FLORIDA WITH AN ED FAMILY.
Two weeks last saturday we had a very exciting thing happen. We went LIVE on prime time TV as we were part of a surprise for our son William.
Ant and Dec flashed
to us in our home and surprised our boy as he sat on the sofa with a trip for four to Florida! all expenses paid!!! WOW!!! people actually win this stuff! See our story here.
The only thing was we only had 48 hours to get ready to go!!! Visas, money, passports, packing… you name it… we had a day to get sorted!!!
One of things I wanted to do was to contact Diana at the ED society. William was diagnosed with ED just about 3 years ago and since his diagnosis we hadn’t been anywhere really hot. We had always travelled to tropical places and unknown to us we were doing lots of the things we needed to do to keep William Safe already, but it is always good to get more advise.
Ectodermal Dysplasia
ED, Ectodermal Dysplasia is a very rare genetic condition that effects many things such as hair, nails and teeth. But most importantly it effects the ability to sweat. This is more seriou
s that you might think, and before you say ”’ ooh I wish I didn’t sweat, I bet you save a fortune in deodorant!’ well yeah thats true… but its quite a serious condition and is a huge issue for anyone especially a child.
We don’t only sweat to keep cool, we sweat when we sleep and when we are ill. How many times have you gone to bed feeling awful and that you might be getting a cold, you go to bet to ‘Sleep it off’ and as if by magic you feel better in the morning. The very concept of ‘sleeping it off’ really should be ‘sweating it off’ our bodies use sweating as a way to cleanse us of infection, virus and more, we don’t even notice it really but you will notice when you wake up in the night drenched after a cold or flu!
We get clammy when we have an infection or virus and of course we sweat buckets when we exercise and find ourselves in hot environments.
For a person with ED their bodies have to find other ways to do this, William may get a rapid heartbeat or be super short of breath if he gets a bug or simply overheats.. and believe me he gets EVERY bug going!!! ( he doesn’t sweat it out over night like us) He gets tired very easily as his body is working super hard to keep cool and the body pain he suffers can be unbearable. The biggest challenge is of course keeping him cool in hot environments. This blog is how we coped in Florida walking around Disney in 100 degrees of tropical heat with a boy ( and his dad) neither of who sweat! ( for more info about ED look here)
So… Dianna had talked to me when we spent time in Rome and she said how we could support William and Keith by using Disabled services throughout all areas. I had never considered classing William (and his dad) as disabled as we have always coped, but the more I spoke about it the more I realised how much we could be helped.
The first thing we did was get a letter from The ED society, This explained that Both Keith and William had this condition and that they needed extra support though any disabled sources provided. I put this in my bag and though I would only use this in Disney World but actually used it more than I thought.
Here is how we got on….
Airport.
We found Gatwick pretty quiet and to be honest, as prize winners we did feel very special and like VIP’s.
There are plenty of seats in the airport and its nice and cool. We were greeted with a party in the Virgin Lounge. (I believe you get access to this lounge if you book a Disney Holiday through Virgin. )
I would imagine it to be a bit noisy and busy on a normal day and do think we may make use of the free drinks and then go find a quiet corner in the airport departure lounge.
The Flight
We flew with Virgin Atlantic, now I know we were on this amazing prize but the basics still applied to us. Mostly that 9 hours is a long time on a plane!
but the Virgin staff really made it easy for everyone. Drinks are free and they are happy to keep providing you with water and such. They are friendly and you don’t feel like you are pestering. I know we have always flown with Thompson fLy and the staff are somiserable and you really know they don’t want to help… so you stay away from asking for anything.. not good when you need to ensure your family are catered for.
The seats have good leg room and they allow you to roam around the plane for a stretch. The plane is kept cool and there are good blowers in the roof that you can aim on each other to give a bit of extra temp control.
After a 9 hour flight to America we bumbled off the plane with the other passengers, as we sleepily found our way to the passport control we saw the huge lines of queues. We joined the end and william sat on the floor exhausted and pale. Keith was struggling too and I looked around seeing if there was a bench or something they could sit on while I kept our place in the queue. As I looked around I was the sign, ‘Disabled or Special assistance queue’ could we use that? we had a disability and we were going to be using a similar service in Disney.
I mentioned it to Keith and he expressed concerns, we weren’t in a wheel chair and didn’t look disabled.. would they question us? We had the letter in our bag and we did need support, we decided to go for it.
We guilty walked into the queue that only had two families ( in wheelchairs) and one with a little boy who seemed to have a learning disability. No-one battered an eyelid and we went through the line smoothly and found ourselves on the air conditioned coach, everyone calm, waiting for the rest of the party to join us. Realistically we still had to wait the same time but the difference was we waited in a better environment.
Transfers
Disney had teamed up with Virgin and Itv to provide our hotel and transfers so we were shuttled to the hotel on one of their coaches. Staff were brilliant and the driver welcoming. The bus was fully air conditioned and had seat belts.
Water was available on request and there was a loo. As anyone with an ED child knows… a loo close by is very important!!!! ( all that water)
Magic Kingdom: The original and most magical… Castles and princesses, parade and Mickey! bloody packed always and is huge!!!
Epcot: A slower paced park with more educational attractions. ( don’t forget every attraction in Disney world is bloody brilliant…) don’t shy away from this park because it hasn’t got the roller coasters and thrills… we actually find it’s our favourite. You need a full day ( if not two) to enjoy this fully
Hollywood Studios: All about films and blockbusters. some rides and loads of attractions and activities, smaller than the others but full to the brim of starwars, Mickey and cartoons.
Animal Kingdom: A slower pace like Epcot but all the attractions are excellent and awe inspiring. the live animal attractions are great and its obvious Disney take good care of their live stock!
Blizzard Beach/Typhoon Lagoon: Both are water parks but nothing like you would imagine… you feel like you have stepped into another world… shallow pools, lazy rivers and kids pool their will never believe… all themed and super wonderful.
Everything and I mean EVERYTHING in Disney world is fantastic! You never go on something and think it was rubbish! This time we didn’t go on a single roller coaster and enjoyed family rides that suited us all ( Kitty is three and William 12) honestly it is all mind blowing…
If you have a full 2 weeks you can take things slower and do every inch of the parks, maybe even do a few days finding Mickey ( a treasure hunt searching for hidden Mickey images) If you have a short time you can plan and select what you want to do.
Our Time in the Parks
Our first day was a hot one and we made sure william had a swim and shower before we set out into the parks, we had water and William and Keith both wore hats and light clothing. As we arrived at Hollywood Studios it was super busy at the ticket gates. We decided to use the disability care assistantance gate and we were through in minutes.
As we got inside I sat the family on a bench and went to the Guest Services office to get our Disability Pass.
The lady came over to where the guys were sitting and set up the scheme on a hand held tablet. She took a photo of William and he tapped his electronic wrist band on the screen.
She explained how we could go to the front of a line and ask for DAS, they would then tap Williams wristband and a photo of him would come up on their screen, they would then offer us a time to return as a family. This would stay inn place the whole time of our stay.
The time given would reflect the length of the queue, so if the queue was an hour, we would be given a time to return in an hour. This helped us accept the help more as we weren’t pushing in, just not standing in the queue to save our place.
The lady was great and really made us feel welcome and supported, she didn’t question our request our condition and just got on with explaining what to do around the parks.
So we tried it…. we went to the first ride and the queue was an hour long, we went to the front of the queue and they happily gave us a time to return. As we walked away I heard a beep on my phone, the return time had automatically updated on my Disney app….
The Disney App and Wristbands
This is new! last time we came here, we had a card and that was it..
…now we were all given fancy wristbands. These wristbands did lots of things: they opened our room door, scanned it to get into the parks, you could charge everything to your room from all over the park and you used it to scan as you entered a ride.
It all ties up to a Disney app which we all had on our phone. This app had our booking on so showed our hotel, let us book fast passes in advance, showed us what times our fast passes and DAS return times where and also sent pictures to our phone that they took on the rides.
It was all a bit clever and although I heard people saying it was all a bit BIG BROTHER…but I liked it… I don’t have anything to hide and I loved how
everything was at my finger tips. I could literally go into the park with nothing but the kids ( although we needed to take in fans, water, share T-shirts, Calpol and suncream.. life of an ED family!!)
We found all the photo booths had been taken out of the end of the rides and instead photos would magically appear on your phone to look at . You could buy them directly from the app and charge them to your card.
Fast passes and DAS
By using Fast passes that we booked the day before and The DAS system we didn’t have to queue once. It took a bit of working out, but I could do this from our room as I lay in bed the night before.
As you return to your ride at the right time, you simply scan your wristband on the Mickey sign and it pings and lights blue letting you in. No-one knows if you are ‘disabled’ or if you have a ‘fast pass’ and this allows for you to feel comfortable that you are been assisted and not getting special treatment.
Keeping cool in the parks.
There was no doubt we landed in a bloody heat wave! a heat wave in Florida!!!! it was hot! and as we were only there for 5 days were were out the first day without having time to acclimatise to the heat.
Although we found loads of ways to keep cool we still had a some very HOT moments
But there are ways to keep cool….
Water
Disney have water fountains all over the park that are free to use, you can fill your bottles and cups with them and you don’t have to buy expensive bottles of water ( about $3 a bottle £2.40 ) although Disney don’t stop you from taking in your own food and drink which makes a change from UK theme parks who like to ensure you buy their over prized items.
Cool Spots
Everything is air conditioned!! shops, inside rides, queues, toilets… you never find yourself too far away from a cool place. Although we found ourselves with sore throats and sniffles because of the dry air and huge difference in temperatures. ( ED people often have a lack of or over production of various bodily fluids so bunged up noses and are throats are always a familiar face.. so this will probably irritate you if you have the condition.. take saline etc) We could live with that.. there is nothing more wonderful than stepping onto an air conditioned bus after a long day at the parks.
The hotel room was air conditioned too and we were able to adjust this accordingly. I found this out after waking up the first night shivering.
There were ice buckets in all the rooms too and a great communal ice machine central to each complex of rooms( no more that 2 mins walk) They provide plastic bags to so you can fill it with ice and take it out with you.
Water Play
There are lots of places with water too in the Parks, little play areas and splash areas, all free , inside the parks and great to stop and play for a while ( and cool down ) while waiting for your return time for a ride.
No-one feels too old in Disneyworld so even William and Keith were happy to play in the splashes.
One of the things we always have bought in Florida are the fans and refillable cups. They are super helpful for keeping everyone hydrated and cool. ( see below in ‘other things’)
Evenings
Parks don’t close till late ( 9pm out of season and up to 1am in the height of summer) obviously it is cooler on an evening. So if you want to take the day easy you can enter the park at 3pm and still have a full day ahead of you. Please don’t do what we did the first time we went and get so excited we ended up spending 16 hours in the park and made ourselves so exhausted we had to spend two days in our hotel room! The your time and enjoy what you choose to do in full.
If you stay in a Disney Hotel you get the bonus of ‘extra magical hours’this gives you two extra hours without the public crowds. (Either morning 8-10 am or evening 9-11pm ( low season or 11-1am high season). Even with the thousands of hotels rooms on the complex the queues and crowds are really reduced at these times so its worth doing.
These spray fans are brilliant, they are like a cleaning spray bottle and instead of just a spray they have a battery operated fan too. You see kids walking around with them round their necks spraying them selves and fanning themselves as they go. there are plenty of places selling them and plenty of places to fill them too. we have used the ones we bought here 10 years ago for year here in the uk and on other holidays.. a perfect ED product.
The refillable cups are great too, they cost about $14
dollars and are the kind of cups that keep a drink cool. There is a little chip in the bottom which is read as you place on the base of a soda fountain, you can fill it up anywhere around the complex, all eateries have them in all the parks and hotels.
They have ice machines and a selection of drinks, from water to energy drinks! even coffee and tea!.. keep an eye on the kids though… I found william hovering over the energy drink tap!!!! But they are fab… you are never far from a cafe/takeaway or similar and you can use for as long as you stay on the complex.
Hotel
which really helped us make the most of our short stay. But…. we worked out the costs for us to do this as a family and it would have been huge. Our Prize was worth around 12K we think ( two adults and two kids for 5 days) … we have always managed to do it for about 5k (for 6 of us for two weeks). There is no doubt it is something you need to save up for..However there are good reasons to stay on site in a Hotel if you can afford it……
The hotels are HUGE so don’t expect to feel special! saying that, staff are always up for helping. They are super clean and very very well thought out. Lots of activities for kids and adults, boat rides, fishing and Disney character appearances. I suppose if you stayed for 2 weeks you would make most of the facilities but we really wanted to enjoy the parks.
We found the best thing was how easy and quick it was to get back and forwards to the parks. Buses run frequently and are all air conditioned. It takes around 10 mins to get anywhere on the complex and buses come at the latest every 10 mins. Knowing you can get back quickly and cooly was a real comfort.
When you stay in a hotel off site ( a third of the price) or a villa, you will be driving. You need to pay $20 to park! and the carparks are huge. But its all planned out well, you park and get on a little train to the park entrance. I think it takes between 20-30 mins to actually get from parking the car to getting inside…, but it is doable and easy.
The busses stop at all parts of the hotel so you don’t have to walk to get to the stop. ( the hotel complex had 10 areas all hosting around 200 rooms in blocks) They are free and you don’t need to show a pass or anything. The driver tells you where they are stopping and you never feel rushed. Drivers are trained to help wheelchair users on and off the busses.
The hotels have great aircon both in the rooms and other areas such as food halls and shops. You can escape easily. You can change this inside your room so you aren’t freezing all night.
The hotel pool was lovely, there were smaller pools in the middle of every block of rooms and a main larger pool in the main part of the hotel. Towels were provided and there was lots of shade. The staff are great and would sort out shade if everywhere was full.
The main part of the hotel had a large food hall, you could fill your cups up here from free and there was loads of ice for the taking. Water dispensers offer free water.
There are a number of shops that sell basic groceries and large bottles of Water. We bought a large bottle to fill our bottles up daily. ( the water fountains in the parks are free but do have a chemical taste to them)
We didn’t need any medical support but there is a medical centre on site.
You are allowed to use the facilities of any of the Hotels on site, so there is lots of choice of restaurants and pools.
Swimming.
Disney world has two amazing water parks that are free with your tickets, you can get the free bus to them and they are brilliant for keeping cool and having fun.
They are huge so you won’t have any trouble finding shaded areas and safe areas depending on your Childs ability to swim.
The lazy river can be found at both parks and is a wonderful creating river that roams around the whole site. You grab one of the hundreds of inflatable rings and bob along until you feel like getting off.
As with the other parks some of the queues are long for the slides and there are no fast passes available. we found the staff really helpful and they allowed us to skip the line.
Conclusion
I know Disneyland in Florida looks to be a very confusing and hard work holiday. But we were only there for 5 days and we had figured out all the new bits and bats within a few hours.
Don’t be afraid of visiting with an ED family. It is one of the best places you can go and rest assured everything will be perfect.
There are very few places that customer care is 100% en-point! It is perfect and you will not find anything to complain about except for the cost of things and maybe the crowds!!!
We have visited both Disney World in Florida (4 times) and Disney Land in Paris ( 3 times) and I really do believe it is cheaper to go to Florida for a fortnight than it is to go to Paris for a week! Really… look in to it.
We had a wonderful prize and it was a once in a lifetime trip with the all the bells and whistles you could ask for but on a normal holiday there are cheaper ways to do it.
Look at villas and car hire as well as other flight operators. If you can afford a Disney Hotel it is much easier and will save you lots of time and energy. But this isn’t the only option.
I hope this has been helpful… we are back home and I still can’t believe it happened! but it did and we are still high on the magical memories we have!
Round Peg festival Mama 
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