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Old 01-27-2013, 12:26 PM   #1
welovewdw
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First time traveling w/ son in wheelchair

Our 22 year old son became very ill with a rare genetic disease that caused copper to accumulate in his brain - he got sick a little over a year ago. We have been to WDW many times but this is our first time with him since he got sick. He is unable to talk, chew, swallow or walk and has severe dystonia and is completely tube fed. He requires 24/7 care at the moment. The good news is he is completely all there cognitively. =) He LOVES Disney and I'm really excited to get him there - I think it'll good for him! (and all of us! it's been a heck of a year!)

I'm doing all the research I can and these are my concerns:

1. I'm worried about where to feed him - obviously too old for baby care centers. Does anyone have any suggestions?

2. I'm also a little worried about transferring him into ride seats - he can't walk at all, we kind of stand him & pivot him to transfer - he can bear weight, just not move his legs well. Do you think rides requiring transfer are doable?

3. does anyone have any hints about where to keep all his stuff we have to bring with us? Locker or bag that hangs well on a permobil wheelchair? We're kind of new to the whole wheelchair travel thing - figuring it out as we go!

4. My last concern is when he gets excited, he does this neurological humming thing occasionaly. (it is loads better than it used to be!) I'm very worried it'll drive others nuts or disturb them.

I just want to be prepared so he can have fun. He loves Disney as much as I do and I really, really want this to be fun for him. His life right now is basically medical facilities - PT, OT, speech, etc.

Any hints on traveling with someone with this many issues would be very welcome.

Thanks very much -
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Old 01-27-2013, 01:52 PM   #2
goofieslonglostsis
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First up; reserve yourself a good block of time, grab a drink and start reading the stickies here on top of the disabilities-section. You will find yourself reading so many valueble info you never even considered until reading about it!


As far as specific questions; tube feeding. Obviously being aware of it's temperature restrictions and Florida weather is important. If on continues feeds; no need to feel restricted to airconditioned areas. There are all kinds of bags out there that keep tube feedings at their safe temperatures. With summer warmth in Florida, it is a smart move to play it really safe and also protect the tube from bag to body itself. There are some aids out there for it, but you can also make ones yourself by using isolation fabric and put together one that fits his specific tubes, possible enlongator he might use etc. Keeping tube out of direct sun will also help hugely.

If on intermittend feeding; feel free to store the feeds at the first aid locations in each park. That way no worry about temperatures. You can feed there if desired, but coming from another tubefeeding user? Great thing about it is that you are nto locked into one location. Once you get the hang of it, you can hook on safely anywhere as long as you can wash your hands (or have wiping clothes or alike on you). Unfortunately some pumps and bags are more sensitive than others, but that's more a case of learning what his stuff can or can't take and go from there.

Now there are special bags for tubefeeding but IMHO they are a HUGE pain, taking up too much space and being very impracticle. Using a normal bag goes much further after some initial sowing. Put in a few straps to hold the feeding bag, if sensitive pump some straps to also hold pump, small hole if need be for the tube to find it's way out and it will work perfectly for feeding. You could even get one size for just feeding and a bigger one for when needing to be about with more stuff.


Transfers; read the sticky, really! Not just info by words but also by pictures. You will also have experience from having done WDW before. You KNOW what certain rides and cars look like. Great beneficial help to translate to the knowledge you have about transfers you can do together or not to size up odds. Also grab yourself an accessible parkmap at entering a park. They will note all types of transfers that might be needed. If not sure about a specific ride; ask at guest services or a CM working the ride. Obviously not all rides will work when needing to transfer with help, but you'll find many rides that can't be ridden without a transfer will be doable when you can transfer with help. :-)


Bags; again, I'm very pro-regular and rather con-"specialized". Not just most of the times much more expensive, but less options and somehow they simply never ever well......... fit my needs, let alone my wishes. (he I AM female!!)

You do mention Permobil, but welcome to this world there are many types of this brand and they will differ a lot. What might work for a C500s might not work for a C500sKB for instance. Making it more difficult to just broadly compare "whomever also uses a permobil" is how the chair has been outfitted. Seat can differ greatly when it comes to cushions, upholstry, formfitted or not, you name it. What works great for a chair with a thin back might not be an option for those with a chair that has a back that can be as much as 10 inches deep. OK, enough of the negative, here comes the positive; general population of bags. Woohoo! It can take some time to find workable options, but they are out there. Trial and error basically. Depending on his backrest you might find a backpack works great, as long as the straps do not irritate him. Or install a small clip on system to the bar on the back of many Permobil chairs and just click any desired bag on there. Others prefer a bag or at least some storage on their side. Safest then is between your leg and legrest on the side.

Officially permobil does have one (.............) bag that can be used on the side of the chair, but have found it to not fit even standardized chair configuration, let alone anything else. Haven't found anyone yet who does use it (we get it for free as part of how the chair gets delivered, here).

Depending on his likes, dislikes and abilities, others are big users of their footrests. Like myself; my footplate is one bit plate (only type they made with standup function ). Placing my bag in between my legs on the footrest actually helps me prevent me hooking my leg into the other, which I love doing unconciously but is hurtfull. Or if wanting something closer yet not that amazingly heavy; I will hang a bag by it's strap on my empty fold out joystickholder located right beneath my armrest. I've got the option to operate my joystick on both sides by simply transferring it over and thus a holder on both sides. Obviously only use one, so the other is the perfect piece of metal to hang a bag off of.


A lot will vary on what you and both him prefer combined with abilities etc. Many situations can be managed with general run of the mill store available bags, sometimes tweaked a bit yourself with needle and thread to make ones needs or wishes fit better.


Do remember that you can always store medical needed stuff at first aid. For things you dont need on you constantly that can be very welcome if bulky or heavy.


Humming? Honey; that is not your problem. It's not as if he is trying to be annoying or has intentional behavioural issues. He's not even close to possibly harming anybody physically or psychologically. The latter is where I draw a line but before that? It's NOT your, or his for that matter, problem that this comes as part of how his illness presents itself in his case. It's not like he could help it, just like he can't help not being able to run around the park. And yeah, the latter will "upset" some. Just like that is their problem to deal with, so is it when he hums. Unfortunately it's part of his health problems. He can't help it, you can;t help it, it's not hurtfull, it happens. Period. Just like babies will sometimes have a big cry hour right when they are in a line for a ride that will make us hear it all that better. ;-)

I could see how you might think it over, in case it where to happen in a situation where you might not be able to leave, sounds are vibrated back worse, you can be stuck for a longer time and that might make things worse for him. Luckily you know that's triggered by overstimulation. Perhaps you know how to reduce it or where possible prevent it. And if so be the case, if for instance his By Far Most Popular ride would trigger that and would require a long wait in an echo-like waiting line; discuss it at guest services. There are only a few rides that have the option, but you might find being able to wait in a seperate waiting area will help you minimize the effects where possible.

But honestly; let not stop you or him baed on what others might think. People will always think and be annoyed. It's human nature. When something is part of a disability or health issue, you do what you can to minimize and it is not possibly harmfull to anyone; let it never become your or his problem what others think. If you do neither of you will have any kind of life. While growing an appropriate thick skin will be a huge benefit for both of you.
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Old 01-27-2013, 02:54 PM   #3
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The pp poster covered everything.
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Old 01-27-2013, 04:05 PM   #4
welovewdw
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Wow - thank you!! You have really helped tremendously. Thank you so so much. You can tell I'm fairly new to this. I want him to have as full a life as possible and to recover as much as possible but in the meantime, have some fun!

I have spent the time since posting reading the stickies - and wow! Great help - loved the info from lewiswharf about the transfers! The photos are helpful - I know the areas but never noticed some of the stuff honestly. Did not know about leaving stuff at the First Aid stations - thanks! I'm going to see if his college backpack will work he has 2 hooks on the back of the chair, but also an attendant control that I have to work around. GREAT idea between legs - I can hook a bag on his knee separator thingy and rest on his foot rest I think, too - just a little more storage!

He gets bolus feedings every 3 hours, so I have to pack the food in a small cooler.

Thanks for the advice on the humming - you are absolutely right, I need a thicker skin - I just hate to ruin someone else's time, but you are also right, it's very like a baby crying, not his fault at all.

He has a C500 ESP w/ recline and tilt - tried to get the stander but insurance wouldn't cover it. Makes no sense but he ended up with a separate stander that actually cost more - but that's another story.

Again - thank you so so much for taking the time to answer with so much detail. It was just what I needed. =)
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Old 01-27-2013, 06:20 PM   #5
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The FAQs sticky at the top of this board will give you lots of information on individual rides.

First aid will store the feeding equipment and provide a safe and private area for the actual feedings.

Bags are a matter of personal preference. I would visit some stores and experiment with several different bags until I found one that suits my needs. Some people just use a backpack and hang it over the back of the chair.

I would visit GS at the first park you go to and talk to them. There may not be anything you can do, but they may have some helpful suggestions.
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Old 01-27-2013, 09:34 PM   #6
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If you can, I'd suggest bringing him to a store that has a variety of bags to try. There's a lot of personal preference and some of it will depend on what you're putting in the bags. I've never used a wheelchair specific bag because regular ones are cheaper and, quite honestly, I'm a girlygirl and want my bags to all look nice Be aware that anything you put on the back does have the potential of increasing the length of the chair, but that may not be a problem with your needs.

For times when I have someone with me and I'm using my powerchair, I often put non-essentials in a backpack that has clips on the straps and I've clipped to a bar that's across the back of the chair. It doesn't impede the attendant controls at all. If there's a bar across the back you may be able to setup something similar. If I'm alone, have anything I may need to access easily, or have something that I want to always know where it is (i.e. meds), I use a combination of a handbag and messenger bags. I can balance things between my feet which makes it a little easier. I do sometimes hook my handbag's handles over the armrest of the chair that has my controller on it (the controller is on a separate metal arm so the back is actually on the armrest, but the controller arm helps keep it from slipping off). It's not a method I would necessarily advocate using although it's something I picked up from a friend who also uses a powerchair. (I suspect it works best with bags your son wouldn't be ever use for aesthetic reasons, anyway )
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Old 01-29-2013, 11:18 PM   #7
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Some helpful hints.... from a mother who has expereinced it.

We recently came back from Disney in August 2012. Our son is 19 with CP. He does not sit, stand, bear weight, pivot~ but he does talk and is 100% cognitively aware and understands everything. That being said we had a wonderful time. He is fed by a tube only at night so that was not an issue. The main issue is that he is incontinent of urine and bowels. We used the First Aid Center to change him. Honestly we were glad that it was there and the staff was great in getting us what we needed but the rooms are very small and tight. It takes two people to lift him up and the beds were low and up against the wall. We moved some furniture and made it work. Downtown Disney did not have a First Aid Center like the parks. We were brought into some office to change him. There was no bed or bench ~ we had to change him on the floor. That was very hard to get him back up..106 pounds from the floor even two man lift was tough. We are 55 years old and doing that was difficult but we did. It is not fair for him to stay in a mess.

We kept his belongings in a large backpack and left it on his chair. We had a lot to carry also and no one wanted to carry it so we hung it on the handle bars of the chair. That worked out fine!!

As far as rides, you are lucky that your son bears weight and pivots. Since our son can not do that he was denied the right to go on several rides in the Magic Kingdom. The last time we visited Disney he was smaller and was able to be picked up and put on rides. This time was not possible. By the end of our day at Magic Kingdom we felt that the "most magical place on earth" was not really magical for our son and and instead of magic we were constantly remind of his disability. Come on this is Disney!!! No one should be reminded of your disability!! These are the rides he missed out on because he can not transfer into a ride vehicle: The Haunted Mansion, Peter Pan's Flight, Cinderella's Golden Carousel, Dumbo the Flying Elephant, Snow White's Scary Adventure, Mad Tea Party, Astro Orbiter and Pirates of the Caribbean. However that being said, The BuzzLight Year ride in Magic Kingdom was awesome and totally accessible. They had one ride vehicle that opens up to let the wheelchair in. It is alot of work for the staff but they do it with a smile. They saw my son enjoying this ride so much that they said it is much easier to keep him on then to take him off and put him on again. They let him stay on twice.

We stayed at the All Star Music. The room was adequate. We did not have an accessible room because since he does not use the bathroom or shower (using the shower would mean needing a Hoyer lift and adapted shower chair...just washed him in bed.) so we left the accessible room to someone who really needed it. We found the room a little tight but we moved the table and chairs and made room to accommodated for his needs.

I can not say enough about the bus staff and how they did everything for us.We did not have to get down and tie down the wheelchair and secure him in. They did it all....it was a nice break for us. He loves the bus, so riding from park to hotel was pleasurable for him.

I hope your trip goes well... I am interested to hear what your experience was.
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Old 01-30-2013, 12:16 AM   #8
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Mrs. I mightn't be rather direct but with an adult essentially fully unable to assist in theorie transfers, I dont think Disney is being more restrictive than ought to be. While guest enjoyment is very important, there are more things they need to take info account. Even only the subject of safety is a huge thing.

Try seeing the other side of the coin; the luxery that was there for hun as a kid to do manual more rides than average with such limitations and being blessed with parents physically able to do so.

You know, all the rides you mention are non options for me, list does not end there. Manual never done. But never for one second does that for me equal confrontation with my physical limitations. Yet all of those rides that I can do, shows, festivals, experiences, they give a huge feeling of almost literally being physically more able than in so called normale life. It still always amazes me how much is an option given the physical limitations I happen to have.

Im sorry you feel this trip was such a struggle. Truely. But am wondering how much of that was based on childmade memories that could be made ppssible because of small size and weight and expecting based on that not being aware that is a whole other thing then when talking about a fullsized adult. Treasure those times and memories, but sorta start with a clean slate now that the factor size and weight has changed the game. Wouldnt surprise me if a lot of sting would be removed by knowing the "new" options before getting intocht a familiar situation but now with him in adulthood.
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Does it really work that way? Doors closing, windows opening, can you really allways count on that? I'll just continue to wish, hope and pray to make sure. Knock on wood, one, twice and trice. Still can't believe it, I really get to visit Mickey again..........


Always keep wishing, dreaming and hoping.



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