sick and tired of all the stares

[scottsod]

I just have to vent about something that is really getting on my very last nerve and my DH (who's name this is) told me to come on here.

I have 3 DS , 9, 2, 1 and they all have special needs. My oldest being the most involved with CP and Autism and the 2 year old with PDD, Apraxia, and a sensory disorder, the little one with a feeding disorder and a speech delay.

This weekend we went to Great Adventure in NJ where we live and have season passes (which by the way we will probably never buy again because of the bad service we have gotten from almost everyone we have some in contact there, i guess we are just Disney spoiled )

well I am not sure if it was the park that we were in what but every time i would transfer my kid from his wheelchair to a ride or even just walk through the park people would just stare. Now I KNOW my 3 kids are gorgeous but on this day it was out of control. But it just wasn't the stares which I think i hate the most, it was the people that ran the rides that have asked can he sit up, or whats wrong with him, or the best was when they said right in front of him that he can't go on a ride cause he is crippled and he can't close his own belt but they were going to let on my other son who is 2 on that cant buckle the belt either.

It takes all the Disney might in me not to turn around to these kids who are old enough to know better or to the adults that should already know better to STOP LOOKING AT MY KIDS!!!!!!!! I can't take it anymore, the awe's and the poor thing looks and the oh my god that kid is out of control looks when wither my autistic or PDD kid throws a fit. I don't know the right thing to say to these people who are being so rude that my oldest notices. And let me tell you if he is noticing it is bad

this weekend it got so bad that my husband actually said something to this kid. We were at the run away train and i was picking my 65 lbs kid out of his chair, who stiffens his body when he gets excited and I had to carry him up a huge flight of stairs because this ride has no access my husband after i walked away with my very heavy very excited kid turn to this young teen aged kid and said "it's not polite to stare your parents should have taught you better" now i don't think i would have done that but i was thinking it in my head and wished i had the nerve to do it. Nothing came of it because the kid just looked at my husband and and then walked away. But that just goes to show you that we have had enough. I want to so badly walk over to who ever is looking and say "I know what their damage is what's YOURS?" We are even going to get t-shirts for my 2 older DS's that say "I have Autism what's your problem" for the flight to Disney in Nov. just so people will read their shirt and maybe will under stand why my kid is flipping out or at the very least not stare at them like they are freak shows.

thank you for letting me vent but i was just done and had yell somewhere other then at my poor husband that just sits there and lets me yell at him

if anyone has any ideas on how to handle such a situation please let me know, I'm all "EARS"

 

[minkydog]

I hear you loud and clear. My youngest son Christian is 13 now and very low functioning. He too stiffens up when he gets excited, and he hoots and flaps and drools. Thankfully, he doesn't notice the stares but we do. Most of the time I just let it go. My older kids(15 &22) are more brazen--they'll just say" Whatteryou lookin at?"

Last summer we took Christian with us to Yellowstone. It is somewhat handicapped accessible, but there were still places where we had to carry him, wheelchair and all. You can't believe the looks we got--one person even tut-tutted behind us and said"Why would anyone bring a kid like that here?" Maybe because kids like that need to see, smell, taste and experience places like Yellowstone even more than your normal kids??

Ah, well. He ain't heavy, he's my baby...well, he is heavy actually, 120-lbs. But he'll always be my baby Sorry you had to encounter a bunch of morons.

 

[pampam]

I saw a tee shirt once "Questions cheerfully answered, stares cheerfully returned". I know what you mean. I just have to remind myself, they are just curious. They see something unusual, and don't mean to be rude. It hurts none the less.

 

[alizesmom]

I wish I had the cure-all for the stares and dumb questions. Most are out of curiousity but that doesn't make it any better. Luckily my two are unaware though I think at some point my daughter will know what's going on. Sending you hugs and "Disney" glasses (when you wear them you only see pixie dust and enchantment). Karen

 

[Mskanga]

Why am I not surprised about the service you received in great adventure ?
I am sorry that people were so rude to you. HUGS.

 

[angelbearmom]

I hate the stares too. I guess I've gotten used to them over the years after 2 kids in wheelchairs of my own plus all the kids I've looked after over the years with special needs. With my daughter it was often really bad, or maybe I just noticed them more (she's been gone for over 8 years). A number of times after someone was really rude I'd walk away and talk to my dd in a not too quiet voice and say something like "hey Kayda some people just weren't taught any manners, were they" and walk away. I've gotten better at just ignoring stares and getting on with our day. I'm happy to answer ?s if people want to ask them. I think you have to develop a thick skin. Mostly I'm very proud of my son as I know how far he's come in the last few years. That over rides any disgust over other people being rude. They don't know how wonderful it is that he's enjoying being out even if he's a bit loud.

Just know you're not the only one that has to cope with staring and rude people.

 

[OneLittleSpark]

I'm so sorry to hear you're having a rough time of it; it sounds like you're meeting more than your fair share of jerks.

This thread, which was running a few years back, may be of use to you:

http://www.disboards.com/showthread.php?t=15451&pp=15

One of the ways I personally deal with the stares, is to have my wheelchair decorated up. It gives people something positive to focus on, and it doesn't feel so much like they are staring at me, because they're too busy looking at the pretties . They're are plenty of ways to decorate up a chair, and it doesn't have to be too 'girly'. Anything long and thin, like tinsel, ribbons, coloured string etc can be wrapped around the spokes and frame, and pictures or chair covers can be used to brighten up the seat. Try not to put on decorations that are too permanent, as re-decorating the chair is a fun game to play over and over again!

I know some people on here have printed up 'business cards', that describe their child's invisible disabilities. This is often used for kids with ASD, and can be given to people staring or tutting at a meltdown (if you have the hands free to give the cards out, that is). Just a simple explanation of what autism is, and how it affects your boys, could go a long way to changing attitudes. The T-shirts are a good idea too. I've also heard of people having T-shirts saying "I know I'm gorgeous, but do you have to stare?".

Another thing I do with starers, is to make I contact and give them a big smile. Either they return it, and it's clear they're not trying to be unkind; or they get confused and look away! Either way, it's a win win!

I know how hard it can be to notice all the looks and stares, but try to focus on the positive stuff. Yes, that is MUCH easier said than done, but it will hopefully help ease the sting a bit. I reckon that having a disability, or having a loved one with a disability, allows you to see both the best and the worst in humanity. Sadly, you will run into the jerks, idiots, narrow-minded biggots; but I reckon that for every one of them, you'll find ten people who will go out of their way to help, by holding a door, offering some help, or just giving you a friendly smile when you need one most. Keep your chin up, and remember that no matter what a few idiots might think, you have three wonderful, special kids!

 

[Earstou]

Have you seen the No Pity Shirts? http://nopityshirts.com/

 

[Tissa]

I've just developed tunnel vision when it comes to going out with my kids. They are the only people I notice. Screw the rest.

 

[mechurchlady]

People stare at anything that is new to them or that they seldom see like disabled people, people with religious clothing, other races, other colours, way tall people, way short people, anorexics, fat ladies, and punked out kids. It is natural for people to stare and ask dumb questions about something they have never seen before or is just beyond their comprehension.

I heard a person with a lip ring say that people asked her if it bothered her or hurt. I have had people stare at me but I have atrocious table manners. I jsut stare back or look behnd me. Like omg what is behind me that is so interesting. I find that most people are just curious and when informed or their curiousity is sated will stop staring and move on.

As for the park I would be writing and complaining about lack of eduction of staff on how to deal with the public and the lack of accessibility for rides and other stuff. As for the remark in Yosemite I would have asked them why they felt he way they did. Ignore, educate or belittle are your options. It is hard being different and I am different. Enjoy your kids and try hard to focus on them instead of others because the people who stare will walk away unscathed while you are upset by the staring.

Hugs and chocolates
Laurie

 

[loriandmatt]

People stare at anything that is new to them or that they seldom see like disabled people, people with religious clothing, other races, other colours, way tall people, way short people, anorexics, fat ladies, and punked out kids. It is natural for people to stare and ask dumb questions about something they have never seen before or is just beyond their comprehension.

I heard a person with a lip ring say that people asked her if it bothered her or hurt. I have had people stare at me but I have atrocious table manners. I jsut stare back or look behnd me. Like omg what is behind me that is so interesting. I find that most people are just curious and when informed or their curiousity is sated will stop staring and move on.

As for the park I would be writing and complaining about lack of eduction of staff on how to deal with the public and the lack of accessibility for rides and other stuff. As for the remark in Yosemite I would have asked them why they felt he way they did. Ignore, educate or belittle are your options. It is hard being different and I am different. Enjoy your kids and try hard to focus on them instead of others because the people who stare will walk away unscathed while you are upset by the staring.

Hugs and chocolates
Laurie

Wow - i loved your post. i agree with your first paragraph....sometimes a casual glance and not a glassy unbroken stare is just a natual reaction to anything different or interesting. there is a fine line that changes with every different situation where that casual glance turns into something rude.

Ignore, educate or belittle are your options.

i think this statement is the most simple yet prolific part of your post. so true. you can't change what strangers will or won't do, but you can change how you let it impact you.

on a lighter note, my neighbor who has a son with DS frequents the no pity website often. his favorite one is ""Keep Staring ... I Might Do A Trick!" he even repeats that to people he catches staring at him.

for the OP, i am sorry you had such a bad day. a question for you (and others on this forum) that i hope you will not take offense to. i was taught that it was even more rude treat someone differently. if you would normally glance over out of interest or concern at a child that seemed distressed or a person obviously struggling with a disabled child....you are being rude by pretending they aren't there. it is more polite to treat them the same way you would anyone else...look, smile, offer assistance if the situation warrants. look away and keep moving if they don't welcome your offer.

is that philosophy wrong? honestly i want to know what others with disabilities or children with disabilities think on this one. i don't want to be passing that teaching down to my children if it is offensive.

 

[SandrainNC]

I'm so sorry that happened!!!

A few times I have just said "cute, isn't he???" and they quickly walk away.


Sandra

 

[Piper]

For every bad reaction, there are many good ones---most of them we don't hear.

Before parent orientation at school the other night, I sat on the steps of the stage waiting until time to start. A parent sitting on the front row turned to the parent sitting beside her and said, "Boy, I hope my kid didn't get that teacher. I don't want him to have a cripple." The parent sitting next to her replied, "I wish more people had your attitude. Then me and about 20 other families wouldn't have had to line up an hour or so before the doors opened on the first day of registration trying to get in her class!" (I had taught her two older kids.)

I just smiled to myself & I'm thankful to say the first "lady's" kid wasn't in my class!

 

[KPeveler]

I try to come up with weird or funny things to say when people say rude or invasive things...

for example, when i use my forearm crutches, i can go pretty fast... I had a man ask me "do you really need those?" rather than getting mad, I raised them over my head and said "Nope, they're my antenna to the mother ship!!" that guy backed away very fast.

If a child asks a question I will always answer. However, rude adults saying "whats wrong with YOU?" dont deserve polite answers... coming up with funny (but not rude) things to say in return usually makes me feel better!

 

[jennydep]

for example, when i use my forearm crutches, i can go pretty fast... I had a man ask me "do you really need those?" rather than getting mad, I raised them over my head and said "Nope, they're my antenna to the mother ship!!" that guy backed away very fast.

I love that!!!!

 

[minkydog]

for example, when i use my forearm crutches, i can go pretty fast... I had a man ask me "do you really need those?" rather than getting mad, I raised them over my head and said "Nope, they're my antenna to the mother ship!!" that guy backed away very fast.

 

[ireland_nicole]

for the OP, i am sorry you had such a bad day. a question for you (and others on this forum) that i hope you will not take offense to. i was taught that it was even more rude treat someone differently. if you would normally glance over out of interest or concern at a child that seemed distressed or a person obviously struggling with a disabled child....you are being rude by pretending they aren't there. it is more polite to treat them the same way you would anyone else...look, smile, offer assistance if the situation warrants. look away and keep moving if they don't welcome your offer.

is that philosophy wrong? honestly i want to know what others with disabilities or children with disabilities think on this one. i don't want to be passing that teaching down to my children if it is offensive.

I realized that your question hadn't yet been answered. I can't speak for everyone, but for us, I have no problem w/ someone offering help if I obviously need it, or asking an honest question, or glancing over. There's a big difference between that and the kind of rude stares, eye rolling, whispered comments, outride rude comments, etc. I think teaching your children to respect and be considerate of others is a good thing.

Love the crutch comment; I have another one I learned from a fellow Dis-er and have since used. When someone makes a comment about keeping my kids on harnesses "leashes" (both are runners, and esp. in crowded places need to be kept in some way tethered to me to be safe) I now respond with, Yep, we had to start doing this after he/she bit the mailman People look at ya like you're nuts, but at least they're usually speechless for a few minutes

 

[alizesmom]

I now respond with, Yep, we had to start doing this after he/she bit the mailman

That is the funniest thing I have heard in a while. Karen

 

[anewvance]

I have been getting this with my son since he's started wearing his fillhaur collar for his severe torticollis, muscle issues in his shoulders and scoliosis. Everywhere we go I feel like my poor son is on parade... I would say it's half and half in terms of rude people and friendly people. I don't mind when people ask what is wrong with him politely and I get it often but when people say "what did he break his neck" or "whats the deal with him" or just nasty looks I get annoyed.