Traveling to Disney World with our blind daughter.

[rjthkids]

Hi! We will be traveling to Disney World in about a month with our two children, age 17 months and four years old. Our four year old daughter is completely blind due to ROP, and has no residual vision whatsoever.

I was wondering if any one could clue us in to any services that Disney offers that might be beneficial? I saw the visual disablities website on Disney, but it mainly referred to Brailled information, and as she is only four, that's not really relevant.

My only real concern for her, is getting lost in a crowd. She is pretty good at staying with us and of course I keep my eyes on her, but we've honestly never been in a large, wide open area with tons of people like this before. I just get nervous that she might take a couple of steps, get jostled and disoriented, and then we'll be seperated and she won't have any idea how to navigate her way to find me. This is one of my worst nightmares!

She needs extra time to board rides, but I don't imagine that would be a problem for Disney staff...we wouldn't need to alert them would we?

TIA!

 

[DebWills]

Hello rjthkids,

>>>My only real concern for her, is getting lost in a crowd. She is pretty good at staying with us and of course I keep my eyes on her, but we've honestly never been in a large, wide open area with tons of people like this before. I just get nervous that she might take a couple of steps, get jostled and disoriented, and then we'll be seperated and she won't have any idea how to navigate her way to find me. This is one of my worst nightmares!
>>>

We had a couple thoughts to share with you. First, since your daughter is 4 and there is lots and lots of ground to cover at WDW, perhaps getting a stroller for her would be a good idea. She might feel safer in the stroller and of course when practical, she could walk instead of ride.

We know of some folks that use a "harness/teather" combination for their child. A quick google search came up with the following (we're sure there are others):

The Kid Keeper by OneStepAhead: "A chance you can't afford to take. It's all too easy to lose hold of your child's hand in a crowd, or lose track of him among clothing racks. That's why this patented tether is a must for adventurous tot! Very secure, with comfy padded shoulder straps. The detachable strap adjusts from 2'-31/2', and the waist adjusts from 14"-251/2" to fit explorers of all sizes."

>>>>>
She needs extra time to board rides, but I don't imagine that would be a problem for Disney staff...we wouldn't need to alert them would we?
>>>>>

It's a good idea to let the Cast Member know you need extra boarding time. That way, you won't feel "rushed" and they know to pay closer attention!

If you find yourselves at Animal Kingdom keep an eye out for "manipulatives" -- these are bones and other objects that your daughter can touch and feel to get an idea how things look. Some of the Kid Stops have them as well as the animal trails.

Guest Services at each park rents "audio guides" that include a tape player and headphone, but not sure how appropriate that would be for a youngster.

Dark rides/shows where there's a lot of dialog or music would be good, -- like Spaceship Earth, Tiki Room, Little Mermaid, Country Bears, to name a few.
Other rides will be good just for their physical sensations, like the coasters,
if she's big enough, or the Merry Go Round, the Mad Tea Party, Dumbo.

Anyway, these are just a few ideas. Hope they help.

Deb Wills and Debra Martin Koma
Co-Authors "Passporter's WDW for Your Special Needs"

 

[rjthkids]

Thanks for some of the suggestions. She always insists on doing everything *herself* including walking, LOL, but the tether would probably solve that problem perfectly. I know it looks bad to other people, but I think it's worth the stares to know she is safe.

I will definitely be on the look out for manipulatives in Animal Kingdom as well.

Thanks so much!

 

[Ambassador]

We have lost our little Delegates twice for a few tense moments. Other than constant vigilance, we also take these precautions: take digital photos of the kids in the morning as a record of what they are wearing and look like; attach a pre-printed label with last name, resort and cell phone number; and instruct them to recognize and seek Cast Members. Because this last one may be difficult for her, you may want to get CM's involved yourself should she become separated.

You don't want to frighten her unnecessarily, but perhaps you can discuss in terms she can understand what to do in case she should become temporarily separated. Maybe she can learn to ask for Cast Members?

Fortunately, you are visiting at a good time when crowd levels are near their lowest.

 

[rjthkids]

That is an *excellent* idea Ambassador. Really, that one would have never occurred to me, but that will be perfect. You'd think these basic ideas would occurr to me, but honestly, we have never been in this type scenario before.

Thank you so much. We have a digital camera a cell phone, what a great safeguard.

I feel so much better now. This has been keeping me up nights for the past month!

 

[Kaybee]

I would also get her a Pal Mickey who would give her info about the rides and things going on in the park. That would be fun for her to carry and listen to the things he says.

 

[Meezers]

I don't have children but I think the harness thing is such a great idea. Little ones need to stretch their legs. But try to walk with your arm straight up in the air (like holding an adults hand) and try to take steps to match Andre the Giant!

In Germany the legally blind wear arm bands...black with 3 white dots....don't know if that is more advanced than our society or not.

The Pal-Mickey sounds great.

I had a pet name tag made for all of us...and we are adults...just in case anything happened....they come in cute shapes and we laced them on our shoe laces.

I assume she knows she is blind right? She can tell someone that she is blind and please get a CM? Maybe you could get a CM to let her feel their special name badges so she is familiar with the shape. If she gets separated she could just sit down on the ground and scream...that is what I wanted to do when I lost my Mom at Osborne lights!

 

[Lives4Disney]

Hi, I have a 9 yr old daughter that is losing her sight due to RP. At this point she has severe tunnel vision and blind spots within her functioning visual field and night blindness.

I would also suggest the stroller route, as your daughter is so young she will get tired walking those long days. I have a 5 yr old that rides in a stroller at WDW. She doesn't normally - just at WDW!!

I am also worried about the issue of losing my daughter in a crowd. We are constantly hanging on to her, and she is fearful enough that she hangs onto us, too. She uses a white cane and that helps her a lot in the strange environment.

These are some of the things that she (and the rest of us have enjoyed).
The music everywhere is wonderful - just like a fairyland. Your little girl will enjoy that! The jungle boat ride is fun, with all the jokes and sounds of the waterfall and the narrator talks about everything as you pass. The haunted mansion will be too scary, I think - with all the spooky sounds etc. especially if you can't see. My daughter loves the astro orbiter - the spinning and feel of the wind blowing thru her hair! The tea cups, too & there is cute music on that one! The pooh bear ride is fun - the ride car varies it's ride - bouncy like tigger, floating in the flood and it is narrated really cutely. She will love "It's a small world" the music over and over! It is my girls' fave!! Peter Pan is fun, too. It is semi narrated. Even Mickey's Philharmagic will have some things she may enjoy. There is music from all the popular Disney movies and even a few smells make it out to the audience.

I think she will have a wonderful time & when my kids are having fun - I am loving it, too! I know you will just get a kick out of her delight at so many great things. There is so much going on to hear and feel. The characters have been really sweet to my daughter and spent extra time with her cuddling and petting her and letting her pet them.

Belle has story time next to the castle in a little alcove. My girls thought your daughter will probably enjoy hearing the stories and the Cinderellabration show in the castle forecourt has a lot of talking parts and music.

All the parks have things that your daughter will just love. MK is just our favorite. I could go on and on!

I have learned to just ask for what you need. Don't be shy about it. Just be polite and explain to the CMs at the attractions and they have been great for us.

My family is adding to this faster than I can type - but there are so many things that have such a full experience - like The Great Movie Ride with all the different music and sounds to listen to. (Alien is scary - so be warned and cover her ears)

Something I have only recently tried, but have been hearing forever works, is to get to the parks before opening so that you are right there when they do open. They are nearly EMPTY for about 1 to 2 hours. You won't have to deal with the crowds and fear of losing your daughter, and you will get so much more done.

Have a great, safe trip!
Lives4Disney

 

[SueM in MN]

Something I have only recently tried, but have been hearing forever works, is to get to the parks before opening so that you are right there when they do open. They are nearly EMPTY for about 1 to 2 hours. You won't have to deal with the crowds and fear of losing your daughter, and you will get so much more done.

Have a great, safe trip!
Lives4Disney

This is the best hint. My youngest DD takes a long time to get up in the morning, but DH has taken our other DD and guests to MK when the park opened and really got everything they wanted to do done before 11. And that has been several times during Spring break/Easter.
He and I have done the same thing in July (when it's quite busy too).

For boarding rides, for most, the ride car comes to a stop before you board and then doesn't start going until the "dispatching CM" can see that you are safely on.
There are some rides with moving walkways (kind of like escalators, but on a level). The walkway moves at the same speed as the ride car, so once you get to the ride car, it's like the car is standing still compared to the moving walkway. Here's some information on the moving walkway rides:

Peter Pan and the escalator that goes up and down to the Tommorrowland Transit Authority are the only things that can't be stopped. I would not recommend riding eiter of those if you are unsure about getting in.
For the other "moving walkway" attractions, the walkway can be slowed or stopped if you board at the exit. They usually will slow the walkway; if you actually need it stopped, ask. They can do only emergency stops if you are at the regular boarding area (and, trust me, you don't want to have an emergency stop.)
Here is a list of the "moving walkway rides".
MK

• Peter Pan (can only do emergency stop).
• Tomorrowland Transit Authority. Steep moving ramp to get up to boarding area; moving walkway at boarding and exit (can only do emergency stop).
• Pirates has a moving ramp to get back up to ground level after exiting. There is an elevator. If the CM doesn't point you towards it, ask.
• Haunted Mansion - you do miss the "Shrinking Room" by boarding at the exit.
• Buzz Lightyear
• Space Mountain

Epcot

• Spaceship Earth (board at exit)
• Journey into your Imagination
• American Adventure area to get up to theater has stairs or an escalator (your choice). As you come into the building, there is an elevator to your right where wheelchair/ecv users can go up. As you wait for the theater to open, you are on a steeply ramped area. After the show, everyone exits via a steep ramp (non-moving).

Studio

• Rock N Roller Coaster doesn't have a moving walkway, but you have a limited amount of time to load.

AK

• Kali River Rapids Wheelchair users or people with special needs can board at a stationary raft. They have a very clever arrangement to “trap” the raft and hold it securely in place while boarding. It is not easy to transfer someone into the raft if they can’t walk (because of the fairly narrow door space and needing to step down narrow steps into the raft), but you can take as long as you need to transfer in and out. Once the boat is boarded, they “untrap” it and you go one your trip. When getting off, your boat will float past the normal unload point before being “trapped” so you can get off (so, don’t panic, you’re not going on another trip).

If you need to board at the exit for those rides, you will need a Guest Assistance Card (look for posts about GACs). But, most people with 4 year olds without special needs do have the same concerns getting on those rides (because 4 year olds tend to be sort of slow when you need them to be fast). So, what happens most often with small kids is the parents pick them up and lift them onto the rides.

 

[SueM in MN]

I was wrong about Imagination. It used to have a moving walkway before it was renovated a number of years ago. We ride the special wheelchair car (which boards at the exit and does come to a complete stop). The regular boarding place doesn't have a moving walkway. Here's a link to the page on the DIS site about Imagination, which shows the boarding area. You can see there is not a moving walkway.

 

[SueM in MN]

Another possibility if it's not real busy, would be a child alarm - they are sort of like electronic leashes. The child wears part and you wear part. When the 2 parts are too far away, they begin to beep. That way both you and the child know you have gotten too far apart.
Here's a link to one that I found on google, searching for "child alarm".
And here's another.
There seem to be quite a few different kinds.

One of these may actually work better than the leash kind. I've seen kids get a bit tangled with those sometimes. SInce she can't see what obstacles in her way might catch the leash, she might be more likely to get tangled.

 

[DVCDawn]

Just an idea...

When my oldest DD, who is now 6, was younger and wanted to walk instead of ride in her stroller I let her do so as long as she held onto the stroller with one hand and walked beside it. I let her set the pace and direction and just walked along with her while I was pushing the stroller. She got the freedom of walking and I felt better about keeping track of her. I've used this "technique" everywhere from WDW, to crowded shopping malls, to airports. To this day, she still holds onto the stroller her little sister is riding in when we're out together. It's become a habit. I also have children's tethers but didn't use them much. Mostly in airports or especially crowded times in WDW. I have the harness style one and an elastic one that goes around the child's wrist and yours. I like the elastic one better.

Let us know how your daughter enjoys her first trip. We'd all like to know!

DVCDawn

 

[Lives4Disney]

Just an idea...

When my oldest DD, who is now 6, was younger and wanted to walk instead of ride in her stroller I let her do so as long as she held onto the stroller with one hand and walked beside it. I let her set the pace and direction and just walked along with her while I was pushing the stroller. She got the freedom of walking and I felt better about keeping track of her. I've used this "technique" everywhere from WDW, to crowded shopping malls, to airports. To this day, she still holds onto the stroller her little sister is riding in when we're out together. It's become a habit. I also have children's tethers but didn't use them much. Mostly in airports or especially crowded times in WDW. I have the harness style one and an elastic one that goes around the child's wrist and yours. I like the elastic one better.

Let us know how your daughter enjoys her first trip. We'd all like to know!

DVCDawn

We do that exact thing with the stroller. We do it with shopping carts at grocery stores & Target. My girls are just in the habit now of holding on - especially my vision impaired daughter. We just all stick together better that way!

Lives4Disney

 

[dyna]

Yeah either the leash or hangin on to stroller or your hand when it's VERY CROWDED park opening and closing esp or when leaving a large show.

HMMMMMM DD could wear a whistle around her neck only time she be allowed to use it is if mommy got lost.

You might get 2 name badges for DD one with her name and the other saying she is blind.

I'm wondering if you might could get some special meet and greet times for your DD where she could have time to touch and feel a few of her favorite characters. Remember only face characters talk tho.

My best friend of 45 yrs went blind as an adult she was good about carrying her cane as much to identify herself as being blind as to help her get around in public. PPL ARE RUDE!!!! They don't pay attention for one thing. One of the problems she had in stores was ppl saying excuse me and her not moving because she didn't know which way she needed to go. And when she asked they would get rude and say lady you standing in my way. This could go on forever.

One of the worst experinces my friend had was when she was admitted to hospital and the attentant that took her to her room stopped wheelchair in middle of the room and when she didn't get out of chair the attendant rudely said We are here you can get out now and turned and LEFT my friend standing in the middle of the room. At 1st my friend thought the attendant was just gonna put the wheelchair outside the door and be right back but NO she stood there a good 20 mins before she sat down on floor where she was at. A couple hours later a nurse noticed my friend on the floor and jumped on her cause she was sitting on floor she said Well no one showed me to my bed Nurse Said It's right there in front of you can't you see it? She said NO I"M BLIND and before I get in bed I need to be shown where bathroom is. The nurse said that NOT my job I'll get an aid. My friend was then left sittin in floor for another 20 mins.

Hope you and your DD has a wonderful disney trip!!!!! Sorry I rambled so much..

Funny story here.

My DD was about 15 or 16 months old and this was our 1st time of going in mall with out her in stroller we didn't plan to be in there but a few mins or she would have been in stroller.

We get in the mall and meet a crowd of about 10 ppl walking together coming our way DD got lost in the crowd not being able to see anything but knees. She turned around started walking with them. We followed her all the way to the other end of the mall before she realized she was no longer with mommy and daddy. The ppl she was walking with noticed her at the same time she noticed they wasn't mommy and daddy.

She handled it well but the look on her face when she finally saw us standing a few feet away was priceless.

 

[alabamaalan]

Our children are sighted but my wife is blind and she is very paranoid about keeping up with them.

When we last went to WDW our daughter was 5 and we used a velcro wrist strap with a small "leash" to my wrist. However, she would insist on that even if she were sighted, I think.

I like to ensure that enough space does not get between us to lose them. There was not enough of a gap between us for someone to walk through, and if they did, they shouldn't have.

When we return this year, my youngest daughter will be 5. She is more prone to getting distracted and doing her own thing. I can assure you that she will be holding the hand of an adult or will also be leashed to my wrist.

Of course, I can't imagine any 4 year old, especially one with a visual disability, not having physical contact with an adult when walking in the first place

As far as the attractions go, we have had some close calls with me trying to help a small child board and then assisting my wife when we have moving boarding areas. Fortunately, we will have other adults with us on this trip. So one person can assist DW and someone else can make sure the youngest gets on correctly.

 

[missypie]

I read this thread just so my heart could be warmed about how things have changed so much for the better. My grandpa had a sister named Pearlie who was blind...she would have been born around the turn of the last century. They were Kentucky farm people. Pearlie was given no education whatsoever. She sat in the house all day every day, with next to no stimulation. When her parents passed on (by this time she would have been middle aged) she was sent to a nursing home to live. It breaks my heart to think of the terrible life she had, just because she was blind. Thank the lord that you are exposing your daughter to all that life has to offer!

 

[Lives4Disney]

I read this thread just so my heart could be warmed about how things have changed so much for the better. My grandpa had a sister named Pearlie who was blind...she would have been born around the turn of the last century. They were Kentucky farm people. Pearlie was given no education whatsoever. She sat in the house all day every day, with next to no stimulation. When her parents passed on (by this time she would have been middle aged) she was sent to a nursing home to live. It breaks my heart to think of the terrible life she had, just because she was blind. Thank the lord that you are exposing your daughter to all that life has to offer!

Missypie - Your reply breaks my heart, too. When we found out a couple of years ago that our daughter was going to lose her sight, I was devastated & what made it worse was I did not know anyone at all without their sight. I kind of had the picture in my head of how you describe your aunt & that is how my beautiful, smart, daughter would be perceived. I had no idea of how successful blind or vision impaired people can be. All I could think about was who will marry her?? How will she drive?? What about a career??

Her school is being absolutely fantastic giving her all the training she will ever need for a fabulous future. She is learning to use her cane and other mobility training, braille reading & writing, she has a talking computer and dictionary, all kinds of gadgets to help her with her school work. Thank God things have changed tremendously since your poor aunt's days. I have heard wonderful stories of blind doctors, lawyers, teachers......Right now my daughter says she wants to work as a concierge at WDW. Wouldn't that be great??!! We have been there enough that she should fit right in!

She is such a wonder to me and her dad. We are so proud of her progress and how easily every new thing is coming to her. We are in awe of her at how she answers other kids' questions regarding why she is using a white cane.

I never thought I would have a child with a disability - just didn't occur to me. There are none in our families at all. I feel so thankful that the world has changed from those old days. We are just CRAZY about our daughter and want ALL the BEST for her & we can see how she will be such a wonderful addition to society even without vision.

Lives4Disney

 

[Nanajo1]

I think all the ideas you've received are great. I like holding on to the stroller because it would be less likely that someone would try to come between your DD and the stroller than try to cut between your family walking side by side. I've seen this happen where a family walked right through a mother and son.
My DGDs has a history of "washer woman elbows". Their elbows dislocate easily so we shy away from wrist leashes but are looking into the fanny pack looking tethers.
I would look into A GAC if only to officially give the CMs a heads up.
Pixie Dust for a great trip.

 

[rjthkids]

She is such a wonder to me and her dad. We are so proud of her progress and how easily every new thing is coming to her. We are in awe of her at how she answers other kids' questions regarding why she is using a white cane.

I never thought I would have a child with a disability - just didn't occur to me. There are none in our families at all. I feel so thankful that the world has changed from those old days. We are just CRAZY about our daughter and want ALL the BEST for her & we can see how she will be such a wonderful addition to society even without vision.

AMEN, and what beautiful words.

I remember when J was born how scared we all were. I was exactly 24 weeks along... her AGPAR score was a 1. She was eleven inches and 16 ounces. The doctors talked to us and told me she had about a 10% chance of survival. Those first few days I didn't even allow myself to hope that she would make it. I froze just to see how tiny she was hooked up to all those machines in the NICU.

When it finally became clear that laser treatment was not working for ROP and she was going to suffer permanent vision loss, I was incredibly conflicted. Part of me really grieved for all the stuff that she would never be able to do. It broke my heart to think that she would never know what my face looked like, that one day she could have children and never be able to gaze into their eyes, or we never get to share a sunset together or star gaze at night. Another part of me felt ungrateful because compared to death, what is losing sight?

What finally helped me was talking to someone at the National Federation of the Blind who said "I understand why *you* consider it a loss, but you have to realize that she doesn't know that. She has never had sight, it's not a loss *to her*, living without sight is her idea of normal. She will not grieve the lack of vision, or feel inadequate or as if she is defective so long as you do not project that image to her. She will not feel bad for herself if you choose to feel good about her and her abilities."

That really, really struck a chord with me. And it's true, she has no idea what it means to see, or any idea of what it means to be sighted vs. blind. She does realize that there are things that we know about that she can't grasp because we "see" with our eyes while she doesn't (like colors for example, or knowing that it is day time vs. night time just by using our eyes), but honestly, it is really not a big deal to her. She doesn't get sad about it, and it's really a very matter of fact thing to her. Some people use their eyes to see, some people use their hands to see when their eyes don't work.

This is probably my biggest battle with "the public" so to speak. It's very obvious that she is blind (both of her eyes have started to discolor and cloud over) and all sorts of strangers will approach out of the blue and make comments like "You poor thing!" or "bless you, it must be so hard to raise a child who is blind!" or "That's just awful!" It bugs me because she is starting to get to an age where she is really tuning into things that people say, and when they use that constant tone of pity it makes her start to wonder. One day, there was an old woman in the grocery store line behind us who was cooing to my younger son and J was helping me empty the cart. After a minute or two the woman noticed that J is blind and she practically sounded like she was going to cry she was in such a fit of sympathy. "Oh, is she blind? Oh, that must be so hard! It must just break your heart! What a saint you are ! That must have been so devastating! Can she see AT ALL?" I responded very nicely but very firmly that my daughter was fine and we're all very happy and thank you for your concern. When we were going to the parking lot she was quiet and then after I had her buckled in the car she asked me "Mom, is there something wrong with me?" She was really concerned about it to. I was able to quickly reassure her that she was just fine and she dropped it fairly quickly, but I am extra sensitive to that now, especially given what an enormous helping of self-esteem she came home with. I swear, what I really need to do is invite these people to our home so they can witness her and her younger brother duking it out in my living room over toys, or in the kitchen over helping cook, etc. etc. All you have to do is watch a 17 month old who could care less whether she's blind or not, and a four year old who care less she's blind either, and it really hits home just how normal life can be, sighted or not sighted! She can hear him coming a mile away, and man does she hoard toys at the very *thought* he might be coming to take something she's playing with.

 

[SueM in MN]

What finally helped me was talking to someone at the National Federation of the Blind who said "I understand why *you* consider it a loss, but you have to realize that she doesn't know that. She has never had sight, it's not a loss *to her*, living without sight is her idea of normal. She will not grieve the lack of vision, or feel inadequate or as if she is defective so long as you do not project that image to her. She will not feel bad for herself if you choose to feel good about her and her abilities."

That really, really struck a chord with me. And it's true, she has no idea what it means to see, or any idea of what it means to be sighted vs. blind. She does realize that there are things that we know about that she can't grasp because we "see" with our eyes while she doesn't (like colors for example, or knowing that it is day time vs. night time just by using our eyes), but honestly, it is really not a big deal to her. She doesn't get sad about it, and it's really a very matter of fact thing to her. Some people use their eyes to see, some people use their hands to see when their eyes don't work.

People have done the same "Oh, how sad what she can't do" with my DD. Living in a wheelchair is her normal.

If you have never seen the movie Mask (1985, starring Cher) , there is one part where the "hero" of the movie is talking to a girl who is blind about colors. He gives her "colors" to feel - a hot potato is red, as it cools off as is warm, it is orange, when it's much cooler, it's yellow. He has other colors too, but I can't remember any of the others. I thought it was brillant. I had a friend in high school who was blind from birth and one of the few things he didn't have a concept of was color. That movie is very good and gives some good insites into perceptions about people and disabilities (the movie is actually based on a real family).