Made of Gray

Traveling w/ Disabilites

A Christmas Vacation to Disney World

Traveling w/ DisabilitesHolly D. GrayComment

Back in March, when we were thinking about taking Caleigh to Disney World, we looked no further than Caleigh's Nanny Lisa. Her gig has been as a Disney Travel Agent for several years and she truly knows and loves all things Disney. We set our sights on December and she took it from there. I seriously didn't look at anything until we pulled out of our driveway two weeks ago. The frazzled planner in me loved that! 

When we started planning for Disney, Caleigh's surgery wasn't even a thought yet. We were still coasting along and the family flu event in April hadn't happened. I had finished applying to grad schools and the thought of having a fall semester didn't cross my mind. Little did we know how packed 2016 would get. 

Caleigh's love for Disney comes down to three things... Phineas and Ferb, Tinkerbell and the new live version of Cinderella. 

For this vacation we booked five nights at The Art of Animation Resort at Disney. We actually ended up getting to Orlando early and Lisa helped us get an extra night at our resort instead of staying outside of Disney. 

The first day we went to Hollywood Studios...

Caleigh was disappointed that the castle and all things Disney Princess weren't actually at Hollywood Studios. Unfortunately, there was a private event happening at Magic Kingdom that night and access to the park would be limited. Caleigh was a bear all day. She was interested while we were on the Toy Story ride and at the Sing Along with Frozen, but in between was rough. The Toy Story ride was completely accessible and Caleigh was able to stay in her wheelchair. For the sing along with Frozen we were put on the first row dead center. The snow, songs and sweet smelling fog were in our face. My advice would be to hit up Magic Kingdom the first day if at all possible. We didn't know what Caleigh's expectations were. I was chalking it up to another gem of the nonverbal barrier, but I was talking to another mom the next day and her daughter had the same let down as Caleigh. We weren't alone. 

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The second day we went to Magic Kingdom... 

For each day we decided to drive our car to the different park areas instead of riding the bus. I wont get into my issues with needing to leave the scene and not wait on anyone else (control) but that's why we drove. For Magic Kingdom, you still have to park and be shuttled either by monorail or ferry to the entrance. We chose the monorail. After an hour of being stuck on the track just off the un-boarding area, listening to people lose their minds, bang on windows and freak out; we were manually removed from the train by having the door pried open and then climbing over the seats. So much fun with a wheelchair. 

Main Street was packed with everyone taking photos in front of the castle. We were able to change and take Caleigh to the restroom in the baby care area, and later in the first aide area for more privacy. We headed to Starbucks and used our snack credits on coffee at least twice a day for the rest of our magical visit. Lisa set us up with some wonderful fast passes. These are scheduled times to show up for a ride so you don't have to wait in the stand by line. Tales with Belle was the first experience. Caleigh seemed to enjoy it, but didn't really like the spot light. We ate lunch and headed to Main Street to find a spot to see the parade.

The parade on Main Street... crowded was an understatement. It was nuts, but we got a front row seat to the 3pm parade. By the time it showed up Caleigh was yelling, red and hot. The sun was beating down. Everyone was so hot, children were crying and it was so crammed there wasn't anywhere to go. 

As soon as the parade passed we headed to first aide where we stripped Caleigh down, gave her iced pedialyte and tried to get her cooler. We stayed for a little over an hour. It could have been worse. I'm glad the first aide area was there and so close to where we were sitting. Tip: Don't sit in the sun waiting for the parade. 

Our second fast pass was The Seven Dwarfs Mine train. The mine train was the highlight of Caleigh's Disney visit. If she could stay on the ride and go over and over she would have gladly traded everything else. She was pumped. Fast, bumpy, dark and scary are her thing. I'm pretty sure I haven't been on a roller coaster since Caleigh was born. Laugh all you want at my crazy face. It was hilarious! Caleigh loved it. 

We had dinner reservations and then went to the Under the Sea Ride. By this time it was dark, the castle was lit up and we were trying to decide if we were going to stay for the fireworks. We used Caleigh's guest pass to put in for another ride on the Mine Train. While we were waiting for our time she rode the tea cups, dumbo, goofy's barnstormer and it's a small world. Rides are her thing. We finished the night with the Mine Train and then hurried out of the park and on the ferry (not the monorail). Caleigh was asleep and Eric and I watched the fireworks as the ferry pulled away. It was a perfect way to end the night without the crowds. 

The third day we went to Epcot...

After a fun filled day at Magic Kingdom, the adult filled experience of Epcot wasn't on Caleigh's to-do list. I see Epcot as a great place to shop, eat and check out the Epcot ball. What, no mine train today? Caleigh wasn't impressed. She rode the Finding Nemo ride, and then we ended up skipping the spaceship earth ride. We walked around for a few hours waiting for the Frozen experience ride. When we went to check in with our fast pass we were told it had been down the entire afternoon. Bummed, we headed to our dinner reservation and luckily they were able to get us in a little bit early. We ate at Coral Reef while divers swam in a giant aquarium. We left Epcot just after dark and got to bed fairly early. 

On the fourth day we went to Animal Kingdom...

I woke up on this day with my best energetic go getter attitude. The disappointment of Epcot wasn't going to follow us to Animal Kingdom dang it! Our first fast pass was at 9am riding the safari. We hurried, grabbed our Starbucks iced coffee and headed in. The safari was nice but totally scripted down to the "Oh, look at the elephant! It's perfectly positioned for you to take a photo." As it eats from the perfectly positioned tiny bit of hay. We're spoiled having the Fort Worth Zoo and Fossil Rim so close to our house, but I imagine those without access to wildlife would be super impressed. Caleigh enjoyed the bumpy truck ride and that's what counts. 

Our next pass sent us to the Lion King show. It was a fun, choreographed dance, singing and had some major theatrical special effects. Caleigh enjoyed it as well. We ate some yummy food in the Africa area and then headed to Dinosaur. Caleigh loved this crazy, dark and scary ride. We rode it twice in a row. By dinner Caleigh was worn out and very particular about the characters coming up to her. She didn't like it. We had dinner reservations where Mickey, Donald, Daisy and Goofy walk around to each table. Caleigh wanted autographs, no touching and no photos. Very specific. We left after dinner and got in for an early night of sleep. 

On our final day we went to Disney Springs and Magic Kingdom...

Caleigh's day started out with an appointment at Bibbidi Bobbidi Boutique as a gift from Mrs. Lisa. She loved every single second of this. We brought her own Cinderella halloween costume, she chose her hair style, makeup color and had her nails painted by the Fairy God-Mother's in Training. Caleigh loved this SO much!


Pampered and princess like we headed back to Magic Kingdom. This time we chose to take the ferry over. Good choice. 

Our last day at Disney World was pretty magical and moved fairly smoothly. We knew where things were, back ways and where to avoid the clumps of crowds. Caleigh met Tinkerbell and she actually enjoy the interaction. They talked about their matching hair buns and the importance of fair dust. It was cute and very quick. We showed up to Flight of Peter Pan over an hour late for our fast pass, but they let us get on. It was a great ride and extremely fast. It took longer to get Caleigh in and out of her chair to experience the whole ride. 

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We headed towards our third fast pass which was Pirates of the Caribbean. We got hung up with the parade, but it didn't take too long to pass by. Pirates of the Caribbean was very well thought out and the quality of theatrics was pretty impressive. We transferred Caleigh into the boat with us. While in the area, we went to the Tiki Room and enjoyed some Disney nostalgia. Right after we got off the ride we headed back to the Mine Train and got Caleigh's guest pass. The wait was two hours. So they gave us a time to return. 

We went and got Caleigh dressed back up in her Cinderella gown. After the over heating incident, we convinced her to take it off during the day and change back into it for our dinner at Cinderella's Castle. When it was time to go into the castle for dinner, we were ushered straight to Cinderella for a photo. We were then called up to the small dining room. This reservation is incredibly difficult to get. Lisa made some magic happen here. They were incredibly helpful with all of my dietary restrictions and the food the entire trip was fabulous. Gluten free and vegan waffles every morning, yes please! Nothing different in the castle. They introduced Aurora, Ariel, Snow White, and Jasmine and then the princesses went from table to table taking photos and chatting with the kids in total character. It was adorable. Caleigh wasn't too interested in the meet and greet other than seeing Ariel. 

When we were finished eating, we headed straight back to the Mine Train and Caleigh got to ride it one more time before we headed back to the ferry for the evening. It was a good end cap to our trip and we left at just the right time. 

 

I was really impressed with the accessibility of the parks, the rides and the kindness of everyone. The guest pass worked after all the fast passes where used up and you could only have one out at a time. Some of the smaller rides let us on right away when we asked, but the rides like the Mine Train had to go by the standby times. We barely waited in any lines for rides. We waited for the restroom, photos and food longer than the rides. It was perfectly planned. 

I'm so glad we experienced Disney with Caleigh at this age. We're blessed to have the funds and the time to do things like this with Caleigh. We've never had so many family photos taken either! Lisa planned this trip perfect for us and I'm so excited that we got to experience each park for a full day or more. Caleigh loved all of the princess attention and especially the salon pampering. If we go back it will definitely be during a cooler month, and we'll keep to Animal Kingdom and Magic Kingdom. For the cost, the Boutique is a must stop for any little girl.

With Caleigh it's good to have a down day in between with some swimming, shopping or a movie day at the resort. Caleigh's impatience was disappointing and I didn't expect for her to be bored if we stopped moving her chair for any reason. With short bowel syndrome and feeds there was a lot of breaks. She was overtired and overstimulated the majority of the trip. In my mind, our first visit to Disney World came with a vision of how that should look. That's my hang up and of no fault to anyone else. There were wonderful magical moments, but just like everyday life, I'm reminded often that I need to adjust my expectations and dreams as a parent, no matter how magical or dreamy a place can be. 

We packed up, walked around the resort lake that last morning and then headed out of town. 

Caleigh woke up at the beach the next morning...

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10 Tips For Flying With Your Special Needs Child

Traveling w/ DisabilitesHolly D. GrayComment

Our family is gearing up for another flight to Boston in less than a month. I received so many questions last year about us flying with Caleigh. Often traveling with those who have special needs and disabilities can be tough. There is so much to think about! We've had our share of ups and downs with both airline and road trip travel. I wanted to take the time to write a few tips that have helped our family adapt and thrive while flying. 

1) TSA Cares

I'm a big fan of the TSA Cares Hotline. As soon as you have your flight details be sure to give them a call at 855-787-2227. They ask that you call at least 72 hours before your flight.

There are a lot of moving wheels to TSA so sometimes this works and other times we've been on our own. I say do it regardless if it works or not. It's in the records that you've called in case there is an issue. The first time we flew with Caleigh a TSA agent from DFW called us the night before to find out our arrival plans. When we got to the airport there was a TSA agent waiting to fast track us through security. It worked brilliantly. Each time we've been in Boston and on our way home this has never happened. So we find a TSA agent, tell them that we've contacted TSA prior to our flight, let them know that we are carrying medical liquids, that Caleigh needs a private security check and will not be getting out of her chair. They then work us in but it takes a little longer. In general, patience, humor and kindness will get you through security without an issue. 

2) CARES Child Aviation Restraint

The more we've flown the more we understand that Caleigh's gigantic Britax Pinnacle Booster Seat isn't necessary on the flight. We curbside check it and move on. Dragging it on the plane is a beating. The flight attendants will not and cannot help you install it. I could go on and on, but trust me when I say that it isn't worth the hassle. 

I found the CARES Child Aviation Restraint on Amazon cheaper than Adaptivemall.com. Although there are rules as far as weight, seat position and use that you should read on Adaptive Mall, no one even blinked an eye at us for using it. We plan on utilizing the harness for a long time to come. 

I did make one adjustment to the setup. Caleigh's neck is sensitive and most of her harnesses have padding. The restraint doesn't come with a comfy neck pad so I purchased two seat belt pads to cushion the neck area.  Other than that it is easy to setup in the plane. If your child's extension tone is strong (aka uses a pummel) you may have to adjust their position often and/or cross their legs like we did. 

10 Tips For Flying With Your Special Needs Child via madeofgray.com

3) Don't let anyone "Breakdown or Fold" your child's wheelchair or special needs stroller

Trust me. They will ask you if it can be folded or broken down. Say no! If they don't ask when you are at the point of taking your child out of the chair and handing it off... tell them. This will require them to take the chair below the plane, but it will save you a broken chair in the long run. I know of several families that were left without a chair after someone decided they needed to make it fit. Just say no. Make sure the chair is tagged at the gate with your name. If you have a protective bag for the chair I would suggest using it, but the reality is that there is too much going on to even think about it. If you're worried about damage you might consider carrying travel insurance. 

4) Pack a separate cooler for medical liquids

This is always fun for us since we make Caleigh's jug of formula for 24 hours at a time. We have liquid medications, formula and ice packs. There are rules on ice packs and if they are significantly melted it will set off TSA's alarms. Be sure to read TSA's rules on the subject. We use an old square cooler, but I've had my eye on the Yeti Hopper. It would cut down the need for ice packs, but the cost is pretty extreme. Every time we've gone through security they have had to open her pedialyte bottles, formula and medications to swab them. Most times Caleigh's chair sets something off and they have to wipe it down and swab it too. We've all been chosen for a more thorough security check and it's one of us if not two each flight. It's kind of ridiculous to think about but again patience, humor and kindness will get you through security without an issue. 

5) Check as many bags as you can

For longer trips there is no way we can get around taking at least one piece of luggage each. One of our largest pieces is always loaded with Caleigh's heavy medical supplies. The last airport weigh-in was 90 pounds. We've always sweet talked our way to getting this overlooked. It cost a lot if it isn't something you can get passed over. So take the chance at your own risk. You can curbside check your other luggage, but anything overweight or deemed medical has to be done inside the airport. Of course for us coming home is always lighter with most of the supplies and especially bottles of pedialyte used. I recommend checking as many bags as possible. The less you are trying to take through security and cram in the airplane, the better. We generally board with the cooler, Caleigh's feeding bag, small diaper bag and our full technology backpack. The rest is checked and waiting for us when we land.

* We may try to ship some of the medical supplies ahead of us this time and I'll update with that information soon. 

10 Tips For Flying With Your Special Needs Child via madeofgray.com

6) Choose special assistance when booking your flight and call the airline's disability assistance line

When booking your flight there should be a box that asks if you will need special assistance. Always check that box and answer any questions that pop up. For Caleigh, I usually pick the "bringing own wheelchair" and "medical conditions" options. I always call the airline about a week out from flying. I give them details, mention the medical equipment, liquids and supplies that we will be traveling with. They like to put this information in the flight manifest, so I'm told. This is also a great time to mention checking the medical supply luggage and asking for it to be free. This message never gets transferred on, but at least you talked to __________ at __________ airline about your free checked medical bag, right?

The last time we flew American Airlines we had to get "permission" to fly with Caleigh's feeding pump while it was on and running. This was over the phone. When we got there and onboard, not a soul mentioned anything about it. I chalked it up to red tape and we flew the whole time with the pump running. JetBlue has never mentioned it. Be sure to see what your airline requires. 

I'll also add here that I try to book our seats as close to the front of the plane as possible. It's just easier to get in and out without having to walk the long galley. 

7) Arrive early to the airport and the gate

The standard arrival time is generally 1 hour before your flight. We always try to be at the airport two to three hours before. There will always be something that pops up like long security lines, checked baggage drama, potty breaks and the need for caffeine before boarding. This extra time has giving us an hour to lounge before our flight to fifteen minutes of running to the gate. It varies. Once you're at the gate be sure to check in. Let them know that you will need early boarding with your child and they'll hook you up. Getting to the gate as early as possible gives us some time to stand with Caleigh, discuss the flight, look out the window and decompress. 

8) Don't forget restroom breaks and diaper changes

We've found a family restroom in every airport that we've been to. It can be a popular choice so don't be surprised if you get a knock every few minutes. There is usually a large changing table. Ewww, right? This is gross, but I always bring plastic chux pads to lay down. Fifteen minutes before pre-boarding we set Caleigh on the potty and line her pull-up or diaper with a super absorbent diaper liner (think huge feminine pad). I usually double up on the pull-up as well. The airplane restrooms are not even a choice when it comes to diaper changes or setting Caleigh on the potty. When we've had to change her I lay down a chux pad on my seat, move her over and quickly finish the change. It is what it is. Caleigh's short bowel syndrome requires 12-18 changes and/or potty breaks a day so it's bound to happen on a plane. As soon as we land we head straight for the restroom while our luggage is being brought up. 

10 Tips For Flying With Your Special Needs Child via madeofgray.com
10 Tips For Flying With Your Special Needs Child via madeofgray.com

9) Pack a lot of entertainment

Bring entertainment. Be it a tablet, music, movies, books, snacks, art supplies... whatever your child is into make sure you have it with you. We use earbuds for Caleigh's music and movies. This helps her ears during takeoff as well. We load up the iPad with movies, Dr. Suess and audible books and music and ask her what she wants to do next. The first flight we were ever on she was a saint. Now she knows that she'll be in a loud metal flying box for hours and she gets anxious. We unbuckle her when she needs to move and try to accommodate the wiggles as best we can. 

10) Be kind

In general we've had nothing, but nice people during all of our journeys so far. There have been a few TSA agents that were sour and strict with their position. Being kind and compliant during those moments helps the stress level for everyone. I am one to get an attitude and unleash the bear when necessary, but nearly nine years in; I've learned to pick my battles because tomorrow there will be a handful more waiting on me. I want my child to be treated like everyone else in this world and if that means wiping down her chair and checking for explosives because something set off an alarm.... then fine. Having humor when necessary tends to be my husband's job and everyone seems more relaxed when you actually speak to them. Small talk can go a long way. Flying can be stressful and no one is very excited about it. Everyone is looking forward to their destination and this is the path to get there.

Remember that your children pick up on your stress. Pop your earbuds in and jam out, listen to a podcast, a new book or watch the in-flight movie. Each flight will get easier for your family. You'll get a routine down, your kids will know what to expect and your anxiety will diminish slowly. Just know that you are giving your family experiences by traveling. By stepping out of your comfort zone and thinking about your child; you'll have memories that would never happen from the safety of your home. Best of luck and enjoy! 


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SPML - The Unexpected Return to the Texas Coast

Raising the Rare Child, Traveling w/ DisabilitesHolly D. GrayComment

Three nights. We made it three nights before Caleigh’s short bowel syndrome caused issues with her SPML casts. Her guts had shut down during surgery on Friday. Sunday mid-morning they thankfully woke up, but wouldn’t stop or slow down. 

Sunday night into Monday, Caleigh woke up with liquid stool from head to toe. The “to toe” part was the issue. It was in her cast. We cleaned it as best we could, I threw all the laundry, including her knee immobilizers into the wash and we went back to bed. 

The next day I started making phone calls and we soon had an appointment in Galveston the following afternoon. So we were home for two days before loading up and heading back to South Texas. 

We arrived at Dr. Yngve’s clinic and they removed the offending cast. The stool had soaked up to her ankle and with it being so acidic we were grateful for a quick removal. Dr. Yngve made sure the angle and area was okay and then she got another purple cast. Caleigh is healing as expected. Her bruising is normal and her need for tylenol is becoming less.

We booked a hotel room on the ocean this time around and made the most of our one night on the coast. The sun was warm, but the wind was gusting 20-40mph the whole time. We didn’t explore as much as we would have otherwise. Maybe we’ll inspect the coast a bit more for Caleigh’s four month follow-up. 

At bedtime, we now put Caleigh’s knee immobilizers on over her casts and then wrap four gallon trash bags over those. She wakes up sweaty, but at least they are protected from any other diaper mishaps. 

Give or take 1200 miles... the Lesson was Learned.


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Viewing the Super Blood Moon from Boston

Traveling w/ Disabilites, Special Needs HomeschoolHolly D Gray2 Comments

Our family just so happened to be in Boston when the Super Moon or Blood Moon took place on September 27, 2015. It was late for Caleigh to stay up, but we decided to search for the huge Super Moon in the heart of Boston that night. 

Blood Moon Super Moon via Hacking Disabilities

We headed out the door of the Devin Nicole Family House and walked across the street until we found a parking garage we could get into. 

Blood Moon Super Moon via Hacking Disabilities
Blood Moon Super Moon via Hacking Disabilities

Caleigh loves astronomy and all things to do with space. We just finished a space unit in her homeschool curriculum. So we were able to talk more in depth about what was going on that night.

We got there a little early for the big event, but stayed until half the moon was eclipsed. We watched some pretty incredible time lapse videos, stared out our window and then called it a night. 

Blood Moon Super Moon via Hacking Disabilities

I didn't take my tripod with me for our trip so Caleigh's lunar watching kicks are caught in full blur here. The lights of the city probably made the viewing less spectacular than say the middle of the desert. The red of the Blood Moon wasn't as noticeable until the very end of the eclipse due to the light pollution. 

Blood Moon Super Moon via Hacking Disabilities

It was a pretty spectacular sight to see. Space really makes you think about the layers of our life and just how insignificant the little things are.  There is so much more going on out there than our daily routine, worries and small accomplishments. It's the big picture.  

Did you stay up to see the Super Moon? How was your view?


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