Just talk to us

[alizesmom]

In the last 4 years we have become parents of disabled children. This leads to an observation/question. Why do people find us scary or hard to talk with? The stares and quick glances really feel weird. Just give us a smile. Why not come up and say hello? Are you not sure what to say? That's easy, talk to my children like you would to any child. Ask the usual questions: How old is he/she? What's his/her name? Treat the parent normally. Some parents mind you asking about the child's condition/some don't so you're probably better off not asking. Rudeness is the following (and either I or someone I know has heard these):
"What's wrong with him/her?"
"Did you do something wrong during your pregnancy?"
"Did you know before the birth?"
"Now that you know about _____ do you plan on giving him/her back? (this to an adopting family)"
"You're so wonderful/brave/special..."
I know I'm not saying this well but I've learned about so many parents who have lost friends and relatives because others are afraid of saying the wrong thing or just can't accept the child. Parents of children with disabilities feel so alone.
Please don't shunt this to the disAbility board, they already understand.

Karen, happily proud mom to Alize and Ciara.

 

[NikiM20]

Hey Karen!! Congrats on the adoptions of your beautiful children!!!

ETA sorry if they are not adopted, I read your ticker and assumed

 

[breezy1077]

What bothers me the most are the parents that won't let their kids play with my son. Why? It's so sad because my son doesn't understand and I'm finding it harder and harder to make excuses for ignorant people. - just venting.

 

[BillSears]

Sorry, I'd respond but I'm afraid to talk to you...

I'm guessing that they just don't understand that just because someone is disabled or has a disabled child that inside they are still just like everyone else. No better, no worse, just normal people. Sometimes they feel like they have to treat you differently and that throws them off. Of course I could be wrong since I;m just guessing.

 

[babytrees]

I am so sorry that there are ignoramuses out there. I have seen them in action.
I am an equal opportunity gusher I love munchkins...I actually have a soft spot for those with disabilities...because they are some of the sweetest kiddos out there. I hope that I am raising my girls to be the same way.

Give your munchkins hugs from the DIS friend.

 

[Buckalew11]

You know, we came out of the Wide World of Sports in january and there was a young boy in a wheelchair and his grandmother standing behind him. Nothing would do for DH but to go over and give this young boy his Mickey marathon pin.

Ashamed to say, I worried about the grandmother's reaction to us and all that stuff.
Well, DH talked to her first and then bent down and talked to Chad who was 9yo. Chad and grandma were doing the AK 5K the next day. DH gave Chad the pin and told him he was a FF from TN. WELL, you would have thought DH had had given that child a piece of Gold and said, "Hi, I'm God."

DH and I both walked away from Chad with tears in our eyes and I had learned a big lesson that afternoon.

The next day at AK's 5K, we cheered Chad and Grandma over the finish line and went over and met the rest of Chad's family.

That was the highlight of my January trip!

Thanks for your post and reminder, OP. I have been very guilty of not saing anything for fear or something???

 

[terri01p]

Oh Dear I could write a book...it's so sad even from my own family, last year my own mom didn't but my dd a birthday present because " she wouldn't know anyways ". It's sick.

 

[TCPluto]

You know, we came out of the Wide World of Sports in january and there was a young boy in a wheelchair and his grandmother standing behind him. Nothing would do for DH but to go over and give this young boy his Mickey marathon pin.

Ashamed to say, I worried about the grandmother's reaction to us and all that stuff.
Well, DH talked to her first and then bent down and talked to Chad who was 9yo. Chad and grandma were doing the AK 5K the next day. DH gave Chad the pin and told him he was a FF from TN. WELL, you would have thought DH had had given that child a piece of Gold and said, "Hi, I'm God."

DH and I both walked away from Chad with tears in our eyes and I had learned a big lesson that afternoon.

The next day at AK's 5K, we cheered Chad and Grandma over the finish line and went over and met the rest of Chad's family.

That was the highlight of my January trip!

Thanks for your post and reminder, OP. I have been very guilty of not saing anything for fear or something???

Great story.

Try to get through this with a dry eye:

http://youtube.com/watch?v=iTHvTSBhl5s

http://youtube.com/watch?v=oyiApzjIuzw&feature=related

If the link doesn't work, google Team Hoyt, Rick Hoyt, or Dick Hoyt.

Dick Hoyt is an american hero..... He should be idolized and emulated.

The second link tells more of their story.

 

[Buckalew11]

Great story.

Try to get through this with a dry eye:

http://youtube.com/watch?v=iTHvTSBhl5s

If the link doesn't work, google Team Hoyt, Rick Hoyt, or Dick Hoyt.

Dick Hoyt is an american hero..... He should be idolized and emulated.

Actually, my DH is huge fan of Dick Hoyt/Rick Hoyt/Team Hoyt.
DH does triathlons and has read Mr. Hoyt's book. I already know my eyes would not stay dry!! He is an American hero and a wonderful father.

We'll probably really "recognize" him when it is too late.

I cut a little boy's hair who is autistic. For some reason or another, this chld has taken up with DH. My DH leaves work early when possible 9which is most of the time) when this child is coming for a haircut! They have to go outside and play! This child invited DH to his b-day party (he is in K) and DH went!
Trust me, I'm learning a lot.

 

[MoniqueU]

I feel for you. I am going blind, legally blind already with retinitis pigmentosa. I told my MIL something about disneyland and blind people and she asked why a blind person would want to go there. I guess I won't be asking her for a ride there. So even from my own family I don't get understanding all the time, never mind the strangers that think I am drunk or stupid.

Hugs to you.

 

[Chattyaholic]

What bothers me the most are the parents that won't let their kids play with my son. Why? It's so sad because my son doesn't understand and I'm finding it harder and harder to make excuses for ignorant people. - just venting.

I find that so sad, and disturbing. If people would allow their children to play with your son maybe their children would grow up to be more open minded and realize that we are ALL people, no matter if some are different than others, and to embrace those differences, rather than shunning someone because they are different than them. People should be more accepting of others and realize that we are all here for a reason. If children were allowed to play with children different than themselves, whether it be a physical handicap, a different race, a different culture, a different religion, whatever...just maybe there would be lots less prejudice in this world.

 

[Sparx]

I feel for you. I am going blind, legally blind already with retinitis pigmentosa. I told my MIL something about disneyland and blind people and she asked why a blind person would want to go there. I guess I won't be asking her for a ride there. So even from my own family I don't get understanding all the time, never mind the strangers that think I am drunk or stupid.

Hugs to you.

A friend of mine goes to the Nashville School For The Blind. I'm not sure exactly how good his vision is, but he's asked me to read things to him on more than one occasion. I know people are really weird with blind people. They treat him like he's an infant, when really, he's one of the most self sufficient people I know.

 

[lecach]

What bothers me the most are the parents that won't let their kids play with my son. Why? It's so sad because my son doesn't understand and I'm finding it harder and harder to make excuses for ignorant people. - just venting.

I go out of my way to encourage my 3 y.o. DS to play with the kids that no one seems to be playing with and to share his toys with them. I want him to be accepting of all kids. We're going to the world in less than 2 weeks and I promise to make a point of encouraging him to play with kids like your son AND I promise to talk to the parents too. I usually do anyway. I know it's important to be looked in the eye and not that little sideways glance that says "I am afraid to look at you".

Sorry that not everyone is open minded.

 

[breezy1077]

Actually, my DH is huge fan of Dick Hoyt/Rick Hoyt/Team Hoyt.
DH does triathlons and has read Mr. Hoyt's book. I already know my eyes would not stay dry!! He is an American hero and a wonderful father.

We'll probably really "recognize" him when it is too late.

I cut a little boy's hair who is autistic. For some reason or another, this chld has taken up with DH. My DH leaves work early when possible 9which is most of the time) when this child is coming for a haircut! They have to go outside and play! This child invited DH to his b-day party (he is in K) and DH went!
Trust me, I'm learning a lot.

That's a great story!!

I'm glad he took the invite seriously it probably made the kid's day.

 

[TheGhost]

I am new here on the DIS and hope I am not stepping on toes by jumping in here.
I myself do not understand why people will go out of there way to treat someone who is disabled like they are going to caught something from this person. I was brought up that God has made us all the same and everyone has something to offer the world. I have taught my daughter the same thing. My grandmother always said treat others the way you want to be treated.
I am sorry you have to deal with people like this.

 

[breezy1077]

Ghost.

 

[KPeveler]

i have two problems when dealing with my disability - either people wont ask questions and assume i am somehow mentally or intellectually handicapped (and therefore unable to speak for myself), or they ask all kinds of rude, impertinent questions that are none of their business!

i once had a guy say to me when i was out in my wheelchair, "wow, you've got it made, you get to be pushed around all day!" WHY would you say that to a random stranger???

I am NOT brave/courageous/inspirational for being disabled/sick. being sick doesnt make you brave, it just makes you sick.

i WANT to have a real discussion about disability, and even disability at disney (thinking of those ECV threads that always turned so nasty)... i wish people would ask questions, even questions that seem a little rude (like "how come you say you need that wheelchair when you can walk), because that is how people learn. a forum like this gives us a great tool to ask these questions of strangers. i WANT to talk about my disability and illness, since that is how people learn. in fact, it was someone else here on the DIS that first mentioned a weird disorder called EDS, and after much research and a new specialist, i got diagnosed. questions lead to education, so people, PLEASE ASK!

sorry OP for hijacking your thread there... if you think this is too far off from your meaning in the thread, i would be happy to start my own!

 

[KPeveler]

ok, i have a tendency to kill threads, so here i am bumping the thread back up for the OP!

 

[TurboKitty]

To paraphrase a pp, I am NOT brave/courageous/inspirational for being the mother of a mentally disabled child/child with autism. I know you mean well, but god sometimes does give us more than we can handle.

We do what any parent would in the same situation. We love our kids unconditionally and try to do our best by them.

 

[solferino]

Actually, my DH is huge fan of Dick Hoyt/Rick Hoyt/Team Hoyt.
DH does triathlons and has read Mr. Hoyt's book. I already know my eyes would not stay dry!! He is an American hero and a wonderful father.

The Hoyts are just amazing- DH has done a couple of races with them, including a triathlon. I loved seeing them in action that day- the devotion and love Dick has for his son to be doing these races is inspiring beyond words. DH has a marathon this weekend, I don't know if the Hoyts will be there because it was less than 2 weeks after Boston, but it's entirely possible. They're a great team.