An open letter from SueM

Discussion in 'disABILITIES!' started by SueM in MN, Jun 22, 2007.

  1. KirstenB

    KirstenB <font color=deeppink>Mom to "the nibbler"<br><font

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    Thanks Sue. Our family is fairly new with disabilities, thank goodness. The process of going through various diagnoses for our 21 mth old, both physical and cognitive/social has been an eye-opener. Some days are a bit painful, and it's hard to be objective and unemotional. Those are probably the days I should lurk, rather than post. This forum has been a wealth of information for me. I lurked for the longest time to try to be more helpful when I subbed in special ed classrooms. I never envisioned how helpful this forum would be on a personal level for our family as well. Kudos and hugs to you and Cheshire!
     
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  3. Linda Bell

    Linda Bell Goofy1

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    Stay that way! It speaks well of you that you assume the best in people. :cheer2:

    Speaking of assumptions...Cheshire is a BOY! :rolleyes1 Cheshire I do apologize for calling you a great gal in one of my posts.:ccat: :figment:

    Linda:earboy2:
     
  4. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    :rotfl2: It's real hard to figure out who are guys and who are girls sometimes. I've been just a hair shy of making the same mistake at times.

    ::yes::
    Cheshire is a guy. A great guy!::MickeyMo
     
  5. taximomfor4

    taximomfor4 <font color=purple>Needs a few Ricola drops<br><fo

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    Sue, just want to chime in with a THANK YOU as well. Without the support of several DISabilities members (yourself included), I would never have even attempted a WDW trip with my dd.

    Beth
     
  6. LindaBabe

    LindaBabe <br><img src="http://www.wdwinfo.com/dis-sponsor/i

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    Well said, Sue! I don't come here very often but I send people here and sure appreciate that you and the other mods are here for them, and doing your best to make this a nice place to visit as well. Thank you!

    I have ADD and I know from experience that particular little deficit can inflict one with hoof IN mouth disease. Sometimes things I think are fine to say will hit someone else the wrong way. So let me say, If I've been an offender - entirely possible, and I wouldn't even know it - I'm sorry. I NEVER intentionally zing someone!
     
  7. JoyMouse

    JoyMouse Mouseketeer

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    Sue, thanks for all that you and other moderators do. You are awesome! This is a super place to go for info. or even just stress relief. You are appreciated.
    Joy :cutie:
     
  8. HarbinsMom

    HarbinsMom Mouseketeer

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    Thanks to you Sue and Cheshire both for your patience and wisdom. Thanks for making this a *place away from the magic*.
     
  9. GroovyWheeler

    GroovyWheeler Earning My Ears

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    Just wanted to say "thanks" too. Even though I know what to expect when taking my manual wheelchair to Disney, I didn't know what to expect when I take my walker to Disney World next year. I got my question about taking my walker on the bus, as I would if I had my wheelchair, answered. But, I may have more when my trip gets closer. And, I feel confident that there are knowledgeable people on here that would be able to help me answer them.

    Samantha
     
  10. 5dwarves

    5dwarves DIS Veteran

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    Sue and e-friends:

    My DS was on a waiting list for a transplant from age 4 to age 7 and finally received his new liver last year - many thanks to donor families out there, saving someone else's life at the lowest moment in their lives; you are my heroes! After transplant, my DS has had seizures and it is thought that he may possibly have ASD or Aspbergers. The testing happens when we get back from WDW. To add insult to injury, a few months ago, he was bounced from hospital to hospital because there were fears that he had contracted colon cancer from the transplant meds he is on. Thank heavens that was not the case.

    About 3 months ago one of his care coordinators nominated him to a wish organization in our state and a little while later we found out my DS's wish was granted. Off to FL for all of us for the first time! I lived in CA for several years and did Disneyland frequently (back in the E ticket days). I have NO WDW experience. I have 5 children (thus the 5dwarves name). WDW in July/August with five kids is daunting...add a special needs child to that and it can become frightening. I met a woman whose DS has Aspbergers and she was preparing to leave for WDW (and is probably there right now). She sent me here for info and reassurance. This forum has been invaluable to me! Even though I have posted less than a dozen times, I have read a great deal and gained invaluable information. I have even gained the fun stuff like the tye dye Mickey shirt instructions! You have all helped alleviate a great deal of anxiety for me.

    I am very sorry that you and others had had to deal with ugly behavior on this forum. I am, however, extremely thankful and glad you, and so many others, perservere through the ugliness, ignore those that would manipulate, and still continue to help people like me. Many, many thanks!!!!!! You all have been part of the Disney magic for My DH, DS, DD, DS, DS, DS and me.

    :tink:
     
  11. MightyMom

    MightyMom DIS Veteran

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    SueM (and all moderators for that matter)

    You have the patience of a saint. I enjoy reading through some threads, but I know I would never have the patience to moderate this board.

    Having a child with a disability has opened my eyes to a world I was closed off to. You see the world in a new way. You notice the lack of ramps and accessible parking. You see a whole new level of ignorance. But on the flip side you see overwhelming compassion and pure goodness in people.

    For me and my family Disney World is a place we have gone to escape the world we live in. My son rides Big Thunder Mountain with his arms up in the air just like every other 8 year old boy. For those few minutes.....he is just like every other kid..... it doesn't matter that he has cerebral palsy.

    In between our visits... I visit these boards and live vicariously through other people. I come here open minded... trying to learn something new to make our trip a little more special.
     
  12. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    Thanks for your comments.

    I have the advantage of time on my side. My DD who is disabled is 22 years old, so I have been dealing with this a long time.
    At one time in my life, I did not have the 'patience of a saint' . I probably got less done because I was wanting everything done right now. I know that there are people who come to this board who are where I was that many years ago and I can be patient with them because I understand how it was to be where they are now.
     
  13. madenon

    madenon Mouseketeer

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    I'm learning on this board everyday. Somehow I got to think your DD is much younger. :confused3
     
  14. Janet2k

    Janet2k DIS Veteran

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    Four summers ago, I injured my leg. It was a serious injury that required a metal plate, eight screws, and a wire to fix. Since I was confined to a wheelchair for a few months while my leg healed, I began to think that it would probably be best if I cancelled my fall Walt Disney World vacation. After all, what fun would I be to my family if they had to push me around in my wheelchair? But a kind Dis’er outed me over here on the disABILITIES! board. Thanks to the wonderful advice (and moral support) that I received, I went through with that vacation and my family had the time of their lives: click here.

    I’m posting here because in this hectic world that we live in, most folks don’t hear often enough how they’ve touched the lives of others in very positive ways. I have never forgotten how my life was touched here on the disABILITIES! board by SueM in MN and many other Dis'ers. To all of you, thank you.
     
  15. celerystalker

    celerystalker <font color=green>Look! I'm yankeepenny!<br><font

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    Wow Sue! Great post! It could apply to all of the DIS, not just this section.
    I just came to get a question answered, and before I could get to the FAQ, I saw your letter.
    Maybe it should be required reading for everyone on the boards? ;)
    Hope things are going better for you and that people responded in kindness (I didn't read all the comments, just your letter.).

    Now I'm going to go look for the answers I need!
     
  16. Napria

    Napria It really *is* the Happiest Place!

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    In the world of autism there's a method of getting what you need out of these kids called Positive Behavioral Support (it stems from ABA). It means that you don't deal with the negative, except by finding the positive and reinforcing it. Well it's a little more complicated than that, but that boils it down nicely.

    After employing this method successfully with my DS, I've found that it works -- and is appreciated -- with other, neurotypical people (DH, for instance.) What a better world this would be if we could all practice this.

    As grandma always said, "If you can't say something nice, don't say anything at all." It was appropriate then, it's appropriate now.

    Thanks for all you do, Sue. I think you and CheshireFigment do an awesome job! I've had really great experiences here and if it weren't for the disABILITIES board, my son wouldn't have his wheelchair, we wouldn't have gone back to WDW last January and wouldn't be returning in April.

    Thanks,

    Anne
     
  17. kimsuenew

    kimsuenew DIS Veteran

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    Thanks Sue! What you do is appreciated! :)
     
  18. kmores

    kmores Hoping for a black and gold Superbowl! GEAUX SAINT

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    not sure if this forum is still being looked at or where the past ones are. last trip Disney 11/07 I got so worn out that I could no longer walk after 3 days of 9 day trip. I don't usually walk, and then definitely not the non-stop craziness that is Disney! I went back to resort and let DH take DD back to the parks. I was devastated. I don't have a true or full "disability" but I could no longer move my legs and hips - they hurt so badly. I went ahead and requested a scooter and got one later that day. I didn't get any GAC card or anything. I was surprised to get in to Indiana Jones earlier without a Fast Pass and felt bad about doing it - that wasn't the intention. When I could, I would try to park and walk. But the scooter was invaluable to me being able to continue to enjoy the parks with my family. I work with folks who have disabilities. I was still embarrassed that I could no longer walk like I thought and that I had to resort to the scooter. I don't usually walk that much in a month, much less in several days. However, had I NOT gotten the scooter, I would have spent the remaining 6 days in bed, unable to enjoy the trip with my family. The scooter allowed me to "save" my legs to get in the long ride lines. I was still in pain at the end of the day but not as much. And, others have "hidden" disabilities people aren't aware of. My dad had MS and looked fine...but he would tire very easily and couldn't handle heat. I want to be able t say I won't need the scooter in Nov but I will probably have it on standby anyway just in case.
     
  19. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    I'm not sure what you mean here. If you could be more specific, I'll try to help you with the answer. If you are asking what I think you mean, the older threads are still here, you just can't see more than the last few pages.
    If you are looking for something older in particular, let us know and we can help you find it.
    Don't feel bad. :hug:
    For Indiana Jones, that's the way they do things for 3 reasons.
    1) There are limited numbers of seating spacces for people using ECVs and wheelchairs, so they need to separate people using them out from the rest of the audience. That way, they can make sure they don't leave more people using assistive devices into the area than there are spaces for.
    2) The theater for Indiana Jones holds a huge amount of people and they 'load' them into the theater in a relatively short time. It is safer for the people using wheelchairs/ECVs and for the rest of the audience to 'load' as many of the wheelchairs/ECVs before the rest of the audience comes in.
    3) People using ECvs/wheelchairs have specific spots that a CM needs to direct them to. If they can direct a number of people to those spots before letting in the rest of the audience, that frees up some CMs for general audience direction.

    Even though many people get a Fastpass for Indiana Jones, it's usually not needed. Most shows we've been in there are still some empty seats when the show begins. That means that all the people with Fastpasses and all the people in the standby line got in to that show. If all the wheelchair/EV spots are filled up, it's possible that someone using a wheelchair or ECV may have to wait for the next show, even though there are many 'regular' seats left.
    Also, even though you may have gotten in faster, that just meant you waited inside longer - you still saw the same show at the same time as all the people with Fastpasses for that show saw.

    Many of the shows run like that for the same reasons.

    If you need an ECV for a trip, it doesn't matter whether you need it for that day or have a permanent disability. You need it, so it's not an 'advantage' to you. It's what you need to be able to go.
    In most cases, you either won't get in any earlier with an ECV/wheelchair or if you do get in earlier, it's for some reasons about how that attraction works that are not visible to you (like the ones I mentioned above).
    Also, many attractions have queues with a long walk in, no matter if the 'wait' is 5 minutes or 50 minutes. Soarin' and Bug's Life are 2 examples of long queues. It's important to know that so you can make a decision about whether taking the ECV/wheelchair in line will make your wait easier. We are trying to collect that kind of information on this board (the first park FAQs thread is started and is for Epcot). You can also ask the CM at the ride entrance.
     
  20. Bill_Lin

    Bill_Lin Grateful to God

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    I have also found Sue and Cheshire Figment to be very helpful and professional.

    I had my eyes opened recently, by the moderators, regaring the ongoing problem of people trying to inappropriately obtain or use GACs. It really is sad. GAC information is clearly a very sensitive issue and is handled very well by the moderators.

    Thanks to Disney for working so hard to make accommodations. The G.A.C. is a wonderful solution. I suppose that, human nature being what it is, any system that is devised will have some people trying to exploit or circumvent it. The greater the benefit of cheating, the more people will try to cheat. A trip to WDW is a significant investment of time and resources. The expectations and opportunities are very high when people get there. The deserved popularity of the parks creates crowds, naturally. What all this adds up to is a multitude of highly motivated individuals all wanting to have the same experience at the same time. Those with manners will wait. Others will act almost desperate to get on the next ride and will be resentful of those who "stand in their way" or who use the G.A.C. for accommodation.

    This phenomenon is certainly not unique to WDW. If anything, there less rudeness and complaining there (in my experience) than in other crowded venues, such as concert lines and sporting events. Perhaps this is due to the high degree of courtesy, and the positive attitudes of Disney's highly trained Cast Members. Disney wins my "most smiles per staff member" award of any place I have ever been.

    I made the mistake earlier of naively disclosing too much information about how my Give Kids the World G.A.C. worked. First of all, I did not understand that each G.A.C. is unique. Secondly, I did not realize that dishonest folks might use the information to get at G.A.C. under false pretenses.

    A thank you to Sue and Cheshire Figment for explaining this to me.

    It is my desire to help people planning Wish Trips to WDW find information that will assist them. The planning time is often short for these trips, as dates for travel may not be confirmed more than 2-3 months in advance. This causes the parents to be a bit "frantic" in information gathering. For this reason, I have included links in my signature to help people find such information.

    Bill
     
  21. connolly14620

    connolly14620 Earning My Ears

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    Thank you for all that you do for this board. I stumbled across this board today, as I was researching access issues for my son on a trip we are planning for next June. This board is invaluable and I appreicaite all the unpaid time and effort you put into this board.
     

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