Daughter with RP first visit using her cane HELP NEEDED!

[Lives4Disney]

Hi, I have an 8 year old daughter with RP. For the past couple of months she has received cane training at school and wants to (excitedly) use her long cane for our THanksgiving trip next week. She is thrilled because she said that in the past, she has had to watch her feet and has missed the sights.

I just don't know ANYTHING about what to expect from the CMs running rides. (or anywhere for that matter) Will they stop the ride for her? SHould I ask or just see how she does? Of course I am especially concerned about the darker rides when boarding - haunted mansion, BUzz, etc. She has NO night vision left at all.

I guess I am also concerned about MVMCP. We are going on 11/28. It will be evening, maybe crowded.....


Anyone with experience with a long cane??? I would appreciate any input as to what I should do/expect in any situations. Our last visit in August, we dined at Chef Mickeys and they tried to seat us at a table up the steps. My husband and I looked at eachother and felt awkward about having to say we just couldn't accept that table because of our vision impaired child. The CM seemed kind of like she didn't believe us - that we were just trying to get a better table!! Lucy didn't have her cane at that time, but I am worried these kind of issues/ moments will pop up and we are very unprepared.

We have no experience with any vision impaired people at all - only our Lucy.


Suggestions very appreciated!! I just don't want her to be discouraged about using the cane, feel bad, or like she is a problem at all!!! SHe is one of our three greatest blessings!!!! (we have 2 other kids!)


Thanks much!

Lives4 Disney

 

[SueM in MN]

Welcome to disABILITIES.
Your DD sounds like she has a great attitude!
This thread should be ehlpful to you. Even though the original poster had mobility problems, the process is the same for anyone who needs extra time.
And here's a link to the offical Disney website page about visual disabilities. They don't have a lot of services, but it's nice to at least have access to what they have.

You will probably feel awkward making requests at first, but you'll get more comfortable as time goes on. Sometimes you need to ask for what you need. Most of the time people are more than willing to provide what you need, but you usually have to be proactive to let them know what it is.

Ask as many questions as you can think of. There are not any regular posters that I know of who have visual challenges, but we've got a lot of posters who have been to WDW a lot of times and can answer most "how does it work" questions.

 

[Lives4Disney]

SueM - thanks for the suggestions. I had already done a search and read most of that thread that you gave me. I appreciate it. I'll take more time and reread it. I did look at the Disney site, and I will get her the large print map. She will get a kick out of that! She isn't ready for Braille yet, luckily. Thanks for taking the time to reply.

Lucy does have a great attitude. She is such a sweet kid and very mature about the cane. Kids at school stare and then she has heard them ask teachers why she uses it. Lucy will go up to them and say " You need to ask me that question". She then explains how it helps her throughout the day at school. She really takes it as it is nothing to be ashamed of or embarrassed of. It is just what she needs to feel safe. We are very proud of her.

We do feel awkward asking for help. But you are right. You have to ask for it to get it. With RP, it is sometimes difficult to know Lucy needs help because her vision is 20/30, (I have seen people do a double take because she is walking with a cane, but then picks up a book and looks at the cover) however she has no night vision and a severely reduced field of vision.

If anyone out there has any experience at WDW with vision impairments, please....Any more info would be great for us to have.

 

[Michigan]

I can't address the sight issue but can help with the MVCP.

A few years ago I went with my oldest daughter that is in a wheelchair to MVCP. It was sold out and when we went through the gate I said to myself what have I done. There were people lined up all over the place. Don't be fooled by this they are the people getting their spot for the first parade. We went on all the rides never waiting in a line at all the entire night. Saw the first parade by getting to the handicap section 10 minutes before the parade started in front of the Castle. It was a wonderful time if you wanted to stay on a ride you could as many times as you wanted.

 

[SueM in MN]

I don't know how you feel about reality shows, but one of the models competing on America's Top Model has RP. Her name is Amanda and she started losing her vision at 13. Right now she is legally blind, has peripheral vision and almost no vision at night or in the dark. She said she will be completely blind at age 30.
It has been interesting seeing how she has adapted to the different challenges that are presented to the contestants. They have shown her with her long cane (she uses it when they have to travel at night, but often during the day she is not using it). On one episode, they had to walk down a runway in a darkened room during a fashion show. She asked to see the runway ahead of time so she could plan, but the fashion show people (who didn't know about her blindness) would not let her. Some of the other models thought she was just trying to get an advantage over the rest of them. They had a hard time understanding how she could look to them as if she can see, and then say she is legally blind. She explained a lot about what the world looks like to her and where she is missing. For the fashion show, she was very worried about falling. It turned out that the runway had glitter on it and you could just hear the relief in her voice. She explained that the glitter would show up in her perifepheral vision, so she'd know where the edges of the runway were even if she couldn't see well in the dark.

 

[Lives4Disney]

Michigan - thanks so much. I appreciate the reply. I know what you mean about those parades - it is deceptive sometimes with ALL those people in one area. We will just go and see how she does.

SueM - Yes!!! We have been watching that show! I could not believe it when she told the girls about her eye problems and that it was RP!! I told Lucy there it a girl on TV I want you to see and she is cheering for Amanda the whole way. Every time the judges comment about Amanda's eyes, I point it out to Lucy - She has the SAME beautiful blue eyes. People have always commented on her eyes. It is wonderful for us to see how Amanda handles the different challenges. Good for her! It is great for my daughter to see that someone with RP can be so beautiful and competitive and successful.

Thanks so much for the replies guys!! It is very kind of you!!

 

[SueM in MN]

Amanda is my favorite too!

 

[BETTYDISNEY]

Lives4 disney:

God bless you and your daughter. It must be so difficult for a parent to see a child go through this. I myself have RP but it only affected my right eye. It started when I was 12 tunnel vision and gradually nothing, I am sure you know the rest. I have also had MS since 1994 so I guess God blessed me with only one. Anyways, I wish you and your family the best at disney. Me and my family go all the time and you should never feel anything but normal when you are there. The place was made to have fun no matter what your situation is.

Good luck to you all and HAVE FUN!!!

 

[Lives4Disney]

BettyDisney - thanks so much for your reply. You are right Disney is a place for fun! We will just all have to get used to Lucy using her long cane. (the other night she tripped me at Target )
As time goes by we will adjust and it will seem "normal" to us, I am sure.

BettyDisney, you must be a strong lady. I deal with the issue of her vision loss by knowing that God only gives you what you can handle. Maybe He sends you to the edge a bit just to build up your strength, but it is no more than you can deal with. So far Lucy has been wonderfully accepting of what has come her way. (kids can really surprise) Last trip to Disney we sat behind a family that had several children, one that obviously was recoverying from Chemo and I really felt for that mom. I Know I couldn't handle it if one of my kids had to face that fight. I felt such awe and sorrow for those parents and what they must have gone through and are going through. Not to mention what the little boy suffered.

Thanks so much for the kind replies. We are looking forward to our first holiday adventure and first time with the cane!! I am sure we will be fine. I needed the pep talkl you all gave me.


Lives4Disney


Go Amanda!!!

 

[SueM in MN]

Originally posted by Lives4Disney
BettyDisney - thanks so much for your reply. You are right Disney is a place for fun! We will just all have to get used to Lucy using her long cane. (the other night she tripped me at Target )
As time goes by we will adjust and it will seem "normal" to us, I am sure.
Lives4Disney


Go Amanda!!!

If my DD is tired and I have to drive her power wheelchair for her, I regularly run over my own feet (but I am getting better at avoiding them - we were at dance class this morning and I didn't roll over them once). That's our version of normal.

 

[eternaldisneyfan]

I have bad night vision. Epcot will probably be the best because the ground has lights in the shape of stars. I was thinking that maybe you could by some glow bracelets and put them around her ankles? Just an idea...

I have many health problems. Generally, I have found Disney to be very accomodating. Don't be afraid to speak up. Many times they aren't trying to be unhelpful but just don't know what to do.

I hope you have a truly magical trip. I would love to hear about it...

Christamae

 

[NLK]

Lives4Disney, Please have your DD bring her cane. My DM developed Macular Degenagration at the age of 9 but only began using a cane 2 years ago at the age of 51. I can't begin to tell you how much better life is for her and us since she has been using it. She has no central vision but has periphial vision and almost no night vision. We have been to WDW many times but the last time it was so easy with her cane. Instead of people yelling at her for knocking into them because she couldn't see them, they said they were sorry for knocking into her when they saw her cane. She would walk into a store and a CM would come right up to her and ask if they could find anything for her. And instead of CM telling her to put on her glasses when she would ask for the price of things, they walked around the store reading her prices tags on anything she wanted. People were much more respectful and helpful with the cane. Without it, things were always hard. We were always telling people she's visiual impaired. and people don't understand those words, they only understand blind and the cane is an easy way for them to get it. I'm sure you'll have a great time and let us all know how it goes.

 

[Lives4Disney]

I want to say THANKS to all who replied to my cry for help!! We are just back last night. We left Beautiful 82 degree weather and came home to 4 inches of snow. YUCK!!!

We had a fabulous time. The CMs were wonderful. We only met one nasty one - a woman from France at guest relations at MGM. She just wouldn't let us talke about a GAP/GAC ??? She just said Fastpass - it's free. I am a nonconfrontational person, but finally said let me talk to someone else. I am done with you. So we did and it was very helpful. We only wanted to be able to avoid the stairs on millionaire. That was it. We really didin't have any other thing in mind. Just wanted to have the right not to go up those steep steps. We were offered, many times to be the next to see a character (cut in line) We wouldn't do that to the other kids waiting. We know how that can feel. The CMs were very kind. Even surprised us a couple of times by taking us out of line for rides to enter handicapped and skip the wait. We didn't ask, they just said to come this way.... That was a treat. On haunted mansion, we were directed - and I mean directed by a GREAT CM that let us skip that crowd from the round room to the cars. We went a back way and got on the cars at the exit. That was great for Lucy who cannot see in the dark at all.

People who saw the cane really tried to stay clear of it. I saw a lot of politeness this trip. It was crowded and sometimes I accidentally kicked the cane or Lucy put it in someones way and almost tripped them (oops) but with all those feet it's bound to get in the way a bit.

We had a great time, the cane was very useful. The person that replied that it lets people know someone is visually impaired is right. People do seem to only understand "blind". We know just whatthe poster means. If you have to go into an explanation of specifically what is wrong, it is difficult for people to get it. They see the cane, no question.

I am glad Lucy had the cane. It made her feel more safe and secure. Thanks to all who took the time to reply!!

Lives4Disney