Catching people staring at your child with special needs comes with the territory of special needs parenting. I do it all the time, watch people watching Max. It still gets to me.
There's the curious stare, often from children and sometimes from adults, of "What's up with him?"
There's the perturbed stare, typically from adults, of "Oh, something's up with him." I can pretty much tell what they're thinking, because I have DSP (Disability Sensory Perception).
And sometimes, it's just a stare. A blatant stare.
I can't ignore it.
If we're in a park, at a party or in some other casual setting with other parents around, I'll usually just say, "Hi! I'm Ellen and this is Max." And that can break the trance and start a conversation.
If it's obnoxious gawking by a total stranger, I've been known to say "You're staring at my child. Is there something wrong?" Usually, that leaves the person flustered. If I'm in a certain mood I'll ask, "I see you staring, would you like his autograph?" Which flusters people even more.
I got an email about staring the other day from a woman whose nephew, 15, has autism. As she writes, "He would rather sit in the kiddie section of the pool with the waterfalls and other kid splash stuff than go on the big-boy slides. Most people find it unsettling.... If they aren't staring, they're frowning."
While the boy's mother tends to ignore the stares, this woman sometimes felt compelled to say something. She shared these replies:
"Oh, do you know him? You're looking at him so I thought perhaps you know him?"
"Hi, would you like to be introduced to my nephew?"
"My nephew is autistic, but he's not rude"
"Do you realize that people who have special needs also have feelings? Do you like being stared at?"
One of my favorite ways I've ever heard of dealing comes from blog friend Lana, over at Along Came The Bird. As she once wrote in a guest post she did, "My husband stares right back at them, with this almost maniacal smile on his face. Think the movie "The Shining." Most people get very uncomfortable and look away. And, really, if anyone complains about it, what are they going to say, "That man just keeps smiling at me!"
So, what do you do?
Photo: Flicker/kayen.c
Maybe they're transfixed by beauty.
ReplyDeleteI ignore them most of the time - or stare right back at them.
ReplyDeleteI also think they might be transfixed by the cuteness that is Max! that goes for when they stare at T-man too - he IS quite a looker.
thanks Ellen!
Kristen
My daughter has mild CP, and rather than stares, we get a lot of comments like "has she been drinking this morning?". People seem to think her gait is adorable. I have to say, if I saw a big 15 year old boy in the kiddie side of the pool near my 4- and 2- year olds, I would give him the stink eye too. Teenagers near my kids scare me, because they often act wild and use language that isn't kid friendly.
ReplyDeleteNot all of them.
DeleteMy Etsy store (http://tiarabuttons.etsy.com) is closed for the summer, so I can't FULLY shamelessly promote this (hehe) but I made/sell a pinback button that says "My kid has CP - You can stop freaking staring" (as well as one that says the same thing with slightly stronger language, ahem). My kid has a massive freakout if someone stares at her, so I try to tell people that - and sometimes I also just stare back. I'm hoping when she gets her AAC device I'll be able to give *her* the power to say "Stop looking at me!!!!!"
ReplyDeletePlease help me acknowledge your child properly! I have very little experience with people with visible disabilities - here in Greece most families treat them like dark secrets that have to be hidden away - and when I encounter one, I really don't know what to do. My mother taught me that it's rude to stare, but my eyes are drawn toward them, as they would be to anything new and unusual, so I end up doing this visual "skip" where I just jump "over" them visually, but I feel that that is just as rude. How can I look at your son frankly, acknowledge his existence (because my "skip" is almost like denying it), but at the same time not stare? Maybe this should come naturally, but to me it doesn't, and I wish it did.
ReplyDeleteSay hi or wave.
DeleteHonestly, most of the time I don't even notice. My kids' behaviors are such that I don't usually even get a chance to check out the public. It takes around 95%of my focus to keep them from running off or knocking things over or pinching people. I'm sure we attract a lot of attention, but I just don't have the time or energy to even care.
ReplyDeleteThis makes me think of a blog post I'd like to write on basically the same subject......
Anonymous 8:27's comment makes me fear the future. My 8 year old autistic son is sweet & adorable, though we get a few stares because his nonverbal vocalization is sometimes a bit loud. I am aware that when he's 15 people won't find him so adorable, and that saddens me.
ReplyDeleteIn my opinion it is just as rude to come back with smart ass comments. Most people aren't even aware they are staring and I honestly believe, they aren't purposely trying to be rude and hurtful but as advocates for our kids with SN, we just make ourselves look like hypersensitive jerks to have snarky comebacks. If someone is staring at my daughter, I smile at them, a natural, "hello" smile which usually prompts a very friendly smile in return if not a conversation. If that doesn't work, I just ignore them. It's their problem, not mine. And to answer the above question from "anonymous", just treat our kids like you would anyone else's. Say "hi". :)
ReplyDeleteMy issue is a little different. My daughter's disabilities are not visible. She is medically fragile, with some delays, so what strangers notice is that she is tiny. They see her talking and behaving like the 3-year-old that she is, though she looks like an average 18-month-old, easy. So they think she is a genius. People approach, full of wonder. I usually just smile and say "she's older than she looks." I understand people are curious and want to know how old she is, but then their attitude changes to horror. How can a 3-year-old be so small? I can just list her diagnoses, I suppose, but is this something I need to get into in the playground?
ReplyDeleteHi Ellen, we are currently on holiday in Thailand and ALL of us get stares! Moreso the baby and the blOnde daughter though! At home Cooper does the Ben Stiller/ happy Gilmore throat slash if people stare or say something stupid! He then usually utters something really inappropriate so lucky his speech is very unclear to most!
ReplyDeleteI usually catch their gaze and put a huge smile on my face. That usually snaps them back to reality and makes them realize that we don't feel sorry for ourselves, so they certainly shouldn't either.
ReplyDeleteThough sometimes, I will admit, I have had enough of the staring and want to ask them why they're staring and if something is wrong... with THEM!
Amanda
www.ncslaviks.blogspot.com
haha! I think the manical smile is a great response to the staring. My policy is typically to just go about our business, letting the staring stranger see how our family enjoys being together, but both my husband and I have definitely been known to ask if there's something wrong - generally the staring perpetrator gets flustered.
ReplyDeleteHeather, I'd like to think people are transfixed by how cute Max is, but trust me, it's not that look.
ReplyDeleteAnon 8:27, we sometimes got similar looks about Max's composure when he was young—e.g., "Wow, he's sleepy!"
Marla, I LOVE that button
smilinjo, I am all for educating other people about CP and helping them better appreciate children with special needs. I try. Hard. But if you are GLARING at my son, blatantly, then I am going to get right back in your face. I am not Mother Teresa.
Anon 8:38, thanks for the asking the question of how to properly acknowledge my son. You know, there is one thing you can do, and that is: Say "hi."
When I find people staring at my 8 year old daughter (surviving micropreemie living with CP, Epilepsy, CVI and more using a wheelchair for mobility & g-tube for nutrition) I will smile at her then at them and say something like "Her beauty sure is captivating isn't it?" or "I don't mind if you stare at my daughter so long as you are smiling." Sometimes it helps, sometimes it doesn't, but at least they know I noticed and gave them a chance to turn a negative reaction into a positive reaction.
ReplyDeleteMy situation is a lot different.. We have special need s bright on by abuse. They have RAD, FAS PTSD AND ADHD to name a few struggles. We get stares and rude comments because my six year old who appears to be "normal" can be on the floor kicking and screaming in 29 seconds over a dropped cookie ( he went hungry) we struggle a lot with people's judgement over behaviors my kids simply can not control. Typically I stare back... Or wave while smiling like a maniac .. Sorry for the crazy spelling my iPad is doing weird things!
ReplyDeleteHi Ellen!
ReplyDeleteI just did a post on this the other day. I have a completely different view on people who stare. I call them "Stargazers" because, let's face it, Gavin does have movie star good looks.
http://www.kateleong.com/2012/07/stargazers.html#.UABBTCtYuI0
I worry about your blood pressure...your heart...your anxiety level...your energy. Don't always assume the worst of people who stare. It's not worth if if it affects any of the above things I listed!! Sure - some people are jerks. This is true. But there are jerks for every situation - you're just very aware of your own situation. And some people just can't be subtle - no matter how hard they try. Feel sorry for them and move on. It's a more "heart healthy" approach. :-)
xoxoxox
I'm sure I've said this before, but my response is to try to catch their eye and smile. If they look like they want to engage, I might tell them a little bit about Charlie's disabilities. I like to think that people wouldn't be such goobers if given the opportunity to be etter.
ReplyDeleteI saw Kate Leong's posting the other day, and appreciated it very much. I could also relate to Anon 8:38's comment here. As a person from the "typical" world, these postings about staring stress me out, because I really don't know how to respond. Hopefully I'm a little more subtle than some of the folks that lead you to write. New things are eye catching until they are familiar. If I look away, they will not become familiar. In the middle is this awkward area where we are going to mess up sometimes. I would be inclined to smile, as you've requested, but sometimes I fear I'll appear patronizing (because you're the only one I'm smiling at). I also know that everyone's different, and every day is different, so some people would like a smile, and others would NOT. I just feel like I won't get it right no matter what I do. So please... these articles tath I might be doing things wrong just get me more tensed up and awkward!!!
ReplyDeleteI used to really care about the stares a lot. I remember when my daughter was just a baby I had to leave the grocery store crying because it felt like so many people were staring at her. Then I looked deeper within myself to try and understand what made me feel so bad about these stares. And what I realized was that I had not truly accepted my daughter for exactly who she was, special needs and all. At that moment, I knew that I had to let go of any walls that I had built up and just fully embrace and love my daughter exactly as she is. That unconditional love for her overrides any hurt or heartache some random stranger could possibly cause me. She is beautiful and perfect in my eyes and that's ALL that matters!
ReplyDeleteI tend to agree with smilinjo and Kate from Chasing Rainbows. I do think most people stare out of curiosity or perhaps they are uncomfortable and don't know how to act. When they see you smile at them and say "hi" or see you just carrying on and enjoying your child, they are able to relax and hopefully learn that your kid with a disability is just a kid. If you are snarky or confrontational, you only reinforce their feeling of discomfort or teach them that it's not OK to be curious, i.e., you have taught them to ignore and exclude your child.
ReplyDeleteSorry, Ellen, I know you have heard my Six Flags story several times, but maybe some of your new readers might find it enlightening, so I'd like to share it again. When my son Gabriel was in second grade, he had Tourette Syndrome, and had a lot of facial tics. We were in line at Six Flags, snaking through the line for a ride. So we kept passing the same boy, about Gabriel's age, and the boy just stared and stared each time we passed him. I was getting so anxious about the stares, that I finally moved to position myself between Gabriel and the other boy. At that very moment, Gabriel leaned over to me and whispered, "See that boy over there? He's got an eye problem...he keeps staring." I thought that was amazing insight; he saw it as the other kid's problem, not his.
We would much prefer someone asking about our daughter than staring. We are comfortable with her condition and think it is ok to educate others on what is going on. We find kids very teachable and eager to accept if we are confident and set them at ease. We blogged about it the other day. So cool to see so many people dealing with this issue.
ReplyDeletehttp://mademeaningful.com/2012/06/30/curiosity-is-ok/
when Junior was little he usually smiled at whoever was staring and often I would stare right back. Now that he is older he will sometimes still give his big old grin and sometimes thats enough to stop the stares but there are times now when he gets upset and starts crying or giving me his "help" look. I used to then whisper to him very loudly that they should at least be polite and smile. Now he has his ipad programed so he can tell me "They are staring at me" or "that person isn't being nice", oh the shocked looks from people when they realize this child they assume doesn't even understand them is "telling" on them.
ReplyDeleteStares have always bothered me more than questions.For me stares and questions always come from my peers(14 year olds) or younger kids.When a peer stare well the stares ussaly come from annoying boys anyway who wan to irrtaite me so I ignore them.But if its someone else my about my age.I say,"Excuse me,but why are you staring at me?" ussaly that quiets them.For younger kids I say,"What are you staring at?"(nicely of course) The most common response is your ear or the thing in your ear. Then I say its a hearing aid and helps me hear.I actully dont mind telling younger kids because of the whole acceptance inclusion thing. By the way does Ellen or anybody have any tips about explaining a disablity to kids 3 years older than you (think 17 year olds)who you are scared of. I am asking this as my Public Speaking class is full of seniors i am the only freshmen.I have kinda forgot how to explain my hearing loss/never really had to at this age because basiclly my whole class (the 250 of us) know and have known for years about my hearing loss.Any advice would greatly help.
ReplyDeleteI used to work at a retail store where I had numerous regular customers. As the manager, I would often let my parents bring my Autistic brother to the store and run around because I knew he was getting antsy and needed to get out of the house. Not only did I get to see my parents but I helped provide a safe place for him to hang out. One of my regular customers was talking to me at the reqister when my brother ran by, stemming. She "ugh"-ed and said "Some kids need to be on medicine" very nastily. She turned pale as death when I told her that he was my brother (She caught me on a good day, I was nice about it) and I never saw her again.
ReplyDeleteTypically, I stare at people the same way they stare at him. Then they turn their stare to me and make it nastier as if to say "What are YOU looking at?" So I then mirror that until they either go away or confront me.
When E. was a baby, his shunt was very obvious and people would stare and sometimes ask questions. It didn't bother me. I liked it when people asked about him; I could talk about him all day. And mostly people were very kind.
ReplyDeleteNow that he's older and the shunt is covered by his hair, it's more difficult. He looks like a typical 5 year old but can't speak like one. He's still in diapers. He can't hold utensils or crayons properly. People give us lots of disapproving looks, I guess because his disabilities, on the surface, look like bad parenting on our part. I don't know what to do about the staring. I just try to ignore it. Some days are easier than others.
We're lucky in that my Ashley is Super-Social. He usually sees a starer before us and shouts "Hiya!" Smiles and waves to them before we notice and take offence.
ReplyDeleteI tend to agree with those who don't use negativity as a response. Eye contact and a big cheery smile is either engaging or enough to break their stare.
And to people outside our happy challenging world, our kids are new and fascinating and it's understandable that they stare as an initial short response.
It would be nice if they only ever responded to them as most adults do to most children. But they don't.
When people stare at me I stare right back because I know I didn't do anything wrong it's not my fault that I have Cerebral Palsy.
ReplyDeleteKeep in mind that some people may not be being mean. I don't have any kids with special needs, but I do come from a large family, which is another category that receives a lot of stares and frowns. Some of these people staring are hostile, but some are not. We have often experienced someone looking at us and we thought they were judging, but it turned out that they were missing their own kids, or wishing that they hadn't been infertile, or something like that. I know you said "I can tell what they're thinking, because I have DSP (Disability Sensory Perception)." Are you sure you can always tell what people are thinking?
ReplyDeleteWell said! Thanks for bringing this topic up and offering some great suggestions!
ReplyDeleteI've comparatively recently entered the world of being a parent to a special needs child & now understand what a pain in the arse it is when your kid is doing something "different" and people are looking in a way that shows they think that something is "wrong" with your child - and not wrong in a way he can't help way.
ReplyDeleteHowever, I totally get the awkwardness of seeing someone with special needs & not knowing quite how to look & not stare. I'm an avid people watcher in general - really, I can be a terrible spacy starer at just about anybody in my line of sight - and I don't want my gawking at anyone with a special needs situation to think I'm staring at them b/c they look different. I'm staring b/c I'm just terribly rude about staring at everyone. Really. And I'll totally unintentionally eavesdrop on your conversation at the diner too. Bad habit. Sorry. Ugh.
When my kids were little, and they would stare, I would encourage them to say hello to the person who caught their attention. It works ok with kids. But adults-not so much- my curious daughter stage whispered 'Mama what happened to that man?" pointing to a guy with both a prosthetic arm and leg. He scowled at her- and scared her. She was front of the carrage little- 3 maybe- and it would have been a great teaching moment to help end the staring-at-the-different-than-me ....starts early-with inclusion and demistifying the differences...just sayin'
ReplyDeleteThis can be frustrating. My 3 year old son has spastic diplegia CP and has not gotten many stares like this yet because we generally have him in a stroller. But I will put this out there. I often find my self unintentionally staring at families of other children with special needs because I feel like we're in the same club. Usually I am trying to gage if it is appropriate to strike up a conversation.
ReplyDeleteMy son (Caelan) uses a wheelchair and has profound autism (he is cognitively disabled, is non verbal and can sometimes verbal stim quite loudly). He s 15 and so we have been learning to live with stares for a while now. There seems to be three types of people 1. Those that stare and stare and stare. 2. Those who ignore my son completely, almost to ignore his existence (this bothers me nearly as much as the staring types). Caelan exists, he is a person and is entitled to acknowledgement too 3. Those that smile, say "hello" /or some other everyday comment - these are the people who truly "get it". They are reaching out to a child who is often isolated from social interactions. They are reaching out to me. A simple, "he seems to be enjoying hs day" when we are out for a walk and Caelan is verbally stimming with delight can really make my day.
ReplyDeleteI am not sure if the staring affects Caelan (cognitively I don't know if he is aware of it) but I do make an effort to shelter him from it. He wears a hat and transition lenses. While the hat and the lenses are for sun protection they do offer the added shelter from prying eyes - people may stare at the wheelchair but they cannot stare into his eyes.
I can often get really annoyed at those that stare but I have consciously decided not to let these people spoil my day. Plus Caelan has a two year old sister and I do not want to set an angry example for her. A general stare will be ignored. A prolonged stare will get a smile, a wave or a hello from me - that will usually break the stare and that is all I care about.
As one of the children (who's now an adult) who got stared at, and still does, I can say that now I really don't even notice a lot of the time.
ReplyDeleteMy dad was very protective, and used to tell people to take a picture, that it would last longer.
My boyfriend is the same way, he gets very defensive, mainly I think because he's not used to it. Even after nearly 7 years, he still gets riled up if he catches someone staring at me. Although now sometimes he says they stare because I'm so pretty.
Which is probably along the same lines of why people stare at Max. They can see that he's just so handsome, or maybe they can see that he has super powers and they're amazed. :)
On the rare occasions that I do actually notice if someone is staring at me, I usually just stare right back. If I'm in a certain mood, I'll say something like, "See something you like?" or, "Can I help you?"
Children staring at me don't bother me at all, because I know they're just curious. Most of the time I'll just smile at them or say hi.
I'm very grateful to the parents who notice the child is staring and encourage them to say hi, or ask me a question. Those parents rock! I wish there were more parents like that, rather than the ones who admonish their kids for staring and then just brush off their questions like " why does she walk with those?" (my crutches.)
Our typical twins used to get stared at a lot. People would make the same comments over and over again: "You sure have your hands full" or "double trouble," or "I don't know how you do it." I decided to smile and answer politely, rather than to ignore the comments or show any hostility. It was really for the sake of the kids; I didn't want them to think that there was anything wrong with them.
ReplyDeleteSuki aqui- i am a twin and my sister and I both have medical issues so you can just imagine the stares we used to get more then than now
ReplyDeleteI have been looking for my well loved copy of the book Rules by Cynthia Lord because of the staring scences but all my books are in boxs as my room is getting painted so it is hard to find. Will comment about it when i find the book
I was a daydreamer as a kid and remember being angrily confronted by someone who thought I was staring at her companion (her daughter, perhaps). I was upset to the point of tears. To this day all I remember is the hostility from that person, and for some years as I grew up, I went out of my way to avoid even glancing at someone who looked different.
ReplyDeleteI think Kate Leong's post is lovely and kind.
I think that we all want to react appropriately to stares. Mostly, I just say "Hi" to the kids that stare at me. But sometimes it depends on the day. Maybe it's because I have always understood special needs, but I think that people with disabilities are just that first- people. And just like everyone else I have days where I feel confident and willing to educate and days where I don't understand why I'm being stared at by kids, because above all I am a person with feelings. I don't like staring, and it's not because of what the starer is thinking, but how it makes me feel.
ReplyDeleteMELISSA
Kate's post is wonderful! What a great and healthy perspective. We can't change everyone!
ReplyDeleteI think being rude is more an issue regarding today's world than an issue of disability. People stare at my relatively typical (some sensory issues ) son bc his favorite color is pink and he picked pink shoes. I realized when I defended it, it was my discomfort. I got over it and if I need to say something to those who may comment about girl shoes, I smile and say they are great! His favorite color! His sensory issues are what people don't understand. I try to explain then let it go.
ReplyDeleteI really appreciate the discussion here, it's a good one to hear all perspectives. And yes, please go read Kate's post on the topic, it's wonderful. I am not hostile when I respond to people who glare (yes, glare) at Max; I try to keep it playful.
ReplyDeleteIt's definitely human nature to stare out of curiosity. Like I said, I have learned over the years that just saying "Hi" helps. I do find it hard to respond with kindness in the face of someone who is staring in a mean sort of way. Unless you have been a parent of a child with special needs experiencing that sort of look, you do not know how absolutely mean people can look. It's awful. Thankfully, Max doesn't notice. While these kind of looks don't happen often, they do happen. I am very protective of Max, and these stares bring out my mama bear.
I agree. I try to respond in kindness but when someone is being cruel to my boy (any of my boys, not just my SN son) I get very protective. I never want them to feel badly about who they are. Other people have such a huge impact on our self perception and self worth, we can become depressed, or even suicidal. It's something that I do take seriously. I want my boys to feel good and important and lovable no matter what anyone else says to them, thinks about them, or possibly looks at them. It's a battle to you because the way a person treats Max hurts you just as much, and frankly probably much more, than it hurts him. Once we have kids our hearts are physically exposed and out there in the form of those children. I'm praying every day that I can be a good parent and a good person to those I encounter. Some days when Sullivan has vomited all over me in public and is smiling and shaking his head back and forth and people are starring at him and me, I struggle to find something educational or kind at all. Such is the struggle.
DeleteI like special needs people. They are not too selfish, have good intentions, and are appreciative. I look at such people, because I see these qualities.
DeleteHi Ellen,
ReplyDeleteI am 28 and I have Down Syndrome. When people stare i used to get mad but now i just smile at them. I work at Joanne's Fabric and I get stared at a ton. When I was in jr. high the stares were really bad. i got mad all the time at those kids. now i know sadly some people stare and not to take it too hard.
My all time favorite staring story involves my son:
ReplyDeleteWhen my oldest son was about ten years old we were visiting a family resort. My brother, Dar, LOVES water. He screams, he splashes, he sucks water in and spits it out, he jumps around and screams again. On this particular visit Dar was twenty-one years old and wildly happy. While my son swam with new-found friends, Dar happily cleared out the hot tub. First people stared, and when that produced no result, they left. Eventually, one the kids my son was playing with asked with intense curiosity,"What's wrong with him?" My darling son looked at his uncle and shrugged. "Dunno", was his bored response,"maybe he's hungry." And off they swam, question answered!
Sometimes it's not the questions we are asked about our autistic loved ones that matter, but the way we answer them. There IS nothing WRONG with my brother! Loved it!
It's unfortunate that people stare. But I have to say that we're a much more voyeuristic population now with all the images we're bombarded with both in real life and on the internet.
ReplyDeleteStaring is often quite rude. It happens to my daughter, and she's not in the special needs category. However, she does have some unique behaviors. And having been on the receiving end of moms being rude to my daughter for staring at their [insert special need] child, I have to say it's hurtful to be attacked, even if it is an attempt to create conversation.
I also get 'the stares' because my daughter sometimes does things that aren't "normal" in the context of what the general population thinks of as "normal". It's upsetting. And while likely not at the same level of stare-itude that special needs parents must contend with, I've found that when I'm defensive, abrasive, trying to be funny or just outright rude that I'm met with a situation that escalates from uncomfortable to anger-filled.
The conversation needs to go both ways. As the one commenter mentioned, in some places (and cultures), people who are different in any way are often kept hidden away.
If a person's first experience with a special needs family is one of contention, disdain, and belittling it's going to be very difficult to get that person to change their view.
And, I do have to agree with the commenter that said it's unsettling to see teens around very young children. Strangers don't know that your child is harmless, all we know is what the societal norms and our general experiences are.
This is a two-way experience and conversation. Each of us has the opportunity to help a stranger understand that our child is really no different than theirs.
I just stare back and smile. However, I don't have a kid with CP, I have CP myself. I would be much more offended if it was my child, and I don't know how I would react. I do get very offended when people stare at my boyfriend though (he also has CP). I've thought about just outright yelling at them.
ReplyDelete--Katie
I get people trying to figure out how my very blonde daughter with PWS 'belongs' to our family of brown hair & brown eyes.(very fair complexion is a PWS trait) They come *this* short of questioning paternity, but ask a lot of questions about my family background.
ReplyDeleteThis is a very good discussion, specially since I'm one of the group that probably "stares" and I mean specially if you have a boy, special needs or not I promise you I WILL stare, I just can't help but seeing my son Zach who recently passed. If your son specially has any sort of special needs, I will stare because somehow I would like to find a way to break the ice, to get to know your son's name and pray for him, hug him, tell you how wonderful your son is, and I see my boy in yours. Sorry if this freaks you out, I understand if it does, but you don't know what that person staring is thinking... Anyway this all sounds way too complicated, I guess that the next time I will just say: Hi! :)
ReplyDeleteWe have known about Samantha's diagnosis for 2 years (She's 4 now). Prior to her trach/g-tube surgeries last year, she just looked like any other toddler in a stroller. But, now with the trach it is different. Much different. And, when we are out I can't help but watch people stare at her. I try to give them some slack as trach's are not that common. But especially if I am not the one pushing her--it is very easy to see people really, really stare. So far I haven't said anything yet--I'm kind of shy and not that confrontational. At times I just try to look ahead and not notice it. I know it is going to happen--and I can't confront everyone.
ReplyDeleteUsually we get actual questions from kids out at the park, family parties and such--and I love it. Little kids are so easy going once you explain stuff to them. At a family party last week another 4 year old asked what I was doing when I was giving Sam a flush and I explained that I was giving her some water in her stomach because she can't really drink very well. And the little girl said, "oh, I drink with my mouth"....and when I explained that Sam struggled with that and that's why the doctors gave her her button.... she seemed satisfied with the answer and asked to play with Sam.
In addition to the stares, we do get a bit extra attention at times (good intentioned folks) who go out of their way to make sure to talk to Sam and interact with her, comment on her sunglasses etc. And I do appreciate it.
I also worry that as Sam gets older people may not react to her in the same way. But we will cross that bridge when we get to it I guess.
I once saw a t-shirt that said, "If you keep staring long enough, maybe you will cure my child's AUTISM, and then we will work on YOUR social skills!!"
ReplyDeleteWhile quite clever and sharing the frustration that others cannot deal with differences without soaking it in through their eyes, it probably isn't super-helpful to treat the "stargazers" in a negative way. I usually move closer to my special needs son to show my support and identification with him. I am very proud of my son!!! And I cannot help but think about WHY people act as they do. It reminds me of a couple of close friends I have who have lost children to different causes. They often share that many of their closest "friends" have completely abandoned them...SAY WHAT!?!?!?!? REALLY????? But I have seen it first hand!! Not from losing a child, because I have not....yet....but from supporting one of my best friends through the loss of her daughter from drowning. Many of her friends actually AVOIDED her!!! Unbelievable, right?? Wrong. People who are only living with "normal," cannot handle the raw truth sometimes. And I think the stargazers in this conversation are much like that. They cannot truly grasp that yes, things can be that "different" all day, every day, for so many. And they soak it in, wonder how it can be, and maybe even relish that they cannot really identify. They are both lucky and somehow needy.......there is a love here within these special needs relationships that goes far beyond "normal" love.
I say we just love our kiddos, try to be kind to others and SMILE. We are blessed and trusted by God with these kiddos!!!
I don't notice most of the stares anymore. If they're blatant, however, I might be prompted to say something like, "No, sorry, I'm not really Angelina Jolie but I get that all the time".
ReplyDeleteMy daughter is now 18 and the stares are still coming. It used to really bug me, but it doesn't any more, It's just part of this life. The parents are ambassadors for our kids and I try to curb the snark, unless it's really called for. I have to say, though, it really upsets people who are with me and are not used to it. My daughter Maggie doesn't care - she loves the attention. If she's happy, I'm happy. I have to focus where it matters for my life.
ReplyDeleteI carry little business cards around that have a picture of Elijah on them, my favorite quote "Enjoy the little things, someday you may look back and realize they were the big things." and his caringbridge page web address... If someone is blatantly, rudely staring I pull out a card and hand it to them, saying, "If you would like to learn more about my son's disability, please visit his website!" *smile*
ReplyDeleteI had to practice over and over because I usually avoid confrontation, but it's really helped me deal with it over the years
I found out that my newly born niece was going to have a lifetime of physical and mental delays. I had taken the news very hard and was questioning "why her". I took my children to a park a few days later and saw a beautiful little girl with obvious delays happily playing there. I watched her, thanking God that my niece was alive and still had the capacity for happiness. That's when her mother came over and quite rudely asked why I was "watching her child like she was a freak." I was shocked, but tried to explain. The mother was so defensive she wouldn't even listen. So, please remember, not all "stares" are judgemental or bad. Sometimes our beautiful children are bringing new understanding. Just something to think about.
ReplyDeleteHow many of you have stared at someone who weighs 600 lbs? How many of you have stared at someone with horrible acne? How many of you have stared at someone dressed like a hooker? How many of you have stared at someone extremely tall or short? How many of you have stared at someone with a huge nose or ears?
ReplyDeleteEveryone has stared at someone. You've all done it so why are yall acting like its the end of the world when someone stares at you or your kid?
I think that those that stare at others who have autism should work on their social skills. NT strangers that all they do is stare should work on their social skills.
ReplyDeleteEllen, Fake it until they make it. Smile big and make the assumption that their stares are well-meaning even if you know otherwise. I'll tell you what, a little "friendly shame" can do more to change hearts and minds than any amount of confrontation will. And when you have kids with obvious differences that include a son with a preference for girl's clothing, that's living on Main Street in Differenceville. It's all good if you don't let it bother you. Sometimes you can teach people what's important in life. It works for me, anyway.
ReplyDeleteReally. Just...really. Max is "that cute kid on the Internet." Maybe these people have seen him on your blog?
ReplyDeleteI usually get stares because my son is having a meltdown, so I can't really respond to them. The worst was when a woman went out of her way to take down my license number as I was wrestling him into his car seat before he ran out into the parking lot. Fortunately, the police never came!
ReplyDeleteI wrote a blog post that mentions this topic a couple months ago: http://tanajimenezpt.blogspot.com/2012/05/10-things-you-dont-know-about-special.html. It was inspired by a blog post by Maria Lin.
I started writing a line of quotes because of this very thing. To see my quote about what to do when someone stares, check this out http://brushstrokeoflove.blogspot.com/2012/07/smile-quote.html
ReplyDeleteMy daughter is very small for her age, she looks more like a newborn than a 1 and a half year old, and she's cute to boot so most people are just amazed at how small she is for how she's acting. I try to be polite tell them she's actually much older, and that usually ends most conversations. However there is always that one nosey person who asks was she a premie and depending on my mood i lie or say no and try to put her diagnosis as simple as possible. I try to be patient and all that but mostly I'm usually just astounded by peoples nosiness. As for audrey she usually is just happy to be noticed and yell at someone new
ReplyDeleteI know this is completely different but I know I stare at all kids – Ok before you jump to any conclusions I work at a child-minders where we have to watch the kids 24/7 and watch for any hidden dangers, so much so whenever I see any kids I automatically do it. Same thing with people with special needs, however I find most of the time I’m staring at them without realising. And I’m normally thinking I feel sorry for them because of the problems they will get in the future from people judging them, but at the same time also happy that they are somewhere where they can do things they want and be happy.
ReplyDeleteP.s. I completely love the woman’s suggestions about what to do when people stare, but the last one about the man smiling, I nearly fell of my chair laughing, that man is a legend and I WILL be doing that in the future.
Sorry for jumping in, but its not only SN ppl that get stared at.
ReplyDeleteSo do cute kids, ugly kids, noisy kids, boisterous kids, unaccompanied kids, and adults too.
im in my mid 30s with 3 kids and i get stared at just as much as they do.
Ppl are drawn to whats different or outstanding.
You can get upset or you can let it roll over you like a gust of wind.
I used to work in the SN/LD field and got so used to 'stares' that i hardly notice, which seems to encourage some of the starers to make stupid comments....
Now that bothers me.
Its ok if you are interested, but when you draw attention to us i find it as an attack on our family.
All i can do to not end up repeating myself in the street DAILY, is to try and ignore the ignorant members of our communities.
Unfortunately with all their breeding and stupidity, it wont be long before compassionate and considerate ppl become an endangered species.
Love!
I am an Habilitation Expert working with special needs kids. I go out in public with them regularly, and oh the looks we get. I have worked with kids that look completely normal but throw themselves and loudly vocalize to kids twisted and turned with the nastiest CP. I have used every kind of wheel chair and gate trainer and walker doing laps around the mall. We get noticed, a LOT. My solution has always been to say, "I don't think you've met someone like ______ before, she has _______ which makes it hard for her to move." Or, she learns slower than others, so she's still learning ______. People stare because they don't know what else to do. Even if they are particularly nasty, they can't be rude to that!
ReplyDeleteMy bf has a severe physical disability(read he cant walk at all) and he uses a wheelchair when we are out. If I see adults staring- I will say hi and smile at them. I find children's questions easier way easier to handle then stares. As my mama told me- its good to be curious however dont be rude. I dont always see the stares, though.
ReplyDeleteMy daughter is little, she's only 1 so people tend not to notice. Amelia has a rare kind of CP- spastic monoplegia. Many dont know. I get many "Oh I didnt know about spastic monoplegia" comments. On long journeys, we drive.
ReplyDeleteIn the rare event some one stares, I or my husband smile at the person. They either look away or start chatting. My daughter has mild CP. I am praying we dont get many stares because in several ways, Amelia IS typical.
I was in a situation today with a group of kids that don’t have special needs, when a group of kids with special needs came into the same establishment. There was a child, who I didn’t know at the time had autism, but he was very loud so I knew he had some type of special need.
ReplyDeleteI admit I did look his way more than I probably should have. He was a cute kid and I am what I would call a natural observer (people watcher) especially while in this type of setting and situation I was in today. I was keeping watch on a lot of kids. I just wasn’t responisble for this child. I have no idea the look on my face but I can tell you my thoughts.
There was an older gentleman who said “shut that kid up”, which I thought was terrible and said so to my colleague. We heard the lady tell the man that the child has autism. That’s when I mentioned how cute he was and we started talking about autism. I suppose I glanced this child’s way too many times, but I did not think I was staring and he was sitting at a table with a huge window.
One lady in charge came up and was clearly not happy and said we were staring and that stares make him more agitated. I told her we were talking about how cute he was and autism in general, but I apologized. It’s bothered me ever since. So, now I am sitting here reading about autism and felt the need to comment on my point of view as someone who stared too much today.
I really didn’t mean to stare. On a typical day where my current task is not watching kids, I’m quite certain I would not have looked this child’s way nearly as much. I can’t begin to imagine the struggles people encounter when he/she is responsible for a special needs child and my intention would never to make it harder with a stare. I watched this woman too,who was so patient with this child. People who have the ability to care for special needs children must have a special place in heaven.