Visiting with EDS, need a push chair or wheel chair...

[klmorg]

I wondering of Orlando stroller rental asked baby jogger who makes it to email you to answer the question because they are the ones that make the model they use and that way they don't offer the drop off or pick up service.

They look like a site that makes them and sells them because they have links where buy the strollers hopes this helps they should of said we will have the company that makes it contact you.

http://www.babyjogger.com/

It looks like they make the city line of strollers and their special needs stroller division makes liberty push chairs and other ones to sorry the advance mobility is their specail needs division that makes push chairs and other types of special needs strollers.

Think I am just going to call them directly tomorrow. I'll be posting what I find out. Thanks

 

[disney david]

Think I am just going to call them directly tomorrow. I'll be posting what I find out. Thanks

Yeah just to make sure they should of emailed you back and said we contacted the company to email you to get you the best answer possibly hope it works out that what happened and they will bring it tote resort.

 

[klmorg]

Yeah just to make sure they should of emailed you back and said we contacted the company to email you to get you the best answer possibly hope it works out that what happened and they will bring it tote resort.

Thanks! I have until November so I am sure I can find a comfortable push chair somewhere for her. It just would be really nice to have them deliver it to our resort. Also, as someone above pointed out, Orlando Stroller Rental does clearly state that they still deliver to the resorts. They had a chair on their site that seemed to have measurements to accommodate my daughter with a 100 pound weight limit (My DD is only 72 pounds), but for some reason I was passed along to Baby Jogger.

I am confident I can shed more info on all of this tomorrow with a phone call or two!

 

[ibcrazie4dizney]

You said you don't have a push chair of your own to bring. don't know if this would work for you, but when dgd was out growing her stroller but still needed one, her neuro dr gave us a prescription for one and we were so lucky our insurance paid for it, they can be expensive. we don't use it a lot but we do day trips a lot or activites like zoo or fairs when we take it in case she needs it. I don't mind pushing it around and if she isn't riding at the moment, it is good to load our stuff into it rather than carry.

 

[SueM in MN]

Thanks! I have until November so I am sure I can find a comfortable push chair somewhere for her. It just would be really nice to have them deliver it to our resort. Also, as someone above pointed out, Orlando Stroller Rental does clearly state that they still deliver to the resorts. They had a chair on their site that seemed to have measurements to accommodate my daughter with a 100 pound weight limit (My DD is only 72 pounds), but for some reason I was passed along to Baby Jogger.

I am confident I can shed more info on all of this tomorrow with a phone call or two!

I know these things for sure:
Baby Jogger is the manufacturer of regular strollers and the special needs stroller.
At one point, they split off the the selling of those special needs strollers into another division - called Advance Mobility.
Some people who buy special needs strollers purchase them out of pocket, but some are able to get insurance to pay for the stroller. (In insurance contracts, that type of equipment is called "durable medical equipment".)
If a company makes products for the general and special needs populations, it is often easier to have a separate division to deal with the durable medical needs/insurance part of their business.

Orlando Stroller Rental buys Baby Jogger strollers, but as far as far as I know, that is the only connection between the 2 companies.

Here's what I think happened:
You asked some specific questions about measurements, which Orlando Stroller Rental felt could be better answered by the company that makes the particular stroller.
Orlando Stroller Rental sent your email on to Baby Jogger to get the answers.
At that point, there was some misunderstanding and Baby Jogger thought they got your email because you wanted to purchase a stroller.
That was why they answered to you directly and explained how to purchase, that they don't deliver, etc. (they don't deliver at all - if a purchaser needs delivery, they would purchase thru a durable medical equipment dealer in their area).

So, I think you will find that you can still rent one from Orlando Stroller Rental for delivery to your resort.

 

[SueM in MN]

I just read post #6 in the FAQ link. Thank you for sending me to it. My DD will need a chair but can walk on her own so it is likely that she may be walking up to the ride ques for some of our trip. I am thinking from what I read that it may be a good idea to have the GAC for those times when her chair will be left among the sea of strollers and she walks into the que on her own. Is this correct? Also, I read somewhere that it was a good idea to bring a note from her doctor to initially acquire the GAC so as to possibly avoid a lot of possibly unpleasant questions directed towards my DD, as she is only 8 years old. This is not her 1st trip to Disney World, but it is her first since her illness has been causing more issues with her day to day activities and I really want her to feel as 'normal' as possible while we are there.

Thanks again for all the advice and information.

There are websites and books that say guests must have a doctor's note, but that is not true. Some also say it is easier if you have a doctor's note, but that is really a personal decision - if you feel it would make it easier for you to have a letter, it's fine to bring one.
A letter can't be required -the ADA (Americans with Disabilities Act) states that people with disabilities can't be forced/required to prove their disability in order to get accommodation for needs related to the disability.
For that reason, most Cast Members (CMs) will refuse to even look at letters - they don't want an appearance that proof is required. My source on this is WDW Guest Relations CMs. That said, many people with invisible disabilities still feel better asking for a GAC with a letter in their hand.

Questions will be directed toward you as the parent, not your daughter. The questions will be general and will include things like what difficulties does she have that WDW might be able to assist with. So, not really unpleasant question - they just need to know what difficulties she has in order to accommodate them.
When you show the GAC to CMs at attractions, they may have some questions also, such as how far can she walk. The individually stamped message on the GAC is pretty general, so they may need to know more at the individual attraction.

 

[Piper]

I just read post #6 in the FAQ link. Thank you for sending me to it. My DD will need a chair but can walk on her own so it is likely that she may be walking up to the ride ques for some of our trip. I am thinking from what I read that it may be a good idea to have the GAC for those times when her chair will be left among the sea of strollers and she walks into the que on her own. Is this correct? Also, I read somewhere that it was a good idea to bring a note from her doctor to initially acquire the GAC so as to possibly avoid a lot of possibly unpleasant questions directed towards my DD, as she is only 8 years old. This is not her 1st trip to Disney World, but it is her first since her illness has been causing more issues with her day to day activities and I really want her to feel as 'normal' as possible while we are there.

Thanks again for all the advice and information.

Unfortunately, there is no place for her to sit in most ride ques. The GAC states right on it that it is not intended to shorten wait times, so the only thing it would help with is avoiding chairs. Disney's answer to fatigue and mobility difficulties is to use a WC or stroller. You will need to get the GAC to bring a stroller in line.

Also, a letter from the doctor isn't necessary. That is erroneous information (there is a lot of that out there!) Our FAQs have been checked and verified by people who work in GS and many people who are regular WDW attenders. I also have several invisible conditions and never use a doctor's note.

 

[goofieslonglostsis]

Sue already addressed the changes in policy for aids, so I'll not repeat that.

Please do NOT go down the route of "I'll just rent her a wheelchair at WDW". These are only adult sized chairs. Not just that, but rather big adult sized. And as rental aids tend to have to be in this situation very sturdy and easy to clean but that does result in very little comfort or support. For a child to be put in an adult chair it is very uncomfy. For a child with eds that already has joint pain? Asking for a sure bet to make things worse. She will have no support where she needs be and will be forced into positions that can increase pain, cause subluxations or full luxations. She will really need an aid that fits HER size. Any aid that is too big or too little will result in lack of support for her joints (and thus best situation to rest and not increase pain), increase of pain and depending on how her eds is and the specific aid can even cause bigger problems like luxations.

This can sound like a big pain in the butt, right? Not so much so, but it would require you to tackle it by getting her an aid at home and bringing it along. Start long enough before the trip so you can try out if the aid properly fits her body. If she finds it lets her rest or would still require work to sit in it. You can try out some cushions to see if that tackles some smaller problems. Not just that, but airports can be loooooooooooooong if you are flying. So at the airport you'ld rather have it there and not need it than vice versa. Simply gate check it, free of charge.

Lines; ALWAYS bring the aid with you in the line. Again; rather have it with you and not need it than vice versa. If she wants to, she can stand up there is no rules about must be sitting down at all times. A GAC is not there to shorten lines or deal with stamina like being able to stand for only 10 minutes. Mobility aids are the appointed help for that. Even if a wait seems short, take it! If a ride breaks down or takes longer wait than expected, that 10 minutes the line was mentioned to be can turn into 30 minutes or longer. Taking a mobility aid into line does not mean she is glued to it. Where she can and fitting, she can simply get up and get onto a ride when it is her turn. CM's working the ride will deal with her aid and have it waiting for her when you guys get off again. If transferring is too much or for instance a ride seat wouldn't be doable for her; on certain rides she can stay on those mobility aids that have offical tie down hooks. So it might be worth keeping that in mind when aid-looking.

Also keep her spirit in mind with that aid-searching. Strollers are well..... strollers. Enough 8 year olds aren't always that comfy with something "babyish". For them it can be a lot easier to accept using an aid that has a more obvious aid look like a pediatric wheelchair than a stroller. Obviously SHE is the most important, but the difference in look can also influence how others look at the situation. Not a biggie at WDW imho, but can make quite a difference in some other settings.

It might or might not be of help for this trip depending on scheduling, but have you considered getting her an OT evaluation? Given the situation it can be good odds that she'll need a mobility aid for longterm for longer distances. If so, it can be wise looking into coverage to get her an aid that is fully set up to HER needs instead of general use, focussed on HER abilities and problem points. In any situation a custom aid can make a huge difference compared to a general aid, but esp. in eds when certain stuff pop up. Might be very worth it in certain situations and if so an aid simply being there, available for use if need be, can make it much easier on her and you to use it when needed and reduce her overdoing it or (unconciously) not always doing stuff because it's too much for her mobility wise.

In general? I'm one of those with veds, happen to be on the worser end of the scale. Pacing is your keyword. She might likely not be a good teller of when is enough. Difficult enough as an adult, let alone as a child. Let alone in a place like WDW. So you might find yourself needing to help her a bit by that by getting rest moments before she is burnt up. She'll be able to do more when resting a bit sooner than she will be able to do on a day if she goes on until she's fully burn out. Recouping from that takes longer and is more difficult than recouping from a battery that is only half empty instead of having even run out of your emergency battery. It depends on personal problem points, but for many swimming can relax the muscles and thus joint pain also a lot. Many kids love swimming, so you might try to schedule some park, rest, swim, park for instance.

For quick rests; go down to first aid or baby care center in each park. She can use a bed there for a quick rest instead of needing to go back to the hotel. You can also use it for any other medical stuff that you might need to do.

The more you know her triggers the better! For instance if unexpected fast spinning motions result in a luxation of a shoulder, you can plan accordingly to that knowledge. For instance not do multiple rides that have that motion on the same day or if it is a very painfull/risky trigger for her; skip it all together. Same with seating. She'll be able to go longer/have less pain when sitting in a supported way instead of seating that results in her "working" to sit or for instance leave her dangling her legs etc. Something as simple as a pillow can make a seating much more helpfull for her during for instance a dinner. Or if having good comfy support in her mobility aid; staying in that for a show instead of sitting on that hard wooden bench without back support that hurts her or uses up too much of her energy to sit on it.

Lines; as said take the aid along. Also take along portable "entertainment" if you know that helps keep her relaxt instead of jumping all over the place in excitement of getting to ride her favorite ride. Jumping is fun, but will take energy she now can no longer use for some other disney stuff. Whereas some entertainment she likes can help her reload physically a bit and she'll be doing something she likes. For instance a favorite game, puzzle she can do with pen, etc. Or do line-bingo where you give her a list of for instance 10 items/colours/caracters you know will be seen and she has to look out for.

If she has difficulty relaxing during sitting even when properly supported (which will result in too high muscle tension, which will cause more pain etc.); it can help to look into known aids for those with sensory integration issues. For instance a weighed down blanket on a lap during sitting can help someone with eds to relax their muscles to more "normal" muscle tension (and thus less pain!!) because now the needed support for joints comes a bit from that weighed down blankie. Can be a search to get the weight just right (too light and too heavy will cause problems, and the difference can be as little as an ounce), but it is so worth it! Not just a nice help to relax in the room or while she sits down in the aid but in daily life also. When buying these aids, they are very expensive many times. Many can be made yourself, and weighed down blankets are very easy to do. Much cheaper and she can pick out a fabric she loves. To see if it is of help for her; many times one can try out aids for a period of time through an OT, PT or by asking the manufacturer/dealer.

And best of all? For those of us where outside pressure helps to ease tension and pain, that same result is seen in a just right places and right of "force" big hug! What better way of reducing pain? Obviously need to watch out a bit for a wrong placed hug that can sublux a joint but you'll both soon learn what works best for her. And she'll have the best ever reason for hugging her favorite Princess or other caracter that bit longer.




And totally not important, but might be a nugget that might be of help in the future; 2 types of eds in one individual does not happen. Or let me rephrase that; never say never, but it would result in eventual medical publications and being the first worldwide. Often it does happen that folks get a bit misdiagnosed, due to so much lack of knowledge about eds. Many, if not most, of us with eds will have an overlap of symptoms. Many in the medical field look at those symptoms and then go; thus it must be each type they have symptoms of. Genetic studies have shown no such thing, but actually having one type with an overlap of some symptoms that can also be seen in other types. Misdiagnosing of those with heds to be labeled as also having veds is a common one in that, as in vice versa someone with veds to be mistakenly labeled with also heds. Not all that hugely important for now, but it can be a nugget in fishing out the more knowledgable docs versus trying very hard but not that much into it. Also will become important later on in case of any wishes of becoming a mom she might have and might be important for your family given the hereditary info.

Given her veds; did you know about the research done on cardiovascular complications in veds and how one specific medication can decrease the risk significantly? Obviously not something with a child one would ever go "oh just pop a pill", but if she were already on certain meds it can be worthwhile looking into if it might be an option in her treatment. Quite a few people who were already on certain medications for cardiac symptoms could easily switch from their current med to this studied med without real risks or other group of possible side-effects, but does come with that benefit of decreasing the cardiovascular complications of veds. It's still pretty "new" and very little known with many cardiologists, so reckoned I'ld just mention it it case you don't know yet and want to know in case you ever need to consider certain meds. If you want to know more, feel free to PM and I'll give you the name and link of the study.

 

[SueM in MN]

I just read post #6 in the FAQ link. Thank you for sending me to it. My DD will need a chair but can walk on her own so it is likely that she may be walking up to the ride ques for some of our trip. I am thinking from what I read that it may be a good idea to have the GAC for those times when her chair will be left among the sea of strollers and she walks into the que on her own. Is this correct? Also, I read somewhere that it was a good idea to bring a note from her doctor to initially acquire the GAC so as to possibly avoid a lot of possibly unpleasant questions directed towards my DD, as she is only 8 years old. This is not her 1st trip to Disney World, but it is her first since her illness has been causing more issues with her day to day activities and I really want her to feel as 'normal' as possible while we are there.

Thanks again for all the advice and information.

If she will be bringing the stroller into lines, you will need a "stroller as wheelchair" sticker and a GAC to let the CMs in the attraction know that this stroller should be treated like a wheelchair and allowed into lines and attractions.

This used to not be needed for the larger special needs strollers because they are noticeably larger than regular strollers. Those strollers also used to be fairly uncommon, but in the past few years, people have been renting them for their non-disabled 7 to 11 yr olds. So, it's best for someone who actually needs one to actually get a sticker and GAC to avoid questions.

You can certainly park the wheelchair with the other strollers outside attractions. Depending on when you are going in November, you may find the waits for many attractions are short or manageable for her and she may want to walk in lines. I would be very careful and bring the stroller into lines if you can't see the entire line - like Magic Carpets of Aladdin and Small World, you can see the whole line. Pirates of the Caribbean, you can't - and even if the wait is short, you don't know snaking around the line is doing inside.
Even if crowds are low, it will still be helpful to use a tour planning site like www.easywdw.com or www.touringplans.com
Those can help you to know which park and which attractions are expected to be least busy. We don't know when the planned Fastpass Plus changes to Fastpass system will occur, but that will be something to watch so you can see how to use it to your best advantage.

GACs don't usually shorten the distance walked, so that is something to be aware of. That can especially be an issue for situations where you can't see the whole line. Some are very long distance - like Soarin' is over 1/4 mile from the entrance to the queue to boarding and another 1/4 mile to get back out from the ride to the attraction entrance again.

Also, on page 2 of the disABILITIES FAQs thread, there is a list of attractions where all guests must stand for a while. You will want to be aware of those - if she is having a bad day, you may want to bring the stroller in for some of those.
Even if she's having a good day, you might want to avoid doing a bunch of those right after each other.

 

[klmorg]

You said you don't have a push chair of your own to bring. don't know if this would work for you, but when dgd was out growing her stroller but still needed one, her neuro dr gave us a prescription for one and we were so lucky our insurance paid for it, they can be expensive. we don't use it a lot but we do day trips a lot or activites like zoo or fairs when we take it in case she needs it. I don't mind pushing it around and if she isn't riding at the moment, it is good to load our stuff into it rather than carry.

She see's her doctor on Tuesday, I will check into this. A good suggestions especially since we have a while before our trip! Thanks!

 

[klmorg]

I know these things for sure:
Baby Jogger is the manufacturer of regular strollers and the special needs stroller.
At one point, they split off the the selling of those special needs strollers into another division - called Advance Mobility.
Some people who buy special needs strollers purchase them out of pocket, but some are able to get insurance to pay for the stroller. (In insurance contracts, that type of equipment is called "durable medical equipment".)
If a company makes products for the general and special needs populations, it is often easier to have a separate division to deal with the durable medical needs/insurance part of their business.

Orlando Stroller Rental buys Baby Jogger strollers, but as far as far as I know, that is the only connection between the 2 companies.

Here's what I think happened:
You asked some specific questions about measurements, which Orlando Stroller Rental felt could be better answered by the company that makes the particular stroller.
Orlando Stroller Rental sent your email on to Baby Jogger to get the answers.
At that point, there was some misunderstanding and Baby Jogger thought they got your email because you wanted to purchase a stroller.
That was why they answered to you directly and explained how to purchase, that they don't deliver, etc. (they don't deliver at all - if a purchaser needs delivery, they would purchase thru a durable medical equipment dealer in their area).

So, I think you will find that you can still rent one from Orlando Stroller Rental for delivery to your resort.

Thanks Sue. I will post what I find out but I think you are right that I dealt with Baby Jogger and not Orlando Stroller Rental.

 

[klmorg]

Just got off the telephone with Orlando Stroller Rentals. After much confusion as to why my email request was forwarded to Baby Jogger, Shannon, from Orlando Stroller Rentals, assures me that OSR does in fact still deliver to WDW resorts! SO I have pretty much decided on the Liberty Pushchair, (unless I can purchase our own chair before then through our insurance). Now my next decision.... to purchase the insurance for the push chair or not??? Shannon reassured me that not many people do purchase it when the chairs are rented exclusively for Disney, but that a one time $25 payment will cover us for theft, loss or damage done to the chair for the entire 8 days we have it. Any thoughts??

 

[disney david]

Just got off the telephone with Orlando Stroller Rentals. After much confusion as to why my email request was forwarded to Baby Jogger, Shannon, from Orlando Stroller Rentals, assures me that OSR does in fact still deliver to WDW resorts! SO I have pretty much decided on the Liberty Pushchair, (unless I can purchase our own chair before then through our insurance). Now my next decision.... to purchase the insurance for the push chair or not??? Shannon reassured me that not many people do purchase it when the chairs are rented exclusively for Disney, but that a one time $25 payment will cover us for theft, loss or damage done to the chair for the entire 8 days we have it. Any thoughts??

That great it worked out may be they will learn so send an email saying they forward your question to the manufacturer. So their wont be any confusion and to save you a phone call.

 

[G719]

Oh good! I am glad you let us know about that. I am paying for the insurance when we rent. $25 is cheap for piece of mind for me and my OCD husband. I know he would worry the whole time about a rented stroller otherwise.

 

[SueM in MN]

Oh good! I am glad you let us know about that. I am paying for the insurance when we rent. $25 is cheap for piece of mind for me and my OCD husband. I know he would worry the whole time about a rented stroller otherwise.

Considering the cost of those strollers, I would probably do it also for peace of mind.

 

[klmorg]

Oh good! I am glad you let us know about that. I am paying for the insurance when we rent. $25 is cheap for piece of mind for me and my OCD husband. I know he would worry the whole time about a rented stroller otherwise.

I'm convinced Gonna get the insurance

 

[KPeveler]

I am not certain if someone has suggested it or not but you can get a GAC that allows you to use any stroller as a wheelchair, so she would not have to stand in lines. She could sit whenever she needed. I have EDS and a GAC for other problems and a wheelchair for my EDS hypermobility.

Look for companies that have "Special Needs Strollers." There is no where to sit for things that a GAC would not help with like parades, character lines, bus lines, anything at a resort.

I am not sure which companies deliver anymore that have these but a special needs stroller may be something you want to look into for home use too, if not a more traditional wheelchair. I would worry about her overdoing it in a manual wheelchair.

If you have a stroller at home, bring it with you. Orlando airport is huge and requires waiting fot shuttles which then you have to stand on. If you have a stroller she likes and will use, I would just bring it.

 

[goofieslonglostsis]

I'm convinced Gonna get the insurance

First invest a bit of time in checking insurances you've already got in general. Insurances can sometimes be ultimate garbage products, aimed to hit you in emotions and make a sell just like those candy items at the store are always located at locations where they know we are most likely to do impuls buys.

It could be that you already have full or partial insurance for this subject in some other continues insurances you've already got. Main subject would be damage that is expensive. Theft is very unlikely when you are taking it with you into the line anyway and it gets stored right there on the loading/unloading platform and CM's are around. Even more so if you personalize it so it is easy to see which aid is your DD's so it prevents some CM accidently giving it to the family in front of you because they use a same model rental aid.

I won't compare to my nation given as we are the most insured (and most overinsured) nation worlwide, but I know of certain situations within the US where folks found out they already had some coverage without realising it.

It's only $25,- but if you do happen to already have some coverage, that $25,- is a big amount for an 8-year old to be allowed to buy herself a souvenir. It could be a ride picture that you just love, a QS lunch for a family of 3, or whatever. Checking your current insurance takes a bit of time, but will make you sure of what you have and haven't got insured for this trip. Not just the rental aid, but also some other stuff that could pop up during a trip.


Given the distance of your home and the parks, you'll probably have your car with you? Are you planning to drive to the parks or planning on using Disney transportation if staying at one of the resorts? If using Disney transportation, or better put; the busses one more subject to think about if it would suit DD best to be able to stay in her chair on the bus or can she always make that transfer into a bus seat. And is that seat fine for her or a possible painfull seat. Most difficult moment would be after having done the parks, tired and with more pain. If she can still use general seats without any problem; peachy!!

If any doubt/problem with that; it can pay off to see if it is doable and makes financial sense to get a chair with tie down system on it. That way she could stay in her chair if it is less painfull or eliminating transferring out and back in the chair for the bus ride can help her. Staying put is only an option if the aid has tie down hooks.

 

[SueM in MN]

Your homeowners insurance may pay for loss, theft or damage, but most people have a fairly high deductable and might not come out getting all the costs paid for by their insurance if anything happens. (Plus, depending on the insurance and the person's claim records, their insurance premium might go up.)
So, I agree people would want to check on their own insurance and what coverage they already have.

That's why I say if $25 will buy you peace of mind, go for it. If its going to be a big part of your budget, only you can decide if its worth it.

If you are interested in getting a hair of her own, this company has a very good website with a lot of information.
http://www.adaptivemall.com/allstrolpus.html?campaign=strollerbutton

You may choose (or be forced by insurance) to buy somewhere else, but that site shows a good selection of what is out there.

 

[klmorg]

Thanks goofieslonglostsis and Sue We are staying at POR and will likely be using the buses so the choice to stay in her chair or ride in the bus seat will be 'mostly' hers. I agree with goofieslonglostsis, in that at the end of a day in the parks she would likely opt to stay in her chair. We have a package that includes a dining plan and some extra reservations for character dining too, and a budget for souvenirs set already so the $25 won't be a burden, but I will check with our homeowners policy just in case it would possibly cover anything while we are there with the chair. All in all the insurance would give me a little extra piece of mind, a good thing for a mere $25.00

Thanks again folks

PS.. goofieslonglostsis, I sent you a PM