Dear Mom On The Street Who Stared At My Son,
You didn't notice me watching you staring at my son, but oh, I watched. You were headed toward us on the street, walking next to your husband, with a child about five years old trotting behind you. You were impeccably dressed, a shirt with red and white horizontal stripes tucked neatly into tan chinos, dark shoulder-length hair perfectly in place. My Max was ambling down the street and by that I mean, he was moving fast and when he does that he sways side to side.
He'd just had chocolate ice-cream, so he was very happy. He was also psyched to be out on a warm spring night with his mom and sister, cruising around town. He wore a navy cotton bandana bib that was wet; he's been drooling more than usual lately. Cerebral palsy messes with your muscles, including your oral-motor ones.
You fixed your eyes on my son and did not take them off.
It wasn't just a stare, it was a stare-glare. You seemed disturbed by the sight of him, the sight of a child. My child.
The stares I break down like this:
The curious stare: What is up with that boy? I can tell he has special needs, but I'm not sure what. Autism?
The pity stare: Oh, that poor, poor, boy with special needs. How sad. Awwww.
The exasperated stare: Why is that boy carrying on in a restaurant? His parents should not take him out if he's going to act like that. What a brat.
These stares, I understand, as much as I'd like to think that people are looking because Max is so cute (and has really good hair). But the stare-glare, I don't get. How can you be annoyed by how a child looks? Yeah, he's not exactly like other kids who walk straight and who do not drool. But how shallow—no, how vile—it is to go by appearances. Or to think that it is OK to blatantly stare at a child.
We passed each other in about five seconds. I dared you to look at me, so I could give you a look that said, "I see you staring like that, what's wrong with you?"
Max did not notice. He is unaware of stares, and I am fine with that. I do not think ignorance is necessarily bliss, especially when you have a child with intellectual disability, but I will gladly take this oblivion until the day comes when Max can introduce himself to a starer or, as the case may be, give them one right back.
Me, I notice the stare-glares every single time, and a mix of emotions runs through me: Fury. Distress. Heartache for my son. And confusion: What exactly is the problem here?
I typically see the stare-glare coming from elderly adults, who I figure grew up at a time when there was less acceptance of differences, a time when people with disabilities were shuttered away in institutions. But it's particularly unsettling to get the stare-glare from a mother around my age. I would think you would know better. It's a shock to my system to literally see the prejudice that exists toward people with disabilities—and that some people do not care to hide it.
I was tempted to turn around and shout, "His name is MAX!" But that wouldn't have done any good and Max would have just grinned at you and his sister would have been embarrassed, because she's at that stage where I've started mom-mortifying her. So I just kept walking.
If I'm in a park or at a party with Max or some other social setting and I notice a mom or kid staring curiously, I can engage them in conversation. (Though it would be awesome if you just said "Hi!" or encouraged your child to, or let them ask my son a question.) Reaching out to people who seem to want to approach Max but aren't sure how is a way to help them see the kid behind the disability. But there's not much I can do about drive-by stare-glares, and it's frustrating.
You likely won't read this, but perhaps others like you will. Consider:
• My child may have visible differences. He may sound different than your child, and he may learn in different ways. But at heart he is still a kid. Just like yours he likes to laugh, play, love. He's not as different as you might think.
• Think about the messages you will send to your child if you continue to stare-glare at children with disabilities. Maybe acceptance doesn't matter to you, but you will be raising one narrow-minded kid. It will limit his experiences in this world.
• My child may not notice your stares now, but someday, he might. And that will make them even more cruel. Kids with disabilities have a hard time feeling included—how much more so if people look at them as if they are aliens.
• My kid has been through a lot in his young life. When he walks down a street, he is defying the doctors at the NICU who said he might not walk and who weren't sure he would live. He has incredible strength. Adults who shoot him nasty looks are weak.
• No matter what: He is just a child. He deserves to walk down the street with whatever gait he has and not incur a stare-glare. He deserves respect.
Image: Flickr/Julien Brkmr
Oh my, that is terrible. Oh how I wish you would have been able to catch her eye! Yes, the stare glare is the worst kind.ReplyDelete
I hope Max grows up never having to see the stare-glare but I know from personal experience that won't happen I am acutely aware of people staring at me thankfully i've realized those people are either curious or ignorant either way it doesn't affect the way I feel about myself.ReplyDelete
"I am acutely aware of people staring at me thankfully i've realized those people are either curious or ignorant either way it doesn't affect the way I feel about myself." You are an inspiration to me!! I do mean that!! ;)
Love you later, Raelyn
I hope, Nisha, that when Max is aware of these looks, just like you he is able to not take them personally. As his mom, I DO take them personally!Delete
Thanks Raelyn :)Delete
I hope so too Ellen for his sake. I know it's hard to see people staring at your child but you can't tell off every ignorant or curious person in the world you and Dave are Max and Sabrina's role models if you ignore the staring so will theyDelete
I know exactly how you feel. I have dealt with this quite a bit with my son who has spastic quad CP and is wheelchair bound. He's 10 and not aware of the stares or the whispered comments. However, I am. I'm aware of the parents who just shush their children and drag them away when they are curious. I'm aware of that look that you get that says, "what did you do to your child?". After walking through Wal-Mart yesterday I told my husband that I am done with it. The next time someone stares I am not holding back. I going to stare right back at them with the most disgusted look on my face. Which I have done a few times in the past when people made comments loud enough for me to hear. For instance once in McDonalds a group of four young girls were giggling and turning and looking back at us, and then one said loud enough for me to hear, "Let me stop. I don't want my child to turn out like that." as she turned and stared at my child... and then caught me giving her a look that could kill. Needless to say she turned back around, finished, and then left.ReplyDelete
I've had this problem for many years. I even made up business cards for him to hand to people when they start staring. I keep them on me at all times. Most people though don't just sit and stare, they stare, glance at you, and then quickly walk on.
I know of other moms who hand out business cards for similar reasons, or just so their kids can introduce themselves to others. One might have come in handy for that mom passing by! Comments are tough. If I hear kids talking about Max I'll go over and say something like, "Maybe you'd like to say hello to him?" I figure/hope that kids can be educated. I have a much harder time (obviously) with adults who glare.Delete
I'll admit to occasionally being guilty of the curious-stare. I'm usually thinking, "Hmm, is this kid a developmentally well-matched play peer for my SN dc? Would it be useful to network with this family?" I'm betting your stare-glare lady is from Eastern Europe, btw. They still do the institutionalization thing over there.ReplyDelete
I love your response! That's usually what I do too...sizing them up and thinking "hmm, haven't seen you around before, wonder where they live, wonder if our kids would click" or I'm checking out equipment and thinking "wow, the handles on that wheelchair are cool...wonder if those would fit on my little guys' chair". But, yes, unfortunately, we get the occasional stare glare as well!Delete
I am from Eastern Europe, I have a brother with special needs, your comment is cruel, discriminatory and not even close to the truth. "Over there", in Eastern Europe, as you put it, is not one country and you only prove how narrow-mindedness can hurt people. What do you even mean by institutionalization and which specific country and legislation do you have in mind?Delete
I'm glad you distinguished between the stare-glare and the curious state. Because for those of us uninvolved with special needs on a daily basis, we need to e able to observe and process to learn. We can't get from 0 to 60 in a fraction of a second, but blogs like this speed up the learning curve greatly. Thank you for your patience with those of us that are trying.ReplyDelete
Thank YOU for getting this.Delete
This blog has made a difference in my interactions!Delete
Just tears at reading this... xoReplyDelete
I understand completely I usually can read there stares and most of them are thinking im glad that's not me and my child..but they don't understand what they are missing out on.I have two adult children with disabilities and they are my lifeReplyDelete
Hi Ellen, we all mothers have got these stares and have learnt to tune them out now. I used to get embarrassed or uncomfortable in those early days when I had not really accepted my daughter fully however it doesn't happen much now but yes, there are days and when I get really worked up about it.ReplyDelete
I wrote about one such incident here where I did something really stupid when Aarshia was stared at!!
My heart does the same thing..."Fury. Distress. Heartache for my son. And confusion: What exactly is the problem here? "ReplyDelete
Wish we lived closer to each other so we could *really* give them something to stare at!
I so love the thought of the two of us together, cruising the street with Max and Jack.Delete
Mine is the parents who are embarrassed when their children stare and ask questions, I love when kids ask whats wrong/what happened etc... i try to answer them honestly and explain to them in away they can understand. It's hard sometimes but kids who are informed are our future, don't sheild them from differences, it's part of life!ReplyDelete
"I love when kids ask what's wrong/what happened etc... I try to answer them honestly and explain to them in a way they can understand. It's hard sometimes but kids who are informed are our future, don't shield them from differences, it's part of life!" I do not know your story. However. You are an inspiration to me!! I do mean that!!
Love you later, Raelyn
Totally agree, children are naturally curious, especially the younger ones. I do my best to engage them—but I also hope their parents will, too.Delete
Since I am not in your world I have no idea how much you really do have to put up with this every day. But I think in many parts of life today everyone is so quick to get defensive and to assume the worst. I appreciate that when you feel the stare is more curious that you engage with the intent of educating with kindness. Why not in the stare-glare situation as well? Coming at the person with anger ultimately serves no purpose and as you stated would have embarrassed both of your kids. Why not just state the obvious? "I see you've noticed Max and his sister. Aren't they amazing kids? Would you like to meet them?" That way if they do overhear you they have the positive reinforcement of your words and you've opened the door for someone to learn about what Max has been through. If they still ignore you and walk on, then at least you have tried. There may be something more behind the stare that you aren't aware of or are possibly misreading. Nothing is rarely ever learned by silence. But again, I don't live your life every day either so I am probably overstepping here. If I am ever caught staring at Max it will be because I hope to catch his eye and smile at him. I love seeing the faces of children smiling back. They rarely have agendas.ReplyDelete
Stare-glares may be rude and inconsiderate. To which I can't but agree. However. You make a valid point here!! I liked it!! ;)
Love you later, Raelyn
You raise good points. When someone walking by is staring that rudely, and you're with both your kids as I was, stopping and saying something just isn't going to happen. There have been times in other situations, like when we've been at airports, when people have stare-glared and I've said, "Is there a reason you're staring?" Usually they just look away. Not once has anyone like that apologized. I could try to be more inviting with these sorts of people but it's hard to get past the rudeness. I do my best but as I've said before, Mother Teresa, I am not. Overly protective of Max: Yes, I am.Delete
I am confused because I just looked at the photos on your blog and all I see is a gorgeous boy so not only was that woman rude she is crazy to see anything other then a beautiful, happy little boy. I hope there are enough encounteres in your lives of people who love all children no matter their differences for you to feel there is hope in the world for your boy.ReplyDelete
Thanks, Laura! I like your way of thinking. Situations like these are definitely not the norm (why I get so worked up). Mostly, the stares are of the curious kind.Delete
I totally agree that it is distressing and uncomfortable to get these stares. But I really try to imagine what ELSE might be sparking off in their mind to create such an unpleasant expression to appear on their face, and that maybe, maybe, it is nothing to do with judgement or disdain or distance or anything. An example: a close friend of mine was killed in a cycling accident, and when I see people cycling, I always get a rush of fear, and pain, and loss, and disgust at life's injustice and I have all that written on my face. And if the poor unsuspecting cyclist caught my expression, they would think "jeez, what's her problem" and feel discomfitted and of course they wouldn't know.ReplyDelete
Stare-glares may be rude and inconsiderate. To which I can't but agree. However. You make a valid point here!! I liked it!! ;)
Love you later, Raelyn
Whoops, I put an "e" in your name!! Sorry about that!! ;-}Delete
I am sorry, Ellen. I hate that your heart takes a punch so frequently when folks act like jerks. My kids somehow don't see us as on the receiving end of these looks, because Hannah's gait issues are seen only by professionals though every now and then a mom who is new to us points out that H's right hand looks dodgy, and says something to me, in case I have missed the cues. We keep sliding along passing for "normal". Yesterday we were at a festival with a children's art yard and I saw the demonstrators look closely at my daughter when she struggled to string a lei as expected. I watched her furrow her brow while the leaders took over for her to finish things up, and then I said nothing about it because I don't know what I am doing with parenting a child with hemiparesis and I think when I am in uncharted territory I should just observe. I feel bad that you get the glare stare and understand wanting to deliver a throat punch but when you just get confusion, I say it is because most of us are confused, even when we are on the "inside" track.ReplyDelete
Gosh, Ellen, I really used to love your blog. It gave me so much hope as a young parent of a child with special needs. Now, when I read it, I feel like it's so negative. This "us versus them" mentality is not going to bridge the gap between the so called "stare-glare" and acceptance -- it's only going to widen it. There are some people who are just mean and stupid and will stare at our beautiful children, but calling them out in a public forum only makes it look like we are super sensitive, overly dramatic mothers who will lash out if you so much as look at our child the wrong way. That is not how I want to be represented as a special needs mom! I really, really respect you and think you're an amazing mother and Max is totally awesome, but I simply can't read this blog anymore. It just brings me down.ReplyDelete
Couldn't disagree with you more. This specific topic reflects the pain we feel for our children in all bullying or disrespectful situations. Its a real response and very valid. My daughter,15 cp/autism, is embraced and accepted at school. But has no neighborhood friends, no social outlets and I've been shunned from countless activities from acquaintances. That's reality unfortunately and it makes my heart ache, which in turn makes me angry and defensive. Ellen's reaction was TAME compared to what my response would've been!Delete
I hate it when people stare at me. But then again, I do wear bright blue hiking sandals...ReplyDelete
"I hate it when people stare at me. But then again, I do wear bright blue hiking sandals..." Crack. Me. Up!! ;-D
Love you later, Raelyn
Comepletely understand how you feel, as someone who has been on the receiving end of the stare-glares. I have a rare neurological condition and have had people come up to me and ask me what was wrong with me, in those exact words. I had a guy come up to me a few weeks ago and ask "Is there something wrong with you? Why do you look like that?" I was a bit taken aback, to be honest.ReplyDelete
Anyway, I have a blog where I am trying to raise awareness of disabilities in hopes that the stare-glares will stop. I believe that education is really needed to help people understand disabilities. Amazing post!
I am sorry that people have been curtly and rudely asked what is wrong with you. You're--as my phrase goes--Beautifully Unique!! You are an inspiration to me!! I do mean that!! ;)
Love you later, Raelyn
I love, love, loved your letter!! Why do people stare at "special needs" individuals, anyway?! Can't they simply smile? Besides. Isn't everybody in their own unique way different?! ;)
Love you later, Raelyn
Yes, Raelyn: WHY?!Delete
I adopted my special needs baby after she got out of the hospital she is almost 3 but is only 20lbs and will not get any bigger. Her bio father kicked her across the room and threw her against a wall when she was 17 days old she will never eat walk or talk. We have 12 Dr. In 3 states. I really try not to pay to much attention to the stares. You get used to it and most people I have came in contact with here in Michigan have been positive. I am also very open about how my child ended up the way she is child abuse awareness one person at a time. And when I do catch someone giving one of those stares I look them in the eye smile and give my baby k a big kiss. I was only uncomfortable one time and that was at the Children's Hospital eating lunch hey little girl was staring at Carmen and I smiled at her and my mom very loudly kept yelling at her to turn around and don't stare making a big spectacle out of everybody I just smiled eight and quickly got out of there after staring down the mother giving her one of those looks . God gave me karmen and I will do what ever it takes to make her happy and be gone with anyone who will interfear. Just k iw you are not aloneReplyDelete
Mary, I hope your little girl thrives in your hands. I love your idea best of all; next time I'm in a situation where I can't really engage, I am just going to give Max a great big kiss.Delete
I have seen the stare-glare directed at my son. Yes, from elderly adults. At their age, you think they would have seen everything so as to make them more open and accepting to others' differences. Maybe wisdom and open-mindedness has nothing to do with age.ReplyDelete
Every word written here could have been mine. We deal with this every single day with out little precious boy. A boy who lives a life of daily hardship but can still smile and laugh with joy. Not knowing what those stares all mean. But like you said, one day... Thank you for writing this!ReplyDelete
For my kidlets (who are 5 and 7) who occasionally stare at a person with a disability with which they're unfamiliar (wheelchairs, crutches, canes and guide dogs are familiar; the lady with the seeing-eye miniature horse, not so much)... I'm working on having them say hi instead of staring and politely ask a not-too-personal question instead or (ideally) make an observational comment, eg "I've never seen such a little horse" or "your chair is fast!".ReplyDelete
It's tough -- I certainly don't want my kids evil/staring at somebody because they are "different" but I don't want them to simply pretend folks with disabilities do not exist (which is, I think, what happens to kids whose parents shush them and tell them not to stare with no further explanation).
The kidlets are still little enough that folks seem to be okay with their (reasonably polite) questions and, honestly, the adults with disabilities they regular spend time with (my dad/their grandad, piano teacher, etc) say they don't mind the inquiries from kids and prefers them to rude stares/staring right through them.
The kids with disabilities? Ummm, the kidlets ask impertinent questions, get straightforward answers and it's mostly a non-issue afterwards. (My kindergartner's BFF was born with one hand, her comment upon meeting her was "hey! Jane has one hand! Like so and so on Barney"). The only way it's impacted either girlie is that they take dance together instead if gymnastics.
For those of you have a special need or have kids who have special needs, how would you prefer to be treated by kids?
Do you have suggestions on what to tell kids, so they don't stare or simply pretend you don't exist??
First, I have to ask: Seeing eye miniature horse?! Candee, you're doing an outstanding job. The last thing I want is for other kids to ignore Max; I get that they're curious, and may not know what to say. Really, just a friendly "Hi!" will do. I vastly prefer a child asking a question over staring, and ideally they should ask Max. Sometimes, kids and adults will ask me a question about Max while he's standing there ("Can he talk? How old is he?") and I'll say, "Ask him." Then I'll translate, if his speech app isn't handy. I think it's important for parents to talk about kids with special needs at home, too, and not just in the moment. It helps to discuss what's more alike than different—how kids with special needs love TV, ice-cream, trucks, etc. just like they do. How children with special needs may not always talk like they do or move like they do but inside, they can still be the same.Delete
I had to google the seeing eye miniature horse too! There's a cute photo of one in this article:Delete
Stare-glares are the worst, but I take great pleasure (even though I shouldn't) in staring back summoning my look of utmost disgust. I've now complicated things more by getting a service dog, so glare-stares quickly turn into "ooh PUPPY!" and I give my own glare-stare as they beeline towards the dog! www.stillicantbesilent.comReplyDelete
I have a little man that has a tumor behind his eye and his eye protrudes a great bit. He gets stares often (mostly pity or curious) and, of course, we hear the questions as we walk away and they think we are out of ear shot. I havent experienced this stare. Its heart breaking that another mother would stare this way at any child, special needs or not. Kids are innocent and are purely themselves. Its stares like this that scare kids into shells and teach them that being themselves is not ok... and thats not ok. Every mother should be more understanding of every child. Let them be them... they only have this innocence for a little while.ReplyDelete
My favorite has always been the Pity Stare. Ellen, if I were you, I'd repost this with the woman's description, and location where this happened as your header. This woman needs to be outed, and others like her need to know they could be next to be similarly recognized.ReplyDelete
Ah, no, it wasn't my intention to out her... I clearly needed to vent, but I also wanted to raise awareness.Delete
You're a more patient woman than I then, Ellen. I was ready to hunt her down for you.Delete
Boo gets all these different kinds of glares, too. It makes me so mad. Thank goodness blogs like yours metaphorically stare back at these people. I hope it makes them see themselves in a different light and change their behaviour.ReplyDelete
Thanks. I hope so, too.Delete
I am a former special needs teacher and a mom. I've been on the receiving end of many of those stares as I take my students out on field trips. I'm also guilty of giving them, although I would call them less stares and more looks of love. I admit to curiosity first, but I am very quickly able to see the beauty in any child which always brings a smile to my face. I then offer the smile to the parent! Occasionally, I do have to give the sympathetic smile when it's a child (especially with Autism) having a "moment" and they see my own children having their "moment" and its as if a moment of "yup, happens to us all" passes over.ReplyDelete
But what I like best, is that my 3 1/2 year old son, who has been raised knowing many kids with disabilities (when visiting me at a school--county board of developmental disabilities) and now attending pre-school as a typical friend in a special needs classroom, does not even tend to notice any of the differences. Although I sometimes wonder if he's a little jealous of his friends in wheelchairs because he wants some wheels!
Kids are amazing little creatures, free of all judgments until adults impose opinions on them. If only adults could learn from them. Take your stares and educate yourself!
Very well written !! As well as handled by Mother.. I personally don't handle things like this too well. My son is 6 and has Autism and personnally I never refer to him as being autist** because I think that is a negative term. But as for the stares.. I usually confront the starer only to make myself feel better and to make the person staring feel bad. My child nor any other child needs stared at. Much Love to Max and his family.ReplyDelete
As an autistic person, I ask the starer if they like my shoes. I think censoring the word "autistic" makes it a shameful term. If I should ashamed of being autistic and identifying myself with it, I should be ashamed of my religion, race, hair, eyes, school, home, and clothes.Delete
Oh man. I get that staring thing. I devoted an entire chapter of my book to it! But, the day when your child first notices it... chilling. Be prepared for it. (see my link I attached as my URL instead of my main blog page.)ReplyDelete
I'm guilty of the curious stare. I try not to, but then I end up staring at people and I'm like "is is CP?" "Is it spins bifida?" "Is it something else?" I try to always give an appropriate comment such as "I like your wheels!" Or "Your chair looks awesome!" (If they decorate their chair.) I find it harder to find an appropriate comment if I recognize the signs of autism, but if it's appropriate (park setting, playground, etc.) I'll go and introduce myself, even I don't get caught* staring.ReplyDelete
I love your blog and this post. My oldest daughter has scoliosis and used to wear a brace. Being a teenager, she was very self-conscious of it, but we worked hard to get her to own it and not worry about what people would say or do. Other kids never had an issue with it. However, we were in a store, waiting on line to pay and a mother and her teenage daughter were nearby. The mother, not the daughter, couldn't stop staring at my daughter. The daughter took a look and moved on. The mother stared. Continuously. Like you, I said nothing because I didn't want to embarrass my daughter. Like you, I blogged about it. I know my experience is nothing like yours, but I hope with education, our kids will treat others with more respect.ReplyDelete
Thank you for writing this blog piece, it helps to know im not overly sensitive or Looney for getting upset over getting "death stares". We are a big family with 3girls one of whom is autistic. She commands attention everywhere we go by screaming bloody murder one second and laughing the next. I actually had a grown man "pretend to kick at" my daughter while walking next to the cart in the grocery store. I hope you find many creative outlets in educating people with intolerant behaviour. Hugs to you and Max!ReplyDelete
My daughter has Down syndrome. She is now 13 and has started noticing people staring at her. When she asks, "why are they looking at me?". My response is, "they are looking at you because you are so beautiful." She gives her big beautiful smile smile and continue what she was doing. When I notice someone staring at my child, whether is an adult it another child, I will approach and introduce her. Most times people are relieved by this method and appear to be more relaxed after I ask them if they know anything about Down syndrome. I'll engage them in a conversation to relieve their sense of curiosity while at the same time educating them on how children with Down syndrome are more alike them than different from them.ReplyDelete
I just wanted to let you know that I would stare at Max if I saw him too. Not a stare-glare but a stare because he is ADORABLE! And because he is INCREDIBLE! And because he has so much to teach the world about love and acceptance of people's differences. He is a darling little boy and you are an amazing mother. Thank you for taking the time to educate others about children/ people with differing abilities.ReplyDelete
YES yes yes. Finally a mommy speaking out for all those cocky stare-glares in this world... You are sooooooo right. I just shared your blog. I hear al lot of people saying it must terrible raising my beautifull-pure and closest-to-nature-then-anybody-will-ever-be-daughter because of her multiple handicaps. And the only terrible thing i can think of which was due to her handicaps is infact the stare-glare of her surrounding.. No Worries stare-glares. My kid will Not Infect you nor your lives by acting as a normal human being to her.. thank you for standing up for your kid!! ( and mine )ReplyDelete
Without judgement and maybe some suggestion...I personally do not have a child with special needs...however my entire life I have felt especially drawn to people with disabilities...sometimes however I become so overwhelmed with emotion my reactions may seem awful....many times I have stood in line behind someone with don't kind of disability and prayed that they didn't turn around so they wouldn't see the tears running down my face...tears that I truly can't control...I feel so sad knowing the pain they feel from evil people In the world...I desperately want to grab them and hug them however I know this is an absolutely wrong action because I know they don't want me to feel bad for them....I was at a community pool the other day and there was a mother with her daughter who was in a wheelchair and was paralyzed from the waist down...no one spoke to then the entire time they were there however when it was time to leave I noticed she was looking around trying to figure out how to get herself out and her daughter so I walked over and asked if she needed help unfortunately she had to know I was staring but out wasn't a bad state it was just ai want you to know all people aren't evil stare...she seemed absolutely relieved and even asked if I could keep an eye on her wh ile she went to the restroom...when she left my husband was like please don't cry...I know it seems awful at times but not all star es are bad sometimes people just don't want to cross Abby linesReplyDelete
A stare is a stare. As a single mom of a multiple handicapt daughter I can tell I don't have the time to think about all stares. Besides that it doens't make the staring less shitty if I would knew the background reasons for the stare. It's still a stare. And could be categorized belong the pitty-stares. Not as harsh as the go away, maybe your kid will affect mine - stare. But still a stare we have to handle at the end of the day..Delete
Yeah, stares. My baby was born after a great pregnancy, a normal (but long - 30 hour back labor), and vaginal delivery. I had no epidural, no drugs but Maalox. She seemed fine at birth - Apgars were 8 and 8. Started nursing right away, no trouble latching on at all. She seemed so well, that the hospital needed a control group of "normal babies" for a study they were doing and wanted her in the group. Whatever. Long story short, she started exhibiting unusual posturing, had retained primitive reflexes (Moro, etc), and did't come close to hitting the developmental milestones on time. The pediatrician assured me that I was "just a nervous first time mom". I told him to kiss my ass,a baby should be rolling over by 9 months, right? Right. Making the rounds of pediatric neurologists. Like a fucking Chinese menu, she had 1 symptom from Disease A, one from Syndrome B, and 4 or 5 others. All her labs, X-rays were normal. WTF, right? Eventually we got the garbage can diagnosis of "developmental delay".....on to ST, OT, PT, etc. The usual Jewish guilt was laid on me heavy. "You were her incubator for 9 months, it's something YOU did" said my (then) husband. Stares, stares....she looked so "normal" but wasn't. On the slide, I had to be 1 mm right behind her because of her proprioceptive problems - she was likely to just walk off off the ladder. "You're being an over-protective mother" said some bitch in the playground. "You have to let her fall, she'll be okay". "How about if i break your nose, bitch, YOU'll be okay, too, so STFU" said I. On and on. What I still wonder about, is that there was a girl at work who was pregnant when I was. She got NO prenatal care, lived on Cheese Doodles, beer, and smoked a joint daily. When she went into labor, her boyfriend (who was an assistant pimp, I guess like a journeyman), dropped her off at the lobby of the county hospital and said to call him when it's time to come home. OK ---- sat in the sun, ate fruits and veggies, did my Lamaze, no drinking or drugs, breastfed her for TWO AND HALF YEARS (because she was so tactiley defensive she couldn't tolerate any skin to skin contact with me). So why was this other chic's kid climbing out of the crib at 10 months, and mine couldn't sit up? Anyone know?????? My daughter is in her 30's now ----- and I still have that Jewish guilt. Shit.ReplyDelete
I didn't become an adult too long ago now but the idea that adults would ever treat a child like this is sickening. I still feel horrendous for how I treated special needs kids with my stares and confusion when I was in 6th grade and that was 10 years ago. Any adult, especially one with a child, who can't see the beauty of Max, despite limitations, is a fucking dick.ReplyDelete
I love your posts - As another special needs mom, thank you for writing words that I swear I could have written as well. It's so lonely in the special needs world sometimes and how wonderful to know others feel the same way about some of these issues. Re: the stares, sometimes I am guilty as well, but only because my daughter is borderline CP and I wonder sometimes if other children who exhibit similar symptoms/walking tendencies ALSO have what she has. Do you know what I mean?ReplyDelete
I will admit that I watch...I don't like to call it a stare, but it could appear that I am watching for a while. I volunteered all my free time in high school to integrating and planning events (pool parties, and fun lunchtime activities) for the kids in the special needs program (sidenote: I think the integration of these special children into our schools does a lot for acceptance and understanding among their peers) So, often I am actually watching the parent to offer a supportive smile and find a window to interact with them and introduce my child to theirs so that they can play together. If I am alone I like to offer a supportive smile to both. I truly believe that it takes very special people to raise such amazing children, so the last stare that should be added is the stare-smile of respect :) It may be the rarest, but hopefully it will catch on and the generations to come will make it the most abundant.ReplyDelete
Much love and respect!
We made a button for my daughter with profound CP:ReplyDelete
"Keep Staring. I Might Do a Trick."
My favorite is when kids stare for so long they run into a tree or wall. That's happened more than once, I'm sorry to say.
The last time someone stared at my daughter, I asked them "are you okay?" and the woman was taken aback. Then she said yeah, I am okay. People like that have the issues, not our kids.ReplyDelete
I get that its hurtful. But we need to move on or were guilty if similar judgment. Sometimes we don't know what people really think. The stare that bugs me is the condescending look of "I empathize" uh sure as long as he's not your responsibility.ReplyDelete
I may be totally oblivious but I rarely notice people string at my son. Perhaps it's a defense mechanism. I tune out a lot. My son is 17, has autism, is nonverbal he also has epilepsy. There would be a lot to stare at. Let them. He's awesome. Maybe its because I live in the liberal sf bay area where there's always someone odder than the last. Just avert your eyes at the four root high mowhawk. I just don't notice.
For me focusing so much attention on the starer isn't worth it. We can misinterpret their facial expressions. What are they thinking? I don't know that we know every time. I've been accused of having little affect in my expressions. When i was a kid, people someyimes thought I was staring when I wasn't. So, if someone thinks I'm staring, but I'm not, and asks me if I'm OK, I might just respond equally. "I'm fine. Is my zipper down? Do I have food on my face?"
We just don't always know. Neither do they.
I have two disable boys jack and max 15/13.everyday is a struggle to go out,but I must my boys have the right to shop and see things and go to the park,but I must add it hurts when I get asked are they mine or the nasty comments from people who have known them all there life like they don't do much or ain't changed.my boys have glodle developmentle delay blanket term I know.I wouldn't change my boys for the world but id change the world for my boys if I could.you must excuse the spelling and grammar as I write this through tears.what I have noticed is having the boys isn't the hard part its other people and outside interest that makes this life so much harder.I'm just glad my boys will never understand what's going on.if they are happy I should be ......right ???.ReplyDelete
I came across your blog post when I was searching for a post I wrote.ReplyDelete
I would like to add one thought: not everyone staring at your child is doing so out of derision. There are many of us who would do anything to be in your shoes.