[KatWrangler]

So we just got back from vacation to Orlando. My husband got his first real experience with people that stare at Gabrielle.

One night right before we went to sleep he asked me if I noticed people looking at Gabrielle. I said, yes (this is not new to me). Thats all he asked. Well on the drive home we talked about it again. He broke down and cried as he explained how it hurt to see people stare at her, then comment (he can see them from a distance) say "What a beautiful little girl". Then see her braces.

Then they mouth "Oh, she has braces...what a shame".

How do I help him with this? He just never realized people do this. In the winter she has long pants on for the most part. But with it getting warmer and she is in dresses and shorts, people see her braces.

Suggestions? He is really upset about this.

 

[lactationlady]

I think part of it is realizing that the problem is with those people, not with your child.

The other part is realizing that you cannot control other peoples reactions, but you can control your reactions to those people. I have seen so many parents of sn kids that look defeated, depressed, sad or like they are trying to hide with their child. I have determined that I am not going to be one of those people. We get stared at quite a bit when we go out, as most often now, Rebekah is in a wheel chair. I try my best to always smile and show how happy we are with her and how proud we are. When people stare, I meet their gaze and smile. Most often, they smile back. I try to focus on those people that are truly kind and helpful, and there are quite a few of them out there. I think that Rebekah will begin to imitate whatever behavior I show, and I want her to grow up being proud of who she is.

 

[jondee0]

Melanie put it really well---I have determined that I won't let other people's reactions and feelings dictate how I react and feel. And hopefully, this attitude is rubbing off on Michaela, who is very aware of other people's stares. I love my daughter, I am very proud of her, and our family needs no pity. So when I see people STARE, I make a point of looking at them until I catch their eye, and then smiling. And Michaela is considering getting a shirt that says "I don't mind you staring, as long as you smile, too", lol.

I really want people to look past Michaela's wheels (and in the past, she had long braces, crutches, the works) and see her. I wonder if maybe that's what's bothering your dh, that he sees people looking at his little girl as if she were an object of unusual interest, rather than the wonderful, complex, delightful person that she is. You can't change people, but you can help them see your kid as you do, and I think that's what you do when you convey that attitude of pride, love, and "normalcy".

Joni and kids, incl. Michaela

: 12, funky spinal cord, and Gabe

10, Down syn. and autism

 

[MGBoutique]

What great replies above. I've gotten so I don't even notice most people looking, anymore. If there is someone who's just blatantly staring at my dd, I wait until they look up and catch my eye, then I smile at them to let them know that it's okay to look, BUT I know they're looking and please don't stare her down...usually after that they stop staring quite so much.

We went out to eat a couple of weeks ago with my MIL for the first time in a LONG time. Later she commented how stressful it was, referring to dealing with a cranky toddler and my dd making her loud autism noises and doing other "unsociable" things. I was so surprised, it didn't seem that way to me at all because I was just enjoying being with my family. Guess we need to go out with her more often to get her used to it.

I totally agree with the ladies above...their advice is great.

 

[pixiekisses]

Quote:

Originally Posted by lactationlady I think part of it is realizing that the problem is with those people, not with your child. The other part is realizing that you cannot control other peoples reactions, but you can control your reactions to those people. I have seen so many parents of sn kids that look defeated, depressed, sad or like they are trying to hide with their child. I have determined that I am not going to be one of those people. We get stared at quite a bit when we go out, as most often now, Rebekah is in a wheel chair. I try my best to always smile and show how happy we are with her and how proud we are. When people stare, I meet their gaze and smile. Most often, they smile back. I try to focus on those people that are truly kind and helpful, and there are quite a few of them out there. I think that Rebekah will begin to imitate whatever behavior I show, and I want her to grow up being proud of who she is.

Yeah, this.
That's what we do and how we think.
(Lots of good replies here though.)

We get stared at all the time, not only for having a couple of SN kids, but also for having many kids. Our little miss cotton ball button is often very visibly SN with oxygen in her nose and the tank on her chair or a little one in a backpack, gtube when it's hooked up, she has seizures in public, she needs meds. in public, the chair etc.

 

[MotherWhimsey]

oh man, we get the stares. We get the comments. We get it all. We jsut ignore it all for the most part. Linden's young enough that he just thinks everyone is being social, not just staring at him. I'm sure there will come a time when he notices it all and hears the comments, but I figure it's something that's going to happen so he needs to learn how to deal with it. Sometimes he'll hear another kid ask their mom about "what's that in his nose?" and he'll tell them about his oxygen. So we just let him. But as far as it affexcting us as parents, we don't mind it. It does get old when people act like we can't hear what they're saying or they think they're the first to say something, or they ask if he just has asthma or something. One hell of a case of asthma huh? But it doesn't make me feel weird when they stare because he does have different equipment and people are naturally going to be curious.

 

[preemiemamarach]

Quote:

Originally Posted by MotherWhimsey oh man, we get the stares. We get the comments. We get it all. We jsut ignore it all for the most part. Linden's young enough that he just thinks everyone is being social, not just staring at him. I'm sure there will come a time when he notices it all and hears the comments, but I figure it's something that's going to happen so he needs to learn how to deal with it. Sometimes he'll hear another kid ask their mom about "what's that in his nose?" and he'll tell them about his oxygen. So we just let him. But as far as it affexcting us as parents, we don't mind it. It does get old when people act like we can't hear what they're saying or they think they're the first to say something, or they ask if he just has asthma or something. One hell of a case of asthma huh? But it doesn't make me feel weird when they stare because he does have different equipment and people are naturally going to be curious.

I *love* that he tells people about his oxygen!

 

[pixiekisses]

Oh yeah, and the comments, and people asking what's wrong, and the whispering and/or pointing.
The mean stuff I totally ignore, or blow up on.

But you know, sometimes ppl can be really mean, I'm not going to always just leave that be.

 

[3-StarSystem]

I have come to the conclusion that most people do not mean to be hurtful, they are simply ignorant. Some people truly are not aware of the fact that kids like ours exist anywhere but on T.V. or in the hospital and it IS a novelty to them.

When people ask *nicely* we have NO issues whatsoever in explaining what we have to do so that our son has as much of a normal life as possible. We treat him normally and people seem to feed off of us and our reactions more than anything else. They may look askance at him but he invariably notices them looking and reacts with the biggest smile. He always gets one in return too.

:

That's not to say that we haven't received any strange or hurtful comments. We've had people avoid us and literally point to us and say to their kids to avoid my son because he must be wearing a mask due to the fact that he's contagious.

Honestly, in those cases I'd rather let them live their sheltered little lives where childhood cancer or other special needs don't factor into any part of their existence. I tell myself that they're likely not the sort of people that would handle any of the same challenges very well if it happened to them. Isn't it great that we were the ones blessed with having special kids because our kids are FANTABULOUS and they have the love and support to let them be the best that they can be without feeling that their journey is any sort of a burden. It's everyone else that's missing out and they'll never know quite what they're missing and for that they have my condolences more than anything else.

 

[pixiekisses]

Quote:

Originally Posted by 3-StarSystem That's not to say that we haven't received any strange or hurtful comments. We've had people avoid us and literally point to us and say to their kids to avoid my son because he must be wearing a mask due to the fact that he's contagious.

Oh, that reminds me. A friend of mine had kidney failure and got a kidney transplant, and after that she needed to wear a mask and she got tired of all the looks of horror, comments etc. So she started writing on her mask with colourful markers, something like: "Smile! I'm not contagious, you are." And sometimes drawing a sun or something on it too.
So, when our little miss cotton ball button has needed to wear a mask in public, we've done that, and it works wonders. People smile when they see it, and some even asks nicely what's wrong etc. People are so much nicer and kinder about it when we do that.

(I'm not saying it should be like that, because people shouldn't be mean, but hey, they are. So we deal in the best way right.)

 

[PatchChild]

My DS gets looks all the time too for his hearing aids. Our solution? Get him a bright blue pair so they are even more noticeable and fun.

Seriously, it helped. Kids were curious before but with tan colored aids, they looked so serious. Now that we have fun kid colors, they don't seem to intimidate people nearly as much.

If I notice kids looking or being really curious, I'll approach them. "Are you checking out his blue ears? They're hearing aids and they help him hear better."

 

[PatchChild]

...

 

[bandgeek]

People are just curious but think it's rude to ask. I'd prefer they just ask. They don't usually stare *openly* but they do weird side-glances. I know they are trying not to be obvious.

So if I catch them doing it I just engage them in conversation. And they usually feel comfortable enough to ask then. I'd much rather people be educated about our special needs kids than just thing "Oh the poor pitiful kid" you know?

 

[ShadowLark]

Quote:

Originally Posted by 3-StarSystem I have come to the conclusion that most people do not mean to be hurtful, they are simply ignorant. Some people truly are not aware of the fact that kids like ours exist anywhere but on T.V. or in the hospital and it IS a novelty to them. When people ask *nicely* we have NO issues whatsoever in explaining what we have to do so that our son has as much of a normal life as possible. We treat him normally and people seem to feed off of us and our reactions more than anything else. They may look askance at him but he invariably notices them looking and reacts with the biggest smile. He always gets one in return too. : That's not to say that we haven't received any strange or hurtful comments. We've had people avoid us and literally point to us and say to their kids to avoid my son because he must be wearing a mask due to the fact that he's contagious. Honestly, in those cases I'd rather let them live their sheltered little lives where childhood cancer or other special needs don't factor into any part of their existence. I tell myself that they're likely not the sort of people that would handle any of the same challenges very well if it happened to them. Isn't it great that we were the ones blessed with having special kids because our kids are FANTABULOUS and they have the love and support to let them be the best that they can be without feeling that their journey is any sort of a burden. It's everyone else that's missing out and they'll never know quite what they're missing and for that they have my condolences more than anything else.

OMG - HE'S contagious? Yeah right!
It's like when we went to a garage sale last summer and the lady's son was on oxygen. I asked why, turns out he has CF. So I told Hypatia that we had to stay away so that we didn't give him our germs (he was 3 years old and she was a germy baby) but that we could play with him from a distance. (Kind of. Mostly I just explained how the oxygen helped him breathe and that we didn't want to give him our germs.)
Yeah, I know - she's too young to understand. But honestly, it's good practice. I'm going to have a whole brood of kids and for the next ten years or so, that will include at least one toddler. Toddlers get sick all the time, so it's a good lecture to give. A kid with CF doesn't need a cold from some toddler with dirty hands, kwim?

 

[frontierpsych]

We get it about DS's eczema (he didn't have it on his face yet in the pic in my sig, but he does now, it's pretty much all over) and people say "poor thing!" or "Oh, he looks SO miserable!" all the time. I do worry about it as he gets older if it's still apparent because I wonder how those types of comments will affect him, kwim?

 

[3-StarSystem]

Quote:

Originally Posted by bandgeek I'd much rather people be educated about our special needs kids than just thing "Oh the poor pitiful kid" you know?

Oh I am SO with you there! I can NOT STAND people saying that they're sorry or perceiving our family with pity. We are not "sorry" or pitiable (We're actually really, really lucky to have had some amazing things come out of my son's diagnosis.) and I really don't appreciate other people bringing that into our lives.

Sorry is not a feeling that is allowed in this house! My worst fear is that my son will pick up all of the "I'm sorry's." and start feeling sorry for himself or use any of his challenges as a crutch. That is the ONLY time that I'd feel sorry!

When people say they're sorry I've been known to say "Don't be, we're not! He's as happy as could be!"

The masks my son uses have Disney Characters printed all over them (Yech!) but I have to say that it's definitely crossed some barriers especially when it comes to other kids. They often think the masks are COOL.

The kids are never the problem. They'll come right up and ask what's up and accept what they hear and continue playing together with my kids. Sadly it's the adults that have the issues. One of the benefits of the challenges we've faced is that we've been given the gift of seeing things from a much more child-like perspective. We get so wrapped up in the little things that mean so much.

 

[supervee]

Yeah, we're getting more of this as DD is out more on playgrounds and starting to get more bald and skinny.

I can remember one time when we were in clinic and I heard a mom tell the registration person that she was there for a research study, and she was smiling at us like she was going to say hi, and about that time DD took off her hat. The lady looked like she was going to throw up slash start crying, poor thing! Needless to say, she did not say hi.

But, really, I don't care. DD is pretty oblivious, thank goodness. I agree with the "if you wear hearing aids, pick bright blue ones." DD loves to decorate her IV pole when she is in the hospital. She wants me to put bows in her remaining strands of hair. I think she's beautiful. She knows she's beautiful. A hex on anyone who thinks otherwise!

 

[pixiekisses]

Quote:

Originally Posted by 3-StarSystem Oh I am SO with you there! I can NOT STAND people saying that they're sorry or perceiving our family with pity.

Yeah, I can't stand the pity either, I tell people so too.

Quote:

Originally Posted by 3-StarSystem The kids are never the problem. They'll come right up and ask what's up and accept what they hear and continue playing together with my kids. Sadly it's the adults that have the issues. One of the benefits of the challenges we've faced is that we've been given the gift of seeing things from a much more child-like perspective. We get so wrapped up in the little things that mean so much.

Indeed.

 

[Theoretica]

Quote:

Originally Posted by PatchChild My DS gets looks all the time too for his hearing aids. Our solution? Get him a bright blue pair so they are even more noticeable and fun. Seriously, it helped. Kids were curious before but with tan colored aids, they looked so serious. Now that we have fun kid colors, they don't seem to intimidate people nearly as much. If I notice kids looking or being really curious, I'll approach them. "Are you checking out his blue ears? They're hearing aids and they help him hear better."

OT but my DH is soooo jealous at the cool BTEs that are out there now!!! And there are dyed ear molds too!!! He's joked about getting some, he spent his whole childhood hating those brown things!!

 

[LoveChild421]

Quote:

Originally Posted by lactationlady I think part of it is realizing that the problem is with those people, not with your child. The other part is realizing that you cannot control other peoples reactions, but you can control your reactions to those people.

These have been important realizations for me as well.

Ds1 has autism and doesn't "look" like he has special needs so often people start saying really nasty things when he has a meltdown in public. I will never forget the time when we were in a line at a buffet restaurant with my parents and Grey was up ahead of me with his grandpa. He was being loud and making noises. A 20-something girl behind me said very loudly "shut up you little brat!" I was having a really hard time dealing with all the emotions that come with having a newly diagnosed child and it took everything in my power to not punch her in the face, jump on her, and take out every bit of anger, frustration, and pain that I was going through. I held myself back only because I didn't want my son to see me that way. I now just look at those kind of people who have to make all of their snide comments and rude stares as pathetic.

I imagine it would be different when your child has an obvious special need and people look at you more with pity than with that "what's your problem can't you control that kid?" look. That would be hard too. But ultimately, you just have to realize it doesn't matter one bit what anyone thinks- your child is perfect and it is a shame people see it any other way.