Today's post focuses on headed to Disney World with a child with special needs. Expect a second post about tips for everyone later this week. ;)
If your child has a history of lots of hospital visits, respiratory issues, etc...I personally think it's a good idea to pass the idea of going to Disney World to your child's doctors. We mentioned it at one of our Pam visits to Isaiah's medical team and at every appointment to his various specialists over the six months prior to our trip. Because of Isaiah's history of respiratory problems, we made sure to ask Isaiah's pulmonary doctor since Isaiah would be flying and because of the heat/humidity down in Orlando...we worried how it would affect Isaiah. It's good we did that because Dr H ran a test and had us bring oxygen with us on the plane- we needed it. Asking his neurosurgeon brought us relief because he assured us that the pressure changes of the flight wouldn't mess with Isaiah's shunt.
Before to our trip, we also looked into the hospitals in Orlando. Most go to the local hospital for emergencies, but we knew that Nemours is down there as well. Unless it was a real emergency, we planned to take Isaiah to Nemours if we had any issues since they'd have access to Isaiah's entire medical record in the system....thankfully we never had to worry about putting our plans into action this trip.
At the advice of a few other special needs parents who have flown, we looked into contacting the TSA because I was very nervous about the security check. I was worried someone would have to pat Isaiah down and they'd inadvertently hurt him (not to mention how he has the shunt and port inside of his body). I was also worried about unloading everything to be scanned and I wasn't sure what to expect with how they'd "scan" Isaiah. Before calling the TSA, we found information on their website about a Passenger Support Specialist, so when we called (you should call at least 72 hours before your flight), we asked for a support person and they made notes on our ticket information. I gave them details about Isaiah's conditions and what I expected of them and asked what they'd expect from us.
When we arrived at the security check in BWI, we mentioned that we had requested a support person to the first TSA agent that we saw, and after a brief delay (turns out they never got that memo), a wonderful TSA agent appeared. We had been advised to get in line, but she pulled us out (initially felt like a heart attack moment), and had us go around everyone. She had our tickets and IDs scanned and quickly helped Dave get all of our stuff to get screened. She was patient with my pulling Isaiah out of his car seat and even helped us problem solve with the other TSA agents on how to screen the stroller since it wouldn't fit in the x-ray machine. I was able to hold Isaiah and walk through the metal detector with him in my arms and was met by an agent who swiped my hands and tested them for bomb residue. While we waited for my test to clear, our support person and Dave gathered up our stuff and I was allowed to put Isaiah into his car seat on the stroller. Once I was cleared, we were sent off on our own. If we needed assistance, our support person would have helped us to our gate, but we declined knowing they were busy and that we could figure it out.
Our security experience was similar before our flight home from Orlando, except they had gotten the memo that we'd be needing some help. ;-) Everyone was wonderful and we truly appreciated the patience and extra hands.
Since we were flying with oxygen, Dave contacted the airline we were flying with about two weeks before our trip. We found out that because of the oxygen and Isaiah's OI, we were eligible for medical pre-boarding. We did the typical online check in online 24 hours before our flight, but when we arrived at the gate the day of our flight, we talked to a Southwest staff member about a pass for medical pre-boarding. We also spoke to her about checking Isaiah's stroller as a wheelchair....but we didn't push it.
Strollers and wheelchairs are tagged differently unless you have a stroller marked as a wheelchair. If we would have made sure to push the wheelchair label, I don't think our stroller would have ended up broken (side note: I think it's ridiculous that strollers are basically handled with the same respect as a suitcase)...thankfully Southwest rectified the situation and replaced our stroller.
So, if you are treating your stroller as a wheelchair (because your child can't move independently due to a medical condition) be sure to have it tagged as a wheelchair by the airline before it's gate checked.
Before Isaiah, I'd think you're crazy if you choose to drive if you're staying on Disney property. They offer free transportation (busses, monorails, ferries) that I find to be mostly efficient and convenient. But then Isaiah was born, and when I thought about Disney transportation, I thought about busses stuffed to the gills and worries of people banging into me holding him. I thought about him sitting in my lap instead of his car seat. I thought about having to fold up the stroller to get on the busses, load that and our park gear along with ourselves and Isaiah, and thinking of how we needed to take our time with things (we can no longer go our Disney speed of years past) and I was nervous.
Renting a vehicle was the best decision we could have made. Since we were staying on-site, we didn't have to pay to park anywhere. We didn't have to wait in lines for any Disney transportation unless we chose to. Since we stayed at Bay Lake (connected to the Contemporary), we were able to walk to the Magic Kingdom, leaving us to only drive to the other three parks and Downtown Disney.
If you have a handicap tag (Florida law allows temporary disability placards from all states), be sure you can use it in a rental vehicle, and if so, use it! When driving in to the parking lots for the parks, be sure to follow the blue line on the road, that will guide you to the handicap parking area. Most handicap parking areas for the three parks we drove to were very close to the park entrance and no tram car ride is needed. (I don't know anything about the MK parking experience since we didn't drive there.)
For some reason, I can't think of another word besides "quirk" when I think about Isaiah's hatred for the sun shine (yep, I know it could be because his schlera is blue is so his eyes may be ultra sensitive...no medical proof of that thus far though...so for now, I call it a quirk) . Did you know he hates the sun? If we go out, we try hard to stay in the shade (another quirk- he hates sunglasses with a passion and is only now just tolerating wearing a hat, as long as it's specifically his green Mickey Mouse hat. Oh he also hates elevators. I could tell you stories about that one.) When in the parks, we avoided the sun by walking through the shops instead of out and about...saved Isaiah's eyes, but not our wallet....
We found out that the pool at Bay Lake is in complete shade in the evenings...so we worked with Isaiah's hate for the sun by only taking him to the pool in the evenings...we'd normally go in full sun in the past, but we preferred Isaiah enjoy his time splashing, not closing his eyes avoiding the sun glaring off the water. The memories by the pool from our vacation are some of our favorite; we were doing something he loves in an environment that was comfortable for him.
When it came to the elevator issues, we made sure to hand Isaiah a toy before we hit the button for the elevator or I'd hold him for the ride. Sometimes if it was just one floor we were traveling, I'd carry him up/down and Dave would meet us with the stroller.
My point here is....if you know of something that could cause anxiety and/or unhappiness for your child, and you can easily come to a simple solution, go simple. We tried very hard to make sure Isaiah was as happy as possible in Disney World, it was his vacation after all.
When we were planning our trip to Disney World, I knew they had pack n plays available in each room. Six months before our trip, that worked for me....but then as we got closer, I got worried that a pack n play wouldn't be supportive enough for nine whole nights. Isaiah slept in a pack n play when we had night nursing, but he had his mattress pad too. He's too big to sleep on that mattress pad now....so even though I had read that they don't have cribs to use, and if they do, it's just a few, I called and asked....they put a note about medical necessity on our reservation and guess what- they had one! It was a cute tiny little thing with a Mickey sheet and was just perfect. The mattress offered Isaiah great support and he slept just as well as he does at home.
I'm sure we would have been fine with the pack n play, but having the crib was a huge relief. I'm glad we asked.
Also, on our first day in the parks, we went to Guest Relations in City Hall (we were in Magic Kingdom) and asked about a DAS pass and marking our stroller as a wheelchair. We weren't sure if Isaiah would be eligible for either but it turned out he was! DAS passes can be tough to get nowadays thanks to some stinky people in the past who took advantage and made money off of the system...Honestly, we hardly used the DAS pass, we stuck to using our Fastpasses (which anyone can and should use, you just have to sign up for them prior to your trip or at the designated spots throughout the park), which kept us out of lines, but it was nice that it was available on our magic bands if we needed it. We used it once because the people that were in line around us were just too rowdy and made us nervous...we stepped out of line and talked to a cast member about having the DAS. She gave us a return time so we walked around the shops nearby a bit until it was time to get on the ride.
Having the stroller marked as a wheelchair by Disney allowed us to bring our stroller almost anywhere we needed it- in restaurants, to shows, and through lines of rides. For example, we went through the regular Fastpass line for the Buzz Lightyear ride. Once we got to where everyone goes running for their car, we were directed down a small hallway to the exit of the ride. Once the riders exiting were cleared, we were able to get Isaiah from his stroller and walk to our car. The Cast Members always offered to slow down the moving walkways if we needed them to and gave us the space and time we needed to get into the ride safely. This was really amazing because we honestly moved much slower than the typical rider, so having the extra time to get adjusted before the bar came down or belt had to be on was a huge help to us.
More tips/experiences later this week! I have a goal of Wednesday but my attention span is lacking lately with our insurance issues, birthday prep, and well, parenting. ;-)