Any tips for families with multiple disabled travelers?

Discussion in 'disABILITIES!' started by SixUnderSix, Apr 27, 2014.

  1. SixUnderSix

    SixUnderSix Earning My Ears

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    We have 6 kiddos and 3 have significant special needs - we've traveled to Disney on our MAW trip for one of our three year olds but have since, adopted another special needs 3 year old and we are fostering a special needs 1 year old. I have some questions from people who are more experienced than I am (P.S. We are an "on the go" family and we enjoy life with our kiddos to the fullest...yes I realize my situation may not be what YOU would want to travel with Disney with, but we want to celebrate with our angels while we have the chance - all three of our 'special' children have (or have had) life threatening issues - so please keep comments positive :-))

    Here's what we look like:

    Mom (me) - age 33 - perfectly able

    Dad (husband) - age 38 also perfectly capable

    Daughter - age 9 - A wonderful helper

    Son - age 8 - severe ADHD but nothing that would interfere with our trip

    Son - age 6 - a little hyper but lots of fun and able to help

    Son - age 3 - Wheel chair, hypoplastic left heart syndrome, feeding tube, oxygen, pulse ox monitoring, and heat intolerable due to heart condition (he's prone to excessive sweating and overheating -- some of which we can manage with extra tube hydration).

    Son - age 3 - wheel chair, severe fetal alcohol syndrome, legally blind (optic nerve hypoplasia), feeding tube, severe neurological impairment, etc.

    Foster son - age 1 - immobile but not in wheelchair due to age (we will need to keep his stroller with us), he has a tracheostomy, feeding tube, requires oxygen, continuous pulse ox monitoring, frequent suctioning, also very heat intolerant, etc.


    First of all, what accommodations do you think I should request? Will the mobility accommodations be enough or should I also get a DAS because we can't be in line for long periods of time due to our need for so much medical equipment that may require to be plugged in frequently and our need to have a reasonable place to suction our foster baby, etc. and our need to keep 2 of our kiddos out of as much heat as possible (I know it's Florida, though...lol).

    My other question is about our foster baby whom we will be taking with us in September. He has a trach and requires a trach collar/heated humidification at night. I'm not sure if I could even pack our compressor and system and try to fly it there so my next logical choice is to rent one. I'm not sure if I'm not typing in the right search words or if I'm digging deep enough on google but I'm having a hard time locating a company that I can rent one from.
    I've left myself ample opportunity to find and secure a rental, get required prescriptions for the oxygen, etc. but need help finding a company that I can rent these items from.

    Any other suggestions in general (I've read the FAQs but know many of you have specific conditions, or your children do, that mirror ours and thought you might be able to help a little).....tips for traveling with 2 wheelchairs, a large medical stroller, 2 tanks of O2, 3 feeding pumps, suction machine, 2 pulse ox monitors, plus their supplies???

    Hope you all have magical days - thanks for any help you can give :-)
     
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  3. disney david

    disney david DIS Veteran

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    Are you staying onsite and using buses and is the medical stroller have tie downs for transportation and will they all stay in the chairs while on the bus. Sorry if it come off wrong just trying to see because depends you may need to take more then one bus. If you are not or driving sorry and just forget I asked I hope you have a great trip.
     
  4. SixUnderSix

    SixUnderSix Earning My Ears

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    We are staying onsite and were planning to use Disney transportation so we can fly there and back. The two wheelchairs have tie-downs but the stroller does not (although I can carry the 1 year old and his equipment so that we can fold the stroller if need be). We might be quite the circus trying to get on and off the buses -- yikes!
     
  5. disney david

    disney david DIS Veteran

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    That good you won't look like a circus take your time have fun. The stroller will need to be folded but the kid can stay until the other kids are streaked then pick him up and fold the stroller. Remember your their to have fun and relax the least amount of time and stress should be the buses. Have a great time as I am sure you will have a great time and the drivers will make sure you and your family have a safe and fun ride to your destination.

    One last question you using me not sure how's my wheelchairs they can hold their buses are different style. If your using them I would call not only to have it noted but to ask that question and see what they can do.
     
  6. lanejudy

    lanejudy Moderator Moderator

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    Welcome! Wow, my first thought is making sure you have enough help - if you plan to keep the 3 yr olds in their wheelchairs, and use a stroller for the youngest, you'll need 3 "pushers" as well. Are your older kids going to do this? I know I get tired pushing a stroller around the park all day, it might be more of a task for them than you anticipate. Is there another adult who can go with you? If not, I'd plan breaks to give everyone a chance to recharge (so to speak).

    As for the DAS, you know the family's needs best. Most lines are under cover or even indoors, so really heat will be a bigger problem around the park rather than in lines. You can plan 3 FP+ times and work around those. But if you anticipate needing to deal with suctioning and such, you may well want to request one, even to have "just in case."

    For equipment rental, I'd start with Care Medical. There should be a phone number in the disABILITITIES FAQ sticky. If they can't provide it, they may be able to direct you to the correct source.

    Enjoy your vacation!
     
  7. Betty Rohrer

    Betty Rohrer DIS Veteran

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    only thing I can think of is you might need an extra adult, grandma or teen to help with pushing or keeping track of the walkers. even if the 3 year old are used to moving own chairs, how do they do in a crowded mall? also what do you plan if 6 year old gets tired and not wanting to walk?
     
  8. Southerndisney

    Southerndisney Mouseketeer

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    I would ask for the DAS because of the reasons you mentioned. Is there anyway you could go in Nov or Dec? It is much cooler then and would help with over heating. My family will not even consider going in Sep. I hope you have a great trip and I wish you extra pixie dust!
     
  9. Yoshiandi

    Yoshiandi Just working for my next Disney fix..

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    having two kids with the heat intolerance, my LAST choice would be any time from June-September.

    We went in September 2 yrs ago and my kids practically melted in the heat even though we had cooling scarves, misting fans, and stroller with canopy. I have 2 with SN.

    Another thing to think about is trying to get around with 3 wheeled units LOL September is F&W festival and it can get busy.

    Getting on an off buses is going to be fun. And FYI: you will get whispered comments and looks. It takes a bit to get just one wheelchair on them. :O) Ignore them.
     
  10. SixUnderSix

    SixUnderSix Earning My Ears

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    Okay..thanks for the replies.

    Both 3 year olds can wheel themselves a little (my heart kiddo doesn't have much stamina but is a master at moving that thing for shorter distances). My other 3 year old does okay but being blind, not ideal at Disney. However, my husband can easily push both chairs at once (very light). When I'm out, I push our double stroller with one hand and a wheelchair with the other.

    We went last year when my 6 year old was 5 and he never needed a stroller. I read on here that some kids need one at that age (and to each their own) but that is definitely NOT something I'm willing to do...lol. We move at a slower pace though due to our other kiddos.

    I may consider bringing grandma if she wants to come.

    I would LOVE to go when it's even cooler but we are doing the military tickets and have to use them by Sept 27. So we scheduled the VERY latest in the year that we possibly could (going from 20th to 27th).

    Thanks for the suggestions and idea to call care medical :-)
     
  11. SMD

    SMD DIS Veteran

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    I've advised clients to ask their doctor or medical supply provider if they can refer them to a rental place at their travel destination. Sometimes it works, sometimes they get a blank stare.

    Do you have a contingency plan if the 2 wheelchairs won't fit side by side in queues for your husband to push? Another adult might be helpful for the older kids, so they can possibly do other things while the younger ones are being attended to.
     
  12. Betty Rohrer

    Betty Rohrer DIS Veteran

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    do not think you can push the 2 chairs side by side in line and it will be hard enough just walking it park with people walking in front of you
     
  13. WheeledTraveler

    WheeledTraveler DIS Veteran

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    I definitely think having an additional adult (or if you could somehow spring it 2 additional adults/older teens) will make a huge difference. I'd definitely request a DAS. Just remember you need to be able to explain what their needs are. Giving names of conditions isn't going to mean anything to the CMs at GS.

    I definitely think there may be an issue with one adult pushing 2 wheelchairs (or a wheelchair & stroller) through the queues, however, in some of the flatter queues it may be possible for the 3 year olds to help push themselves. I would not count on that, though, since many queues have inclines and that's going to be hard. Also, you should consider coming up with strategies for keeping all the kids stopped on inclines. There are some queues where it's pretty much impossible to not spend some time stopped on an incline.

    I'd go through now and start filtering out what rides are just not going to be possible. For example, Ellen's Energy Adventure is 45 minutes long. That's on top of any time spent in the queue (even with a FP+ and a DAS, you may end up spending 10-15 minutes in the FP queue after you return to ride). It cannot be stopped once it's started (it causes the ride to shut-down and need to be reset). So if 55-60 minutes is going to be too long, you'll want to skip it. You also will need to decide which kids can transfer and which kids can't. While the stroller can't be tied down, there are rides where a regular manual wheelchair should be able to be tied down, however, probably not 2 manual wheelchairs at once. At those points you'll have to decide if you want to split up (which could be difficult if it's something the 1 y/o can't transfer/be carried on to ride) or have one of the kids transfer.

    SueM's signature has a link to a trip report done by an adult on a ventilator who used to post here (sadly, she has since passed) and there's at least one occasional poster who has experience bringing kids with multiple serious disabilities (sorry, I'm blanking on her name). Hopefully those may also be of some use to you.

    I agree with the suggestion to contact Care Medical. As well, you should contact the company that supplies the oxygen to both kids on oxygen to see if there's a supplier in Orlando they've worked with. It's unlikely to be the first time they've had the request and many suppliers do have a network of other suppliers they work with. The Orlando area O2 supplier may also be able to rent the trach collar.

    I hope you have a wonderful trip! If you can ever find the time after you come back, I'm sure others would find a trip report helpful.
     
  14. Aristomommy

    Aristomommy <font color=deeppink>We were in the “wild animals”

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    I would recommend having one adult per child with medical needs. That way if one child needs medical attention, to cool off at the baby care center or leave the park, the rest of the family can continue their day and meet up after a while. Also for busses you can take different busses to parks and back if there are many wheelchair users. DAS seems to make sense to you, maybe even more than one DAS.
     
  15. alizesmom

    alizesmom Pumba is my hero but I love Donald

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    We've done WDW with 2 kids in chairs. Both have trachs, feeding tubes and vents at night. Our son can't transfer and that really reduced the attractions he could enjoy. We made a lot of use of First Aid for cooling off, feeds and diaper changes. We went early September which was still too warm for our temp sensitive son. We had no problem with busses since we folded our daughters chair and she sat with us. Our son was tied down so we were always first on and last off. We went prior to the start of DAS so I can't help there. If I can help with anything specific, feel free to PM me.
     
  16. alizesmom

    alizesmom Pumba is my hero but I love Donald

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    Just reread your post. You can't take oxygen on a plane so you'll need to rent that as well.
     
  17. SteveMouse

    SteveMouse DIS Veteran

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    If you need oxygen in flight, please contact your airline for options.

    You also mentioned a need for electricity. You will need to be a little careful, as plugs may not be available where you expect them, especially in the MK.
     
  18. TLSnell1981

    TLSnell1981 Tiny bubbles... make me happy... make me feel fine

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    We are a party of 3 adults, 2 with mobility issues....both with DAS. This trip has been very difficult with the recent changes. Returning at a particular time is a pain (literally), but doable. We have only accessed 3 attractions in 2 days. We had to walk or use a wheel chair. Sadly, 2 attractions only had 1 wheelchair available. We also had to transfer from a moving belt, otherwise....no ride.

    This is mess and it's very disheartening. We have visited regularly for over 34 years...more than 20 times in the last eight years. Our Disney days may be over. They really don't care...and I'm ready for a good cry.
     
  19. lost*in*cyberspace

    lost*in*cyberspace DIS Veteran

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    I agree; I don't see how you are going to manage with only 2 adults. You really need to consider bringing at least one other adult to help. I also have no idea how you are going to manage the flight with all of your kids, especially with the wheelchairs and strollers. If you haven't already done so, you need to call your airline (they usually have a disabilities contact number) and make sure they are prepared for you and you understand the rules for oxygen on flights, etc.
     
  20. amykathleen2005

    amykathleen2005 Wishing....

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    I am going to be honest. Is the 1 year old really stable enough to go on a trip to Disney in the heat of September? Babies overheat extremely easily and with his fragile condition I would be worried about how he will handle everything. Would you be able to wait until it is cooler?
     
  21. nemajovc

    nemajovc Mouseketeer

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    This is just something that worked with my son in the heat when he was younger (no special needs but it gets awfully hot where I live)
    I put some large frozen ice ( blue plastic or other) (try to get longest lasting) behind and around him in his stroller and we were able to stay in the heat a lot longer.
    You might consider renting DVC so you have full fridge for meds and freezer or see what other options for full fridge
    Good luck with your wonderful family
     

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