Summer Travel Tips for FX Families

One of our families here in Florida , the Hudson family, recently experienced some difficulty before a flight during the airline screening process.  Jeannette Hudson, the mother of Alex, 17, and Dr. Len Abbeduto have provided us with this list of travel tips and a sample letter to airlines. The list was Compiled on May 11, 2006 by the Project on Language Development and Fragile X Syndrome, L. Abbeduto, Director, Waisman Center , University of Wisconsin-Madison

Information for Families Who Fly with Children with Fragile X Syndrome

As you well know, some children with fragile X syndrome find taking a trip on an airplane to be challenging. In large part, it's the unpredictability of air travel (e.g., flight delays, unexpected additional security checks) that is the biggest challenge. We have learned from our families some ways to reduce the unpredictability and make air travel easier for children with fragile X syndrome. We also have talked with the people at the Transportation Security Administration to get their advice and with the staff at our local airport. We list all of our tips here for you. If you have other suggestions, let us know. We're always eager to learn from our families. You might also want to check out the “Persons with Disabilities” section on the Transportation Security Administration website (www.tsa.gov) for helpful information for your child as well as for any travel you may do on your own.

  • Talk to your child about the different phases of the trip (e.g., check in, security, the waiting room) in advance of the day of the flight. Some airports will let you visit and go through the process for practice if you contact them in advance. The TSA in Madison , for example, will arrange visits at the security checkpoint to explain how the security process works to families or groups. You can also make the sequence of events more concrete by using drawings or photos if available to help your child prepare for the trip.
  • When you make your airline reservation for your family, indicate to the airline that you will be traveling with a child who has special needs. The airline will put a code on your tickets and boarding passes. This may help to avoid unexpected events that could be upsetting to your child, such as a luggage search, an electronic “search” of your child with a metal-detecting wand, or other extra security measures.
  • Before you go, be sure you and your child are not wearing anything metallic (including shoe inserts or supports) that can cause the metal detector to alarm.
  • When you check in at the airport, remind the ticket agent that your child has special needs and may become anxious. The agent can, at your request, call ahead to the security gate to let security personnel know that you are on your way with your child and can ask that a TSA Supervisor is on hand when you arrive.
  • Even if the ticket agent calls ahead to the security checkpoint, be sure that you talk to a Supervisor or Manager when you arrive at the checkpoint. TSA recommends that you explain to the screening officers, before entering the screening area, any special needs that your child has; for example, things that make him or her uncomfortable or upset, ways to help him or her remain calm, and that he or she might not understand all of their instructions. The screening officers have certain procedures that must be done to screen each passenger, but information and assistance from you can help them to do it in a way that can be easier for your child and you.
  • If your child is under 12, and there is an alarm when he or she walks through the metal detector, it is up to the discretion of the security personnel as to whether he or she will need extra screening; however, if your child is 12 years or older and an alarm goes off, or if the airline computers have designated you or your child for additional screening, more thorough screening may be necessary. Some passengers are also chosen at random for additional screening. So, discussing this possibility with your child in advance may be helpful just in case you or your child is asked to undergo secondary screening, or if any of your items need to be searched.
  • If secondary screening becomes necessary, you can ask for a private place to have this done, you and your child can go together for the screening, and you can assist where possible to make the process easier.
  • If a ticket agent or security personnel needs more explanation about your child's special needs, you can share the attached letter with them. The letter explains a bit about fragile X syndrome and the challenges that air travel may pose for some children.
  • Be sure to bring familiar games, books, or other activities that your child likes and that will keep him or her occupied during the flight or while waiting for the flight. CD players are especially good for some kids because they can block out other distracting noises. Be aware, however, of the need to discuss in advance the fact that electronic devices will need to be off for part of the flight because some children may have a difficult time ending such an activity.

If you have any problems along the way, please feel free to call someone on the project.

 

Fragile X Syndrome and Air Travel

Letter to airport, airline staff, and screeners

 

To airline staff and airport security personnel:

This child, [CHILDS NAME], has a condition known as fragile X syndrome. This is a genetic condition. Children with fragile X syndrome can have difficulty learning and so, they may not understand all of your instructions. Additionally, they may be very anxious about meeting new people and have difficulty dealing with new situations. This anxiety may cause them to become upset as they deal with the noisy environment of the airport, the many people they encounter during air travel, and rules that they may not understand.

We ask that you rely on the child's parent for advice on how to best interact with the child. We also ask that, if possible, you not subject the child to any situations that might be stressful for him or her. Remember, the child might not understand your instructions and might be frightened if singled out in some way or if unexpected events occur. Just give the child some “space” and some time to gather his or her composure. Above all, respect the parent's wishes and advice.

These are great kids. They are not trying to be stubborn or uncooperative. They're just doing their best to deal with the anxiety and fear that may arise during air travel. Please remain calm should a problem arise and be understanding and gentle.

Thank you for your consideration.

Sincerely,

 

 

Leonard Abbeduto, Ph.D.
Professor, Department of Educational Psychology &
Associate Director for Behavioral Sciences, Waisman Center
Office: 608-263-1737

 

 
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