Saturday, September 2, 2017

Tips on Flying With Your Disabled Child

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"Chance favors the prepared mind."

This is one of my favorite quotes. It's by scientist Louis Pasteur, and it's especially true when it comes to flying with your disabled child: The more prepared you are, the better chance you have of a smooth experience.

My 4-year-old son, who has cerebral palsy, first flew on a commercial airline at 20 months old, when my family moved from the United States to the Netherlands. In the 2 years since then, we've flown to the United States twice, to London once, and just a few weeks ago, to Munich, Germany. With several flights now under my belt, I'd like to share with you my tips for flying with a disabled child.

One Week Before Departure

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1.) Take inventory of your child's daily and emergency medications. 

Do you have enough to last the whole trip, plus a few extra days just in case? Also, is the expiration date on all of the meds at least a few days after you're scheduled to get back? If the answer to either of these is "no," then now would be a good time to order more medication. 

Are any of the medications liquid? If so, then when you get the medication, I suggest keeping the prescription bottle or box, with the label intact, to take in your carry-on as proof of your child's need for that medication. (The same goes for prescribed liquid nutrition.) You might also want to bring medical records indicating that your child takes that medication. Having brought both, I've never had a problem flying with my son's liquid epilepsy medication. I've only been asked for proof once, but I sure was glad I had it.

2.) Gather all medical documents that could be needed in case of emergency while on the trip. 

My son has food allergies, epilepsy, and hydrocephalus, all of which have the potential to land him in an emergency room. (The latter two, in fact, have.) I have a folder that has 4 clear pockets, which I use to separately store relevant allergy records, diet records, epilepsy records, and reports on brain scans. In the back, it has a sturdy zipper bag where I keep a CD of my son's brain scans. 
our medical records folder for travel, purchased at HEMA
To be honest, it took me some time to gather medical documents, figure out which ones I really needed to bring, and even get a few missing ones from his pediatrician's office. But the good thing is, I only needed to prepare this folder once, and I've now used it for multiple trips. I may need to update it periodically, but the bulk of the work has already been done.

3.) Go to the airline's website and check out their policies on bringing medical equipment on board.

If your child has special medical equipment, it's a good idea to check out the website of the airline you'll be flying to see what their policy is on flying with medical equipment. What can you take on board? What must you check at the gate?

My son has been wearing ankle-foot orthoses for the past 2 years. These have never been a problem for us. In fact, he's always been allowed to keep both his AFOs and shoes on when going through security.

A Few Days Before Departure

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1.) Print out any itineraries, reservations, and directions to any important places you'll need to get to soon after arriving at your destination.

This includes the flight itinerary, reservations for accommodations and/or a rental car, and directions to your accommodations and perhaps even a grocery store. I know from experience that it's a good idea to have print-outs of these things just in case you get to your destination and the internet isn't working. 

My son is allergic to nuts, peanuts, and sesame, which makes eating out a not-so-easy option for us. When my family went to London back in February, my plan for our first night there was to cook dinner in the apartment we'd be renting: We'd arrive at the apartment in the afternoon, search online for a nearby grocery store, and walk to the grocery store to pick up ingredients for dinner. 

Well, due to a long line for customs at the airport in London and then a delayed bus trip due to traffic, we ended up getting to the apartment much later than expected. By the time we got there, it was practically dinner time, and we soon discovered that the wifi in the apartment wasn't working. We had only a vague idea of where grocery stores and restaurants might be, so we ended up walking around until we found something and, in the meantime, eating what few snacks we had left. This was stressful. Thankfully, we found a mini-mart, and then a McDonald's that had food my son could safely eat.

It worked out okay in the end, but I'd rather not go through the unnecessary stress again. Before we flew to Munich this summer, I made sure to print out directions to a grocery store close to where we'd be staying.

2.) Plan meals and snacks.

If your child has dietary restrictions and you'll be on a long flight that serves meals, you might need to order a special meala dairy-free one, for examplefrom the airline. Depending on your airline, you may be able to place the order online, or you may need to call. In my experience, I've needed to place an order at least 24 hours in advance, but be sure to check the website of the airline you'll be flying for their policy on special meals.

Options of special meals will be limited, so you may need to bring your child's meal instead. That's what I do for my son. I've brought things like jars of baked beans, a grilled cheese sandwich I prepared in advance, chips, raisins, and bananas. It's always a good idea to bring more food than you think you'll need, including snacks.

If your child has a peanut allergy, sometimes you can notify the airline of this in advance via their website. I've done this prior to 2 international flights on Delta. However, while I appreciate that Delta made it easy for me to notify them of my son's peanut allergy, in practice it meant that after we boarded the plane, multiple flight attendants approached us and asked us questions about his peanut allergy. On the one hand, I understand their need to know what, if anything, they need to do to help prevent an allergic reaction, but on the other hand, the questions felt invasive and awkward since we were already seated on the plane and other passengers could hear us.

My husband and I no longer notify the airline of our son's peanut allergy. We simply seat our son in between the two of us; wipe down our seats, trays, and the window with baby wipes or antibacterial wipes; and eat only foods that are free of peanuts, nuts, and sesame. For us, these steps are sufficient.

3.) If you're going to a foreign country, look up that country's phone number for medical emergencies.

In other words, look up their version of the U.S.'s "911." Write it down in a place you'll remember it, or save it as a contact on your cell phone.

The Day Before Departure

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1.) Check in online for your flight, and print your boarding passes.

I highly recommend that you check in online the day before departure rather than waiting until you get to the airport. Last Christmas break my family had a bad experience: 

We were flying from the Netherlands to the United States. In the days leading up to the trip, I was frantically trying to sort out an issue concerning my family's emergency anti-seizure plan for my son, and checking in online didn't seem like a top priority. And so I didn't do it. (This was my fault.)

We got to the airport not quite 3 hours early and stood in a long, slow-moving line at the airline check-in desk. When we finally got to the desk, the lady helping us was able to check my husband and son in but not me. She said there was a problem with my ticket and that I needed to call Expedia, where I had purchased the tickets.

Long story short(er): Expedia had accidentally issued 2 tickets in my husband's name and none in mine. They were very reluctant to admit that they had made a mistake, and they didn't seem to know how to fix it. It took 11 hours (!) of me and a kindand patient!airport staff member being on and off the phone with Expedia before Expedia finally agreed to put my family up in a hotel near the airport for the night and get us a flight to the U.S. for the next day.

The moral of the story is: check in online the day before your flight. That way, if there are any problems with your tickets, you'll hopefully be able to sort them out well in advance of your flight.



2.) Pack your carry-on bag.

Items to include in your carry-on:
  • All medication (If your checked luggage gets lost, you'll rest assured that your child will still be able to get his/her medication.)
  • Proof of the need for any liquid medications
  • Any medical documents that might be needed in case of emergency
  • Any medical equipment your child needs on board
  • A child safety seat or harness for your child to use on boarde.g., an FAA-approved car seat or the FAA-approved CARES safety harness (Please note: The image below is an Amazon affiliate link, meaning that if you purchase the CARES safety harness via this link, I will receive a small percentage of the sales.)
  • Any device or pictures that your child needs in order to communicate
  • Identificatione.g., passport, driver's license, and/or residence permit card
  • Health insurance card
  • Print-outs of itineraries, reservations, and directions
  • Diapers and wipes, if your child uses them
  • Sanitizing wipes to wipe down arm rests and pull-down food trays on the plane
  • Hand sanitizer (travel size)
  • Snacks and/or mealsmake sure you pack extra!
  • Utensils and cups that your child can use (The disposable ones typically offered on flights don't work well for my child; they might not work for yours, either.)
  • Extra clothes for your childand for you! At the very least, I suggest bringing a shirt for yourself in case of spills.
  • Items that calm and/or entertain your child. Books, a coloring book, markers, an iPad, headphones, small wrapped presents (e.g., Matchbox car, yo-yo, animal figurine, small sensory ball, etc.)
  • Items that calm and/or entertain you!

Write a list of items you'll need to pack the day of the tripe.g., toothbrushes.

The Day of Departure

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1.) Pack any last-minute items.

This will include items needed the morning of the flight, such as liquid medications, toothbrushes and toothpaste, etc.

2.) Get to the airport plenty early. 

A general rule of thumb is to get to the airport at least 2 hours prior to departure for a domestic flight, or at least 3 hours for an international flight. This is a good idea for anyone, but especially for families of children with special needs. It can sometimes take longer to go through security when you have liquid medications, liquid nutrition, and/or medical equipment that the security staff needs to assess the safety of.

In my experience, I've had to open a bottle of liquid nutrition once at security for it to be tested. (I threw that one away afterwards; thankfully, I had extra bottles on hand.) As for liquid medications, those have always gone through the x-ray machine, and sometimes they've also undergone additional testing afterwards (e.g., using a special hand wand).

As I mentioned earlier, we've never had a problem going through security with my son's AFOs. But if you have any medical equipment, it's always a good idea to be prepared for the possibility of the security check taking longer, as some medical equipment may need to be checked by hand before, or instead of, going through a scanner.

Also, you want to make sure you allow time to use the bathroom before boarding; eat, if necessary; and further mentally prepare your child for the flight, if necessary.

3.) Prepare your child for a potential pat-down at security.

My son is unable to do the pose that's required in the full-body scanner: hands above head, feet spread slightly. So instead, he walks through the scanner with my husband or me, without being scanned. Sometimes that's all he's had to do, but there were a couple of times when he was patted down by a security staff member. Right before the pat-down, I knelt down in front of him and said something like, "This man is going to touch you, but it's going to be okay." Thankfully, he hasn't had a problem with it.

You know your child best, so do whatever feels right to you in terms of preparing your child for a potential pat-down.

Additional things to consider

Some airports have a designated area where services are provided for disabled people. I know this is the case at the Amsterdam Schiphol Airport. You might want to check your airport's website in advance to see if it has such an area and/or special services for people with disabilities.

Families with young children can often board first. If your child is older but would benefit from early boarding, you could always ask the flight attendants at the departure gate for your flight.


I hope these tips will help your trip with your disabled child go smoothly. You won't be able to plan everything, though, of course. Sometimes you'll just have to go with the flow.
my husband and son on our way home from Munich

Do you have additional tips on traveling with a disabled child? If so, please share them in the comments below!

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