Traveling, whether over to the next city or the next country, is a great way to share new experiences, create wonderful memories and expand your horizons with those you love. Just pack a duffel with a couple essentials, hop a plane and you’re off! Well, okay, so if you are the parent of a child with special needs it’s more like pack a dozen duffels, make 600 phone calls for arrangements six months in advance and have a book of checklists, emergency phone numbers and plan B, C and D and okay so maybe a plan E because you just never know.
Almost seems like it’d just be easier to stay home right? WRONG! There is a way to travel with your child and you should, because just like everyone else, your family wants to experience new places. Let’s be honest, though, it will take many phone calls.
So let’s start at the beginning. Where to go? A little research can go a long way here. Is there a place you have been to before and always wanted to share with your kids? A place you have always wanted to go to? Once you have identified a location think about what you want to do there. What is your family interested in? Are there activities there that fulfill what you want to do? Are they going to be accessible for the whole family? Are they within budget?
If you are successfully checking off the “yes” boxes, then we move on to how you are going to get there and where you are going to stay. There is a saying that, “getting there is half the fun.” They lied. Driving? Plan twice as many stops as you originally thought and pack plenty of aspirin and maybe a set of headphones.
Flying freak you out or is impossible? Check into the train. Train travel is probably the only time where getting there is part of the vacation. While it can take just as long as it would to drive, you do not have to pull over to give meds, change a diaper or endure the multiple bathroom breaks. Instead, you have everything you need right with you and its easy to reach and maneuver. There are far less restrictions compared to flying and you can spend the time talking about the scenery or playing board games instead of hearing another round of, “MOM the pump is beeping again!” If you have the funds, opt for a family room, accessible room or a suite where your child can lay down and you can have more privacy. Plus, when you book a room your meals are included, making for one less thing you have to worry about. Start your train travel planning at the Amtrak website.
Flying. Yes, the very word can cause even the more experienced among us to let a frustrated sigh slip. Have hope, because with a little prep you can enjoy a hassle free experience. Where to start? By calling the airline. Let them know at the time of booking that you will be traveling with a child with special needs. Let them know the nature of those needs and what they require. Often, they will waive their advance seat request fees (if applicable) for those with special needs if you let them know your child will need your constant supervision.
We recently flew and at the time of booking notified them that we would be taking an electronic feeding pump, pulse ox monitor, IV pump and an FAA approved portable O2 concentrator. They had no problem with this, they faxed us a form for the O2 that we had to send to the prescribing doctor and then send back to them. It listed the approved devices right on it. If you do not have an approved device talk to your DME about arranging one for you. Otherwise, you can rent oxygen from the airline, but be forewarned it’s expensive!
You are allowed to bring onboard anything that is required for your child’s medical needs free of charge. It does not apply to your baggage limit. We’ve brought on a small foam cooler of multiple liquid meds and bags of saline. Again, we notified them of what we were carrying on ahead of time. We also asked if we could check a bag full of medical supplies for free. I explained that I either needed to carry them since it was free to do so or would be willing to check it if they allowed it for free. Guess what? They were happy to check it for free! I packed the excess formula cans, spare tubing, backpack, stroller shade, and other items…stuff I could live without if it got lost for a day. You are also allowed to gate check strollers/wheelchairs for free, and if your car seat is FAA approved (look for a sticker on the back) you can carry that on and use it for your child. We have the Sunshine Kids Radian and it was a perfect fit and made for a more comfortable flight.
At check in you want to remind them of your child’s needs and even ask them to call ahead to the gate agents to let them know you are coming and will need extra assistance and time to board. Next is getting through security. Patience will be your keyword and a few kind words will also go a long way. Before packing, review the baggage and security tips provided on www.tsa.gov. Study this website thoroughly and follow their suggestions. Be ready for security before you even leave home. We like to have our baggies of liquids all in one tote bag along with the laptop and cell phones. It makes it really easy to just unpack that one bag quickly and repack it.
When you reach security, tell the first agent you see that you are carrying on medical items, have a child with special needs and will need special handling through security. They should direct you to the handicap or special handling line. Here, just kick back and enjoy the ride. Be nice, let them know that you understand they are just doing their jobs and ask them what they would like you to do. Try to follow their directions exactly. Depending solely on who happens to be working that day, you may get a supervisor called down who only requires everything to be X-rayed and your hands swabbed. Or you may get one doing full body pat downs, complete unpacking of your bags and testing of every bottle of liquid you have in addition to the X-raying. If you plan for plenty of time (give yourself at least 45 minutes JUST to get through security) and have a positive attitude, you will find they will treat you with respect and try to get you on your way as quickly as possible.
Once you are at the gate, remind the agent again that you will need special assistance and more time boarding. We found it worked well to have my husband take the car seat and bulk of the carry-on bags, along with our mobile daughters, on first and drop them in our seats and then come back for helping with my son. While he carried him and his equipment to the seat I folded down the stroller and grabbed the last bag or two that was left. We also found on one flight that the attendants were very happy to help our mobile children to their seats, which gave us a free hand and saved time. Upon landing, you will find you save time by just waiting for everyone else to get off first. You don’t feel rushed and often the attendants will help you more.
- Work with your DME. Often they are happy to redirect your regular shipments ahead to your destination for you, and can even help you arrange for shipping back any extra supplies you didn’t need.
- Calculate baggage fees versus shipping rates if your DME won’t ship. We actually found it was cheaper to check a large 50lb bag for $20-$25 than it was to ship it.
- Ask your insurance company if there are any DMEs in the area you are traveling to that they cover. In the event of equipment failure you’ll know who to call and don’t have to worry about cost.
- Call ahead to the hotel if you are having packages shipped. Ask who to address it to and how to pick it up on arrival.
- Speaking of hotels, make sure you call ahead to confirm they have the facilities you need. Nothing worse than arriving and finding out there is no elevator or only some rooms have fridges.
- Ask the hotel to change ALL the bedding including comforters and blankets. Most hotels only change the sheets between guests, but it is perfectly okay to request a complete bedding change, especially for medical reasons.
- Car rentals can be tricky, especially when you need a certain type of vehicle. Again, call ahead and let them know that you are requesting a certain type/size of vehicle because you are traveling with someone that has medical needs and lots of equipment. Talk to them about your needs and ask for help to pick the right size. You don’t want to arrive to an SUV to find out it’s really the size of a large car.
- Get the travel protection insurance. It’s more than just cancellation insurance, it protects you in the event of emergencies or injuries and can help get you back to your home hospital if needed. It’s usually about 5-10% of the trip cost and well worth it. For example, www.travelguard.com has a great policy that covers kids under 17 for free if the adults are covered, and also covers pre-existing conditions if purchased within 14 days of the trip deposit.
Now, this next piece of advice might sound a little biased, but if you want to save yourself hours of work, stress and multiple phone calls, contact a travel agent. Depending on the type of package booked, you may or may not pay a fee for the service. Even if you do it can be as low as $25 per trip or per person. A good travel agent will ask you a lot of questions about what your needs are, what you want to do, what your budget is and then do all the leg work for you. They will weed out the hotels that are not truly handicap friendly, the car rental companies that never have the cars they advertise, and can even handle the paperwork with the airlines, or at the very least find out the person you need to send it to. They can help you choose destinations that fit what you want and then handcraft an itinerary that fits your budget. Also, there is a myth that if you tell a travel agent your budget they will charge you your budget. That is false. We need to know your budget so we don’t quote you trips you cannot afford! Knowing what your budget is helps travel agents stay under it, and many take great care and pride in being able to come as far below that budget as possible while delivering a great experience! Speaking of budget, though, you do get what you pay for, so be honest with your agent about what your expectations are for a hotel experience, attraction quality or how important a non-stop flight is. Be prepared to pay a little more for a truly hassle-free and expectation-worthy experience.
Traveling with your children may open all your eyes to things you didn’t know about the world and even your own family. I found out on our last trip that my shy, timid, middle child is a total roller coaster junkie at five years old, and since the trip have noticed a confidence about her she didn’t have before. That is just one small example about how a trip can change your family. I hope you have many happy travels!