no tolerance for that at all, and am more than happy to snap.

I totally agree. I am more than happy to answer questions about (sometimes maybe too much so!) Aidan's cleft or some of less visible scars he has (from preemie related illness). I guess I was just caught off guard by her and wasn't ready. I think it wasn't even so much what she said, just her tone...

Eventhough he's only 2 1/2, none of this seems to slow him down! I truly think that he'll be one of those kids who will be more compassionate because of what he's been thru.