Brain Injury at WDW

[Candlelady]

Hi!,
I was wondering if anyone has any experience with bringing a high functioning adult TBI'er to WDW?

Thanks for any and all input.

 

[teri]

Welcome to our board. I am sure somebody here has some experience to share. Take a look at our FAQ - just lick on the link in my siganture, below, and look at the section about the Guest Assistance Card to see if it will be useful.

What kind of accomodations will he need? Is he mobility impaired? Problems with hypersensitivity? Will you need a respite break?

 

[Candlelady]

Hi Teri,

Thanks for the welcome.
I'm not sure if we will need special assistance or not actually, or if anyone can tell us something we don't already know. Just thought I'd ask.

29yr old daughter is high functioning now. To look at her, except for her limp, you'd never know she has a disability, which presents it's own set of problems.

I'm mainly worried about the crowds and noise level. She frustrates easily with too much going on around her and is liable to 'freak out' all of a sudden. She will let us know when it is about to happen and as long as we are able to find her a quiet place relatively soon, she is ok. I'm also afraid of her getting lost because she forgets everything you tell her. We cannot walk around holding hands to stay together, she would be too embarassed.

She absolutely will not use anything to help with mobility even tho it will be hard for her to stay on her feet in the parks. She cannot walk for more than a half hour at a time because of the tone in her leg and foot. She doesn't want anyone to 'know' there is anything different about her. (she doesn't realize people can see her limp) We will just have to walk slowly so she can keep up with us.

 

[teri]

Many of us have special needs... most times, you don't see my limp, either, and nobody can see my arthritis. The GAC comes in very handy when I need to avoid stairs, or need to sit down while waiting.

OK, definitely get the GAC. If she has a tendency to overreact to stimuli and there may be a need to get her to a quiet place all of a sudden, having the GAC is like an instant signal to the CMs that you need help, understanding instead of a disapproving look, or protection. If there may be times when she cannot handle a touchy line, for example, they will let your party wait in a more protected area, away from the crowd.

Look at the FAQ section on special needs families - one tip we put in there was to wear similar color outfits - have t-shirts made, or wear something that looks the same and will stand out. It makes it easier to spot each other, and if she is lost, you can say to the nearst CM, "My special needs daughter who is wearing a shirt just like this has disappeared..."

If she won't use a wheelchair and you really think she will need it, make up an excuse for having it along. You need the wheelchair to carry that heavy bag because our shoulder hurts, and she needs to sit in the chair to counter-balance it. Read the FAQ section about Pacing. Many of us have dealt with relatives who did not want to use a wheelchair or ECV, and have found that for some of them, explaining the concept of pacing helps them accept the value of having the wheelchair along -- they can see and do more without getting sore and tired early in the day.

 

[SueM in MN]

Hi and welcome.
I saw your post yesterday, but I had to get off the computer then and didn't get back until now.
Besides the hints you already got, I suggest you plan to go at a time when it isn't traditionally that busy, if you can. One way to tell how busy it's expected to be is to look at the prices for WDW hotels.Avoid "Peak Seaon" (which is Feb 14 thru April 20 for 2002) and "Holiday Season" (which is Dec 20 thru 31st for 2002). The slowest season is usually January, September and the first half of December.
If you go then, you will find it's a lot less busy (less stimulation and less crowds to worry about). We went a few years ago in Sept and found there were few waits in line and places where we barely saw anyone else.
You may find that your DD will not allow you to use a GAC (another sign of being different). I guess I'd still get one, just to have in case you need it. If you are at the parks for a few days without one and then decide it will be helpful, you can go to Guest Services in any of the parks to request one. Going at a non-busy time, you are much less likely to run into situations that make one necessary.
The other hint I have is to use fastpass as much as possible. You get a fastpass and then return to the ride/attraction later and have a 5 to 15 minute wait in line. Here's a link to fastpass info in case you don't know about it.
For the mobility, you will have to decide if teri's suggestion about getting a wheelchair, just to have, would be useful or not. I know in our case, my DD has cerebral palsy and a "from birth" brain injury. She gets "stuck on things" (I hope you know what I mean) and she would get stuck on a strange wheelchair. She has her own wheelchair, but there are times when she can't use it (like at the Pirates ride and if we have a tight connecting flight at the airport). She will agree to use the "different" wheelchair, but when the time comes, she won't do it. No way, no how. Logic doesn't help. It's just that she won't and it would definately freak her out to even have it by her.
Another thing to think about for dealing with the memory parts, is the think back to tools she might have been taught in her brain injury rehab. Some people use little notebooks to jot down things they need to remember. The act of writing it down helps to imprint it into the brain and then you have it with you too as a reminder. Think of situations that might need some decision making and help her make up a little notebook (maybe one for each park). I don't know if you have ever been involved with a local chapter of the Brain Injury Association. This is the the one for Minnesota, but I know they have a lot of helpful info. I couldn't find a link on their site to the Brain Injury Association of America, but I did finally find their site. Here's a link to the page that has links to individual state programs. You might be able to get some hints from support groups in your state.
Good luck and have fun.

 

[Candlelady]

Hi,
I had a lengthy reply, but when I submitted it to post, the server was too busy and it was all lost!

I don't have time at the moment, but will post a reply by this week-end. Thank you all so much for the info you have so graciously supplied.

Talk to you soon

 

[Candlelady]

Thank you for all the suggestions!

As far as the mobility issue, forget it, she will NOT use a wheelchair. She knows when we are trying to 'pull one over on her', which is a good thing. Shows her brain is continually making new connections. I'm hoping when she sees all types of people using an ECV, she might consider that option. When DH & I were there, we were amazed at how many ECV's were tooling around. If we continuously comment how 'cool' they are, and that she will be able to keep up with us, she just might try one. Then we won't be able to keep up with her!

I will definitely get a GAC for her just in case. I'd rather be safe than sorry. Though if anyone, including a CM (which I highly doubt) gives her a problem, DH will step in rather quickly and quietly to 'settle' things if you know what I mean. He's very protective of her.

SueM, I know all too well about the 'stuck on things' issue. Right now we are dealing with the 'I'm not throwing ANYTHING away' issue. Old clothes, shoes, empty make-up containers, old magazines, torn sheets, pens without ink, the list goes on. She will actually try to go thru the trash and pull things out if we aren't around. I understand why, but it still drives me crazy

We are hoping to go in November before Thanksgiving. Possibly the first week of Feb. We haven't made our ressies yet. (New DVC members, yeah!) Do you think that will be a good time to go?

Thanks again

 

[lisapooh]

The quietest time is November and December between Thanksgiving and Christmas. First couple of weeks in Dec are great. Added to the low crowds is the fact the parks are all decorated for Christmas and the special Christmas activities have started, like Mickey's Very Merry Christmas Party and Candlelight Processional. We made a special trip up right after Thanksgiving to see Marlee Matlin narrate the Candlelight Processional and it was absolutely beautiful.

 

[Candlelady]

SueM,
Sorry, I failed to answer you on the BIA. Yes, I'm familar with the organization. To be frank, they didn't do a whole hell of a lot except pass out info. The majority of the help came from the rehab hospital, Gaylord in Wallingford, CT. It's an awesome rehab for brain injury. I know the BIA is different in every state tho and sure some are better than others.

Unfortunately, brain injury doesn't get the funds that other disabilities receive. (of course the majority of disabilities don't get enough as it is) I'm sure that's because the majority of people see BI as 'mentally challenged' and that always seems to put them at the bottom of the list for funds since they need others to fight for them. I guess people are afraid of anyone who is 'different' and think they might 'catch' something. I'd like to take some of those people and string them up by their *&%*. I can't change everyone's feelings at once, but I am working on them one at a time.
Hope I worded this correctly. Sometimes what I type, doesn't always come across as what I meant.

Lisapooh,
I originally wanted to go the week after Thanksgiving, but we must drive and am worried about picking up a rental car the day Thanksgiving or the day after. I'm afraid there won't be any left on the lots since that is a busy time for them. So I am thinking about the week just before. I also have to see what is available for ressies at BCV during that time.

 

[SueOKW]

Hi! A quick "Welcome Home" from on DVCer to another! I hope you find ways to really enjoy your membership.

Teri - love that tip about the colored shirts! While I know Kevin can't escape me, my two very active little girls can.....

How many days and counting??? oh yeah.....7!!!!!!!
Sue

 

[teri]

First week of February was very nice last year. Not crowded at all, warm enough to swim a few times. The week after Thanksgiving was great as well this last year.

If she is making connections, you just never know... reasoning with her about the benefits of using an ECV as long-distance transport may be worth a try. Worth a thought, anyway. No reason why she would need to stay in it when at the attractions, but if she can pace herself early in the day, not wear herself out getting from point A to point B, she won't get tired out so easily and will be able to do more.

You are going to love DVC. I know we do.

 

[Candlelady]

Sue & Teri,

Thanks for the 'Welcome Home'. Boy it sure does make me smile every time I hear those words. Actually our first trip was a month and a half ago for our 30th. We absolutely positively fell in love with WDW and the weather was great.

Buying into DVC was only a dream for me. As a gift, my youngest is financing the DVC. She says this way we will always have the magic and will be able to take her sister. Of course, she added that we are too old to use all 40 yrs so she will have to take it off our hands when we can't 'get around' like we used to. lol.

Teri, I'm definitely going to try to get her to use an ECV by renting one when we get there. That way at least she will try it and hopefully view it as being one more 'fun' thing to do. If not, then when she gets frustrated enough with all the walking, she might give it one more try. I have visions of her running people down that get in her way tho.

 

[mamajoan]

Candlelady, this is a suggestion I have seen on other posts that may work for your dd.
If available have her try an ECV at the grocery store or Target etc. Altho they do not seem to handle as smoothly as the Disney ECV's or private scooters, she may get a kick out of it. I had a BI pt that an OT to out in the evening to try it out. It was a quieter time. It worked out well for all concerned. Have a great time on your trip.

 

[SueM in MN]

We just got back from a visit "home" to OKW and VWL. It was great and you won't regret joining.
I'm sorry to hear that the BIA in your state wasn't helpful . I don't have any personal experience with the MN chapter, but I've heard good things about them and hoped other states were also good.
IMHO from viewing ecv users over the years, I think Epcot would be the best place to try one oout. There are long distances between things there (incentive to use one to avoid walking), a lot of people using them (incentive to not think of using one as being different) and the area is pretty spacious with wide sidewalks and less people per square foot than the other parks.
I think one of the problems with brain injuries and funding is people tend to think therapy only to re-teach people to walk and talk. Once the person with a brain injury can do those things, the plug tends to be pulled on any other therapy. I also think brain injuries are threatening to a lot of people. They can look at my child who has cerebral palsy and think they are safe from that. They look at your child who has a brain injury and see the same thing could happen to them or someone in their family. It's easier just to ignore it.
Not that there is a lot of help out there for people with CP and multiple disabilities either. There are lots of people in the world who would just like anyone "diferent" to be somewhere out of sight and out of mind. But, we don't intend on tuning back the clock.