Getting Depressed

[labordoula00]

Okay so, I am doing research and planning our trip to Disney world in July and I am starting to realize that we might end up spending alot of time in the hospital if we aren't careful. We are trying to attend the Angelman Syndrome conference in Orlando at the end of July. Our daughter who has Angelman Syndrome does not regulate her body temp well and heat causes her to have seizures. (why the planners of the conference picked july for a bunch of seizury kiddos is beyond me) I thought that the GAC would make it so that our DD wouldn't have to be in the heat for long. Now I am getting nervous and scared. She will also be in a wheelchair and I know that those seats aren't very breathable. I am getting depressed about going and thinking maybe it isn't such a good idea. I really want to meet other families with Angelman Syndrome but, now I am thinking it might be wise to just wait on a cooler time of year. Any advice or pointers would be greatly appreciated!

 

[mechurchlady]

CHOCOLATE

Works for me.

First off you need to concentrate on the reason for the trip which is the convention. It will be a chance to talk with other parents and for your child to see she is not alone in the world. You can learn about tips and maybe help someone who is new to the syndrome. It will be a good time for you to learn, share and make new friends.

Last August I went to a convention that was held just when San Antonio switched to winter hours so most parks were closed, hot summer, Labor Day weekend, and a hurricane was heading for the city, lol. I got out on Sunday and the hurricane made land about 20 hours later. Those who waited ended up with delayed flights because their plane came from rained out areas. Convention planners do make mistakes, lol.

They do not have July up yet but you can check their calendar later.
There are Early Magical hours which would get you into the Studios at 8 am or let you stay until midnight at MK or Epcot sometimes. The 15th of may the EMH at MK is until 1 am.
Regular hours are around 9 am opening so you can get a couple of hours in a park then do some indoor stuff like Bug's Life then make your way back to the entrance.

Fastpasses also would cut down wait time and one person takes the family's tickets and speed walks to the fastpass machine to get the passes then speedwalks back in time to ride or two. With planning, EMH, GAC, kind hearted CMs, luck, and fastpasses you can get a couple hours a day or night in while the parks are cool. At MK you can take the train around to other parts of the park. You can walk through the stores in Main Street to avoid the heat.

Nurse's stations are nice cool places and they can help you with some needs like OTC medicine and a place to lay down. There are buildings you can camp out for a while if she is getting warm.

GAC is very important. You can take her in her stroller into any place that allows wheelchairs even if the signs say "no strollers past this point". It is called a "stroller as a wheelchair" GAC and tell them her limitations such as not being able to regulate body temperature.

Cooling vests are available that help keep people cool.

Have some chocolates and hugs from me.
Laurie

 

[Schmeck]

They scheduled the conference for Angelman Syndrome families for Orlando in late July? Who was the brilliant organizer that made that decision??? Blazing hot sun, high humidity, and Angelman Syndrome do not mix, that's for sure!

While a GAC can keep you out of the sun for attractions, it will not prevent the sun exposure you will receive between attractions, from the parking lot or bus to the gate, etc. Luckily, there are all kinds of gizmos you can use, from wide brimmed sunhats that have SPF built in, to clip-on fans and misters (I'd get two, one for each side of the stroller/wheelchair) Try to find one of those clip-on umbrellas for the wheelchair too!

One of my favorite survival strategies is to duck into the shops along Main Street at MK, the ones on the left (as you enter) are all connected. Stay in the AC as long as possible!

I know you'll have a great trip, just relax, realize you won't be able to do everything (no one can, unless they are there for 15 days!) and go with the flow. We go in August, and we really enjoy the late eveneings at the parks. WDW at night is so cool!

 

[Mary976]

I think you can have a great trip as long as you have reasonable expectations for touring the parks. If you know in advance what your top "must see" attractions are, then you can tour using fastpass and by going to the parks early/late and avoiding the hottest part of the day. Many people here report good luck using Tour Guide Mike or the Unofficial Guide (in print or at www.touringplans.com). Then during the heat of the day you can rest in your hotel or take a dip in the pool.

There is lots of info about the GAC in the sticky at the top of this forum. As mentioned, if you need to cool off in a hurry, then the First Aid station is great, or else you can duck into the nearest shop or restaurant.

Good luck!
Mary

 

[kittycat9]

Have you contacted Guest Services? My son has CP and a seizure disorder, along with difficulty regulating his temps (also causes seizures). They told me to take a doctors note to guest services, and we'd be provided with a special pass that would limit wait times and allow for specialty seating at shows if he's in his stroller (which he likely will be due to the heat), in addition to ride assistance.

 

[eternaldisneyfan]

I am very sensitive to heat. There are ways to cope.

Basically every attraction and shop and restaurant has excellent air conditioning. Animal Kingdom is more difficult.

Bring those instant first aid ice packs from sports stores.

Bring small hand held fans and misters.

Bring umbrellas/covers.

Be flexible and willing to duck in a shop/building to cool off.

Utilize Fastpass.

Get a GAC.

 

[mechurchlady]

Have you contacted Guest Services? My son has CP and a seizure disorder, along with difficulty regulating his temps (also causes seizures). They told me to take a doctors note to guest services, and we'd be provided with a special pass that would limit wait times and allow for specialty seating at shows if he's in his stroller (which he likely will be due to the heat), in addition to ride assistance.

A doctor's note is not needed and usually is of no use to CMs who hand out GACs. They are not allowed to ask for one. Just tell them what limitations the person has such as cannot handle crowds, cannot handle heat, hard of hearing, no stairs, or vision problems.

They will give you a "wheelchair as a stroller" GAC and tag for the stroller. It can go any place a wheelchair goes even if the signs say "no strollers allowed".

A major myth is that the GAC will get you to the head of the line and make lines dissappear. They do not but do allow you to take the shady stroller into lines and if possible get to wait in a shady area. Often times the disabled line requires a wait that can be longer that good trip planning, good tour guide media, early entry, off season, and fastpass can ever do. I sat on Space Mountain and waited and waited and waited for our vehicle to slide out at Disneyland. They one will send one vehicle per cycle often so you end up waiting longer than with the fastpass or getting to the ride early.

Two myths shot down in one post.

CMs can help steady a guest but cannot lift or transfer guests. Some rides they can stop the ride vehicle. Some rides they might hold onto a wheelchair so as to steady the chair while a guest transfers or bring the person's chair to the ride vehicle so the person can transfer. Some rides have separate loading areas like Toy Story Mania. Technically CMs do not have to help guests but some go out of their way.

 

[D L and K's Mom]

DS has the same problems. We did ok last July. Take frequent breaks and "spritz" with a mister. We used one of those neck coolers on his neck and frequently cooled it. We went to the parks early and left and took naps and pool breaks at the hotel. DS did very well. unfrotunatly we have had 2 trips to Celebration ER for seizures in the past. I think just have your DD get enough sleep, keep hydrated and cool. This worked best for us. Good luck!!!!

 

[OneLittleSpark]

I'm afraid I've not read the responses to this thread yet, so I may end up repeating some people. Sorry if I do!

I reckon you could probably do Disney in July, as long as you manage everything really carefully. You won't be able to do commando touring; you won't see everything; you won't be going all day from dawn to dusk, but you'll still be able to find loads of fun stuff to do! Do everything you can to minimise time outside and keep her cool (OK, that's rather stating the obvious, but I am working up to something here ). A few tips off the top of my head:

Use FastPass for any attraction with an outside / partially outside line - there will probably be a fair few, so be ready for a bit of waiting

If you want to watch parades, pick a cool spot and have someone in your party stake it out early (if she's using a wheelchair, the MK wheelchair viewing area in Liberty Square is shady and cool, but I'm not sure what the rules would be on someone else holding the place without her there)

Avoid being out in the middle of the day - hit the parks at rope-drop, then head back to the hotel when it starts getting too hot (allowing time for waiting for buses etc). You can go back out and explore the parks in the evenings. If she's not doing well at all during the day, go nocturnal and play in the parks when evening rolls around!

Rig up a cooling system on her chair. you can get small battery-powered fans that can clip onto the frame, ice-packs / damp washcloths etc around her (though obviously make sure she doesn't get too cold) and some kind of shade. You can pick up a parasol in Liberty Square that will clip onto a wheelchair or stroller frame, which would also look pretty

Know where you're nearest 'cool place' (shops, shows, restaurants etc) is at all times, so you can get there quickly

You may want to avoid Animal Kingdom, as this involves being outside in the heat a lot, with longer walks to places, more open air theatres and outside queues

Tom Sawyer's Island is probably another 'no', but as she'll be touring in a chair, she wouldn't be able to explore there anyway

EPCOT FutureWorld might work well for you, as you only have to go outside to get between the pavillions, which means nice long cool down-sessions

Plan ahead - you probably won't be able to see everything while you're there, so work out before you go, what the 'must see' attractions are for everyone; you don't want anyone going home unhappy!

If you want to hit the water parks, pick an over-cast day and make sure she wears an old T-shirt over her swimming costume (the bigger, the better). We've done this since we were little to stop us getting sunburn, but it also keeps you cool

Keep your plans flexible, so you can take longer breaks, stay at the hotel for a 'down day', or go at a gentler pace as necessary

If she gets good days and bad days (I'm afraid I'm not familiar with the condition), you might want to save DisneyQuest for a bad day, as it's all inside and fully air-conditioned.

Keep hydrated!

Oh, and you may have to take a few extra ice cream breaks, but I'm sure she'll cope with that somehow

Basically, all this boils down to: Be sensible, be flexible and make sure she listens to her body. Do whatever you need to to have a safe and fun trip for everyone.

Good luck and have a great trip!

 

[hainerfamily]

Great to find another family planning to attend the conference.

My AS son is 3 1/2 and we went to Disney last August for 2 weeks. (The tropical storm did help with the heat, but we got the heat too!)

I reset my expectations of our schedule to be back at the hotel for afternoon naps and swimming; even just finding a shady spot in the playground was great.

With all that downtime midday, we could go later into the evenings but found the bus rides home a disaster.

He was in his Maclaren Major Needs stroller then and I fought using it as a wheelchair on the busses but after being head-butted where I saw stars one night, I gave up the fight and from then on I boarded and attached it like a wheelchair. (This year, we'll have a wheelchair.)

We are annual passholders with the Tables of Wonderland dining discounts. So, we purposefully stayed away from quick dining and went full service for most of our meals (sharing our plates with the kids -- it was as inexpensive as quick service for 4). This gave us less stress with no lines and great air conditioning.

The GAC/stroller is a wheelchair were required tools to get us through the day. And even though we waited longer in some lines (like Toy Story), it was very comfortable, more elbow room and we chatted with some great families!

We plan to stay on property at Disney while at the conference. My in-laws will watch the kids and go to the parks/pool while my husband and I are at the conference.

Happy Planning! I started an AS conference thread to see where families are staying if they are staying at Disney and not the Hilton. We aren't booked yet, but the 4/3 means I need to get on it!

 

[Schmeck]

He was in his Maclaren Major Needs stroller then and I fought using it as a wheelchair on the busses but after being head-butted where I saw stars one night, I gave up the fight and from then on I boarded and attached it like a wheelchair. (This year, we'll have a wheelchair.)

Just to note - according to the Adaptivemall.com website, the Maclaren Major needs stroller is not designed to be used as a transport device on a bus. It has not been tested for such use.

 

[hainerfamily]

Yes, but it beats getting beat up; I always stood right there with him. He was safer there that all the babes in arms.

 

[mechurchlady]

Oh you are Canadian, pokes Schmeck, different country, lol.

In America the following applies, Canadians can ignore this unless visiting the USA.

Legally a bus, subway or other public transportation must follow federal laws and guidelines. Children are not supposed to be left in a stroller unless it has passed rigid testing that designates that said stroller or pushchair meets federal crash tests, etc.

All strollers not meeting said federal guidelines must be folded on any public bus even if it means the child being happy. Some day I will dig up the information but the last time I could not find it and found it by accident the time before that.

 

[GRUMPY PIRATE]

have you thought of a cooling vest?

http://www.glaciertek.com/

that is just one of the sites that sell them. I have worn them under kevlar and a nylon jacket, in the summer, in southern california.

They work really good!

They also make and sell (not the quoted web site) neck scarves and wristbands that contain crystals, that when soaked in water, expand into a gell like substance. I have taken them to WDW with me, and worn one around the parks (around your neck) and they work great. if they start to get warm, just take it off and reverse it.

you can also "recharge them" by simply soaking in water for a few minutes.

I have several web sites bookmarked on another computer, and if you want, can get them for you.

 

[Schmeck]

We have one of those neck scarf thingies! I like how small and flat they are when they are completely dry - they are very light and pack easily. They puff up a bit when they are saturated.

 

[GRUMPY PIRATE]

We have one of those neck scarf thingies! I like how small and flat they are when they are completely dry - they are very light and pack easily. They puff up a bit when they are saturated.

I first got one for when I would be out on a gun range in summer, in the sun for eight hours. Pretty hot!! Then I stared using them with I was doing yard work. And of course, got some in nice colors to use during a WDW trip. DW can't wear them all the time, as they make her too cold, when we would go into a building with A/C.

Then found the "vest" that has the same type of set up. I think it would be perfect for the OP to use for her daughter.

 

[mom2nji]

I also wanted to suggest the parks have extra magic hours(stay open later on certain days) if you are staying in a resort. Spend the afternoons napping and play after dark when it is much cooler.

 

[SueM in MN]

For concern about heat and sun, the lines are not going to be your biggest problem.
The time you spend getting back and forth between things are.
Most lines are shaded and many have most of the line inside.

Something a lot of people have found even more useful than a Guest Assistance Card is using a touring plan that helps you be in the park and the area of that park that is least busy. Even during the busiest seasons (like Spring Break), it is possible to get on many attractions with a short (less than 10 minute wait) if you know where to go and when. Some of the ways to do that have already been posted.
Also, if it's real hot and the person is getting sweaty, it's easy to get dehydrated. Dehydration is something that lowers the seizure threshold (how easy it is to trigger a seizure).
So along with watching for overheating, watch how much liquid is taken in.
Another thing we do is watch the weather reports and we may change our plans based on how warm it's going to be. For example, AK feels very hot and humid, so you will want to plan to go there on one of the cooler days. Epcot has many pavilions where you can spend hours inside one building seeing different attractions. So, it's good for a warmer day.

Have you contacted Guest Services? My son has CP and a seizure disorder, along with difficulty regulating his temps (also causes seizures). They told me to take a doctors note to guest services, and we'd be provided with a special pass that would limit wait times and allow for specialty seating at shows if he's in his stroller (which he likely will be due to the heat), in addition to ride assistance.

As was already mentioned, check the disABILITIES FAQs thread. Post #6 has information about Guest Assistance Cards (we call them GACs for short). The information in that post is from Guest Relations CMS who work in the parks and from people who have actually used GACs.

Again, as already mentioned, you don't need a doctor's not to get a GAC and the GAC is not meant to shorten or eliminate waiting in lines (that is printed right on the GAC itself).
It also is not a Pass, it is a tool to communicate quickly with CMs what your basic needs are.
When you call the WDW or Disney number, the CMs you are talking to are not park Guest Relations CMs, they are general information CMs at a call center and the information they give should be taken with a grain of salt because it is not always correct.
As was pointed out by hainerfamily, using a GAC or a stroller as a wheelchair doesn't always equate to a shorter wait time. Sometimes you will actually wait longer, but the wait will be in a place that meets your needs.

He was in his Maclaren Major Needs stroller then and I fought using it as a wheelchair on the busses but after being head-butted where I saw stars one night, I gave up the fight and from then on I boarded and attached it like a wheelchair. (This year, we'll have a wheelchair.)

I can understand why you had them tie down the Maclaren Major stroller on the bus
I just want to point out for other readers that since it is not designed for that, in case of an accident, there would more chance of injury to the child sitting in it. I also know of someone whose special needs stroller got the frame bent just by the act of having it tied down on the bus. Special needs strollers that are designed for bus transport have been strengthened so that they won't be damaged or cause injury. Unless the bus driver is very knowledgeable, they will not usually stop people from doing tie downs of special needs strollers that are not suitable for bus transport.

Anyway, just posting so other readers are clear about what could possibly happen.