Traveling With A Special Needs Child — 5 Minutes for Special Needs

Traveling With A Special Needs Child

by Lee


We first traveled with our daughter Melissa when she was an infant.  That was 22 years ago when flying was a snap.  But over time her needs became more complex.  And traveling also became complicated.  We found that advance planning was necessary to ensure an enjoyable trip. Some of the things we have done include:

Identify local medical providers in the area where you are traveling.  If possible, we tried to find a local metabolic specialist (who would be able to treat Melissa if she were to have a metabolic crisis during our trip) and jot down their contact information.

Pack extra medical supplies to carry on the plane.  It can be impossible finding a replacement feeding tube or 60cc syringe in a small country town on a Sunday.  So we always brought extra.  But as we all know, carry-on luggage now comes under great scrutiny.  When we pass through the security checkpoint we are routinely pulled aside where they open our bag and we have to explain to the agent why we are carrying bags of “white powder” (Melissa’s special metabolic formula) and syringes (for her bolus tube feedings).  We also carry liquid medications—often in excess of the maximum allowed for carry-on luggage.

While we have never been refused passage, I imagine that someday it might happen.  So I recently visited the TSA web site ( which has a section that addresses Travelers with Disabilities and Medical Conditions. In part it reads:

Medications. You may bring all prescription and over-the-counter medications (liquids, gels, and aerosols) including petroleum jelly, eye drops, and saline solution for medical purposes. Additional items you may bring include:

  • Liquids including water, juice, or liquid nutrition or gels for passengers with a disability or medical condition;
  • Life-support and life-sustaining liquids such as bone marrow, blood products, and transplant organs;
  • Items used to augment the body for medical or cosmetic reasons such as mastectomy products, prosthetic breasts, bras or shells containing gels, saline solution, or other liquids; and,
  • Gels or frozen liquids needed to cool disability or medically related items used by persons with disabilities or medical conditions.

You are not limited in the amount or volume of these items you may bring in your carry-on baggage. BUT if the medically necessary items exceed 3 ounces or are not contained in a one-quart, zip-top plastic bag, you MUST declare to one of our Security Officers at the checkpoint for further inspection.

I have printed out this page and plan to have it handy in the event that we encounter a TSA agent who is not totally knowledgeable in this area.

Another aspect that we learned about travel is that we become disconnected from the medical team that we have come to value and rely upon.  At home they know our child and are available with a phone call. But what happens if you need them and you are thousands of miles away?

Recognizing that this might be an issue, we asked Melissa’s metabolic specialist to write a “treatment letter”.  The letter was intended to provide an ER physician with a general overview of her unique, rare condition as well as a “game plan” for treatment should that become necessary.  We always kept the letter with us. Then on one trip, Melissa had a metabolic crisis.  We had a great sense of security as we gave the letter to the attending doctor who proceeded to care for her!

There are many resources on the Internet that offer helpful tips regarding special needs travel.  One of the most comprehensive that I found was on the Oley Foundation web site.   Founded in 1983 by Dr. Lyn Howard and her patient Clarence “Oley” Oldenburg, the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that provides information and social support to consumers of home parenteral (IV) and enteral (tube-fed) nutrition, helping them live fuller, richer lives. At their web site they offer some excellent travel tips as well as a number of “template” travel letters that you can provide to your medical team so that you have fully documented directives for situations such as hospitalizations and IV/Tube feeding.

The best advice that I can offer dates back to my Boy Scout training—BE PREPARED.

What special preparations or tips can you share with others to help make their next trip worry-free?


Email Author    |    Website About Lee

I am the father of a 22 year old daughter with a rare metabolic disorder called Propionic Acidemia. I hope to provide a "fathers view" of special needs parenting and maybe engage and encourage other men who face a similar challenges with their special needs child. Thanks for following me.

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1 Rose-Marie January 5, 2011 at 11:44 am

This is just a really small thing, but it has saved us lots of frustration. Airplane bathrooms are soooooo tiny. If you have to assist your child either with toileting or changes, the cramped space makes changes really difficult. Before we ever get on the plane, we layer on several Pull-Ups (could work with diapers, too, I suppose) and just tear out the inner one when it gets wet (inevitable, since the aisles are pretty consistently blocked with beverage carts), leaving a clean Pull-Up on underneath. Much less hassle than struggling to pull on a replacement in such a tiny space!

2 Lee January 5, 2011 at 6:36 pm

Rose-Marie … excellent idea. You are so right about the bathrooms on the plane. Might also work in the car on really long trips! Thanks for the suggestion.

3 Michelle Howard January 5, 2011 at 2:57 pm

This is helpful information. I haven’t traveled with my son since he was 2 years old.

And I am very disappointed in what used to be my favorite airline, Delta. I was practically dropping him and my baggage trying to fold the stroller/wheelchair and no help from anyone.

4 Lee January 5, 2011 at 6:37 pm

It is so sad that customer service has become a thing of the past. We need more Good Samaritans to give us all a helping hand when we need one.

5 Michelle Howard Smith January 5, 2011 at 9:08 pm

That’s true but when you spend all that money to fly, we should EXPECT to receive better service.

6 The Best Policy January 7, 2011 at 8:22 pm

Ever since DELTA merged with NORTHWEST they have fewer cabin crew members–they’re down to FAA minimum staff levels. Don’t count on airplane staff for any help anymore on just about all the US Air Carriers–there aren’t enough of them to go around, and just barely enough to evacuate the plane or respond to a medical emergency. On the foreign carriers, particularly the ones from countries where wages are lower, you’ll get tons of pretty girls who will wait on you, but they may not know how to get that door open and that slide deployed in an emergency! It’s a six of one, half dozen of the other type situation. Of course, if we went back to government controlled airline concessions and pricing, those cheap tickets from Jet Blue and Southwest (as well as the bargain fares from the “classic” airlines) would be a thing of the past, and you’d spend probably five hundred dollars to fly, say, NYC to DC and back–and that would be the least expensive BARGAIN fare. Also, so long as fuel costs go up, prices will, too. We’re paying more at the pump, and more to fly as well.

Sometimes it helps (and sometimes it doesn’t, too) if you let the airline know ahead of time, when you buy your ticket, that you will need “assistance at the gate.”

7 staying afloat January 5, 2011 at 3:46 pm

Really good insights. Love the pull up idea too!

Label your child.

If you have a runner, or a wanderer, this is really important. Also, weird things can separate you from your kid, who may or may not be verbal. So you can get an ID bracelet, or find some other way. Make sure you include your cell phone number. And take a picture of your child with your cell phone, that day. That way, you can show it to people if you need help finding them. I also find it helpful for when I know I could get him easily if i could just remember what he was wearing.

Finally, remind yourself that while airline officials can be very helpful, sometimes they are not, and will blame you for things beyond your control. That’s their problem, not yours. Though I love the idea of printing out the TSA info.

8 Lee January 5, 2011 at 6:39 pm

Now we can see how you are “staying afloat”. Thanks for the great, timely ideas.

9 Azaera January 6, 2011 at 12:21 am

I definitely agree with the ID bracelet. My son has a medicalert bracelet with his name, medical condition and both my & my husbands cell numbers on it that we try to keep on him at all times. I haven’t taken him travelling by plane yet so I’m not sure how difficult it is. Thanks for all the great tips guys.

10 Michelle Howard Smith January 7, 2011 at 11:45 pm

Hmmm wish I could provide Delta with this excuse. They hadn’t even merged with Northwest when I had this incident. I was getting on the plane and everyone stood there just looking at me. It wasn’t even busy. I was the last one boarding.

No worries of my child wandering. He’s in a wheelchair :-(
I almost wish he would run somewhere so I could run after him!

11 Jo January 8, 2011 at 3:41 pm

Don’t assume the help you get at one airport is the same as another. In our case we need the stroller for my son:low muscle tone, probable neuromuscular condition. Walking long distances is too hard. At our destination the stroller has always been waiting for us at the door of the plane( Boy am I glad to see it) yet at our home airport it comes off with the other luggage. Still working on finding a solution to this one.

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