PDA

View Full Version : your opinion or how to answer ? from my kids regarding disablities and "differences"


Spinning
03-11-2001, 01:27 PM
Hi, didn't know this board was here. GREAT! anyway here is my questions. First off I have worked the past 15 years as a physical therapist assistant mainly with our special needs population. So I am very familar with different disabilities, etc...
I feel very strongly when my daughter ask a question about some one I should answer it then and there not hush her up and try to pretend I didn't hear. At this point she is never rude. She is only 5. At times I wish I could refer her directly to the person. Example, we were at City walk making dinner ressies and the lady had an amputated arm. I didn't even notice, but DD did and asked and wanted me to look. I just said to her Rachel, as I have told you before all of us are created different. I really didn't know what to say, I didnt' want to say due to an accident don't think she is ready for that. But I really wanted to walk back to the ressie place and ask the girl how she would have liked me to handle it. I know people with disablities do get stares, I am guilty of it too but it usually because I find their equipment neat, different areas use different stuff. So what is your view point with children who are curious by nature and generally want to know?

http://www.geocities.com/Heartland/Ranch/1955/coolmick.gif

teri
03-11-2001, 02:30 PM
We have had a couple of great threads on this issue. Here are links, and I am sure more people have comments.
Constructive ways to deal with staring (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=tpc&s=40009993&f=38009194&m=433090001)

Explaining disABILITIES to children (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=tpc&s=40009993&f=38009194&m=544090031)

Nice to see you here! :)

http://www.wdwinfo.com/sites/family/galc.gif
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

Michigan
03-11-2001, 04:12 PM
I know that when someone tells their child that my oldest DD is in a wheelchair because she broke her leg that really bugs her (she's 11). She doesn't mind when someone asks her why she needs a wheelchair she is fine telling them she has Spina Bifida and her legs don't work. On the other hand she has had more then one person both child and adult ask her what's wrong with you to which she replies nothing what's wrong with you.

She is just now starting to get bothered by people who stare especially the ones that turn around and almost walk backwards so they can get a good look. This was a real problem on our last trip to WDW in AK. Everywhere we went people turned around. I told her probably because people see both her and her sister (age 3) in wheelchairs they probably think they were in a car accident.

I'm sure when most people see our own Wheelsie they assume that she uses a wheelchair because she is missing part of one leg when in fact she has always used a wheelchair because she to has Spina Bifida and didn't lose her leg until she was older.

I often think to myself isn't it ashame that our Country needed a law to tell people how someone with a disability should be treated.

Puffy2
03-12-2001, 04:16 AM
Personally , I think it is best to explain to our children that people are different and some people need a little more assistance (in the way of a cane or wheelchair , hearing aid, etc...) to enjoy all the things that everyone else does. And that these people may need the assistance because of a birth defect or accident or illness.
I wouldn't put a stranger on the spot by refering the question to them - when my friend and I went to Disney and we used a scooter (she has lupus) we had a blast and this was the first time in a long time for her to have fun - a question about the scooter wouldn't have been the end of the world for her, but it would draw attention again to her illness (something we were trying to forget for a few days).
Hope this helps.

SueM in MN
03-12-2001, 05:57 AM
My older dd was not immune to asking why other people used wheelchairs, canes, etc. just because her sister used a wheelchair. When she was little, she just thought all people in wheelchairs had CP because that's why her sister uses one. I always just answered her simply, "I need glasses to see and some people need wheelchairs to get around." We didn't speculate on why that person in particular needed a wheelchair, but I did let her know there were many reasons why people use wheelchairs.
I am sometimes guilty of staring myself, especially at WDW. If you catch me staring, I'm looking at your equipment. I've seen some pretty neat stuff at WDW that isn't usually seen here at home.‡

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

alasknmom
03-16-2001, 09:33 AM
I have extremely short arms and one halloween when I was feeling kinda evil *lol* I told the girl it was my halloween costume "do ya like it??? did I do a good job???"
My mom couldnt believe I said this and the poor kid was like "wow!! you are amazing". I did explain it to her tho :D

Rachel in Alaska
Mom to Joey 9
Taking him to Disney for the first time March 23, 2001

SueM in MN
03-16-2001, 04:47 PM
That is funny, alaskamom.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

Wheelsie
03-16-2001, 09:22 PM
thanks Sue for helping me esge my way into this topic...I was pleased you did :)

Yes I do have Spina Bifida and yes I do have only one leg (killer memory Sue LOL) But I have been in this darn contraption all my life...and have only been an amputee the past 4-5 yrs....Im bout to turn 27 in a week...Geez it creeps up on ya fast don't it? LOL

I know I made note of this item in a post and I can't find it....but I once said to someone who'd posted not too long after my having a HORRIBLE handi incident....and I beg it of you now...


Under NO CIRCUMSTANCES do you punish your child for making note of a handi individual...

I know you, yourself probably wouldnt as you work with the community...

But I tell you this did happen to me... One day as I was going into Jack in the Box for lunch a young girl no more than 5 asked her mommy why was I in that? She didnt know what to call it and I understood....her "Mother" slapped her with me watching...altho she didnt know I saw out of the corner of my eye.....I was completely devistated as I am talking about it many months later....

That Little girl didnt deserve to be slapped for being curious.....I could see he mother getting upset if she had made fun..heck Id have wanted to run over her (kidding)..... but for her to have slapped her... NO DICE!!!!!!!

So basically what Im asking of you... is let your child be curious...let your child either ask the questions of you...or even give them permission to walk up to us and ask....You'd be suprised how receptive I can be to a respectful and polite inquiry from a child or even an adult for that matter! :)

Just don't harm your child in the name of embarassment... I still well up with tears thinking of how that child must have felt and how she might have some resentment toward those she meets because of the incident...

Thank you

*gets down from her specially ramped soapbox*

Wheelsie Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)
and
DisneyTips (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=87009194)
wheelsie@mail.wdwinfo.com

http://www.wdwinfo.com/sites/wheelsie/yyc_mc.gif http://www.wdwinfo.com/sites/family/dischat.gif

Spinning
03-18-2001, 03:55 PM
Thanks everyone for your thoughts and info! Wheelsie I couldn't and would ever punish my child for asking a question. That lady had some serious problems. I would say fear too. Shame..Life offers us so many learning lesson of acceptance and so many people refuse to learn and open their eyes. I think my main problem is I am so "matter of fact" about disabilites that sometimes I worry it may not sound right when I talk to my daughter. I try very much to explain but I think it is when I am not sure of the reason why or if I know the reason but it is the harsh reality I find hard. Such as a spinal cord injury or brain injury. Even behavor problems Social/emotional problems. Does that make sense? Use of a wheel chair, crutches etc that isn't as hard. And she can accept my answers. I guess you just take it as the questions come and hope to raise loving and caring children.
Again thanks everyone. I got tons of info from my post and the others on staring!

http://www.geocities.com/Heartland/Ranch/1955/coolmick.gif

Wheelsie
03-18-2001, 04:36 PM
Im sure if you take great care of your children...as Im sure you do... and DO take each question as it happens not really worrying or anticipating the next all will be well! :) If your child meets people in malls let them walk up and ask if they feel the urge..dont MAKE them...just let them :) It will make everyone happy and more comfortable in the long run :)

Wheelsie Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)
and
DisneyTips (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=87009194)
wheelsie@mail.wdwinfo.com

http://www.wdwinfo.com/sites/wheelsie/yyc_mc.gif http://www.wdwinfo.com/sites/family/dischat.gif

SueM in MN
03-18-2001, 06:25 PM
I think you've got it right, Spinning. You answer your kids questions as they come up. Sometimes you have to say "I don't know". One of my older DD's favorite sayings when she was about 2 and 1/2 was "We don't kn ow those things." If we saw someone in a wheelchair and she wanted to know what happened to the person, I would say something like "Some people have accidents so their legs don't work the way yours do and some people are born that way."

I always keep in mind the story of the little child who asked mom "Where did I come from?" Mom took a deep breath and went into a long explanation of conception and birth. Then she asked the child if he had any questions. He asked again "Where did I come from?" and the mom asked him what part he didn't understand. The boy said that his friend came from Ohio and he wanted to know where HE came from.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

going2wdw
03-19-2001, 03:51 PM
I spent last week with my brothers family. Their 5yo DS has CP & microneuplisy (sp) and is very disabled. He functions at about 3 months mentally & physically. Before our trip I told my 9yo & 6yo DDs that he was like a baby and was only able to do things like their new baby cousin who is 2 months old. My 6yo DD asked my SIL about mid-week why since he was 5 he couldn't walk or talk and SIL simply told her he was handicapped because of the CP & microneuplisy and couldn't do those things and probably will never be able to.

My SIL made the comment to me that she would rather people ask questions than just stare. I'm sure not everyone feels that way but I imagine most would rather a honest open question.

I'm hoping they will be able to go to WDW with us someday and I don't know if he will make the trip or remain at home with a babysitter. If he does I know we'll be here for help planning how to make his days as comfortable as possible.

Janette
WDW http://www.wdwinfo.com/sites/family/daisy.gif
Offsite ? - 1976, Vistana - 1988
Vistana/Contemp - June 2000, OKW - Feb 2001
BWV - DIS Convention Nov 2001
Disneyland - 1998

SueM in MN
03-19-2001, 08:06 PM
You sound like a good sister, goingtowdw. Your post brought up another good point: kids will keep asking the same questions over and over again. It's almost like they are checking to see if the answer is different if they ask again.
I would rather people ask about my dd too. If they ask her, I explain that she can underatnd very well, but she can't use her mouth to talk with them. If they ask me, I will usually change their question into one she can answer herself.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

Wheelsie
03-19-2001, 08:58 PM
I gotta second this one!! :)

Children ask me all the time..."Lady what happened to your leg??" (as some of you may know amputaion from malpractice) I answer them that "the Dr took it....."some then say "but why??" I smile cutely as I never have figured how to answer this one with a non joking response, and say..."I think the Dr needed it a little more than I did" :D I know its corny but it seems to make them feel better :) If anyone has any suggestions how I can answer this with a NON joking answer, so that the real reason can be understood by the lil tykes, Id appreciate some input LOL :)

Wheelsie Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)
and
DisneyTips (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=87009194)
wheelsie@mail.wdwinfo.com

http://www.wdwinfo.com/sites/wheelsie/yyc_mc.gif http://www.wdwinfo.com/sites/family/dischat.gif

ElaineM43
03-20-2001, 01:36 AM
Along with varied other things I've done in my life, I also have worked with children extensively. It's a normal thing for them to be curious and I will always welcome anybody approaching me to talk about the problems I have and what equipment I have to use.

I have a 5 year old Grandaughter who, for now, is satisfied with the definition of Grammy having "owwies" in her bones. She knows I'm different in mobility then other people but, also knows that I'm not in pain all the time and the Doctor takes good care of me. There will be a time in the near future that she will ask more and then we will get into simplified discussions of osteoporosis and exactly what caused this in me so she doesn't think this is something she can expect also (at least we hope not as there are medications now to help prevent this happening).

I have always welcomed children to come up to me and if I happen to be on a cane that day, I ask if they would like to hold it. If I'm on crutches, they can touch them, on a scooter...a short ride with Mom or Dad's permission. It takes the mystery out of these things and since a child relies on touch to calm their fears AND curiousity most of the time, no harm done and everybody goes away with a warm feeling.

Elaine
When you wish upon a star...
http://disneyclipart.simplenet.com/Characters/Mickey_Mouse/mickey04a.gif


http://hometown.aol.com/elainem43/index.html

SueM in MN
03-20-2001, 04:42 AM
LOL at your answer Wheelsie. That is so funny. Seriously, I can't think of another good answer for you to give. I guess if it seems to satisfy the kids and not upset them, it's a good answer.
Kids also assume that whatever they see might happen to them. I am missing both of the toenails on my big toes. My oldest dd was used to seeing my toes that way and it was an object of curiousity for her to show her friends when she was little. She didn't know what happened to my toenanils, but she sort of figured that most moms lost theirs. She knew dads didn't, since her dad still had his. We had quite a discussion one day when she finally asked me how old you had to be before your toenails came off. I have to say she looked kind of relieved to know hers wouldn't just fall off one day byb themselves.ø

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

mhopset
03-23-2001, 07:35 AM
I would much rather someone come up to me and ask why I ride a scooter, than stare or make comments like "I wish I had one of those to ride around on all day".

I think we need to take on the innocense of children. If you wonder why, just ask, then you won't wonder anymore.

Nanajo1
03-25-2001, 06:50 AM
When I am in my power chair grocery shopping etc and I see a child eyeing my wheels I smile at her and ask the mother/dad if I can talk with her. I say have you ever seen an elecric wheelchair? They usually say "No" I say my legs are not very strong and this helps me get aroung easier. I would rather be walking but I can't so this wheelchair is a big help for me so I can do my shopping and other errands. That usually satisfies them. I hope that being proactive helps with the understanding the disabled doesn't mean unable or unapprochable.

Nanajo DVC 8/98

Offsite 5/78
Contemp 11/85
BWV 3/99
OKW 11/99
BWV 3/01
OKW 11/01

D,L and K's Mom
03-25-2001, 07:35 AM
After reading all of your stories and comments I was reminded of a little incident that happened last month to us. As a little bit of backround my 11 year old son David had a stroke when he was very very young. David has no real visible signs (Except his face droops a little tiny bit and he sometimes has to use a wheelchair if he is having a day of seizures)David does however have a lot of other problems as a result of the stroke that are not visible....he can't talk or communicate, he wears diapers and he has alot of autistic tendencies and he likes to chew on chew toys to calm himself. Ok, now that you have that, on with the story. We were at the dentists office waiting for our turn, David was making his happy noises (gleefully giggling and laughing) he was also happily rocking back and forth as he likes to do chewing on a chew toy. I heard the little boy next to me ( approx 6) ask his mom,"What is wrong with him". His mom proceeded to "SHUSH" him. A few minutes later he asked again and was "SHUSHED" and told to be quiet. At this time I leaned over to the mom who was looking very uncomfortable and said ,"It's Ok". I proceeded to explain that David had had a stroke and explained what that meant and how now David is "Special". The litle boy looked at me and said ,"Ya but what is wrong with him". I was bewildered and replied,"I am sorry I don't know what you mean" He replied, "What's wrong with him doesn't he know this is the DENTISTS." He just really wanted to know how anyone could be so happy waiting for the dentists I just started to laugh and laugh....Out of the mouths of babes huh?????

teri
03-25-2001, 08:24 AM
hehehehe!!! :)

Wheelsie
03-25-2001, 12:01 PM
OMG!!!! D L I love that one!!! I gotta tell that one to DH when he gets home...and he thinks my lost leg stories are a gass LOL

Wheelsie Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)
and
DisneyTips (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=87009194)
wheelsie@mail.wdwinfo.com

http://www.wdwinfo.com/sites/wheelsie/yyc_mc.gif http://www.wdwinfo.com/sites/family/dischat.gif

ElaineM43
03-26-2001, 09:08 AM
Thank you for a smile today. That story is soooo cute I couldn't help but LOL.

:)

Elaine
When you wish upon a star...

SueM in MN
03-31-2001, 08:57 PM
That is a funny story. Thanks for sharing.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

yoopermom
04-02-2001, 08:13 AM
I let DH and DS(6) go to Home Depot alone (always a mistake), and while DH was staring entranced at a high-flush toilet(!), DS noticed a man in a wheelchair with only one leg. DH tried to distract DS, but the man was very kind and said that it was alright. He told DS that he had been in a car accident many years and had lost the leg because he had not been wearing his seatbelt and had been ejected from the car. He asked DS to promise him that he would always wear his seatbelt no matter what, so that something bad like that would never happen to him. (Remember I only heard this second hand, but DH said the man was extremely kind.) So, when DS and I got in the car yesterday, DS put on his seatbelt and told me, "I'm never going to forget to put on my seatbelt now, because that man will have to wait until he goes to heaven to be able to run around, like he used too." (How's that for typical 6 year old logic?) I just really appreciated a stranger taking the time to make such a strong impression on DS. Thank you whoever you were!

teri
04-03-2001, 10:02 AM
check out this post on the CB...
A mom's response to 3 kids who were wondering about her son in a wheelchair (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=tpc&s=40009993&f=55009194&m=3580958831)

http://www.wdwinfo.com/sites/family/galc.gif DIS disABILITIES Discussion Board FAQ under construction! (http://www.wdwinfo.com/sites/teri4/DISindex.html)
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

going2wdw
04-03-2001, 08:24 PM
My 9yo DD came to me last night upset by an incident at school. During art class someone at the table started talking about a man they saw somewhere that didn't have a leg. They said how gross that was and made jokes about what the person couldn't do. As some of you know from previous posts she has a cousin about her age that doesn't have a leg. She didn't understand how someone would find this gross or a laughing matter. She knows that her cousin lost his leg to no fault of his own but to save his life from cancer; he is same to her as before; can do almost everything other kids can and has some talents that other kids don't have (He can do wheelies in a wheel chair & hop really well). She isn't a very assertive person and she said nothing, we talked about ways to handle times when people say things you don't agree with. Hopefully next time she will get the courage to speak up but I think this does show that children left to their own devices can misunderstand disabilities and turn them into a barrier.

Janette
WDW http://www.wdwinfo.com/sites/family/daisy.gif
Offsite ? - 1976, Vistana - 1988
Vistana/Contemp - June 2000, OKW - Feb 2001
BWV - DIS Convention Nov 2001
Disneyland - 1998

teri
04-03-2001, 08:43 PM
ouch!!!!
It is hard to take a stand when others are joking about something you do not think is funny...

http://www.wdwinfo.com/sites/family/galc.gif DIS disABILITIES Discussion Board FAQ under construction! (http://www.wdwinfo.com/sites/teri4/DISindex.html)
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

Spinning
04-06-2001, 01:59 PM
Everyone thank you so much for all your thoughts and the stuff you have shared! Wish more people could hear your messages.
My heart goes out for the women with the child who sniffed inhalents. God Bless her. That hits home for all of us! Communication is so important! I am glad I posted here! You all seem like wonderful folks!

http://www.disneyclipart.com/images23/Characters/Mickey_Mouse/mickey44a.gif

SueM in MN
04-06-2001, 06:56 PM
I think one of the problems in life is that no one thinks the bad things in life will happen to them, they only happen to others. People who make fun of or make life difficult for people with disabilities don't realize that all it takes to become a person with a disability is a bad decision (theirs or someone else's), being in the wrong place at the wrong time or just bad luck.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

Mskanga
04-17-2001, 11:31 AM
I'm very lucky to have two healthy children but my problem was always I did not know how to handle to explain to my children if they ever asked about someone's disabilities. I'm not the kind of person who would shush them or "cover" the reason , I simply tell them the truth.
I have never been put in the position where they asked me why someone was on a wheelchair or anything like that but if the situation ever comes up I want to be honest and not hurt other people's feelings.
I hope I don't offend any of you with anything I say but like I said , I'm learning a lot from you.
Thank you for teaching me how to handle this with my children if the time ever comes up.

SueM in MN
04-17-2001, 02:12 PM
Thank you for your nice comments, Mskanga (I couldn't copy that, so I hope I got your name right). I'm sure you will do just fine when the situation comes up. You already have sensitivity and that's the part that helps you answer the most.
:)

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

rwrocksme
05-16-2008, 06:30 PM
Personally , I think it is best to explain to our children that people are different and some people need a little more assistance (in the way of a cane or wheelchair , hearing aid, etc...) to enjoy all the things that everyone else does.

Oh, Puffy!!! That is the best way I have ever seen anyone put it!!! That is my answer from now on!!!


I am sometimes guilty of staring myself, especially at WDW. If you catch me staring, I'm looking at your equipment. I've seen some pretty neat stuff at WDW that isn't usually seen here at home.
SueM in MN

Me too. I was at a concert once and a guy had light-up wheels on his chair. I was totally jealous...mine just has black rubber. I want to pimp my chair, too!

Now, what gets me is adults who stare. They know better. So, I have a system:

1) Smile
2) Smile and wave
3) Smile and greeting
4)Death glare
5) Rude hand gesture

I have yet to get to #5. Number 4, however...:sad2:

mykidsintow
05-16-2008, 07:59 PM
We had a recent incident at a homeschool gathering. One of the little girls (4ish) said something about Julia not being able to walk. Of course Julia heard her and got upset and ignored the kids the whole time, stayed with adults. So the next time Julia had her walker and was running all around playing chase and I was talking to the mom. I told her Julia was upset about the incident and she asked me how I recommend her talking to her girls about it. It opened a big conversation for our homeschool group.... Of course the mom apologized up and down. I told her not to worry about it! I try to teach my kids how to handle situations. We homeschool for many reasons, but reality is that life isn't always going to be peaches and cream and she has to learn that too. Julia and that little girl are great friends now!

I told them that my kids are taught that everyone is different. Different isn't bad... if we were all the same life would be boring. Its good some kids have brown skin, some kids use wheelchairs, some kids have cleft lips, no arms, no legs, no hair, etc etc. I have heard kids at playgrounds ask my son "whats wrong with your sisters hands?" I have proudly listened as he says "Oh there is nothing *wrong* with her. Her hands are just different, thats all. God made them different"

Of course I must say my kids are likely exposed so many differences hat typical children and families aren't. We host kids from Africa here in the US for medical care. My kids have seen it all. We try to teach them to embrace our differences and go on.

BabyFu18
05-16-2008, 10:15 PM
I have had a lot of younger people ask me how I hurt myself, because I have a scar from cancer surgery that goes from my neck down my arm (so no matter what I'm wearing you can see it). Overall I'd much rather have someone ask me what happened rather than just stare at me or whisper about it. It doesn't really bother me if people ask, if it's a child I just say I was sick and I had to have an operation but the doctors made me all better and if it's an adult I'll tell them I had a transplant surgery due to cancer.

I guess you just tell your kids what you think they can handle, but personally I don't mind people asking me themselves as long as they aren't rude about it. Kids and adults are going to be curious about things, so why not strike up a conversation to cure your curiosity.

Just my two cents about the situation, and my situation is not as prominent as others so take it for what you will.

cdhheidi
05-16-2008, 10:32 PM
What a great thread! And how nice to know that others out there agree that asking questions is perfectly acceptable...

My son has been in a wheelchair much of his life (he tires easily due to scoliosis, short gut, pulmonary hypertension....) and I remember one time that really stands out. We were at a zoo, he was...6ish I think? Anyway... 2 kids kept on staring at him and whispering to each other, and really looked like they had some important questions on their minds. I was getting ready to go over and talk to them with Sean, when their mom said as loud as she could, "STOP STARING at that CRIPPLE!!!".

Got MY dander up big time... so I walked right over to her and said first of all my son is not a cripple, he tires easily and has had lots of surgeries. Also, YOU need to know that it is perfectly ok for kids to ask questions, that is how they learn about life! Then I squatted down next to the kids and answered the questions they had... If you could have seen the glare on that mom's face! LOL! We ran into them several times that day, and the kids were always very friendly and kind to Sean... and the mother glared at me every time she saw me.

Kids learn to be accepting from those around them... if they see the adults behaving like there is something dreadful about a person with a difference, then they learn to treat those with differences as less than.... you know?

Sigh.... off my little soapbox! :)

Anyway, thanks everyone for sharing! I just love reading what others have said, seen, and done!

LauraVV
05-16-2008, 10:50 PM
I feel very strongly when my daughter ask a question about some one I should answer it then and there not hush her up and try to pretend I didn't hear. At this point she is never rude. She is only 5. At times I wish I could refer her directly to the person. Example, we were at City walk making dinner ressies and the lady had ..... So what is your view point with children who are curious by nature and generally want to knowhttp://www.geocities.com/Heartland/Ranch/1955/coolmick.gif

My kids both have issues. They also have service animals. They hate it when they hear kids talking about them or their dogs. I think a 5 year old is old enough to understand that talking about others may hurt their feelings. I guess I'd tell a young child that it's not nice to talk about others. Later, if your child has questions, I'd suggest talking about the situation.

I don't know that it does any good for kids to speculate about the health or abilities of another individual. My daughter, or example, doesn't think of herself as having any issues at all. Now, she's 10, the size of a 7 year old, uses a w/c, oxygen, and has a service dog, among other things.

My adolescent son has horrible problems with people staring and talking about him. He hates to be in public because of this. It's never an easy thing. There is never a time when people don't come up and ask questions.

You know, people with disabilities are just like everyone else. How does it make you feel when you hear people talking about you? I love children. But so much of our lives are wrapped up in our issues that it's, well, hurtful sometimes to deal with the stares, and to have other people expect us to explain our issues to them. It'd be nice to go to the mall and be like everyone else. It's really tough to walk past people, even well meaning and innocent children, who are discussing the possible reasons why we have wheelchairs or service dogs.

I hear parents tell their children, "Oh those people are training a blind dog." People come up all the time and ask, "You're not blind. What kind of dog do you have?"

I guess, the long answer to your question would be this. If the person comes up to you and explains things then it's OK to ask questions. Otherwise, I'd work with your child to teach her not to speak about others and to ask questions privately.

bookwormde
05-17-2008, 06:56 AM
What a lot of less “enlightened” parents do not realize is that when they are not honest with their children or avoid a question or even worse get angry or upset with their child when asking about differences is that the children “understand” that there is something “wrong” about the difference and they learn, and take that discriminatory prejudice with them for life. I have a Ds8 Aspergers and a DS5 who is a NT, needless to say DS8 is very curious and will not hesitate to ask us, or the person if they are close, about any differences. A lot of the therapeutic activities we do are with a broad range of people with special situations so he gets a lot of opportunities. We have taught him to embrace and understand both his disabilities and his extra abilities and that is how he views the rest of the world. Of coarse being an aspie a social type of answer is not adequate and he will continue to inquire until he gets the “technical” reason, but even with this I can not think of a time when the person being “questioned” was rude or upset although maybe occasionally a little uncomfortable. I think he presents such a non discriminatory intellectual curiosity that it puts most people at ease even when it involves such societal sensitive issues such as race, religion or relationship preferences. I love it that my DS5 is following in his older brothers footsteps (although he does have the typical genders biases of his age). I always feel very sad for children who obviously have developed strong prejudices at a young age, because they will miss out on the wonderful diversity that is our world.

I guess it is easy with an Aspergers child since prejudices and discrimination are just “ not logical”.

bookwormde

3DisneyNUTS
05-17-2008, 08:11 AM
We were at Disney with the family and my son 5 at the time my nephew also 5 and my neice 7 were all in the room and Chris had a seizure. They are used to it so it wasn't a shock. They always asked back then though since they wanted to understand. So I said to them sometimes his brain runs a mararthon by itself, kinda like when the TV won't come in when the cable is out and that is why afterwards he is so tired. It is the easiest way I found to describe a seizure to a little kid without overwhelming them with the science especially since doctors dont truly understand the mechanisms. So my nephew comes to me about 5 minutes after digesting it all and says...When I get bigger I am gonna be a doctor that takes away Chris' seizures.... I was caught so off guard I started to cry, he made me so proud.

It was short lived though LOL he has wanted to be about 45 other things since LOL So hopes for a neurologist in the family are getting beat out by a cop, fireman, taking over his dads business so he can be his dad's boss lol.

carj
05-17-2008, 08:20 AM
My son wears a prosthetic leg and he gets very tired of answering questions about his leg because people ask all the time. He is 7. If I am there I usually let him answer something quick and move on and then I give the child more information if they seem to want it. He has explained his prosthesis hundreds of times and even though the person talking to him has never seen it before, it is old news to him.

I have also told him that if someone asks and he doesn't want to answer he can also say "I don't want to talk about it right now, do you want to play?" In my opinion, he is not obligated to share his life story. I think talking to people and explaining to them helps them to understand and appreciate that we all have differences, sometimes he is just not up to it and that is okay too.:)

He really used to hate it when someone would say "his leg was broken" or that he couldnt walk without out the prosthesis". Both were not accurate and really bothered him when he was little. One little girl argued with him until I had to step in and tell her to drop it or get away from him. She was a couple of years older and just had to be right.

He also has moments where he delights in shocking the other kids. "You don't want to know what happened, it will scare you, I mean it is really scary, they CUT my leg off!" etc...

minkydog
05-17-2008, 08:37 AM
Questions from children never bother me. My DS13 is very obviously "different"--he hoots, he drools, he bobs his head and flaps his hands. He walks with the gait of a drunken sailor and he is nonverbal. What bothers me a lot is adults who stare or allow their children to make fun. Last summer we were at a campground pool when a girl about 8yo announced that DS "looks like a monster". Well, of course, everyone stared. Christian does not look like a monster--he's cute as a bug, blond & blue-eyed. As this girl went on about how horrible he was, I saw her parents laughing. :mad: Not cool. I explained to the girl that although Christian is different, he likes to swim in the pool and ride his horse, and he is good at those things. It shut her up, but we left; our good time was ruined.

One of the sweetest things that ever happened to us was when Christian was about 4yo. He had not learned to walk, so he was in his wheelchair as we shopped. A little boy,also about 4yo, saw him and broke away from his grandmother to come over to us. Before she could catch up with him he asked me what was wrong with Christian. So I told him that Christian is different: he learns things slowly, so he hadn't learned how to walk or talk. Just that quick, the little boy climbed up in Christian's lap, held his face in his hands and said,"It's okay, Christian. Just open your mouth and let the woooords come oooouuuttt..." I thought his grandmother would have a stroke, but it was really the cutest thing.

Talking Hands
05-17-2008, 05:57 PM
I am often asked why I am so short by kids. I am barely 4'8". I just am and that is what I tell kids. Nicest thing happened to me at school last year. One of the juniors decided to give me a nickname. He dubbed me the "Hobbit" because I remind him of the characters in JRR Tolkien's books. Now I have a great answer for people. I'm just a hobbit.
As to asking why I use a wheelchair, I prefer that kids ask me directly. I'm really fine with explaing to them that I use it because if I don't use one I cannot walk more than a few feet without pain in my hips, knees and back. It is a way I can enjoy the parks and not end up in bed for a few days.

Figaro
05-17-2008, 06:22 PM
I'm almost never bothered when children ask me why I am in a wheelchair. :) There are times when I don't have the energy because am in too much pain to have any kind of a lengthy interaction, but I will always tell a child the simple answer which is that my legs don't work very well.

What does get a bit tiresome is when adults that I don't know ask very personal questions. My favorite example is when we were waiting for the bus at ASMusic and two women who I had never seen before came over and asked me if I had sex!

I looked at them like they had two heads and refused to answer. Fortunately the bus arrived and I didn't have to deal with them anymore, but I swear some people think that the person in the wheelchair is whatever "disease" that they have and not a real, live, breathing, thinking and feeling individual who doesn't care to have total strangers ask extremely personal questions. :)

3DisneyNUTS
05-17-2008, 09:44 PM
I'm almost never bothered when children ask me why I am in a wheelchair. :) There are times when I don't have the energy because am in too much pain to have any kind of a lengthy interaction, but I will always tell a child the simple answer which is that my legs don't work very well.

What does get a bit tiresome is when adults that I don't know ask very personal questions. My favorite example is when we were waiting for the bus at ASMusic and two women who I had never seen before came over and asked me if I had sex!

I looked at them like they had two heads and refused to answer. Fortunately the bus arrived and I didn't have to deal with them anymore, but I swear some people think that the person in the wheelchair is whatever "disease" that they have and not a real, live, breathing, thinking and feeling individual who doesn't care to have total strangers ask extremely personal questions. :)


OMG unbelieveable!!!! Ok time to think of something to say back....
'OMG are you hitting on me!!!!!!!..... ewwwwwwww NO THANKS yuck!'
I mean what would make anyone think that is even remotely appropriate to ask. My God!

Figaro
05-17-2008, 10:22 PM
I have NO idea why they thought that was an appropriate question to ask a total stranger. :) I just looked shocked and somewhat disgusted and shook my head sadly and then didn't look at either one of them again. And then to top it off when they got on the bus they were talking about how "rude" I was. Which made me laugh out loud and my spouse (who had been up talking to the bus driver to let him know that there was a wheelchair to be loaded) asked me what was going on and I told him that I would tell him later on.

I just think that some people don't have a very good brain to mouth filter. :)

3DisneyNUTS
05-17-2008, 10:55 PM
I am really tall and I know this doesn't compare at all but I could see as a kid how it gets old with the questions. 'Wow you're tall!!!' yeah....."you play basketball" nope....I must have heard that 400000 times. Now it's "your husband tall too?" what does that matter? But I go with it. Then the do you like it? Um do I have a choice?? But I actually do except buying jeans LOL But I bring this up because overall people tend to be dingbats in some situations, disabilities or not. The best is when a cashier assumes I am a guy because of my height and says sir before looking up then have a look of complete embarrassment when they realize what they just did. I try and shrug it off since it happens. Not so much anymore since tall is getting more "normal" but alot more in my 20s.

BroganMc
05-17-2008, 11:53 PM
I just think that some people don't have a very good brain to mouth filter. :)

I've been asked the same thing before. Not in Disney though. And I was so shocked by the question I didn't come up with a snappy retort until much later. I really wished I had just rebuffed the question as a come on.

You wonder if those folks follow you into the bathroom and peek under the door just to see if you actually have an alien head or something.

To the OP, I'd say 95% of the time I'm more than happy to answer questions of inquiring minds, child or adult. The 5% I'm not is reserved for the questions that are just inappropriate invasions of privacy (like that sex question) and for the 15th person who's asked me that day.

When you have a visible disability you do get looked at and asked about a lot when you go out. It gets to the point where you feel like you're on stage ala Paris Hilton. When people keep asking "what's wrong with you", you do start to feel like something is wrong rather than just different.

What you told your daughter was the best thing. It was nonjudgmental yet instructive. If I had overheard you saying that about me, I probably would have chimed in with a Q&A to answer her questions and reward you... no matter if I had filled my quoted for the day and was getting a bit tetchy.

KPeveler
05-18-2008, 07:29 AM
I will not answer the question "what is wrong with you?" there is NOTHING wrong with me. I am just having to live my life a little differently. I will, however, answer "what happened?" most of the time. When i do not want to answer it, I just say "oh, its a genetic thing" and let them fill in the details for themselves.

What drives me crazy is when people feel the need to say something to "make me feel better." I do not need comfort from random strangers. in fact, all it does is remind me of my illness and make things worse. I also can't stand when people say "you've got it made - you get to roll around all day!" (actually had someone say that to me in Best Buy!) What i wanted to say was "Yeah, I have this wonderful neuro-degenerative disease that means i could lose the ability to walk at all, or speak clearly, or even control my bladder. I have it made! I get to pee my pants!" I did not say that, but people think they're being cute or funny or comforting, and in fact all they are is annoying or rude.

I don't mind answering kids questions. Cause if you make kids comfortable with people with disabilities, then they may grow up to be conscientious, non-idiotic adults.

Here are two examples of kids who are plainly comfortable with people with disabilities:

When I was in IKEA, I was in my wheelchair and a 5 yr old (or about that age) twisted in his grandma's arms to look at me after i passed. I don't mind kids staring (i'm sure I did at that age), but I turned back around, and he caught my eye and yelled "You have MICKEY MOUSE!!!!" I have a Mickey patch on the back of my chair, and THAT is what excited him. he could have cared less about my wheels.

when I was coming home from disney last time I was in the disney store in the orlando airport and a little girl of 6 came up to me (her name was hannah i think) and she had lost her mom. she never asked or made a comment about my wheels, just asked me to help her find her mom. I don't know if I looked like someone on sesame street or something, but she knew I could help her find mommy and couldn't care less about my wheels. it was SO cute.

Figaro
05-18-2008, 08:19 PM
when I was coming home from disney last time I was in the disney store in the orlando airport and a little girl of 6 came up to me (her name was hannah i think) and she had lost her mom. she never asked or made a comment about my wheels, just asked me to help her find her mom. I don't know if I looked like someone on sesame street or something, but she knew I could help her find mommy and couldn't care less about my wheels. it was SO cute.

I, too am a lost child magnet. :) I think it is because I am closer to their eye level and that makes it easier for them to approach me.

KPeveler
05-18-2008, 08:45 PM
i like to think it was my radiating beauty and superior wit that made the child come to me, but i suspect you are right :) we are all so used to seeing a child underfoot after being at disney that most people don't notice one in a store. she just came up to me, all serious, saying "I can't find my mommy." it was absolutely adorable!

SueM in MN
05-19-2008, 08:58 AM
I don't remember if I mentioned this story on this thread before (it's a pretty old thread), but my youngest DD has cerebral palsy and has used a wheelchair since before she was 3.
On the evening before we were leaving for WDW when she was about 6, I was walking her back to her bedroom after her bath. Since she has no standing balance and her legs tend to 'scissor' or get tangled, walking her is not that easy. Anyway, during the walk back to her room either she or I tripped. I ended up turning a bit to avoid her head hitting against the top of her dresser. She hit me (apparently a boney part) hard enough that she got a black eye and a bruise on her cheek.
During our trip, we heard some little kids asking their moms "What's wrong with her?" and the answer was usually something like "I suppose she was in an accident. That's why I make you stay in your car seat." I even had some people come up and ask say they were sorry to see a 'hurt one' in WDW and asked me when her car accident was and whether anyone else was hurt.:confused3
I was REALLY happy when her bruises faded and she could just be a little kid in a wheelchair again.:cutie:

mcco5543
05-24-2008, 03:29 PM
Dear Wheelsie, I am also a 28 year old woman with Spina Bifida who became an amputee at 21. People always assume I'm a wheelchair user because I'm an amputee as well and I have to explain that one doesn't really have anything to do with the other. I have also experienced children being verbally and/or physically reprimanded for looking in my direction and inquiring. It's really sad and I feel just as upset about it still too! HUGS!

mcco5543
05-24-2008, 03:34 PM
I gotta second this one!! :)

Children ask me all the time..."Lady what happened to your leg??" (as some of you may know amputaion from malpractice) I answer them that "the Dr took it....."some then say "but why??" I smile cutely as I never have figured how to answer this one with a non joking response, and say..."I think the Dr needed it a little more than I did" :D I know its corny but it seems to make them feel better :) If anyone has any suggestions how I can answer this with a NON joking answer, so that the real reason can be understood by the lil tykes, Id appreciate some input LOL :)

Wheelsie Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)
and
DisneyTips (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=87009194)
wheelsie@mail.wdwinfo.com

http://www.wdwinfo.com/sites/wheelsie/yyc_mc.gif http://www.wdwinfo.com/sites/family/dischat.gif

Wheesie, I also struggle with this question from young children. I had a bone infection and the only way to cure it was to remove the leg. This is a rather scary sounding answer so I don't like to put it that way to kids. I just say that my leg "got sick" and the dr had to take it. Kids seem to be satisified with that and more than that dont' seem to be to terrified. I also add that most people's leg's don't get sick but mine did and that's what the dr. did to make me better. Kids seem to understand "sick" becuase they've been sick before. I don't know if you could say something similar. Just an idea

carj
05-24-2008, 03:53 PM
If someone asks "What's wrong with his leg? or What happened" in a rude way, I smile and say "nothing happened" and get away from the rude people.

I don't mind talking about his leg at all, but I don't accept their assumption that something is "wrong" with him.

Very few people are ever like this. Most people are friendly and reasonably curious about the difference which is normal.

My son will point out other amputees to me because he finds it neat that there are others out there. Once he asked if we should tell a man who had an amputation but no prosthesis about XXX hospital so they could get a prosthesis. I explained that not everyone who had an amputation can wear a prosthesis so they might not appreciate his suggestion!

DisneyWheeler
05-24-2008, 09:45 PM
I've had adults, and kids especially ask me various questions about why am I different. Here's my answers to them:

1. What Happened To Your Hands & Feet (if I'm wearing my sandals with my socks)? Why Are They Like That?

My answer: God made me this way because he wanted my mom to have a special child. The syndrome I was born with, fused my fingers and toe bones together at birth, so the doctor had to due multiple surgeries on my hands to give me five straight fingers. He left my toes fused together. I've had 45 surgeries altogether to fix all of the parts of my body that were affected by the syndrome.

2.Why Do You Have To Use A Wheelchair/Walker?

I have severe scoliosis in my back, and osteoarthritis. My wheelchair/walker helps me get around to where I need to go.

My walker is one of those Kaye posture control reverse walkers that you'd see most kids using (I have the adolescent model), and I get questions asked all of the time about where I got it, and what model it is. You rarely see adults using them. Mostly kids. I love it because it keeps my back straight when I'm walking. I've had two previous ones that you push, and they hurt my back a lot. Even though they were at the right height for me. I owe it all to my friend who worked for the DME supply company that I go through, in getting it for me without me having to pay for it when the insurance didn't approve it.

3. What's That Thing On Your Head? (Referring to my headband-style bone conduction hearing aid)

It's called a "headband-style bone conduction hearing aid". It helps me hear because I'm profoundly deaf in my left ear. I'm going to be getting a bone-anchored hearing aid fairly soon.

One person that was curious about it told me that she had a BAHA, and she showed it to me. I was the one who began asking her questions about it, and she was happy to answer them. They're the "top of the line" in hearing aid models today if you have profound hearing loss in one/both ears like I do.

Samantha

mistymouse5001
05-25-2008, 02:27 AM
I always strike up conversations with the ppl or there parents like we're old friends. Throws everyone off guard, and it makes everyone forget the thing that seems to make said person different. :goodvibes

Eeyores Butterfly
05-25-2008, 03:35 AM
Talking hands- I get where you're coming from on the height thing! I am 4'10" and have worked around children for a long time. I taught preschool over school breaks, and one time got tackled by my five year olds screaming "Miss Jessi! Miss Jessi! We're almost as tall as you are!" The third graders I was with this past spring thought it was a hoot that most of them were my height or taller. Several have asked my why I'm short, and to me it's no big deal. Actually, I'm frequently mistaken for a student there. Even when I am in my "teacher garb" the lunch ladies tried to give me the kids lunches until the started recognizing me.

As for the OP: I myself don't have a disability, but I work a lot with kids with disabilities (I am earning my Master's in Special Ed) so my perspective might be different. Evey child is curious. Unfortunately, not everybody agrees with how to handle this. Some would prefer to be asked about their disability, while others would not be. There's no way to tell. A good temporary answer to why somebody is different is "God made them that way." You can tailor a short response to other disabilities (Their legs don't work like yours do so they use a wheelchair to get around, they can't hear words so they use their hands to talk) and most of the time kids will be okay with this. Later on, outside of the situation, you can have a chat with your child about tact (if they are old enough.) Children simply don't comprehend that they may embarass people or it is inappropriate, before the age of 7 developmentally they wil lhave a hard time with this. The best thing you can do is expose your child to all types of people so to them differences are normal. There is a great series we use in our school. Each book is entitled "Bringing ___ to School" and talks to kids about different disabilities and then explains how the kids are just like all the other kids. You can see if your school or library has these.

With the kids in our school who have special needs, the teachers typically will explain to the kids if they ask why the child is different. For the most part, the kids are absolutely wonderful and treat the children just like any other. We live in a rural area and people come all over for the special ed program due to the partnership with the university, so the kids here have more experience with people with differences than the average kid.

darthtatty
05-25-2008, 04:23 AM
ive got to say on my last trip to Disney i felt free. sure my son was stared at on the odd occasion, but living in England i was soooooooo used to that.
at Disney i hardly noticed the staring or any comments, now it could of been that i was having such a great time i didnt notice any.:)
there was only a couple of times that i can remember that someone came up to me and said,hi just wanted to come up and say hi to your cute son (he is cute and always smiling) then theyd say, is it CP he's got? then talk about someone they know who has CP.

in the Uk everywhere we go there is constant staring and comments of why is that boy in a wheelchair.
has noone ever seen a wheelchair before?


i usually cope with the staring by saying loudly to my son "why didnt you tell me you were famous?" or talking about pictures eg oh i must remember to get my PICTURES developed :rotfl:
son usually stares back at anyone who stares at him :rotfl:

kayleighnik
05-25-2008, 06:57 AM
I've been stared at to the point where someone has been walking backwards, just to look, and then tripped over. Serves them right. They could have just asked. I wouldn't have minded.

WheeledTraveler
05-25-2008, 07:03 AM
I'm pretty much always willing to answer kids' questions, but adults tend to grate on me. If it's an adult asking for a kid (with the kid right there), it doesn't bother me so much, but most of the questions I get are from adults without kids around. As far as I'm concerned most of the time people I don't know have no need to know anything about my medical history. I do agree with those who get upset with parents for yelling at their kids for looking or asking questions. If I don't want to answer a question, I'll say so. I can understand how for younger people with disabilities this is more intrusive (I remember getting sick of people asking what was wrong when I was in high school and I wasn't even obviously disabled then), but I"m becoming more complacent as I get older.

The other thing that gets to me is the random people who "bless" me or say they'll pray for me or something like that. I'm about to move to NYC and lived there for a few months last summer and I'm not sure I've managed to set food on a sidewalk there since I started using my wheelchair without someone offering to pray or bless me. I'm fine with myself how I am and I don't need to be cured or changed.

As far as the sex question goes, I think I'd be the person who says "Why? Are you offering? Too bad by asking so quickly you've cut yourself out of the running" ;) I'm not sure if any of you have seen Murderball (about quad rugby and the people who play it), but there is a great scene where some of the guys get asked by a couple (able-bodied) girls about sex. I have a feeling it was a fabricated moment, but I've met enough people who've assumed that I *can't* that there are times when I don't mind the question. Just not as the first thing the person ever says to me.

SereneOne
05-25-2008, 07:28 AM
My daughter has VATER/VACTERLS Association. It is an acronym for multiple birth defects. She has rib and vertebrae anomalies, an 11 mm hole in her heart/ASD, has one good kidney, has had tethered spinal cord surgery, and Reactive Airway Disease. She also has a gtube for feedings, although she can eat by mouth. She did have hypoparathyroidism, but that has gone away. She was premature and her twin sister, Emily, died shortly after birth.

When children or adults have asked me in the past, I explain Meg's condition and have even talked about how we all have challenges, whether they be physical, mental, emotional, or spiritual. It is up to us to make these challenges into opportunities and also to turn them into strengths. Such as wheelchair basketball players, or that artist and writer who is paralyzed except for her head, the mom with no arms who drives, takes care of her house and children with her feet. I know people whose challenges I can see doing things I say I can't do, motivate and inspire me, they give me hope and courage.