Tuesday, February 26, 2008

"Paige, Stop Staring!!"

As we entered into the restaurant tonight we were greeted by an adorable teen aged girl. Paige (9 years old) loves teenagers so I didn't think anything of it when I noticed her staring at the hostess. As the hostess turned around I realized why Paige's eyes were fixated on her... she was missing an arm.

I threw Paige my best "mom glare" but I couldn't break the stare.

I tapped her on the back. That didn't work either.

As we sat down I was crossing my fingers that Paige could use some restraint and at least wait until the hostess walked away before blurting out, "Mom did you see her? She's missing an arm!" No such luck.

She immediately asked to go to the bathroom, which I was happy to allow so it would give me time to talk to her about her staring. But, as soon as we got in the bathroom the questioning started...

"Mom, what happened to her?"

"Mom, did she have a freak accident or was she born that way?"

"Mom, can preemies be born without an arm"

As soon as she took a breath, I was able to interrupt her. I reminded her that it isn't kind to stare. "But Mom it's fascinating. Did you see that her other arm is really big?"

I reminded her how much she hates it when people stare at her. I talked about times when she is in a wheelchair or when she has visible tubes (PH probes) and kids have approached her. She has been mortified.

She tried telling me that it was her OCD and that her thoughts were telling her to stare. I explained to her that it was merely human nature and her extreme curiosity.

I never know what to say when she stares. I never know what to say when she sees someone in a wheelchair and yells, "I wonder why their legs don't work?"

To the parents who have kids with various abilities... what would you like parents to say to their children? Do you want to be approached with their questions? What do you wish parents/children would not say?

12 comments:

Nancy said...

Like Paige, Caitlyn is typically interested/curious about people when she notices "differences" about them. And this ranges from a person with disabilities to a person with tattoos. Basically anything that it outside of her norm.

Here's a story:
We were all at a restaurant for dinner and waiting to be seated. There was a lady/young woman waiting as well that was in a power wheelchair and also had a trach with oxygen hooked up to it. Caitlyn immediately asked me why she was in a wheelchair and what was "hooked up to her neck." I put it very simply that she was probably in the chair because her legs didn't work like Caitlyn's and that she had the tube at her throat because she probably had difficulty breathing. I then told her that if she wanted a further explanation that we could go up to the woman and ask her.

To my great surprise, that is exactly what she wanted to do! And so it's what we did. We went up to the lady, introduced ourselves and I asked her if she would mind if Caitlyn asked her a couple of questions. She immediately obliged, and answered every question Caitlyn had.

I noticed right afterward that Caitlyn no longer stared. Her curiosity was satisfied and she had accurate information. The lady later came up to me and thanked me for having Caitlyn come up and ask her the questions rather than staring.

Obviously you have to gauge the person and the situation. But I think that the person being stared at would rather just have an open and honest conversation about it. At least that has been my experience.

Also, you have taught Paige to advocate for herself in situations regarding her health and abilities. So it would seem to me that the same would be true of her approaching others. (again, after gauging the situation)

The Preemie Experiment said...

I asked about this once on a group that I am on for parents of kids with disabilities. Many of the parents said that they did not like when children came up and asked questions. It could have been because their children are not old enough to be able to answer though. Maybe adults with various abilities don't mind if kids come up to them. hmmmm

Paige has had to have a few 24 hour PH probes. After having her last one placed (she was 7) we were heading out of the children's hospital when a boy came up to her and asked, "What is wrong with you?" Paige immediately turned around, with a ton of attitude, and said, "Nothing!" We got in the car and she cried.

I wish there was an easy answer!

Thanks for the thoughts Nancy.

Anonymous said...

Stacy,
I remember shopping with my son, who at the time was wearing an eye patch. Another kid around his same age at the time (5) approached him and started asking all kinds of questions, such as; are you okay, what’s wrong with your eye, does it hurt, etc. My son immediately turned to me wanting the inquisition to stop. I simply said that he was fine and tried to get away from the kid, as it was obviously upsetting my son. The other kid’s mother tracked us down with her son and started questioning us because her son was just sensitive to others and needed to know. I reiterated that my son’s eye was fine and tried to leave it at that. That mom was so not gauging the situation or she would have seen how upsetting it was to my son. I really wanted to say that it’s none of your business but I politely excused ourselves, citing an urgency for the restroom. It is a delicate situation because when my son was an infant on oxygen, I didn’t mind the questions. I preferred questions to stares but when my son’s feelings are involved, it’s a different story. So, I’m with Nancy, gauge the situation.

-Tammy-

Anonymous said...

I think it is brave to approach someone who is "different" and ask them to explain . . . It is both honest and brave . . . And it can show caring--or maybe only curiosity.

I think anyone stares because they have just seen someone who is different and they are trying to figure out the pattern (blindness, spastic extremeties, boisterous behaviors, etc,) that is different. They are trying to "place" the difference, perhaps give it a name, if only in their own mind. And the mind of a child probably doesn't have many names/labels, not having had enough life experience.

I think this is natural and admirable for a child--I'll call it budding problem-solving.

And perhaps, layered on top, is threat. Paige's questions make me wonder if she isn't threatened by someone in a chair--she asks if it is preemie-related. Will it happen to me? Will it get worse so that I will ALWAYS be in a wheelchair, not just sometimes? Or whatever a child's imagination suggests--it doesn't have to make sense. Threats are not that rational, after all.

Perhaps the following solution is overly simple. The solution can just be "Here are rules of courtesy: you don't stare; you may TRY to approach the child/mother, and ask for an explanation. Your questions won't always be well-received. You will see, by the looks on a person's face, if they are uncomfortable with you asking."

Some people will be okay about being asked. They regard your asking as a form of caring.

If we don't ask directly, then we can only guess about what the disability may be. That is not as satisfying as getting an answer directly from the person involved.

And we must keep in mind that guessing is the same as making assumptions--which is often NOT a good way to go about things. (Maybe the notion of "assumptions" is too mature of a concept for Paige--I don't know).

Finally, ask Paige what if someone at the restaurant kept staring at her hair or her clothing? Or if someone stole glances, but then whispered and giggled and pointed at your family? Your family did nothing to attract attention--you were well-behaved, you don't have on a purple top with a red pair of pants (that might attract some attention). You don't have your head shaved . . . This unwanted attention would probably make you uncomfortable, and you would regard it as rude. If Paige can imagine this, she can imagine how a person in a chair, or whose voice is too loud, or who drools would feel. She can choose to NOT make them feel uncomfortable, now that she knows these subtler rules of courtesy.

Chris and Vic

~Denise~ said...

Thank you for asking this. My 4yo is always staring and asking questions when she sees someone who "looks" different.

Thank you to those answering

Nancy said...

Because of reactions like Tammy's, that's why I think the parent of the child wanting to ask questions really needs to assess the situation prior to approaching the person, be it an adult or a child. And you can absolutely tell by a person's body language upon approach if they are going to be forthcoming with information/answers or not.

I also think it is absolutely imperative to teach your child how to approach someone in a situation like this if they are going to approach a person. Before we approached the lady I mentioned, I asked her what she was going to say. She wasn't exactly sure, if left to her own resources, she probably would have just walked up and said "what's wrong with you." But I made sure to tell her that she needed to ask the lady if she could ask a question about her legs or her wheelchair. Once we had that covered, I figured that initial question would give the lady a "heads up" on where the conversation would be headed.

Fortunately, Caitlyn has been around people with disabilities since she was an infant. Since she was little I have been taking her to work with me and discussing with her what exactly my job is. So she is aware that there are people that live on this planet that don't have some of the abilities that she has. I think that has made her more comfortable in these situations which is why she is bold enough to just come out and ask for an explanation.

Brooke said...

Stacy... i work with adults with disabilities, and here's what i see, from the other end... The kid's staring, obviously very curious. Mom/Dad hustles them away, or says through clenched teeth, "Stop staring!" before any questions get asked or answered, and my client and i are left feeling very uncomfortable, because not only is the child most likely going to get a 'talking to', but there is also then the possibility of a bad connotation with people who are different.

Whenever one of my clients is approached about their wheelchair, she simply tells the child that she badly broke her legs so now they don't work. Which, to be honest, is a total lie, but makes a great deal more sense to a 5 yo than saying that she has a degenerative neurological disorder that will eventually kill her. I've asked her about it, and she says that she appreciates when the children do ask her instead of just looking and wanting to ask.

If that helps any...

Emily said...

When Dakota had her trach and we were out and about with the ventilator, suction machine, oxygen, etc, we'd get a ton of stares and little kids asking what on earth was wrong with her.

I can understand the curiosity and really don't mind the comments from the little kids. What was more disconcerting was the way some parents responded to the children. I personally always preferred that parents give the child an answer right then or have them ask me what was going on. I didn't like it when parents ignored their kids' questions or walked away as if it was somehow more polite for them to be out of ear shot. If I heard a kid asking questions I usually told them right then in a kid-friendly way what was going on with her.

future of hope said...

My son would 100 times over rather a child approach him with questions than simply sit there and stare at him. From a parents perspective, I prefer it as well. He drives a large power wheelchair - he is never going to "blend in" anywhere. Oftentimes questions of why? or what's wrong? or what happened? are a good way to break the ice. By the end of the conversation, most of the kids are talking TO him, instead of ABOUT him.

Adults, on the other hand, can be a real problem. The ones that shush their kids, fuss at them for staring, and then hurry them away to the other side of the room are the ones that are teaching their kids, that yes, there is something wrong and shameful about a disability. Just as bad are the adults that stare, and when caught say " What's wrong with him?" From a child that can be a innocent question, they don't know any better way to phrase it. From an adult they are cutting words. Neither my son or I have any problem with adults that have questions, they just need to approach them in the same manner that they would the kid in the baseball jersey with a cast on his arm - open and friendly.

Billie said...

I second (or third) what Emily and Future of Hope have said. I REALLY hate when kids ask their parents about Eden's walker, and they are shushed, like it is something horrible or bad that shouldn't be talked about. I really prefer a simple and friendly explanation, like "she uses that to help her walk."

I do admit that it sucks when certain kids just won't give it up. They keep asking more questions "why can't she walk" or "what's wrong with her." Several times she has had a gaggle of kids all standing in a semi-circle staring at her, or certain kids who get right in her face asking a million questions.

Also, in certain situations I don't mind answering questions, but at other times it just gets out of hand and we just want to be left alone.

I wish there was a clear cut answer for how to deal with this situation, but I guess it's just something that you have to be sensitive to and gauge the situation... In most cases, if you are friendly and kind, you'll probably do the right thing.

Eden makes great silly faces, so I think I may just teach her to make one at the kids staring:) Or maybe I should teach her some good comebacks, like "all this and brains too!"

The Preemie Experiment said...

billie wrote:"I second (or third) what Emily and Future of Hope have said. I REALLY hate when kids ask their parents about Eden's walker, and they are shushed, like it is something horrible or bad that shouldn't be talked about."

I also agree. When the incident happened I did not hush Paige or put a negative tone to my voice. But, what I did do was try to give her a mom stare in order to prevent her from saying something hurtful (not on purpose). The reason for this is because Paige can be innapropriate even for a child, even though she would not mean to be.

I know Paige and I know what she is capable of saying. That's what scared me, which is why I tried to stop her.

Future of Hope wrote: "Just as bad are the adults that stare, and when caught say " What's wrong with him?"

I completely agree! In my opinion, it has always been the questions from adults that have upset Paige the most.

Thank you everyone for offering suggestions!

_ said...

This is a hard one...
I have a son born premature at 29w and suffers from mild CP and a load of other gross and fine motor delays and including Sensory Processing Disorder.

Anyway. We had a situation where we were at a childrens birthday party and my son had to wear AFO braces on his legs to walk. There was a little girl that HAD to ask him what they were and if they hurt and why why why etc. My son was only 3 at the time and basically just went along with the questions like, no they dont hurt, I dont know why, I just have to wear them etc! My husband explained to her that he has a hard time walking and that wearing them helps him to walk just like how people who have a hard time seeing wear glasses or if someone can't reach something they use a stool. I think it was the best way to translate to another curious toddler.
Now that he is almost 5, he realizes that he is different and Hates when other kids comment on how he is physcially slower etc. He really tries hard to tell people that he is just like them only slower and that he cant help it.

NOW, I really wish that other Adults dont assume that he has mental delays since he has CP. He is a very smart little boy and I hate when people talk about him when he is right there next to me and act like he cant understand. I would much rather a parent ask HIM the questions because he certainly CAN answer them now. He knows he is different and it doesnt bother him, so I dont understand why it should bother other people. I dont mind answering questions instead of people assuming they know why he wears braces, or why he drags his leg or why he walks on his toes and runs with his arms in the air. Or why he looks at you cross eyed. They just assume looking at him that he has a mental disability, when in reality it is physical and sensory!