Just talk to us

[alizesmom]

ii 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.!

Don't worry, I don't feel hijacked. I can handle being asked the more personal questions because it is a teaching moment. There are many parents who are not comfortable with this. On a forum like this I feel even more able to talk. My problem is that people have no problem talking over my kids' heads without worrying how much my child understands. I happen to be the one who has been asked if I plan on giving my foster (hopefully, soon to be adopted) daughter back because of her problems. Can you imagine the effect that has on a 3 yr old who has been in 4 different homes already?

I would love this thread to continue with healthy people feeling free to ask questions about disabilites, how we cope, what it feels like etc. If one person is educated or one person with a disability is made to feel "normal" for a little while, it would be worth it.

Karen

 

[Disney Doll]

Not an e4xcuse, but an explanation...soemtimes people just don't know what to do, they are uncomfortable, they haven't been exposed to many disabled people. Again...not an excuse, btu an explanation. I do understand where you are coming from because when I am with my Patrick (my 12 y/o godson who ahs Downs) I have very different interactions with people than I do when I am alone.

A "lightherted"disabilty story:

My neighbor teaches deaf children. Basically she has all elementary age and grade levels...she really is amazing. Anyhow, we went with her on the Yankee Stadium tour, and the gentleman who was our tour guide had 1 arm. So hear we have a bunch of deaf kids, a tou guide wit 1 arm, my friend translating into sign language for the kids. We go all through the stadium. We're down near the dugout, and the guide says "Does anyone have any questions?". One of the kids, who was not totally deaf so he was verbal, says "Yeah, what happened to your arm?". Well, I thought my neighbor was going to drop! She started to tell the kid it wasn't polite to ask that question. The guide stopped her and said "It's a perfectly legitimate question". He went on to explian that many years prior he was in the Yankee farm system as a pitcher, got into an accident and lost his arm...of course it was his pitching arm. I guess the Yankees promised him he'd always have a job with the team. he said he had done many things in his career with the Yankees, but was enjoying the tour guide thing because he got to meet so many people.

Something about the whole scenario just struck me... a deaf kid asking a 1 armed guy what happened...it was one of those moments in time that really make an impact on you, for many reasons.

 

[breezy1077]

Disney Doll, I wasn't going to respond, but thought I'd let you know that the three lines in your siggy took my breath away! They're great!

 

[Robinrs]

My son, who has a BIG heart for the handicable, cannot understand it, either.

His best friend is a paraplegic. He is in a wheelchair and has to be helped by a wonderful man in his 40s. My son is in 6 of his 7 classes. They've grown close because my son noticed how the teachers and the kids reacted to him. They're in the 8th grade now but have been friends since the 6th.

The boy drools and my son is always there to wipe it up. He moves his feet for him so he won't get stiff. Thru it all they laugh, talk, go out to sports games on weekends and talk about girls, typical teenaged boy stuff.

The other day some guys told my son he must be gay...

I told him don't let them upset him. They're trying to "sexualize" his feelings for his friend because they don't understand LOVE. It's pretty typical of boys that age, so I told him to ignore it.

Most people are uncomfortable with things that are different. Those of us who don't see these differences will never understand it.

Don't worry about their reactions. You cannot control that. You just be thankful that you are there to detract the stares and the stupid talk from them, to give them what they need. That's all that you can control.

I've been on this earth long enough to realize that the ones who are unique, like your family, are special BECAUSE they care.

 

[pepperw23]

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.

Okay, I swear I am not a weirdo stalker chick lol, But if you were not in Va. yesterday morning, I swear to goodness your family has a twin family. If you were, I was the lady that stopped and waved and giggled with the little girl you were feeding at breakfast. I was not sure what we were giggling at, but her giggle made me giggle.

I would never dream of just walking right past a child. They are all beautiful and all children could teach most adults I know a lesson or two in love and acceptance.

 

[babytrees]

Disney Doll, I wasn't going to respond, but thought I'd let you know that the three lines in your siggy took my breath away! They're great!

thank you for saying something!! I just saw them.

The last one is being used in my house alot for my husband!!

 

[java]

Thankfully we as a family are very good friends with a family that happens to have a daughter in a wheelchair. She has spina bifida. To my kids she is just another child. Nothing more or less. They all play great together.
I feel like it is a blessing that we know them. That single friendship experience has opened my children up to all handicap people. In Disney a mother was tearing up as my son was talking with her son. He had CP and couldn't clearly speak back. But my son understood him. We are all people. She said it was nice to not be invisible. And that made me tear up.
to you and know that not all of us are afraid to talk to someone in a wheelchair or whatever handicap you may have.

 

[LadyyRedd]

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.

All of these stories really tug at my heart, but this brought tears to my eyes.

Kimya

 

[babytrees]

I would love to hear what everybody's kids favorite activity is and how it is adapted for your child (if it has to be). That's one thing I am always amazed by...adaptations!!

 

[java]

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.

I am crying reading this. How could she ignore her beautiful grandaughter?

 

[babytrees]

I am crying reading this. How could she ignore her beautiful grandaughter?

I cried reading that too.

I can't imagine the ignorance.

 

[DISshopkeeper]

I have to tell you, I used to be really uncomfortable around disabled people and I can't even tell you why. I guess I just was unsure of what to say or do and so I just avoided the issue.

Then DS got involved with a program called Best Buddies in HS, where they pair "abled" kids with "disabled" kids. Turns out he was great with them. and was so involved he became Pres of their chapter.

So of course, I was involved,too. DS played football and he had me pick up one of the kids several times to take him to games. To say I was nervous is an understatement. My HS DS told me (in that tone where they truly think you are an Idiot) "Mom, he's just a kid like the rest of us." And he was right.

So I learned something from my son and all the kids in the Best Buddies program.

DS now aspires to teach disabled children. He's learning disabled himself, so this will be a long road for him, I hope with all me heart that he succeeds.

My own amusing story here: I should have known what path this son of mine was going to take based on this story....

We were on the boardwalk in Atlantic City and came upon a disabled man in a wheelchair, he had no arms and no legs. I knew both the kids saw him, but no one commented. DS was about 10, DD 8. About a week later, DD was questioning me in the car about the man. DS butted into the conversation and said "Was this the guy wearing a yankees cap?" And I said "Well, I was a little distracted by the fact that the man had no arms or legs to notice if he was wearing a cap or not. What would make you notice that, son?"

And he said " I wondered how he got it on his head." I was truly flabbergasted.

 

[breezy1077]

I have to tell you, I used to be really uncomfortable around disabled people and I can't even tell you why. I guess I just was unsure of what to say or do and so I just avoided the issue.

Then DS got involved with a program called Best Buddies in HS, where they pair "abled" kids with "disabled" kids. Turns out he was great with them. and was so involved he became Pres of their chapter.

So of course, I was involved,too. DS played football and he had me pick up one of the kids several times to take him to games. To say I was nervous is an understatement. My HS DS told me (in that tone where they truly think you are an Idiot) "Mom, he's just a kid like the rest of us." And he was right.

So I learned something from my son and all the kids in the Best Buddies program.

DS now aspires to teach disabled children. He's learning disabled himself, so this will be a long road for him, I hope with all me heart that he succeeds.

My own amusing story here: I should have known what path this son of mine was going to take based on this story....

We were on the boardwalk in Atlantic City and came upon a disabled man in a wheelchair, he had no arms and no legs. I knew both the kids saw him, but no one commented. DS was about 10, DD 8. About a week later, DD was questioning me in the car about the man. DS butted into the conversation and said "Was this the guy wearing a yankees cap?" And I said "Well, I was a little distracted by the fact that the man had no arms or legs to notice if he was wearing a cap or not. What would make you notice that, son?"

And he said " I wondered how he got it on his head." I was truly flabbergasted.

You sound like you have a wonderful family and great kids. I want you to know how much kids like your son mean to families like mine. My DS has a "buddy" this year. She comes from the high school every Thursday to play games and interact with him. Thursdays are his favorite days .

 

[LUV2BNWDW]

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.

You know this is so true.. I had a handicapped brother. He was severely mentally and physically handicapped. The times that someone came up and talked to him like he was a REAL person meant the most to my family. We knew that he was locked inside of his body..and knew more than anyone gave him credit. So I have no problem with talking to families, and neither do my kids. Matter of fact they end up making friends with the kids who have disabilities. Though I feel really horrible that this past Jan. when I was a the MK I saw this young boy..that really reminded me of my brother. I kept watching him, but never spoke to the family. (If you are on this board I am truly sorry.) I have felt bad about this for months..I had lost my brother the previous year and would have spoken to him and his family except I kept crying. OH Gee as I read this back I am so rambling... anyway. Guess I'm trying to say is there is a person locked in there sometimes that knows more than you think.. Sorry for rambling..

 

[DISshopkeeper]

You sound like you have a wonderful family and great kids. I want you to know how much kids like your son mean to families like mine. My DS has a "buddy" this year. She comes from the high school every Thursday to play games and interact with him. Thursdays are his favorite days .

Thanks for saying that!

 

[ticktock]

My son, who has a BIG heart for the handicable, cannot understand it, either.

His best friend is a paraplegic. He is in a wheelchair and has to be helped by a wonderful man in his 40s. My son is in 6 of his 7 classes. They've grown close because my son noticed how the teachers and the kids reacted to him. They're in the 8th grade now but have been friends since the 6th.

The boy drools and my son is always there to wipe it up. He moves his feet for him so he won't get stiff. Thru it all they laugh, talk, go out to sports games on weekends and talk about girls, typical teenaged boy stuff.

The other day some guys told my son he must be gay...

I told him don't let them upset him. They're trying to "sexualize" his feelings for his friend because they don't understand LOVE. It's pretty typical of boys that age, so I told him to ignore it.

Most people are uncomfortable with things that are different. Those of us who don't see these differences will never understand it.

Don't worry about their reactions. You cannot control that. You just be thankful that you are there to detract the stares and the stupid talk from them, to give them what they need. That's all that you can control.

I've been on this earth long enough to realize that the ones who are unique, like your family, are special BECAUSE they care.

I know this is OT but it reminded me of when LOTR came out and I heard alot of jokes that Sam and Frodo where a "couple" because of their obvious strong feelings for each other. I thought what is WRONG with these people? Two men can't have a loving relationship that isn't sexual? Those people are so sad. Sorry your son had to deal with it.

When my DS was in elementary school he had a friend who had some form of mental disability. He wasn't mentally handicapped (he could read at a 4th grade level in K) and didn't have autism, I don't know what it was, I didn't ask, I'm not very nosey (OK I'm just not a people person, honestly). He also had propesia, most of his hair fell out. My son was pretty popular and the other kids tried to get him to stop being friends with Micheal cause he was weird . They even did the I won't be your friend if your his thing. DS said "So what?No skin off my nose, later." At the time I didn't think anything about it because that's what I would have done, you know? Later I found out from Micheal's mom that DS was his only friend at school, in fact his only friend that wasn't a relative or family friend. I didn't realize what a big deal that friendship meant for that boy. For one of the "cool kids" to stand up to the rest and tell them to go jump in a lake for him.

 

[JerseyJanice]

That is such a great story, DisShopkeeper. Thanks for making me chuckle.

(BTW, it's wonderful to "see" you. )

 

[alizesmom]

Okay, I swear I am not a weirdo stalker chick lol, But if you were not in Va. yesterday morning, I swear to goodness your family has a twin family. If you were, I was the lady that stopped and waved and giggled with the little girl you were feeding at breakfast. I was not sure what we were giggling at, but her giggle made me giggle.

I would never dream of just walking right past a child. They are all beautiful and all children could teach most adults I know a lesson or two in love and acceptance.

Must be our clones, we're tucked away in PA. Karen