Tips For Taking A Legally Blind Child To Wdw

[emilee&tylersmom]

In October we are taking our two children (ages 12 and 9) to WDW. This will be the 4th trip for both of them. Unfortunately since our last trip our 9 year old daughter has been diagnosed with a disease called Cone Dystrophy. This is a disease that effects the central vision of the eye. Due to this disease, in the last 9 months my daughter has went from 20/20 vision to around 20/500. We have decided to take her to WDW because no one really knows when the vision loss will stop. My question is I have heard alot about the
GAC. She needs to be right on top of something in order to see it and sunlight is a huge problem for her. Also I am very concerned about moving conveyer belts you have to step on to get on many rides. Do you think getting a GAC card will be an issue? I do have a letter for the state, stating that she is disabled but to look at her, she looks and is a beautiful, energetic, capable 9 year old. Any suggestions for making this trip easier for her would be greatly appreciated. Thanks!!!!!!!

 

[eeyore45]

I dont have the advice you may need, but I so understand special needs ( and my grandma was blind, and I have such a respect for that disability!!)

http://www.allearsnet.com/pl/visual.htm

 

[SueM in MN]

Also, check out the disABILITIES FAQs thread near the top of this board.
In the 3rd post on that thread, there is a link to the official WDW website where you can get the Guidebooks for guests with Disabilities.
Also on that post, there is a link to a past thread about boarding rides, with information specifically about boarding the rides with moving walkways. A GAC (GUest Assistance Card) that allows her to use the wheelchair entrance would be helpful because the moving walkway could be slowed or stopped for her.

 

[Lives4Disney]

Hi! I am so sorry to hear about your daughter. I kind of know what you are going through. I have a daughter that just turned 9 July 1st. When she was 6 she was diagnosed with RP - she is losing her peripheral vision gradually losing it closer to her central vision. She is night blind and also losing areas of her central vision. I know what you mean about your daughter not looking disabled. We have the same issue.

My daughter, Lucy, started cane training last September in school and so now when we go on vacation she brings and uses her white cane. That cane has been wonderful for us in more ways than one. It gives her a lot of extra security - she used to trip/stumble/fall often. (We didn't know why) She actually fell down the brick steps at Tony's Town Square restaurant before the Halloween party and hurt herself badly - kind of ruined the eve. And it also lets others know that she is visually impaired. Most people see the cane and think she's totally blind, though. At least it is a clue that there is an issue and she's not being clumsy or putzy on purpose.

Anyway, we have found that the CMs at the ride attractions are very helpful and ask us what we need. We have gone in the back way in Haunted Mansion, skipped lines at some rides - just because the CMs were sweet! (Lucy started calling the white cane her "candy cane" after those incidents) We have had front row seating for shows, restaurant seating on the main level.....

We didn't actually have a great experience getting the GAC. The woman was VERY unkind, told us over and over "Use fastpass - it's free".... and wouldn't listen. This was on our first trip with her using her cane and us knowing she was visually impaired. We wanted to make it easier on her by not having to go up/down steps mostly. I told her that I am done talking to you, I want to speak to someone else. This other CM was better, but I still have found that speaking to the CMs that work the rides is the route to go. Getting the GAC was like begging for help from these hard nosed crabs. It wasn't a good experience for us. It was pretty humiliating overall. I didnt' feel like these Guest Services CMs had any empathy whatsoever.

Sorry for the bad news re the GAC. Of course you should try - you may get a kind CM, but if you have any problems, just be assured that at the attractions you will encounter a kinder attitude. Just let them know your daughter's situation and they will let you know the best way to handle it.

Is your daughter receiving cane training or Braille lessons?

Good luck & happy planning

Lives4Disney

 

[emilee&tylersmom]

Thanks everyone for you helpful answers.
Lives4disney, I am sorry to hear about Lucy. Emilee is not learning braille or how to use a cane. Her vision loss is all central. She has extreme difficulties with reading and writing. (school is now extremely stressful for both of us) So her mobility is almost normal because she has not lost any peripheral vision.

I was worried about unkind CM at WDW. I was hoping that getting the GAC card would be easy. I do not want this trip to be stressful for Emilee. If she can't see something she would rather just not do the activity at all. Also the sun is very bothersome, almost painful, for people with Cone Dystrophy. She wears special glasses when outside, but sometimes that is not enough.

Any ideas or suggestion or greatly welcome regarding our trip to WDW or in raising a daughter with a vision disability.

Thanks!!!!!

 

[Lives4Disney]

emilee&tylersmom - I don't mean to scare you away from the GAC. That was just my experience and reading this board, it seems to not be that uncommon. Just wanted to warn you because I know how heartbreaking it is to have a child that needs help, and to have to kind of beg for it & be judged by some stranger with no experience with handicaps is difficult to stomach.

Keep Emilee in hats & sunglasses for sure. Lucy also experiences sun sesitivity as this is also common with RP. Hers isn't as bad as you describe Emilee's as being, but as the disease progresses toward the center, I think this is to be expected. As you know, many rides have waiting areas under shade.

Good luck with everything. Sorry I don't have more answers. I really think if you explain what you need at the attractions it won't be a problem to get help for Emilee.

Take care! I hope your school is helpful & gets Emilee the help she needs to make it less stressful!!

Lives4Disney

 

[emilee&tylersmom]

Lives4disney
Thanks, its nice to "talk" to someone in the same situation. Somewhere I thought I read you could get enlarged park maps. In the past both of my children have loved the park maps...planning at night in the hotel room for the next day and just to make sure they did not miss anything. Do you know if such maps exist. Right now everything is enlarged for Emilee and I know the regular park maps are much to small.

Thanks for the advice on the GAC card. We are going to give it a try and hope we have success. The only thing we want from the card is front row seating so Emilee can enjoy the shows like everyone else. Hopefully we only run into friendly cast members.

Lastly, does your daughter have any trouble with the rides in which you have to go from one moving floor to another? (ex: Haunted; Peter Pan) This worries my husband and I but luckily we decided that she is still small enough that we can pick her up and place her on the ride if we have to. Any tips and suggestion would be appreciated!!!!!

Have a great day!!!

 

[SueM in MN]

Here are some past threads that might be helpful:
What types of assistance does WDW offer from the blind?

Just back with mom who is blind.

Boarding rides if you need more time.

 

[Lives4Disney]

Emilee&tylersmom - I really don't know about enlarged park maps. I would like one for Lucy, too. I know they have Braille maps, but I have never seen them, either. Maybe at Guest Services??? I am going in August. I will ask about the enlarged maps.. ..I will email the concierge, actually, and inquire.

I absolutely have troubles with those moving walkways! We just both double team Lucy - one parent on each of her elbows and place her in the car. On Haunted Mansion we go in the back way, that way you do not have to fight the mob in the dark to get to a car. It is still dark, but you will have more time to get Emilee into a car. Or have the CM stop the ride so that she can board. They will do it for you. Just don't be afraid to step forward and ASK for what your daughter needs. I am learning this quickly. I am a very shy person by nature and do not like to make any special requests/scenes AT ALL, but she is my daughter and I feel like you, I want her to be comfortable and not feel awkward. It is hard enough what is happening to them. We have to see to it that they get what they need.

I fell asleep last night with you guys on my mind. I understand how you are feeling. It is tragic. For me, I am feeling so much better about it all now that I see how positively Lucy is responding to her cane training and how terrific she is doing with the Braille lessons & other mobility training. She is so brave it makes me feel like I am the one with the hangups and I can deal with that!!

Let me know if you have any other questions. I will email concierge and see if they can let me know about those enlarged park maps.

Take care,
Lives4Disney

 

[emilee&tylersmom]

Live4disney

It's helps to know that I am not the only parent who feels this way. I definately have more hangups about this disease than Emilee does. Is is because I can only think about the future? Your right it does get easier especiallywhen my husband and I see how wonderfully she is handling everything. When we found out about this disease in September I believe I cried everyday for about 4 or 5 months. Emilee has cried ONCE!!!!! What a trooper. She never says why me (only I do that about 100 times a day).

When do they (or who does) decide that your child needs to be taught to use a cane? Do you not need a cane if you only lose your central vision? WOW I can't stop with the question. If feels good to "talk" to someone who has and is going through the same thing. Emilee is the only child ever in our school district that has had Cone Dystrophy and no one seems to know anything about it.

Please let me know what you find out about the enlarged maps.
Thanks!!!!!

 

[SueM in MN]

Please let me know what you find out about the enlarged maps.
Thanks!!!!!

According to the WDW Guidebook for Guests with Disabilities , large type guidebooks are available from Guest Relations in any of the parks and also from the map racks near the main tips board in each park.
People have also gotten copies of the Guidebook for each park mailed to them by emailing WDW or by calling this number:
General Information: Voice: 407-824-4321 TTY: 407-827-5141
I know of people who have gotten regular park maps mailed to them ahead of time, so they should also be able to send the large type ones.

 

[emilee&tylersmom]

WOW!!!!!
SueM thanks...I am calling right now. What a treat that would be for Emilee.

Thanks

 

[SueM in MN]

here's another thread I found:
daughter with RP first visit to WDW
I think they will send the maps, but if they don't, you could also take a ampa (if you have one) to Kinkos or someplace like that and ask them to enlarge it.

 

[Lives4Disney]

Thanks SUEM I am going to look into it, too! I have NEVER seen the enlarged maps near the other maps in the parks, though.

Emilee&Tylersmom -It really feels good for me to know I am not alone, too. In our family, there is NOBODY with this RP disease. We had never heard of it before and had no idea it could effect on of our kids. When they told us in August of 2002 that Lucy had pigment on her retina, I was thinking no big deal, laser it off......Then I had a rude awakening later that month when we saw a great doctor at UIC for a second opinion. It took my hopes of a "mistake" away and everytime I was alone I also cried for months.

As far as the cane/mobility/braille.....We are blessed that we live in a GREAT school district that will give Lucy all she needs and more. There is no one in our district with RP, either. They just play it by ear. But last fall, they had the district mobility expert watch her walk, play, move around the class, meet with her and more. She wrote up a report and felt that Lucy could benefit from the use of a cane mainly due to her lack of confidence on stairs, her walk was kind of funny (i never noticed it - but she kind of cautiously felt her steps with her feet) Her posture wasn't great (again I didn't notice at all) when she walked. Little things the specialist saw. She started working with Lucy 2 X a week about an hour each time. She is learning the cane, and also things like how to use another person as a guide, mapping type skills, I know there's more but I am short on brain power today. I can ask Lucy for you.

She also gets books on tape and a special tape player from the state. The school set this up. There is so much they are doing for her I can't even keep up. She doesn't really need these yet as she enjoys reading, but maybe Emilee would benefit from something like this.

She has typing/keyboarding 3X week and also Braille at this time. She can see, but they are preparing her for the possible future with no sight. She is a fabulous student so it isn't really an issue to have to pull her out of class so much at this point.

I am glad to hear from you. I have felt so alone as there is nobody at all around here with this disease. I met another mom on the DIS that has 2 kids with RP. We email eachother and it is nice just to have somebody to relate to.

If you would like to you can PM me if you just want to "talk" or vent!! I understand.

Take care & maybe I will hear from you!

Lives4Disney

 

[Lives4Disney]

Emilee&tylersmom - - those threads suem is listing are mine or I have read them as there really hasn't been a whole lot of people on the dis with visual impairments. When I see a thread, I jump right in!!

I have to look into those special maps!! If you find out anything, could you let me know!! I have to run so I can't do it today -

Thanks,
Lives4Disney

 

[emilee&tylersmom]

Thanks I will try to PM you this weekend...if I get a chance and if I can figure out how to. I would love to stay in touch. We have a very supportive family but its nice to talk to someone who REALLY understands.

 

[emilee&tylersmom]

Lives4disney

I will definately PM you (if I can figure out how to).
Also I called the phone # posted by Suem and was then given another number and then transferred again. Finally I was told that they did have enlarged maps at the parks but they could not mail them out ahead of time. The said to stop at guest services and pick one up. Have a great weekend!!!

 

[emilee&tylersmom]

Oops sorry. Did not think that my post from 8:00 worked. Guess it did cause now I have two of almost the same thing!!!!!