I found information here and there on various forums, by googling "which resort has freezers," and "ice packs at Disney," and "sensory issues at Disney." I wanted to share what I learned in hopes that our experiences can help someone else.
The technical 411 for fellow tubie parents: Evie is 4 years old, has a g-tube, but eats 3 meals a day of blended foods by mouth. She gets supplemental Real Food Blends 3 times a day. We are at about 30% wean. We had gone to 50% wean, but she lost too much weight.
The technical 411 for fellow sensory parents: Evie is terrified in a closed room environment with a lot of people. She hates it when people speak on a microphone, and has almost physical pain when people start clapping and cheering. However, she does fine in a mall or a park because they are not as enclosed.
For those of you for whom sensory issues are new, the body basically has a hypersensitive or hyposensitive response to a certain stimulus such as noise or light. Here's a good article that quickly explains it: https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/sensory-processing-issues/how-to-explain-sensory-processing-issues-to-friends-and-family
Here are our tips broken down by topic:
TUBIES AND BLENDED FOODS
1. Disney is very accommodating and will try to help. Don't be afraid to ask for what you need. My #1 worry was how I was going to keep Evie's blended food cubes frozen if there wasn't a freezer in the Disney resort hotel room. I asked the Port Orleans staff for an extra fridge to turn to freezer level, and a microwave in our room (this isn't standard). They were able to make the microwave happen, but the fridge wouldn't be able to get up to freezer level, so they told us to bring our frozen food cubes and ice packs to the bellhop, with access 24/7 whenever we needed it. This was probably the most inconvenient part, because the bellhop was across a bridge and down the walkway, and I felt I should tip each bellhop when they went to the freezer for us. But still, we made it work.
2. Choosing a hotel: if you want the Disney experience, but can't do what we did in #1, I would say to stay at a DVC in a suite, or stay off-site in a suite. Having stayed at a suite (Homewood Suites) for a conference before we moved to Port Orleans, I really missed the "suite life." I had a full refrigerator/freezer and counter space to assemble Evie's food, and it was very convenient. The suites at Art of Animation and Fort Wilderness Lodge have fridges, but they were pretty pricey. However, the ambiance and the great customer service were pretty great at Disney.
3. Each time when we go on a trip, I make a list of how many blended cubes we need to bring. For a 5 day trip, the list would look something like this:
Travel Day 1:
Lunch for plane
PM: Chicken Curry (CC)
AM: French Toast (FT)
Lunch: Chicken, Rice, Peas (CRP)
PM: Goulash (G)
Formula x 3 (60 ml + 60 ml + 120 ml)
AM: Pumpkin pancakes (PP)
Lunch: Chicken Tikka Masala (CTM)
Formula x 3
Formula x 3
Dinner: G on plane
Formula x 3
I then have a ziploc bag for each type of meal, and count "3 2 oz cubes per meal x # of days" needed into each bag. I usually microwave the cubes in a bowl for 1 minute and then add Noosa yogurt (about 1 1/2 oz) and mix them together. Evie's favorite flavor Noosa yogurt is pumpkin.
4. Of course, the first day of Disney, I forgot to retrieve the ice packs from the bell hop before we got on the bus to Epcot! Our Disney planner had told us about Baby Centers, so we went there hoping to use their fridge. We found out that they did not have a fridge for us either. They just have changing tables and they sell various baby supplies. They sent us to First Aid, who gladly gave us plastic bags filled with ice, and this did the job. They gave us extra plastic bags too, so we could refill the bags with ice at other quick service food locations.
5. Water flushes all the time! In 90+ degree weather, we had to remember that we needed to give more water flushes than her usual routine. The heat made her quite lethargic, and she often refused sips of water.
6. We use the stroller bag from Thirty-One gifts. It travels well and keeps Evie's food pretty cold, depending on what kind of ice pack we use. They don't always sell it, but when it comes up, it's worth grabbing one.
For the plane, I loaded ice packs into this guy:
So is it doable for a tubie? Definitely! We just gave food in quiet places and then went about our business having fun. Food storage can take some extra planning, but definitely feasible. I did read that Disney chefs are wonderful at blending up food as needed if special requests are made, but we did not get to test that.
1. Rides: Evie does not like dark and noisy places. We tried the Frozen ride, the Pooh ride, the Nemo ride, and even It's A Small World. I would say that she tolerated them, but hid her face most of the time, unless a character she recognized came out and she peeked with one eye open. The Disability Access (DAS) pass really helped us avoid lines in dark and noisy areas, but I would say that she is not ready for rides. Perhaps with headphones, but her sensory issues mean she doesn't like things on her head either!
|This ride was not as dark as the Frozen ride, but quite jerky at times.|
2. Shows: If the child loves certain songs, I think this is still worth trying. When we went in, I told the cast member acting as an usher that my child may not like the show and we needed an easy exit. They showed us where to sit so that we could exit easily. Luckily, Evie enjoyed "Let It Go" and was able to sit for the entire show on my lap.
|The Frozen live show was pretty cute, and we sat near the exit just in case, but Evie enjoyed listening to the music.|
3. Evie did ok if she was in her stroller going through a crowd. I did bring headphones, but it just seemed too hot to wear these when it was so hot already.
4. Disability Access Pass (DAS): When you first get through the entrance, there is a Guest Relations building somewhere in the vicinity. On the first day of your Disney trip, if you go to the Guest Relations team, you can ask for a Disability Access pass. They do not want to know diagnosis or need to see a doctors' note. They want to know what kind of accommodations the person needs to be able to enjoy Disney. I told them that Evie is afraid of large crowds and noisy environments. The cast member immediately did some stuff on his iPad and scanned our Magic Bands, and that was it. Looking back, I might have also said that she needed her stroller as a refuge when standing in line. This would have gotten us a pink tag for our stroller so that we could take it into buildings, unlike everyone else who needed to use stroller parking. But we did ok without the pink tag.
Resources to read: Undercover Tourist gives a great overview of how to get a DAS.
Disability Resource in general: Great blog by Undercover Tourist
5. Places of Refuge: In such a busy park, it was hard to find places for Evie to take a nap for 2 hours. At Epcot, we spent 2 hours in the Baby Care Center, but later found the food court at The Land, which would have been much more comfortable for the whole family. At Magic Kingdom, we went after her nap, so didn't need a place to camp, but knowing that the Baby Care Center was there was helpful. Our friend suggested Pinocchio's Village Haus, from which you can see the It's A Small World Boats go by. Next time... At Hollywood Studios, we found the ABC Commissary (also suggested by our famous dad blogger friend Uncle Joe), and spent 2 very comfortable hours there.
Orlandovacation.com offers a short list of various quieter places in each park. There is an even longer list here: https://www.keytotheworldtravel.com/sensory-friendly-spaces-at-walt-disney-world/. We were ok with white noise at cafeterias, but others may need actually quiet spots to decompress.
6. Disney does a great job of helping people with autism and cognitive disabilities. They have a summary of their services here: https://disneyworld.disney.go.com/guest-services/cognitive-disabilities-services/. Their official brochure for guests with cognitive disabilities is here: https://secure.cdn1.wdpromedia.com/dam/wdpro-assets/help/guest-services/guests-with-disabilities/WDW_Cognitive_Guide_compressed.pdf
7. Use your phone flashlight or buy a mini light for your child who is afraid of the dark areas on rides. On one of the rides, it became pitch black for a minute, and we just sat there. I ended up using the light of my phone to comfort Evie, letting her know that everything was ok and that we could have light if we needed to. She definitely felt better after seeing the light.
That’s what I have for now! Please share your Disney hacks for feeding tubes and sensory needs of you have some!