Torn on what to do

[pls5286]

I am seeking advice on what to do. My parents are treating me and my children to a Disney vacation during my kids fall break. I have a dilema and want some advice please. I have a chronic medical condition that has caused me to not be able to walk great distances and causes lots of fatigue etc. My kids are used to my health issues as they live with me every day and when we go on vacation together, they are used to having to take frequent breaks or either we do a slow pace and watch the shows as needed for me. BTW, my kids ages are...DS12, DD 6. If I am having an exceptionally bad day, I will rent a ECV, I have also had 4 strokes caused my malfunctions of a shunt I have in my head. On a previous vacation I have went on with my parents, we did a small theme park in Myrtle Beach, and I was constantly harrased by just how out of shape I was, etc, and was ridiculed about renting an ECV at Kennedy Space Ctr with just me ank my kids. I know if I go to WDW with them they will refuse to allow me to rent one if I need it and will walk at a break neck pace. Do I just skip out on my kids first visit to WDW? and my first visit back in over 20 yrs?

 

[KPeveler]

I am seeking advice on what to do. My parents are treating me and my children to a Disney vacation during my kids fall break. I have a dilema and want some advice please. I have a chronic medical condition that has caused me to not be able to walk great distances and causes lots of fatigue etc. My kids are used to my health issues as they live with me every day and when we go on vacation together, they are used to having to take frequent breaks or either we do a slow pace and watch the shows as needed for me. BTW, my kids ages are...DS12, DD 6. If I am having an exceptionally bad day, I will rent a ECV, I have also had 4 strokes caused my malfunctions of a shunt I have in my head. On a previous vacation I have went on with my parents, we did a small theme park in Myrtle Beach, and I was constantly harrased by just how out of shape I was, etc, and was ridiculed about renting an ECV at Kennedy Space Ctr with just me ank my kids. I know if I go to WDW with them they will refuse to allow me to rent one if I need it and will walk at a break neck pace. Do I just skip out on my kids first visit to WDW? and my first visit back in over 20 yrs?

Rent an ECV for length of stay from offsite, and tell your kids they can either go with you in the ECV or stay at home with relatives (sorry, don't mean to be rude). If you have had strokes, it is not just a matter of comfort, but of safety. What happens if you push yourself and overdo it and end up in the hospital?

If you use an ECV you will not be alone at Disney, there are lots of people who use them now. Disney is set up well for them and you will be able to do everything pretty much as usual (i.e. going to restaurants and waiting the normal lines). In general I have not heard of lots of other guests harrassing those in ECVs, although there are rude people everywhere...

don't stay home cause you are afraid of using an ECV, and DEFINITELY don't stay home if you are afraid of embarrassing your kids. When I was a teenager (as your 12 yr old is approaching) i was embarrassed by my mother CONSTANTLY, and she had NO health problems.

In short, kids will be embarrassed by their parents no matter what, so do what you need to do and have a good time!

 

[GRUMPY PIRATE]

Rent the ECV. And the mod is going to tell you to read the FAQ's!

It sounds like you are the reason they HAVE ECV's....to assist you!

I would go and have a good time. The ECV's are pretty much everywhere. A friend of mine rented one for a temporary issue that kept him from being able to walk a great distance, and he came back and said he had a great time, and was glad he didn't cancel. (his family was glad too!)

I think that If I were you, I would plan on renting an ECV for your whole stay there. and possibly rent one before you go, to get used to the controls?

you will be in large crowds.

and Look into getting the GAC so that you can enjoy everything with your family.

 

[Cheryl592000]

Rent an ECV from off-site. I am. We are going as a family of 8 - 6 adults and 2 kids 4 & 6. My sister says she doesn't like the idea that I will be renting an ECV. She doesn't understand. She is more of the "what are people going to think?!" crowd. She doesn't want to walk near me. Sounds really mean but, whatever. She does not realize I just can't walk around the park without pain. I have 2 herniated discs in my back, knee surgery, siatica etc., etc. You will have a wonderful time...especially when you are not in pain.
And when my parents will have an ECV also, she will be out of her head...oh well.

 

[SueM in MN]

Rent the ECV. And the mod is going to tell you to read the FAQ's!

Here I am, on cue!

If you look in post #2 of the disABILITIES FAQs thread, there is a lot of information about renting ECVs. Some of the information is where to rent, but there are also some links to helpful information - like deciding to use one and a trip report from someone who decided he finally needed to rent on.

In post #3 of that thread, there are some links to other information that might be helpful - including links to the Guidebook for Guests with Disabilities for each park.

Post #6 of that thread is about Guest Assistance Cards (GAC). Be aware though that the needs you are talking about are 'endurance concerns'. An ECV would help you a lot more than a GAC since there is a lot more walking involved in getting from place to place than there is in lines. A GAC also would not shorten the distance walked in line in most cases.

 

[TheZue]

Maybe I misread that, but it sounded like it was the OP's parents who were making fun of her and not letting her rent the ECV. I really hope I'm wrong on that because that would be awful for her If I'm right personally I wouldn't expose your kids to people who think it's okay to mock your problems.

 

[pls5286]

Maybe I misread that, but it sounded like it was the OP's parents who were making fun of her and not letting her rent the ECV. I really hope I'm wrong on that because that would be awful for her If I'm right personally I wouldn't expose your kids to people who think it's okay to mock your problems.

You are correct. It is my parents who are causing the problems not my kids. My son is very understanding and very helpful to me. If it were just me and my kids I would have no problems using a ECV and have used one before, in fact, my son has insisted on it on occasions. My kids are not embarrased by me, it seems my parents are.

 

[LindaBabe]

Rent the ECV from off site, delivered to your hotel. You are a grown up now and your parents can either live with your decision and be quiet about it or stay at the hotel by themselves. Sorry that sounds harsh, but why should YOU jeopardize your health because of THEIR insensitivity and rudeness?

In fact (now my blood pressure is up, thinking about them) if it were me, I'd tell them in advance how it was going to be and they have a choice - either be gracious about it and hold their remarks, or I'd be declining their invitation (for both myself and my children - do I want THEM exposed to that kind of behavior?). Grrrrrrrrrrr!

 

[peemagg]

It sounds like Mom and Dad need a reality check. The reality is that you need the ECV! Now get over it! If they can't accept that then as hard as it might be I would decline from their offer for both me and my kids. I could not allow the kids to be around that type of thinking and I would explain it to the kids why we aren't going. It sounds like your kids would understand and maybe it will be your son who sets his grandparents straight.

Good Luck and get that ECV if you decide to go no matter what your parents say.

 

[pudge the fish]

not to be rude ... but I agree with PP's as to saying Hey- I need this ECV so I can keep up. if not well then BYE, have a nice visit w/o us- I am not going to risk my health or my kids being w/o a parent just so you can make fun of me needing an EVC.

Some people have no idea what it is like to have issues or a disABILITY. some don't believe that there is something wrong. Others have NO TOLERANCE for others issues.Some just don't accept that there is a need. You do need an EVC and I would put my foot down and tell them how it will be.

Best wishes and
I hope it all works out

 

[Cheshire Figment]

Please ask the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[bidnow5]

An ECV will make the trip better for everyone if your parents don't care about your health I would say thank you but we will sit this one out

 

[Earstou]

Rent an ecv ahead of time from offsite and have it delivered to your hotel. How can your parents stop you if you already have it?
I have a rare condition (Chiari) that took 13 years to be diagnosed, so many thought there was nothing wrong with me. I still battle the "invisible disablitly" fight. I no longer care what others think, I do what is best for me and for my children. I'm the one that has to live with this body, so I'm the one that dictates what this body needs to live life to the fullest!
So go, use an ecv, and enjoy WDW with your kids!

 

[Piper]

I totally understand what you mean. I am the oldest of 3 and the only one to have significant health problems. I was diagnosed with RA and scoliosis in 7th grade, Lupus after my youngest child and shortly after that a doctor saw my "bumps" and realized that the scoliosis was connected to Neurofibromatosis (after a biopsy of a couple of the "bumps")

I have been teased and made fun of because I can't climb Mt Everest (my brother has) or work from sunup to sundown like my sister. They really had a field day with the weight gain that came when I started prednisone!

Although it hurt that they were not understanding, I just ignored them and did what my doctors said was right for me. I am still working full time at the age of 64 even though I have some heart and lung problems from the Lupus. I wear braces, use an ecv when needed and generally live my life the way I need to.

My sister has developed a touch of arthritis in her wrist and you'd think it was the end of the world. My brother's daughter has developed RA (runs in families!) They are a little more understanding now!

Just ignore the comments as much as possible and do what you need to do to take care of you. I do believe in karma.

 

[Windjammermay]

Don't be too upset with your parents. The hard thing about disability is thinking that someone will understand it. Family memebers can be the most hurtful. They go threw a time of denial like some of use until they can finaly come to terms with it.

Your parents maybe thinking that they could not be to blame for "thier" daughters illness. They had given birth to a healthy child and maybe in the back of their minds they may be feeling guilty. so, denial is the best way to go for them.

Embrass your disability, it will help you better handle what is ahead of you. Do what you need to do to help you live better. Use the chair to better serve your needs that is what it is there for. There are some that do understand and help use to be more confortable with our disabilities.

Maybe your children can help your parents deal with your disAbility. Thier love, kindness, and understanding may help your parents to see better.

It is family members that hurt the most becuase thier love means the most to use. Your parents may need more time. They maybe looking at you not your struggle.

It is more than a challange....it is an adventure

 

[KPeveler]

ok, take what i said about your kids and apply it to your parents - if YOU need it, then USE it. you would be surprised how fast they can adapt!

I agree - rent a small one from off site and since you will have it and have paid for it, they can't say much!

 

[BayouMickey]

I meant to start a new topic..

 

[GRUMPY PIRATE]

I meant to start a new topic..

If you mean a new thread, go to the board list and click on the icon (new thread) in the upper left.