I participate in a tradition that is almost 30 years old. It involves members of my extended family meeting at the most magical place, every 4 years, at Christmas. It started when I was a wee babe and I did not make the first trip. However, I have only missed it once since then when I was 8 1/2 months pregnant. I look forward to this, just like all of my uncles, aunts, cousins, etc. However, for the last few years I was certain that we were going to miss this trip too. How was I going to take my special needs child to the nightmare of all overstimulation, across the country, outside, during the busiest time of the year? It just didn't seem possible.
It was about July that I started to consider taking Cole. I would not even think about getting airline tickets until October, wanting to even get refundable ones. Our life is so unpredictable, flying across the country was such a risk. Let alone going to an amusement park with a kid who is sensitive to light, noise and temperature. One who gets overstimulated very easily and has new triggers for seizures that just pop up out of the blue. Yet, we went and we survived! I'll even go so far to say that we had an amazing time. But it was not without a lot of work and preparation on my part. I'll share my secrets :)*If your child uses oxygen, be certain that you have an FAA approved oxygen concentrator for your flight. You can also work with your DME company to arrange for tanks once you arrive at your destination, since the concentrators are pricey.
*Have your doctor write a letter explaining the child's diagnosis and if they are on special medications, diet, etc. Always take your emergency protocol in case you have to go to a hospital where the staff is not familiar with your child. You CAN take medications and medical liquids through TSA and on the plane. You just have to have the prescription and a letter. Believe me, don't pack all of your meds in your bags. A good friend of ours had their luggage lost and then their child had to miss a dose while they were scrambling to try and get a new prescription. The only drawback is that it takes more time waiting in the screening line because they have to screen each bottle. Totally worth it though to know that you have all of the right medications. We even take Fruit2O with us, for Cole's diet. Make sure that you go to the airport at least 2 hours early (even with the medical liquids line)! You have to undress your service dog (varies by airport) and screen all of your meds, the stroller, etc. We filled up the entire conveyer belt :) Plus, rushing is never good for kids with special needs.
*Before you go, get refills on all of your medications. If your child has rescue meds, stock up. You can usually get a new prescription every 48 hours for rescue meds. It was a lot of back and forth to the pharmacy for a couple of months, but it was worth it. I think that we could have put out an entire football team at any one time with all of the medication we had on our person. It made me feel much better to know that we were prepared and would not have to wait for paramedics. Also have up to date paper prescriptions to take with you in case something gets lost and you need a refill. Doctors are not always available at night and on the weekends to call something in for you.
*Spend time on the Disney (or other park) website. They will have information there, you just have to look for it. Here is a page that has an overview and links to answer a lot of your questions.
-Use the website to help you map out what rides are in what section of the park.
- If your child is wheelchair bound, here is a list of attractions that they can stay in their chair for. Also ones that they would need to transfer for, but has adaptations. We used some of these "transfer access vehicles" and it made things go a lot smoother.
*Look up specific rides for toddlers or in your child's age group. I found this website to be helpful. There are others out there. If your child is in to trains, map out where all of the trains are. If they like rocket ships, know where the age appropriate rides are in Tomorrowland. If they love princesses, find out where they are most likely to be seen. I made a detailed list, breaking it up into "lands" and wrote down all of the rides that I thought Cole would enjoy in that section of the park. I prioritized them, thinking about which ones he would really enjoy, in case we did not get to spend much time there. I wanted him to have as much fun as possible, so I made sure that I had a "Top Ten" list ready in case we were not able to stay. With Cole, we had no idea if we were even going to make it for an hour. I wanted to be sure that we at least did something that he would want to do in that hour. (Lucky for us, he made it the entire two days, but my list sure helped me to know what he would like in each section). We only went on two "adult" rides that Cole could not go on the entire trip. Everything else was geared towards him. Make sure that you measure your child and know how tall they are. Cole was tall enough to ride almost everything, that didn't mean that I took him on roller coasters or rides with flashing lights though :)
*After you have made your list and you know which rides your child might like, go to YouTube. Or just google the ride name + video. There are so many people out there that have just videoed the entire ride and uploaded it. If your child is overstimulated easily, or has a hard time breaking out of routine, watch the videos of the rides over and over. I did this for two months. It actually gave me a better idea of what Cole would like. This way, it was not "brand new" and he was not so overstimulated. He already had some idea of what was going to happen and he could focus more.
*TALK about it. Over and over and over. If your child has special needs, they most likely do not appreciate surprises. The more you talk about it, the more they are comfortable with the idea.
*The first thing to do when you get to the park is to go to City Hall. It is just inside the gates, to the left. You will need to stand in line and get a disability access card. You can get up to 6 people in your group to be covered by the card. This allows you to get in through the disabled line, which most rides have. You can pick up a pamphlet at City Hall that tells you if there is a separate line for a ride. It will also tell you if you just need to enter through the standard queue. Another thing you can get on this pass is a "Stroller=Wheelchair" stamp. If your child is little, or has an adaptive stroller in place of a wheelchair, this stamp allows you to take the stroller all of the way up to the ride. Otherwise, you have to park it and carry your child to the ride. This stamp saved us from Cole having to walk. The more he walks, the more tired he gets, the more his seizure threshold comes down, etc. It also let us keep the oxygen in the stroller instead of having to lug it to every ride. You can use a doctors letter to get this pass and stamp, but once they saw our service dog, no one asked me for a letter. This pass saved us a lot of time waiting in line, which was really nice because Cole really struggles with patience and standing still. He got overstimulated just waiting in the shorter lines. I know that he would not have lasted as long if we had to wait in the standard queue the entire time.
*Use the Baby Care Center. They are located here in Disneyland. They have them at Disneyworld too. It is a quiet place that you can change your child, or it even has a very small toilet for those that are potty training. It has an area where you can feed your child, away from the crowds. Great hidden gem! Cole is almost 4 and it was perfect for him to take a little break from the commotion here.
*When you are at the park, take the time to rest and take breaks in between things. This is an opportunity to sample the incredible food offered there, or just let your child wind down. Cole really liked the arcade in Tomorrowland (although I was certain it was going to cause a seizure) and would just sit and "play" the games even though we didn't pay for any of them :) The Disneyland Railroad, the Monorail or the Main Street vehicles are good ways to just take a break from walking. *Make reservations for meals. I made one for every meal. You can call and cancel with a courtesy call. Out of our 6 reservations, we only went to 2, but I knew that there was a table waiting for us and I had looked at the menus on the Disney website to see what Cole could eat there. He does not do well with "fast food" or preservatives and can not have sugar or gluten. Look at the menus and see where they offer foods to fit your child's diet. I know that there are even ketogenic families that have found options at Disney! We got fresh fruit and organic apple chips for snacks. Get reserved dining for World of Color if you are going to California Adventure. The show is a half hour long, and most people have to stand. If you get into the reserved section, they have a bench for people with disabilities. I know that Cole would not have been able to stand in a crowd for a half hour. You can also get into this section by getting fast passes. You will need to go super early though as those two benches seem to fill fast. The dining options secure you a spot on the bench.
*Really consider dining with characters. We didn't buy a single souvenir the entire trip, but a Mickey Mouse balloon. We decided that we wanted to do something that Cole might actually remember, especially since we did not know how long he would last at the park. Call Disney Dining and make reservations. Once again, the standing in line thing. You still have to wait a little, but nothing compared to others who don't have a reservation. I am so glad that we spent the extra to go to Goofy's Kitchen. When you ask Cole about the trip, THIS is what he remembers. He got one on one time with characters (which I wasn't even sure he would like) and Minnie brought him a sugar free cupcake with a candle while the staff sang Happy Birthday. He tells everyone about the candle :) I had so many "pinch me" moments, but that was a huge one that brought tears to my eyes.*Take lots of pictures. We took over 400. I just kept on handing the camera to different people in our group, wanting to get others perspectives on it. We just never know if this is going to be the only time that this can happen for Cole. It did give us confidence though that we could possibly do something like this again. If you are going on a Make A Wish Trip, the people at Give Kids The World Village will help you have an incredible time. But, if you are trying to tackle the park on your own, these are a few things that helped me. Preparation and seeing that magic smile on my little boys face.Disclaimer: This was only based on our one time experience. We didn't even know if Cole was going to be able to enjoy "the Magic". It turned out great though! Now, I have to be honest and say that I was holding my breath, waiting for the other shoe to drop the entire time we were there. I lost more than a little bit of sleep worrying about this trip. I was more than prepared to high-tail it back to the hotel or to call 911. Going anywhere with a medically fragile child is a challenge. Our lives are not simple anymore. Taking even a "normal" child on an adventure like this can be frustrating and a challenge. My advice to you-Just do your leg work and then prepare to be flexible; but enjoy every moment. Make it about your child. What do they want? What would they like? Doing this made our trip even that more magical because it was all about Cole.
*I wrote about how to take your service dog to Disney, here.