Questions about a possible MAW trip

[mom2jandjands]

Hello everyone,

My 9 year old has been given the opportunity to make a wish through our local MAW chapter. He's a kid who likes to think over these things, and so he's mulling over what to ask for. It could take a while for him to make a decision!

Two things that are on the "short list" are Harry Potter World and Kennedy Space Center at Cape Canaveral. I think the latter would be a particularly good fit for him. However, before I nudge him in that direction I wanted to get a sense of what might be possible. I don't want to set him up for disappointment. If you know the answers to any of these things could you let me know?

1) I have heard from others that if you wish for any of the Central Florida attractions (Disney, Harry Potter World, Sea World, Legoland etc . . . ) you can stay at GKTW, and visit all of them, or as many as you can fit in. Does anyone know if that's true with Cape Canaveral? Would it be possible to combine both into one trip?

2) I'm relatively certain that we wouldn't get approval from his pulmonologist to put him on a plane, and the idea of driving from our home in NYC to Florida is a little overwhelming. On a good day, DS lasts about 5 - 6 hours before he really wants to lie down and take a nap, so it would be a minimum 3 day trip each way, and realistically more like 4. Someone suggested the Auto Train as a solution. It would let us bring a car load of medical equipment, and cut the trip to 2 days. Has anyone used the Auto Train? Does anyone know whether MAW would cover the Auto Train?

3) My son requires an "alert trained caregiver" overnight. At home, we do a lot of schedule juggling, grandparent coverage, and some nursing care. A third adult would make it easier to provide continuous coverage on vacation. We have a family member who would be happy to come and be that person, and would be able to pay for them to join us. Would MAW/GKTW allow that?

4) My son receives medication by infusion in an outpatient setting twice a week. Would MAW be able to help arrange that?

Sorry for all the questions, I'm just trying to figure out what might work. If it looks like it won't work, I'll encourage him to choose something else.

 

[OurBigTrip]

I’ve taken the Auto Train, and I really enjoyed it. I was with a friend, and we got a bedroom, which made for a really enjoyable trip. It had a tiny bathroom stall inside, including a shower, a long couch that makes into a bed and another chair. A second bed folds down from the ceiling. The couch is plenty long to stretch out for a nap without pulling the bed out.

It’s pricey, but was well worth it for us

 

[mom2jandjands]

I’ve taken the Auto Train, and I really enjoyed it. I was with a friend, and we got a bedroom, which made for a really enjoyable trip. It had a tiny bathroom stall inside, including a shower, a long couch that makes into a bed and another chair. A second bed folds down from the ceiling. The couch is plenty long to stretch out for a nap without pulling the bed out.

It’s pricey, but was well worth it for us

Thank you! Did you have an accessible bedroom, or the regular one? A bed that folds down from the ceiling doesn't sound particularly accessible, but since the adult in there with him would be awake, it wouldn't be a problem for us, they could just use the chair and make the couch into a bed.

My other kids can sleep anywhere, so we could probably put them in coach (or whatever Amtrak calls it).

Looking at prices, the auto train seems crazy expensive, but then so does flying and renting a wheelchair van in FL, and my understanding is that MAW pays for that, so I'm hoping auto train could work.

Sorry to be asking all these questions. He is a kid who is hesitant to ask for things, and he needs a lot of encouragement to say what he really wants. I think he'd really really love the Kennedy Space Center, but I don't want to encourage him to wish for something and then find out it's not a possibility.

 

[Betty Rohrer]

Hello everyone,

My 9 year old has been given the opportunity to make a wish through our local MAW chapter. He's a kid who likes to think over these things, and so he's mulling over what to ask for. It could take a while for him to make a decision!

Two things that are on the "short list" are Harry Potter World and Kennedy Space Center at Cape Canaveral. I think the latter would be a particularly good fit for him. However, before I nudge him in that direction I wanted to get a sense of what might be possible. I don't want to set him up for disappointment. If you know the answers to any of these things could you let me know?

1) I have heard from others that if you wish for any of the Central Florida attractions (Disney, Harry Potter World, Sea World, Legoland etc . . . ) you can stay at GKTW, and visit all of them, or as many as you can fit in. Does anyone know if that's true with Cape Canaveral? Would it be possible to combine both into one trip?

2) I'm relatively certain that we wouldn't get approval from his pulmonologist to put him on a plane, and the idea of driving from our home in NYC to Florida is a little overwhelming. On a good day, DS lasts about 5 - 6 hours before he really wants to lie down and take a nap, so it would be a minimum 3 day trip each way, and realistically more like 4. Someone suggested the Auto Train as a solution. It would let us bring a car load of medical equipment, and cut the trip to 2 days. Has anyone used the Auto Train? Does anyone know whether MAW would cover the Auto Train?

3) My son requires an "alert trained caregiver" overnight. At home, we do a lot of schedule juggling, grandparent coverage, and some nursing care. A third adult would make it easier to provide continuous coverage on vacation. We have a family member who would be happy to come and be that person, and would be able to pay for them to join us. Would MAW/GKTW allow that?

4) My son receives medication by infusion in an outpatient setting twice a week. Would MAW be able to help arrange that?

Sorry for all the questions, I'm just trying to figure out what might work. If it looks like it won't work, I'll encourage him to choose something else.

for your transportation questions I would be talking to you Make A Wish group. on the auto train yes you bring your car but you can not get anything in it while on the train. on one of grandsons trips daughter had to get tests run 3 times in that week and I cant remember the hospital but it worked well even had to take her to ER one night and GKTW picked her up and brought her back so I didn't have to drag all 3 boys with me. if I remember right GKTW will work with you about the extra person if you pay. the one trip we were to leave the next week when adult daughter had relapse and ended up in hospital. MAW was ready to rearrange trip if we had to. I keep remembering things of the trips almost 10 years ago now. one thing to keep in mind Kennedy Space Center is about an hour away by car on a good day traffic wise from Disney. hope I have answered some of your questions. if you do end up with Disney/GKTW trip make sure you pack an extra suitcase to bring everything home. be ready to be spoiled. and lastly if he is allowed have ice cream for breakfast at least once during your trip

 

[Pooh2]

We enjoyed the Autotrain. It would be a fun adventure for a 9 year old!

My recollection of attractions options is that if you opt to to go Kennedy Space Center and HP World, you would get less days at Disney but there is an option to hit them all.

Enjoy your trip!

 

[mom2jandjands]

for your transportation questions I would be talking to you Make A Wish group. on the auto train yes you bring your car but you can not get anything in it while on the train. on one of grandsons trips daughter had to get tests run 3 times in that week and I cant remember the hospital but it worked well even had to take her to ER one night and GKTW picked her up and brought her back so I didn't have to drag all 3 boys with me. if I remember right GKTW will work with you about the extra person if you pay. the one trip we were to leave the next week when adult daughter had relapse and ended up in hospital. MAW was ready to rearrange trip if we had to. I keep remembering things of the trips almost 10 years ago now. one thing to keep in mind Kennedy Space Center is about an hour away by car on a good day traffic wise from Disney. hope I have answered some of your questions. if you do end up with Disney/GKTW trip make sure you pack an extra suitcase to bring everything home. be ready to be spoiled. and lastly if he is allowed have ice cream for breakfast at least once during your trip

Thank you! This is super helpful and reassuring. I think we'd be OK with just leaving stuff in the car, and could manage the one night on the train with just what 3 adults, and 2 kids could carry and stuff in an accessible bedroom.

He is welcome to eat ice cream three meals a day for the whole trip. Knowing him, he probably won't choose that, but his younger brother just well might!

 

[mom2jandjands]

We enjoyed the Autotrain. It would be a fun adventure for a 9 year old!

My recollection of attractions options is that if you opt to to go Kennedy Space Center and HP World, you would get less days at Disney but there is an option to hit them all.

Enjoy your trip!

If I am understanding the "standard" GKTW package, we'd get 6 nights, and the option to choose from a variety of tickets to fill the 7 days. We'd probably have 3 full days, one of which he'll probably be feeling not great due to the way his meds are scheduled, and then 4 "half" days where we'd either be traveling or at the hospital for a portion of them. So, it's not a huge amount of time that we'd have in the parks/space center anyway. My thought right now is that we might take those 2 super good days and spend one at Kennedy Space Center, and one day at SeaWorld, and then do half days or shorter blocks of time at a few Disney parks, HP World, and enjoying GKTW, and maybe a second day at Kennedy Space Center.

We're in a position where we couldn't pay for an entire trip, but we could add on some things. So, if SeaWorld turned out to be the best thing ever, and he wanted another day there, or he got to HP World and loved it and wanted to go back, we could make that work.

I'm going to check with my MAW person, and see if my understanding is correct, and if she thinks that they can figure out the medical stuff and the Auto Train. If she says yes, then my guess is that he'll probably end up choosing either "lots of stuff to build a robot", or the Kennedy Space Institute. But he could easily change his mind again.

If anyone has other ideas for cool wishes for a 9 year old science geek, I'd love to hear them!

 

[seashell7290]

I don’t know if you had his wish interview yet, but you should discuss all of his medical needs with the wish granters if you haven’t already. I volunteer with the organization and am pretty familiar with the process. Typically overnight caregivers are partially paid for and stay at a nearby hotel. Your wish granters that are assigned to you will let you know if the infusions can be coordinated. GKTW is a wonderful place so I hope you and your family get to stay there!

 

[mom2jandjands]

I don’t know if you had his wish interview yet, but you should discuss all of his medical needs with the wish granters if you haven’t already. I volunteer with the organization and am pretty familiar with the process. Typically overnight caregivers are partially paid for and stay at a nearby hotel. Your wish granters that are assigned to you will let you know if the infusions can be coordinated. GKTW is a wonderful place so I hope you and your family get to stay there!

We had an initial meeting that ended up being at a really bad time because of medical things we didn’t know were going to happen when we scheduled it, and we stopped part way through because he was too anxious to participate.

One thing that did become clear during that meeting was that he’ll do better if he’s got a sense of what’s going to happen, and what some of his choices are. So our plan is to spend some time talking about possibilities and then reschedule when he is ready.

As for the overnight support, the person we’d want is my DH’s younger brother. He would be happy to sleep on a rollaway in the living room with DS’s brothers, and we would be able to pay for his transportation, and tickets and meals. But the GKTW rules say that “guests” must be accompanied at all time and must leave by 11 p.m. so we’d need an exception to allow him to stay. Having him there would mean that whoever was up at night could stay back and sleep and we’d still have two adults in the parks, allowing us to divide and conquer. We’d also want him to be able to do things like take the other boys to the pool at GKTW or to get ice cream, which also seems like a technical rule violation.

Does that sound possible? A hotel room for him is probably not in our budget, and wouldn’t be anyone’s first choice anyway because we’d rather be together as a family.

 

[Betty Rohrer]

We had an initial meeting that ended up being at a really bad time because of medical things we didn’t know were going to happen when we scheduled it, and we stopped part way through because he was too anxious to participate.

One thing that did become clear during that meeting was that he’ll do better if he’s got a sense of what’s going to happen, and what some of his choices are. So our plan is to spend some time talking about possibilities and then reschedule when he is ready.

As for the overnight support, the person we’d want is my DH’s younger brother. He would be happy to sleep on a rollaway in the living room with DS’s brothers, and we would be able to pay for his transportation, and tickets and meals. But the GKTW rules say that “guests” must be accompanied at all time and must leave by 11 p.m. so we’d need an exception to allow him to stay. Having him there would mean that whoever was up at night could stay back and sleep and we’d still have two adults in the parks, allowing us to divide and conquer. We’d also want him to be able to do things like take the other boys to the pool at GKTW or to get ice cream, which also seems like a technical rule violation.

Does that sound possible? A hotel room for him is probably not in our budget, and wouldn’t be anyone’s first choice anyway because we’d rather be together as a family.

I would contact GKTW with those questions. the only problem that I could see would be persn staying back and getting meals as you would need the main ticket for meals. your villa at GKTW is different than a hotel room and you had your own washer and dryer when we were there. so we just put a load in each night and were ready for next day. I know they worked out some problems for us so try talking with them for help

 

[mom2jandjands]

I would contact GKTW with those questions. the only problem that I could see would be persn staying back and getting meals as you would need the main ticket for meals.

I woke up this morning and decided I'm worried about nothing with the uncle. I am very much a rule follower so I read that it says that there are no visitors after 11 p.m., and I think "Oh no", but I'm guessing that Mayor Clayton isn't going to show up at 2 a.m. to inspect the kid's bedroom for stray uncles monitoring the pulse ox.

As far as food, is there is a kitchen in the unit? On the tour it looked like there's everything but an oven? My guess is that we'll want to do some of our own food prep. I've heard that they do an amazing job with food at GKTW, but I also know that for my kids when everything is new and exhausting, they're probably going to want to balance that with some things made exactly the way mom makes them at home. So, I imagine that we'll buy some groceries anyway.

And the rule about not being able to eat without the "main ticket", that's only going to be a problem for people who aren't officially guests right? My middle kid sleeps a lot more than my other two, and his preference is for quiet as he falls asleep. So, ideally I'd love to be able to kick the other two out to go get pizza or swim in the evenings. Is that allowed if the actual wish kid isn't there?

 

[mom2jandjands]

I took the suggestion of reaching out to GKTW directly. I figured I'd tell you what they said in case someone later searches for answers to the same or similar questions.

They told me that kids who wish for Kennedy Space Center can stay there, but they usually just get one day at the Space Center, unless their MAW chapter pays for extra. I figure we could play it by ear and pay for an extra day if that's what he wanted, so that was good news.

They also told me that if his doctor certifies that my son needs someone awake overnight, and MAW approves of my BIL, they'd cover him as a wish participant, which means his transportation would be covered, and he could stay in the village. If his doctor certified that his presence was necessary in the parks, then he'd get park tickets too. In the past, his doctors have been willing to sign off on way more stuff than we actually ask for, so I don't think they'd have a problem with that.

I'm still trying to figure out the Auto Train thing, and particularly the Auto Train with oxygen, and the infusions while we're in Orlando, but I'm getting more confident that this could be an option.

 

[Betty Rohrer]

I took the suggestion of reaching out to GKTW directly. I figured I'd tell you what they said in case someone later searches for answers to the same or similar questions.

They told me that kids who wish for Kennedy Space Center can stay there, but they usually just get one day at the Space Center, unless their MAW chapter pays for extra. I figure we could play it by ear and pay for an extra day if that's what he wanted, so that was good news.

They also told me that if his doctor certifies that my son needs someone awake overnight, and MAW approves of my BIL, they'd cover him as a wish participant, which means his transportation would be covered, and he could stay in the village. If his doctor certified that his presence was necessary in the parks, then he'd get park tickets too. In the past, his doctors have been willing to sign off on way more stuff than we actually ask for, so I don't think they'd have a problem with that.

I'm still trying to figure out the Auto Train thing, and particularly the Auto Train with oxygen, and the infusions while we're in Orlando, but I'm getting more confident that this could be an option.

glad yo talked with GKTW even though it was years ago they were a big help when daughter had medical issues during her son's trip. from that trip I was pretty sure they would work with you. I don't remember the hospital's name that she used but it was not that far from the Village

 

[Alicenwonderment]

My friend's daughter couldn't fly because she had oxygen. MAW paid for a van for them to drive to GKTW. They drove from New England to VA and then got on a ferry from there. I have heard that MAW has paid from medical person to go with a family when needed. Some of those decisions vary by chapter. I was a wish granter in my state a while back and I'm sometimes surprised when a MAW family would say something wasn't covered when I knew in our state it would have been covered. There are some things that come from the national headquarters and then more guidelines that are dealt with at a chapter level. Something to be aware of but I really don't think it will happen because the wish isn't Disney is that depending on when you take the MAW the village can be full and then MAW usually puts you up at the Disney resorts. GKTW is awesome with accommodations. I actually volunteered there years ago on my college program.

As for other science ideas is there something that your child is interested in? I would suggest that you go on both the local and national chapter website for MAW and look at what other children wished for. There are basically 3 types of wishes. I want to meet someone, (if it is a famous person those may take longer since the national office has to make arrangements for that.)I wish to go, and I want. Maybe your child wants to see a volcano. The great thing about MAW is that they really want to be sure they get the child's wish. I do think it helps to have the child think about what they may wish for before the wish granters visit especially if you think it will be hard for the child to come up with what they want. If the child isn't ready to decide what the wish is at the first visit that is o.k.

Just to give ideas here are some wishes I've either helped with or know of.
The I want to meet Mickey Mouse wish child age 2 went to GKTW.
I want to meet Shriek child age 4 went to Universal in CA because that was the only place he was at.
Shopping spree child age 16, amount of money is set by age for our chapter.
HI trip child was 18 boyfriend and both parents, stepfather, and brother from service were there.
Dude ranch child age 8 Montana.

Child had their own treehouse designed.
One child had their own playground.
One child went to American Girl place where they made the dolls. She got to design an outfit that they made and was on the cover of their magazine.
Disney Cruise but the child's wish was to meet Mulan and parent found out that even though they were going on the princess cruise Mulan was not on the cruise. MAW then arranged 1 day at Epcot to meet Mulan before the cruise.
Child 16 San Diego zoo for child that loved Pandas.
Atlantis trip.
Good luck with the wish.

 

[SueM in MN]

One thing for him to think about regarding the Harry Potter areas at Universal is how he would feel knowing that others in your group will probably be able to ride the attractions that he probably won’t be able to.
4 of the 5 Harry Potter attractions have health warnings. The only one without is Hogwarts Express.

The London area (in the Universal part of the park) and the Hogsmead area (in the Islands of Adventure park) are REALLY well themed and immersive. Even if he couldn’t go on any of the attractions, they are still worth going for. They are so amazing and magical for someone who likes the Harry Potter.
The Hogwarts Express train is wonderful (a different experience going from Hogsmead to London than going back).
Guests who can’t /don’t ride Forbidden Journey can still take the castle tour (basically going thru the queue, but not riding). The queue is really well done and guests go thru a number of iconic parts of the castle.
I don’t know if that is officially available also for the Escape from Gringott’s ride, but I’m sure it could be arranged for a MAW trip.

This is a link to the Universal parks Rider’s Guide, which lists all restrictions:
https://www.universalorlando.com/webdata/k2/en/us/files/Documents/universal-orlando-riders-guide.pdf

 

[ChanaC]

Former MAW and GKTW volunteer here - people seemed to reply to your previous questions, and talking to your MAW chapter directly can help you with the others. One thing that wasn't brought up yet is the hospitals for your child's medications. Orlando has three children's hospitals, the closest one being Nemours Children's Hospital (which is still a bit of a drive away). There are also quite a few smaller hospitals and urgent care centers in the area if they can provide the services you need.

There is a list of hospitals and medical centers in the GKTW visitor guide, which is also a source of a LOT of information about the village, including services, menus, hours, and daily events. It probably answers any general question about the village you will have. Take a look! https://www.gktw.org/pre/pdf/village-guide.pdf