By Jayne Dixon Weber

COVID-19 Caveat: At this time masks are required for the entire travel time — in the airport and on airplanes. There are some exceptions, but it is advised to check with your airport and the airline you plan to use — at least a week ahead of time. Find out what you need to do to make sure your child’s needs are accommodated.

Also, if you plan to drive to the airport, check what and where the parking is, as many airports have changed the parking during COVID.

Flying on an airplane with your child with Fragile X syndrome (FXS) can be very stressful for both of you. These tips are provided by parents based on their experiences with their own children. You will see that what works for one child may not work for another. That is okay. Find what works for you, your child, and your family.

Thinking Ahead

  • Check to see if your airport has opportunities to visit the airport and go through security and even sit on an airplane. Check ahead on this, as some airports may only offer this opportunity 1-2 times per year. For more information, see Making the Skies Friendlier for Everyone or search for: [your airport name] wings for autism
  • Read books about traveling on an airplane.
  • Create your own book with as much detail as you can or need to for your child. Show pictures of your house, packing for the trip, the ride to the airport, getting your tickets, going through security, the gate, getting on the airplane, putting on the seat-belt, taking off, getting something to drink, playing with a toy, landing, getting your luggage, meeting people you are going to see, going to their house, and doing whatever activities you are going to do on the trip. You can use icons, drawings, photos, or pictures off the internet.* (Example: DisBoards)
  • Flying in and out of small airports is helpful.
  • If your airport does not provide opportunities to practice travel, plan to drive by the airport and visit the inside of the airport if you can.
  • Bring FXS info cards to give to people just in case. Give one to everyone you talk to.
  • Are there any museums in your town that might have “sample” airplanes you can take your child to visit?

Before You Go

  • Give your child their own little rolling suitcase — they can pack what they want, and it gives them a “job.”
  • Check to see what it takes for your family to “pre-board” — if you think that is best for your child and family. Some may want to get on last, so they are not sitting on the plane for too long.
  • One family suggested you ask for bulkhead seating — the very first row. Or get as close to the front as you can. Then you are first off the plane too. Another family suggested sitting in the very back of the plane. Your child may like the window seat; they might not.
  • Explain the rules of flying ahead of time — wear a seatbelt, electronics off/on, no kicking the seat in front of you. Make social stories — review ahead of time and bring them with you on the plane. Here is an example social story we created for COVID-19 with some resources to make your own.
  • Call your airport ahead of time.
  • Call TSA Passenger Support ahead of time to arrange special procedures.
  • Call your airline ahead of time.

The Day of the Flight

  • Wear shoes that are easy to take off and put back on while going through security.
  • If and when appropriate, let people know about your child and Fragile X syndrome. Share the FXS info cards (see above) or bring a letter from your doctor if possible.
  • If waiting is difficult, ask for an escort to get through security and ask to be the first ones on the plane, also called “pre-boarding.”
  • Befriend the flight attendant.
  • Bring a comfort item from home — blanket, pillow, stuffed animal.
  • Bring favorite snacks, especially something chewy like gummies for take-off and landing.
  • Bring a mini-DVD player with their favorite movies — use noise-canceling headphones to block engine noise.
  • Consider buying a new toy you think your child will love.
  • Figure out a way to help your child gauge how long the trip is — one movie, or whatever your child will understand.

Other

  • One comment on layovers — if you have the option, a longer layover may be better than a shorter one. Then you can get off the plane and walk around for a while versus having to stay on the airplane.
  • Consider bringing a few $5 Starbucks gift cards for those strangers who rally around you in the case of a difficult flight.
  • Please talk to your child’s doctor if you think your child’s anxiety will be too high.
  • If you are not comfortable talking about your child (and FXS) in front of your child, please look at other options, such as the NFXF awareness cards, or pulling the flight attendant aside.

Other Resources You May Find Helpful

From Airlines

author
Jayne Dixon Weber, director of community services, NFXF

Jayne Dixon Weber
Jayne is the NFXF director of community education and has been a member of the NFXF team since 2007. She has two adult children, a son with Fragile X syndrome and a daughter. Jayne is the author of Transitioning ‘Special’ Children into Elementary School, co-author of Fragile X Fred, and editor of Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.

*For your private use only, and will not be shared in print or online. All images gain copyright as soon as they’re created, and it’s your responsibility to know whether you have a legal right to use it. Learn more.