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We met Westin and his family a few months ago. I like to highlight the stories of different traveling families, so that we can all learn from their tips and experiences. This story is extra special since Westin has some special needs that make his travel experiences all that more complicated – and all that more rewarding.
Now at 13 months old, Westin has added another destination to his growing list, Disney World and other Orlando theme parks! One of the things I love most about these updates on Westin is how inspiring they are for all traveling parents, not just those who have children with special needs. This family services as a real reminder that young children aren’t a reason to stay home, they can be a reason to travel. If Westin’s parents can travel successfully with him and all of his special equipment and needs, then it gives inspiration for all of us who are traveling with children. Here is how this trip went, straight from his parents, Stephen and Angel.
About Stephen and Angel: For the past 10 years, Stephen and Angel have been frequent worldwide travelers taking as many as 20 trips a year; this is all before they decided to have a baby. They have a combined 4,000,000+ miles on American Airlines. Both have Executive Platinum status and Stephen has top status with four hotel chains: Hilton, Starwood, Hyatt, and Marriott. Both are addicted to earning points, keeping top-tier status, and continuing their passion for travel.
Westin is their 13 month old baby with a rare (only 300 to 400 cases in the world) genetic disorder called Costello Syndrome. This disorder impacts many different systems in his body and will result in developmental delays, feeding issues, breathing difficulty, poor sleeping, short stature, difficulty walking, high childhood cancer risk, shortened life span, and many other things that will crop up throughout his life. Westin is a “Tubie” which means he has a feeding tube. This means he gets all of his feeds through a button directly into his stomach. More details about a Tubie can be found on the Feeding Tube Awareness page http://www.feedingtubeawareness.org You can read more about Westin at www.WestinThomas.com
It was only eight months ago that Westin was in the Pediatric Intensive Care Unit (PICU) fighting to breath with a grim outlook from the doctors because they did not know what was wrong with him. They feared he could have a degenerative disease due to his high muscle tone, extreme irritability, feeding issues, laryngomalacia (causes an airway obstruction which was not able to be fixed by surgery in his case), along with some unique facial features. A few weeks later, Westin was diagnosed with Costello Syndrome. This gave Stephen and Angel new hope that Westin was not going to die by the age of 1.
While Westin’s condition is complex and fragile, Stephen and Angel are committed to getting him out in the world. Westin’s latest adventure took him to Orlando to spend Christmas with Mickey!
Westin’s Traveling Adventures:
After Westin’s last trip to Las Vegas in November, Stephen and Angel saw a remarkable improvement in his development. In Las Vegas, Westin rolled to his side and moved his arm across his body to pick up an object from the floor. This was the first time he had reached across his body to pick something up! While this milestone is probably not a result of taking him to Las Vegas, it left little doubt Westin loved to see new places and get exposed to new external stimulus like all the sights and sounds of Vegas. He LOVED the cool new slot machines and Stephen and Angel got in trouble several times having him too close to the machines – but he was entranced by them.
With this in mind Stephen and Angel planned Westin’s next adventure to Orlando. This would be Westin’s 3rd trip on an airplane. This is him loving his own upgraded First Class seat on the way home from Orlando. His socks say “I only travel first class”. He slept the whole flight.
Westin’s family tradd their one-bedroom Westin timeshare in Scottsdale, AZ, for a two-bedroom Sheraton timeshare just outside of Disney. This gave them a lot of extra square footage and a full kitchen. It is difficult to stay in a tiny hotel room with Westin due to all of his extra baggage. Going into the trip to Orlando, Stephen and Angel were concerned about how Westin would handle time at a theme park because Westin hates to be in the sun, hates the heat, and in general is a loud, cranky baby – and this is on top of needing to be tube fed and receive medicine frequently.
Once again, Westin blew them away! The first day Stephen and Angel took him to Disney’s Magic Kingdom, Westin lasted from 9 AM to 9 PM, only taking a few naps during the day. This was amazing since he got up at 4 AM that day and did not go to sleep until 1 AM that night. Westin has never been one for sleeping much anyways. He LOVED the rides and even more he loved the fast rides that spun him in circles which is not surprising because Westin has some sensory integration issues.
Westin continued to enjoy Universal Studios Islands of Adventure and Sea World but not as much as Disney World. Just like Stephen and Angel saw in Vegas, Westin made another milestone leap by rolling in a complete circle and pushing off of things to scoot all around the living room in the timeshare! Westin knew he was some place new and wanted to explore this new area.
Stephen and Angel’s experience with Westin at each theme park is outlined below.
Disney World [5 stars out of 5]
Overview: Stephen and Angel took Westin to Disney World’s Magic Kingdom and Animal Kingdom, each for a full day. Their experience at both parks was nothing less than magical! The weather was nice, partly sunny in the low 80’s. This was about the maximum temperature Westin could handle and he did overheat a few times resulting in needing to rest a bit in an air-conditioned building.
Due to Westin’s condition, Stephen and Angel were able to get his stroller treated like a wheelchair. In order to do this, they simply had to take him to the Guest Services office just inside each park. Stephen explained Westin’s situation (Westin is tube fed, has Costello Syndrome, cannot handle sunlight, has chronic irritability, and has many medicines). Disney issued them a wheelchair pass.
This allowed them to keep the stroller with them at all times so they had easy access to any medical supplies or medicines in the event of an emergency and did not have to worry about essential supplies walking off in the general stroller parking area. Westin was able to stay covered from the sun when entering attractions. It also allowed them to use the wheelchair entrance to all the rides and shows. While it is clearly written this is not a line pass, it definitely saved time in line in some cases. When they went to shows, they were able to get seated first without the crowds of people rushing around them. At every turn, they said that it seemed like someone at Disney was there to help.
Tube Feeding: Stephen and Angel found tube feeding at both Disney parks to be easy and convenient. This is mostly due to the large amount of air conditioned restaurants around the parks. Inside the restaurants, while the restaurants were fairly busy, they still found lots of room to move around and bathrooms close to clean supplies (Yes, Stephen did get a lot of funny looks cleaning syringes in the bathrooms). However, it would not have been as easy if they had gone the following week during Christmas break due to the crowds of people. Disney also has a Baby Care Center with room to change and feed babies but they did not use them (were never in that area at the right time) so they cannot comment on them.
Rides and Shows: Stephen and Angel found most of the rides and shows to be baby friendly. Westin was able to ride as a lap child on any ride without a height restriction. Stephen and Angel leveraged the fast pass as much as they could. They also could do the child swap on rides Westin could not go on. This essentially gives you another fast pass for 3 other people and is open to anyone with an infant.
Important Notice for Tubies: Many of the rides at Disney have a lap bar that closes automatically. With Westin on our lap this bar on many rides comes very close to his G-Tube. The worst was the Haunted Mansion. Use caution on these types of rides.
Westin’s Favorite: Hands down Westin’s favorite ride was the Astro Orbiter and Magic Carpets of Aladdin. Westin was not impressed with the Pirates of the Caribbean. He prefers the fast rides!
Universal [4 stars out of 5]
Overview: Stephen and Angel took Westin to Universal Islands of Adventures for a full day of fun. Like Disney, they were able to get his stroller treated like a wheelchair by going to Guest Services.
Unlike Disney, Universal gave them a card that allowed them to “wait in line” without waiting in line. They just had to take the card to the ride and get a time to come back. When they came back, they would go straight to the front of the line. This could be used once per ride. Universal does not offer fast passes, but does sell front of the line passes to anyone as an upgrade to the basic ticket. With this guest assistance pass, this was basically the same as buying the upgraded ticket. This pass even applies to the Harry Potter ride at Universal Studios. Westin does not do well sitting still in his stroller so this pass was very valuable to us so we could continue to keep moving through the park and come back to do the ride.
Universal also offers a child swap so families can take turns riding rides that young children are not able to go on.
Tube Feeding: Stephen and Angel found tube feeding at Universal to be challenging. This was due to the lack of inside air conditioned restaurants or other places to rest. Once place they found was the Dino Discovery Center. This was indoor and had air conditioning but they would not let Angel and Westin sit down until Stephen had gotten their food. With long food lines, they made Angel and Westin (and other people in wheelchairs) wait when it was clear their food was on the way. While it seems to make sense when busy, it seemed silly to at one point have four people guarding the entrance to the seating area with so many open seats. This meant that Westin had to wait longer until we were able to get his feeding supplies and medicines ready.
With any luck, someone from Universal will get a chance to review this procedure and make changes for people with special needs or anyone with young children.
Rides and Shows: The rides at Universal were not as baby friendly as Disney. Universal does not allow any lap riding on the rides. At 10 months, Westin was not able to sit well so this ruled out most of the rides. Surprisingly, even in Seuss Landing most of the rides had height restrictions.
Westin’s Favorite: Westin was only able to go on the Caro-Seuss-el (merry-go-round) as long as they sat on a bench instead of an animal and One Fish, Two Fish, Red Fish, Blue Fish. Stephen and Angel were able to get him to sit on the seat for this ride for a few minutes. He liked that that rides went in circles but he was not too keen on water being sprayed at him on the One Fish, Two Fish ride. Westin also liked the Grinch!
Sea World [3 stars out of 5]
Overview: Stephen and Angel took Westin to Sea World for two half days. Like Disney and Universal, they were able to get his stroller treated like a wheelchair by going to Guest Services. The down side was the guest services office was so small it was almost impossible to get in. Stephen was not sure a wheelchair could even fit in the office as he had to carry Westin in his arms.
Sea World also offers a child swap and the wheelchair pass was able to save a lot of time on the Polar Express. Other than that, Stephen and Angel did not find much value in the Special Assistance Pass.
Tube Feeding: Stephen and Angel found tube feeding at Sea World to be more difficult than at Disney. While they have many air conditioned restaurants, they were quite crowded and packed with people.
Rides and Shows: Like Universal, the rides at Sea World also did not allow lap children. This meant even in the kids’ area, Westin was only able to go on the merry-go-round. Many of the other children’s rides had height restrictions. As for the shows, Westin did not care much for the animal shows as they did not have a lot of lights and sound. The worse part of it all was the wheelchair seating was way off to the side in some cases. It was so bad at the sea lion show they could not see or hear very much since there were no speakers by the wheelchair seating on the side. Also, Sea World employees were not very good at helping them get a seat. When seating started for Shamu, they were almost run over by the crowd. If the shows had a separate wheelchair entrance, it was not clearly marked. Also, the rides did not have a clear wheelchair entrance either.
Westin’s Favorite: Westin was only able to go on the merry-go-round which he liked. He also liked the Shamu show. He did not care much for Shamu specifically but liked the lights and sounds of the show and the huge TV screen.
Overall, Stephen, Angel, and Westin had a great time in Orlando. The parks provided them with a level of assistance that made it possible for having fun with an infant with special needs. The complexity and challenges of traveling with Westin to Orlando was all worth it to see the smiles of joy on his face while he was getting to experience all of what Orlando had to offer.
What is up next for Westin? Health permitting, Westin will be headed to Maui, HI in May, Scottsdale, AZ in June, and back to Orlando in December.
Thank you so much to Stephen and Angel for sharing this update on Westin’s adventures. Having just returned from a trip to Disneyland with my own toddler hours ago, I can see how important these tips would be to a family traveling with someone who has some special needs.