Able-bodied, just not able-hearted

[wunkmom]

Hello! We are in the process of planning a trip for Dec 2016. What's different about this trip over our previous trips is that my son (age 16) was recently diagnosed with a genetic heart condition called ARVD. He was diagnosed with ARVD and implanted with an ICD (pacemaker with defibrillator capabilities) last October after a terrifying trip to the ER that ended up being a 7 day cardiac intensive care stay followed by the ICD surgery. Due to his condition, he now takes daily medication to control his heart rate and rhythm, and cannot purposely raise his heart rate through exercise or exertion of any kind. As he is currently, a trip to the grocery store with normal walking will render him breathless and wipe him out for the rest of the day. So we realize that we will have to tour differently. He will need either a wheelchair or an ECV for the duration of the trip. He was originally upset about this, but now realizes this is the only way he will be able to tour at all. So I have a few questions (thank you if you've read this far, I know that was quite a build up)....
1. wheelchair or ECV? Let me preface this by saying he is not a small guy, he's 6'3" and 225lbs, and wheeling himself would put to much effort on his heart, so either his dad or I would be pushing him around.
2. if we go with ECV, are there any companies that would rent to a kid who will be about 4 months short of being 18 years old?
3. if we can't find someone who will rent to him, would it be a horrible thing if I rent the ECV "for myself" and him be the operator? An aside to this, he is extremely cautious, non-impulsive, and responsible.
4. he has told me numerous times that he doesn't want any sort of special line privileges, other than if he uses a fast pass. standing for long periods of time doesn't affect his heart at all. can a wheelchair or ECV be parked much like a stroller so we can just go through the lines regularly when loading for an attraction?
5. am i going to get irritated when i see people giving my perfectly healthy looking son dirty looks for being in a wheelchair or ECV?
Many thanks to all of the kind folks who have spent the time to read this and respond. I appreciate each and every one of you!

 

[ember303]

Hello! We are in the process of planning a trip for Dec 2016. What's different about this trip over our previous trips is that my son (age 16) was recently diagnosed with a genetic heart condition called ARVD. He was diagnosed with ARVD and implanted with an ICD (pacemaker with defibrillator capabilities) last October after a terrifying trip to the ER that ended up being a 7 day cardiac intensive care stay followed by the ICD surgery. Due to his condition, he now takes daily medication to control his heart rate and rhythm, and cannot purposely raise his heart rate through exercise or exertion of any kind. As he is currently, a trip to the grocery store with normal walking will render him breathless and wipe him out for the rest of the day. So we realize that we will have to tour differently. He will need either a wheelchair or an ECV for the duration of the trip. He was originally upset about this, but now realizes this is the only way he will be able to tour at all. So I have a few questions (thank you if you've read this far, I know that was quite a build up)....
1. wheelchair or ECV? Let me preface this by saying he is not a small guy, he's 6'3" and 225lbs, and wheeling himself would put to much effort on his heart, so either his dad or I would be pushing him around.
2. if we go with ECV, are there any companies that would rent to a kid who will be about 4 months short of being 18 years old?
3. if we can't find someone who will rent to him, would it be a horrible thing if I rent the ECV "for myself" and him be the operator? An aside to this, he is extremely cautious, non-impulsive, and responsible.
4. he has told me numerous times that he doesn't want any sort of special line privileges, other than if he uses a fast pass. standing for long periods of time doesn't affect his heart at all. can a wheelchair or ECV be parked much like a stroller so we can just go through the lines regularly when loading for an attraction?
5. am i going to get irritated when i see people giving my perfectly healthy looking son dirty looks for being in a wheelchair or ECV?
Many thanks to all of the kind folks who have spent the time to read this and respond. I appreciate each and every one of you!

If someone does give dirty looks who cares!!!!! See my picture??? My son looks great! However his insides are a totally different story! So I dont care if someone says anything. I personally would do whatever to enable him to have a good trip. However are there other places that will rent to someone. I would just be worried on the off chance something happened....

 

[SueM in MN]

You can try this company. I know they have rented for use by older teens.

• RANDY'S Mobility
  According to information from Randy, they have a London, England phone # that connects directly to their US. Office.
  US. & CAN. (321-281-6603)
  UK. (02030062368)
  http://www.randysmobility.com/
  Randy's has been a long time favorite of DIS posters.
  Randys rents ECVs, manual wheelchairs. Randy's will sometimes rent ECVs to older teens on a case by case basis.

As far as I know, all the other companies have in their rental agreements that it is bring rented by someone over the age of 18 and that the operator is over the age of 18. Do people rent one and let their children drive? Yes, but I would not recommend it. If anything happens, you signed an ageement and so, I think the liability would be on you. Even if you had insurance that would normally cover if you were the driver, it probably would not if your child was driving.

 

[SueM in MN]

Follow the link in my signature to the disABILITIES FAQs thread or look for it toward the top of the board. One of the posts lists attractions with warnings that you will want to be aware of. There is also a list of attractions with moving walkways and stairs.

You certainly can chose to park the ECV and walk in line. check with the CM at the entrance so you know where to park.

 

[gap2368]

Hello! We are in the process of planning a trip for Dec 2016. What's different about this trip over our previous trips is that my son (age 16) was recently diagnosed with a genetic heart condition called ARVD. He was diagnosed with ARVD and implanted with an ICD (pacemaker with defibrillator capabilities) last October after a terrifying trip to the ER that ended up being a 7 day cardiac intensive care stay followed by the ICD surgery. Due to his condition, he now takes daily medication to control his heart rate and rhythm, and cannot purposely raise his heart rate through exercise or exertion of any kind. As he is currently, a trip to the grocery store with normal walking will render him breathless and wipe him out for the rest of the day. So we realize that we will have to tour differently. He will need either a wheelchair or an ECV for the duration of the trip. He was originally upset about this, but now realizes this is the only way he will be able to tour at all. So I have a few questions (thank you if you've read this far, I know that was quite a build up)....
1. wheelchair or ECV? Let me preface this by saying he is not a small guy, he's 6'3" and 225lbs, and wheeling himself would put to much effort on his heart, so either his dad or I would be pushing him around.
2. if we go with ECV, are there any companies that would rent to a kid who will be about 4 months short of being 18 years old?
3. if we can't find someone who will rent to him, would it be a horrible thing if I rent the ECV "for myself" and him be the operator? An aside to this, he is extremely cautious, non-impulsive, and responsible.
4. he has told me numerous times that he doesn't want any sort of special line privileges, other than if he uses a fast pass. standing for long periods of time doesn't affect his heart at all. can a wheelchair or ECV be parked much like a stroller so we can just go through the lines regularly when loading for an attraction?
5. am i going to get irritated when i see people giving my perfectly healthy looking son dirty looks for being in a wheelchair or ECV?
Many thanks to all of the kind folks who have spent the time to read this and respond. I appreciate each and every one of you!

1 I would get an ECV you will get very tired pushing him around and that would give him freedom to go where he wanted
2 I am not sure but I am sure you can find someone who would rent to him if you explained why he needs it you have over a year.
3 I do not think this is allowed but you are his mom
4 with most rides main stream ( wheel chair can go though) disney would not give him any extra accommodation he will wait in lines just like other guest with a few rides that are not like space mountain where he will get a paper with a time to come back, I would take the ECV or wheel chair in line so lines are very long just to get to sorin is a half mile. if he need to walk I would say do it walking bettew attraction at meals to get things things like that where if he need to site he can

as fair as what people think I go to disney a lot I can not tell you how many times I have seen younger men renting ECV and joy ridging around going as fast as they can turning very quickly weaving in and out of people things like that and no one around them cared at all no second looks no watch were you are going nothing. if those young men can do this and not get a look then your son can use an ECV and not get a look most people really do not care abut other people while at disney they tend to do there own thing but if someone dose give your son a remark just say something like I know I look fine but my hart is not I am sure your son can come up with something a little snappy to say.

enjoy your vacation

 

[kamik86]

If your son has never driven an ECV I would suggest going to a store like target or walmart at a time where they aren't busy (10 AM during the middle of the week) and using one. that way he can practice using it on stationary objects before having' to be able to control it around people that will step in front of him or stop suddenly just in front of him etc.

One thing to think about if you do park the ECV though. Can he manage stairs? Alot of lines have stairs. If he is using the ECF obviously he would be directed around them.

 

[happymommy]

I would opt for a wheelchair, but that's what we're doing with my DD who is also 16. The less time on his feet the better it sounds. Even parking and getting in a line can involve quite a bit of walking, so either way I'd have him sitting in the line as well if possible.
My DD never got any dirty stares in a wheelchair last trip, but if she did I wouldn't even care. What business is it of anyone else?

 

[anonymousegirl]

I would definitely recommend taking the ECV into the lines. If your son wants to stretch his legs, do it at lunch or in a shop, in a place that isn't a half mile from the wheelchair if he gets suddenly winded. Also, if you rented the ECV and let him drive it, you would be in violation of the contract and if anything happened (to your son, or a pedestrian), you would be on the hook for a huge liability issue.
Whatever you decide, good luck! At least December won't be too hot!

 

[Goofy14sure]

I vote for the ECV! He definitely shouldn't wheel himself. And for me, I'd rather ride my scooter than get pushed any day, If someone pushes me I constantly feel bad about making them work for me to have fun,

 

[Mrsjvb]

1. wheelchair or ECV? Let me preface this by saying he is not a small guy, he's 6'3" and 225lbs, and wheeling himself would put to much effort on his heart, so either his dad or I would be pushing him around. Wheelchair since an ECV is not an option
2. if we go with ECV, are there any companies that would rent to a kid who will be about 4 months short of being 18 years old? only if he can prove he uses one daily at home
3. if we can't find someone who will rent to him, would it be a horrible thing if I rent the ECV "for myself" and him be the operator? An aside to this, he is extremely cautious, non-impulsive, and responsible. horrible and illegal and against so many insurance requirements.
4. he has told me numerous times that he doesn't want any sort of special line privileges, other than if he uses a fast pass. standing for long periods of time doesn't affect his heart at all. can a wheelchair or ECV be parked much like a stroller so we can just go through the lines regularly when loading for an attraction? he wouldn't qualify for a DAS anyway. by all means park it if you think he'll be okay in a line
5. am i going to get irritated when i see people giving my perfectly healthy looking son dirty looks for being in a wheelchair or ECV? I dunno, are you? I look perfectly healthy too, until you see me trying to get up out of my chair,

his being responsible is not the issue insurance regulations do not allow for it and neither does Disney policy. so it is a wheelchair unless he owns/uses an ECV regularly at home.

 

[seashoreCM]

How easily can you get DS a power wheelchair or scooter to use at home between now and your trip? This will be used to prove that he uses one regularly "for a long time" before your Disney trip. Also gives him plenty of practice for him to use one safely at Disney.

Hmmmm ... See if you can find (do they make) a power wheelchair with the control at the rear. So you will nominally be pushing him in the wheelchair but there would be power assistance.

 

[wunkmom]

If someone does give dirty looks who cares!!!!! See my picture??? My son looks great! However his insides are a totally different story! So I dont care if someone says anything. I personally would do whatever to enable him to have a good trip. However are there other places that will rent to someone. I would just be worried on the off chance something happened....

My son is a Jackson too! Mine has been pretty resilient thus far, he usually lets things just roll off his back. Aren't kids awesome?

If your son has never driven an ECV I would suggest going to a store like target or walmart at a time where they aren't busy (10 AM during the middle of the week) and using one. that way he can practice using it on stationary objects before having' to be able to control it around people that will step in front of him or stop suddenly just in front of him etc.

One thing to think about if you do park the ECV though. Can he manage stairs? Alot of lines have stairs. If he is using the ECF obviously he would be directed around them.

Thanks for the tip about Target, that's a great idea! I did not, however, think about there being so many steps. Very good point

I would definitely recommend taking the ECV into the lines. If your son wants to stretch his legs, do it at lunch or in a shop, in a place that isn't a half mile from the wheelchair if he gets suddenly winded. Also, if you rented the ECV and let him drive it, you would be in violation of the contract and if anything happened (to your son, or a pedestrian), you would be on the hook for a huge liability issue.
Whatever you decide, good luck! At least December won't be too hot!

You are confirming what I already know in my heart, that I don't have the guts or the inclination to lie about his age just to get him an ECV. I have heard of a couple of companies that will rent to an older teen, and I will have to look into that a little more.

Thanks everyone for your input. Please realize that it is not "in me" to lie about his age or anything else in order to rent an ECV for his use. Part of me says do whatever necessary, but there's no way I could lie about it, or breach a contract. If I cannot find a company that will rent to him, then a wheelchair it is for sure. Pushing him around just burns more calories and allows me to have extra treats, right? I did however, forget just how many stairs there are in some queues, or even just how long some of the queues are. I guess because it had never affected our touring in the past. I'll be racking my brain to remember queues now and comparing them to what I know he can handle.

 

[wunkmom]

Just got some great news!! I contacted Walker Mobility to inquire, and was advised that their minimum age is 16. Hooray! One less worry!

 

[minnie mum]

That's great news for sure!!! Now get that young man down to Walmart so he can practice, practice, practice!

 

[Bete]

Store scooters are actually harder to use then the rental scooter your son will be using. It will seem easy to ride a rental scooter after practicing on a store scooter.
You might want to consider going to a local zoo for a day and use one of their rental scooters to get in some really good practice before the trip.

I would opt for a heavy model scooter because of your son's weight and height. This will cost a little more. You son will be more comfortable on a larger model, as well. A popular one is a Pride Victory model or the equivalent. The heavier model has two batteries and should last the day in the park. With his weight and height I don't think the lightweight model will last.

There is some scooter savvy you need to learn. First, remember to charge the scooter battery ever night. Second, when watching shows, parades or fireworks shut the scooter off and conserve the battery. If it rains you should cover the tiller; some use a shower cap for this purpose. We like to get out of the rain and get somewhere dry and wait it out with a scooter. There are inside attractions you can visit when it rains. Keep an eye on the battery power gauge to make sure you are not running low on juice. You should be okay with the bigger model, but be safe rather than sorry.

There are some tough situations with being a scooter driver. One is getting on and off the buses if you are using Disney transportation. The ferries and monorails are easier. You have to fit the scooter in a certain place on the bus. It's really important that your your son be aware of his surroundings. Many people, children and adults, will dart out right in front of a scooter. It helps if your family surrounds the scooter left, right, front and back and protects it to a degree while driving through the park.

 

[kamik86]

A few notes that could also help you:

If your son has trouble getting it on and off the buses or hates being stared at (more like glared at. People really glare badly if the driver is "taking to long" to load a scooter) if one of you is more comfortable with it (I know my dad can back up just about anything better then I can) he could transfer on the bus and let you park.

At the rides be sure to let attendants know he is able to transfer. We took my mom in a wheelchair once after her knee surgeries and most of the time they would ask but a few times they just assumed she couldn't We had to speak up as that would have affected wait times not only for us but for those that couldn't transfer (A CM told a lady behind us that the next boat on jungle cruise could take one wheel chair so they would load my mom and she would get the next one. However my mom could walk... just not all day, as it sounds like your son can as well, so we just had her get on so the other lady could ride too.)

 

[KPeveler]

I am glad you found an ECV to work for him.

As to what other people say - just remember this trip is about your family, not theirs. I have a custom manual wheelchair and I STILL get weird looks since I "look healthy." I just ignore them. I feel sorry for people who are so concerned about where my rump is parked that they forget to have fun on their own vacation!

Have a wonderful time!

 

[wunkmom]

That's great news for sure!!! Now get that young man down to Walmart so he can practice, practice, practice!

We will! He is homeschooled, and helps me with the shopping sometimes, so he'll get lots of practice!

Store scooters are actually harder to use then the rental scooter your son will be using. It will seem easy to ride a rental scooter after practicing on a store scooter.
You might want to consider going to a local zoo for a day and use one of their rental scooters to get in some really good practice before the trip.
What a great idea about the zoo!! That actually kills two birds, he'll get practice and we haven't even been to the zoo lately because I knew he couldn't walk that much. I'm still adjusting to everything, and forget that most places have scooters for him to borrow or rent. I'm working on being more cognizant of this!!


I would opt for a heavy model scooter because of your son's weight and height. This will cost a little more. You son will be more comfortable on a larger model, as well. A popular one is a Pride Victory model or the equivalent. The heavier model has two batteries and should last the day in the park. With his weight and height I don't think the lightweight model will last.

Thanks for that suggestion! He is not a small guy, heck, he looks 23 already! Will definitely rent a heavy duty scooter for him!

There is some scooter savvy you need to learn. First, remember to charge the scooter battery ever night. Second, when watching shows, parades or fireworks shut the scooter off and conserve the battery. If it rains you should cover the tiller; some use a shower cap for this purpose. We like to get out of the rain and get somewhere dry and wait it out with a scooter. There are inside attractions you can visit when it rains. Keep an eye on the battery power gauge to make sure you are not running low on juice. You should be okay with the bigger model, but be safe rather than sorry.

Good to know about the rain and covering the tiller, would never have thought of that.

There are some tough situations with being a scooter driver. One is getting on and off the buses if you are using Disney transportation. The ferries and monorails are easier. You have to fit the scooter in a certain place on the bus. It's really important that your your son be aware of his surroundings. Many people, children and adults, will dart out right in front of a scooter. It helps if your family surrounds the scooter left, right, front and back and protects it to a degree while driving through the park.

Great suggestions!! Thank you!!

A few notes that could also help you:

If your son has trouble getting it on and off the buses or hates being stared at (more like glared at. People really glare badly if the driver is "taking to long" to load a scooter) if one of you is more comfortable with it (I know my dad can back up just about anything better then I can) he could transfer on the bus and let you park.

At the rides be sure to let attendants know he is able to transfer. We took my mom in a wheelchair once after her knee surgeries and most of the time they would ask but a few times they just assumed she couldn't We had to speak up as that would have affected wait times not only for us but for those that couldn't transfer (A CM told a lady behind us that the next boat on jungle cruise could take one wheel chair so they would load my mom and she would get the next one. However my mom could walk... just not all day, as it sounds like your son can as well, so we just had her get on so the other lady could ride too.)

Will definitely remember this! He is certainly able to transfer, just the walking is a no go for him.

Can I just say how wonderful and helpful everyone is on this board? Our family has really been trying to adjust to our son's new reality, and not many people understand that he is truly disabled now. Heck, my dad forgets and has asked my son to help move furniture more than once since his diagnosis. I've reminded my son to politely refuse. My son looking hearty and hale really throws people off.

Our reality is that as my son's condition progresses (it almost always does, it will never improve, only get worse until a heart transplant is required) we may have to look into purchasing a scooter for everyday. He may have to obtain a handicapped placard for his car. He may have to go on disability at some point. We have have to modify our home or move to accommodate him. But for now, we are living every day as it comes and enjoying every second of the days he is given.

Thanks again everyone for your kind and honest input. It makes me feel so good to know that there are still good people in this world.

 

[KPeveler]

If you are renting a car, you should ask the doctor for a temporary disabled parking tag. ECVs cannot be taken on the trams, so you will either have to drop him and the ECV off (easy enough to do - my dad does it all the time even though I have a parking tag), or get a parking tag and park near the entrance.

 

[mamabunny]

es, it will never improve, only get worse until a heart transplant is required) we may have to look into purchasing a scooter for everyday. He may have to obtain a handicapped placard for his car. He may have to go on disability at some point. We have have to modify our home or move to accommodate him. But for now, we are living every day as it comes and enjoying every second of the days he is given.

Thanks again everyone for your kind and honest input. It makes me feel so good to know that there are still good people in this world.

The folks here really are super, aren't they?

I'm so glad you called Walker - we have had great experiences with them, and others here have too.

Just a suggestion - if he has to purchase a personal ECV, he may be interested in the model I have: Travelscoot.com I certainly don't recommend it for everyone, but it's VERY lightweight, and my (larger capacity) Li-on battery lasts me all day at WDW with some common sense precautions (like turning it off during shows, etc. and charging every night).

I have the Deluxe model, and without me, it weighs 35 pounds. Total. Completely put together. It also folds down into a bag about the size of a golf bag. I drive mine right down to the gate of the plane, pop out the battery (the battery flies in the passenger compartment by FAA regs) and gate check it. When I started rehab recently, I told my doctor that my very first goal was to be able to lift Angus (my scooter is named after Princess Merida's horse LOL) in and out of the back of my Kia Soul.

I can do that now! Yay!!!

And yes, it's sturdy. I'm a 3L (Lovely Large Lady) and Angus just cranks right along with me, no problems.

Just a suggestion - there are a couple of other super light personal ECV's out there. Since he isn't supposed to stress his heart (and being a teenager, he is going to want a bit of freedom, Mom!) you might want to consider one of the super-lightweights for him.

My wish for you is for a Magical trip - and as one Mom to another - for the best possible outcome for your son.