*** Updated September 2024 with one more tip! ***
We just got back from Disney World in Orlando – I don’t think there’s a destination in the US that could be much farther from our home in the Seattle area. While we’ve flown many times, our longest experience flying with my special needs child to date has been about 3 hours. Not able to fly direct, our flight to Orlando was almost 8 hours and included a change of planes. Not only is that a long day, but getting all of our stuff off of the plane, then going through the boarding process again – including re-installing my daughter’s car seat was daunting. Definitely not something I was looking forward to.
To complicate things further, it was just my two daughters and I; my husband was not able to join us on this trip.
Fortunately I was too tired to worry about it. Although admittedly I did have a few fleeting thoughts, like, “What am I doing? Am I insane?!” Maybe.
These tips made flying with my special needs child easier, hopefully they will help you, too:
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Check the “Special Services” box when booking your flight
Meet our new friend from Delta Airlines, he even loaded our luggage into the car Even if you don’t need a wheelchair, the airline will have someone available to help you get to the gate and on and off the flight. We’ve used this service on Delta, Southwest and Frontier airlines, all with great results. Make sure that you remind them of this service request at the ticketing counter and check in at the gate early, reminding them of your boarding needs. I always say (with a cheery laugh), “It takes a small village for us to travel – Everyone will be happier if we have extra time to pre-board.” It’s true! Nobody wants to be hit by our car seat or bags as we balance everything. On this flight my older daughter couldn’t get the car seat and our carry-ons on the plane by herself – I was carrying V. The flight attendants stowed everything for us while my daughter put in my car seat. Flight attendants have installed the car seat for me before when I flew alone with my special needs daughter.
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Reach Out to TSA in Advance
You can submit a request for assistance directly with TSA within 72 hours of your flight time, using that link or by calling (855) 787-2227. They are especially helpful if you need to fly with special medical equipment, like oxygen, there are specific rules for that. Also, consider TSA PreCheck. Here’s a link to TSA Cares for more information about their services.
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Prepare for Bathroom Breaks
Our kids all have different needs, but my child wears a diaper. 4+ hours is a long time in diaper, but changing in the bathroom on an airplane is almost impossible, so I have a few tricks to keep her comfortable. I buy diaper doublers or Poise inserts, you now those ones advertised for the geriatric set? Yep, those. The are like form-fitted, super absorbent maxi pads. And they work. I don’t don’t even care what anyone thinks when I buy them. I also put some Calazime on her bum to protect her skin. So far I have been able to find family bathrooms in every airport terminal I’ve changed planes in, they have larger changing tables. It grosses me out to think about putting my child on them, so I bring disposable bed pads to put down under her for a super quick change.
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Bring Snacks
I bring lots of snacks, lots. Crackers, cheese, carrots, protein bars – a wide variety. Nothing diverts attention like a snack and you know the airline will not provide much to keep a tummy satisfied. My oldest child was recently diagnosed with Type 1 diabetes and requires insulin and blood sugar monitoring, so I have lots of extra food that we know works well for her just in case we are stuck on the tarmack or have flight delays.
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Keep Ears from Hurting
Gum is great for keeping the ears from plugging due to altitude – my daughter loves xylitol chewing gum, so that works for us. Basically anything that makes the jaw work during take off and descent is helpful, like a pacifier or bottle. For an older child consider EarPlanes. They are like ear plugs that keep your ears from popping and hurting.
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Bring Things to Do
Bring a favorite toy or stuffed animal to comfort your child, plus a couple of books or toys. I load new stories on my daughter’s iPad, that keeps her entertained. We have these Sol Republic wireless earphones and love them! Keeping your child entertained means a better flight for everyone. I was actually able to read a book – I never have that kind of time to myself, it felt kind of luxurious…
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Check as Many Bags as Possible
Believe me, the less you are lugging around, taking through TSA and trying to board the plane with, the happier you will be. Sometimes flight attendants will gate check carry-ons for at no charge, but it’s nice to not have to wrangle anything extra through TSA, too, so the more you can check at the ticket counter or sky cap, the better IMO.
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Protect Your Stroller or Wheelchair
My daughter needs a special chair, she can’t sit in a typical wheelchair, so we take her stroller type wheelchair all the way out to the door of the plane and I fold it down. I’ve watched the baggage handlers with it and although I haven’t witnessed abuse, it doesn’t get treated as the $3,000 piece of equipment that it is. Make sure that it’s tagged with your name and contact information and if a case is available for your equipment, get it. I just bought a case for ours, but the reality is I don’t use it as often as I should, there’s just too much going on to get her on the flight and her chair packed up. Consider travel insurance that covers your chair.
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Pack Medications in Your Carry-On
You never know when your flight will be delayed, or checked bags mis-directed. Keep you meds with your carry-ons – including Advil…for you. I always need Advil after a flight.
Many airports have TSA lines for wheelchairs or special needs. Ask someone if you don’t see one; the lines are usually a lot shorter and the agents there are more experienced with special needs. You can bring liquid meds through TSA. Bring them in your prescription bottle and hand them directly to TSA and tell them that they can’t be x-rayed. They will hand check them, which sometimes means you get a pat down, no big deal. I’ve also done this with juice boxes for my daughter diagnosed with diabetes, the same goes for tube-feeding nutrition drinks and baby formula. There is also a TSA Notification card you can hand the TSA agent if that makes the conversation easier for you.
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Bring a Lightweight Blanket
A little travel blanket comes in handy, sometimes flights get chilly or it can be used as a pillow. Believe me, somebody will use it – it might be you. This packable blanket is my favorite.
One thing I’ve learned is that flying with my special needs child gets easier with every trip, we have the routine down to a science. My special needs daughter actually laughs when the engines rev up because she knows we are going someplace fun. But that’s not how our first trip went, so take heart, the more you travel the better you all get at it, and the more fun you are able to have.
Enjoy the adventure!
Disclaimer: Some of the links are affiliate Amazon links because I’m addicted to Amazon Prime.
My daughter is 16. Weighs 62 lbs and is 58 inches tall. She needs trunk support and 5 point harness as she thrust forward. Any ideas on seat safety? She has outgrown the only FAA approved car seat we can find. Help
Idk if you’ll answer but I’m hoping to travel with my MWS son in June he can’t independently sit… and I wanted to know where does the person meet you with a cart or however it’s called for the booster seat and I doubt I’ll be taking his wheelchair… we live in New York so I’m sure they handle such things with no respect
I am so sorry I missed your question! They meet you near the ticketing counter and have taken us all the way to our rental car at the destination. Happy travels!
We are flying in august this year with our child who is 7 and has cerebral palsy he has little head control and needs support. We have bought the crelling harness model 27. Our child cannot eat so needs formala on board and his feeding machine as well as his special wheelchair buggy. I hope all goes ok what ear protectors do you all advise.
My kiddo has some of the same challenges. That harness looks awesome – let me know what you think of it! If you want to share pics, I’d love to see them! Remember that medical devices, equipment, etc does not count toward your carry on. My daughter prefers headphones to cut the noise and chewing gum for the ear pressure, but I know of families that use Ear Planes and are really happy with them. Good luck, have fun and let me know about your trip! xo
Thanks for posting this! It’s helping greatly. My son is also SN, but this flight we have next month with be his first time with his breathing equipment and per FAA guidelines they must be in carry on’s. I have no clue how we are going to be able to manage everything and I’m having anxiety from it. My son has a feeding tube/pump so I have those supplies and back packs, he will have a medical stroller by then (praying its finished and delivered in time). He has a vital cough machine that’s rather large and a bipap. On top of the supplies, meds and some feeding cans, normal carry on items, toys etc to entertain him, his carseat. How will we manage all of this? If we pick for special assistance the airline has suggested calling 2 days before our flight to set this up. Will this allow for pre-boarding. Do you have any other suggestions?
Sorry Tara, I just saw this! My daughter got really sick out of state and we had to fly her home commercial with oxygen, oximeter and bipap. It looks like you have already made your trip – how did it go? I will be posting about our trip and what we learned about flying with oxygen and other medical equipment. I hope you had a great trip!
I realize this post is from 2014. I will need to travel to South FL with my 2.5yr old who cannot sit unassisted, so we will need to bring her stroller wheelchair and car seat. What sort of case did you use for your daughters wheelchair?? My daughter has a wheelchair stroller similar to your daughters. Thank you.
Anyone been to WDW recently? We have had conflicting info to have a letter from Doctor confirming special needs or handicapped and why. Also have been advised bringing his seizure alert dog will be more of pain than since we have 2 parents and 1 autistic kid. Any thoughts?
Exciting! When are you going to WDW? You don’t need a doctor’s note – they can’t legally ask for it. Stop by Guest Relations when you enter the park for a Disability Access Card – there are more details on Disney’s site. About the service dog – yes, having a service dog with you can be one more thing to take care of and manage around for rides and just getting through crowds. However, if your child has severe or frequent seizures, it may still make sense for your child’s safety. I’ll put it up on my Facebook page and see if anyone else has feedback. Have fun!
Just so you know, there is a car seat sold for $39 in wall mart, up to 40lb,aircraft approved,it is called cosco scenera
Ooh – thanks for the info, I’ll look for that!
nevermind I saw your reply to another person’s comment that answers my question
Thank you for posting this. I am traveling in the near future and I have a question about seating. It seems your child had some adaptive seating or car seat on the plane. Did you use your eeryday carseat? or is that an adaptive seat like the GoTo seat by firefly. My son is 4 years old and not walking and needs some mild assistance sitting for extended periods of time. What did you use in flight? and did it fit without major adjustments.
Hi Stacy! We travel with my daughter’s car seat – she can’t sit independently so she needs something with support on the plane. It’s a pain to travel with, but it’s the only thing that gives her enough support and then we have it for the car at our destination, so it works for us. The Firefly GoTo Seat
looks like a great solution for mild assistance, and would be easier to travel with. Other seating options that I’ve seen don’t offer as much support. Let me know what you decide and how it works for you!
I love your blog! These are great tips!!!! I’m wondering what you do for rental cars and getting all the equipment to fit in an appropriately sized car??? Help! Thx. Trying not to spend and arm and leg, but we have luggage, two adults, and a 6 yr old with a walker, wheelchair to fit in trunk or back. It’s more to rent a car in NY than to fly there:-(
Thanks! Oh man, it seems like we’ll need a trailer to take all of my daughter’s stuff, but somehow we always find a way to make it work. I always call AAA and have them help me book the rental, they tell me the best rates of all of the rental companies, what cars are available in the fleets where we’re looking and get me upgrades when they can. I’m sure they aren’t perfect, but they haven’t let me down yet! Some of the cars can come with luggage racks and child car seats installed, which can really help out. Happy travels!
Thank you so much
It was very very informative.
We’ll going to have our very first airplane trip with my daughter to Hawaii. I’m little nervous but
I agree the more you travel the better you all get at it, and the more fun you are able to have.
We too are about to fly with our daughter. She’s almost 11 now. When she was smaller the car seat worked ok on the plane. But now that we have the biggest one it really does not fit in the plane seat well at all. You have to lean the seat back or she’ll fall forward. And I just tell the flight attendants that’s the way it has to be, even for takeoff and landing. I wish we could use the cares system but she has no trunk stability and I’m afraid it’s not enough. I hear virgin airlines just came out with a new adapted seat. And some recommend this vacuum system which molds to the body.
http://www.rbfindustries.co.uk/healthcare/product.php?type=59
We are flying this summer but we are looking for a seat to use for our 8 year old w/ cp. She cannot sit up unassisted. Last year we used a large booster seat but on our return flight the stewardess told us it was not flight approved. What type of seat do we need to get? We use a huge Britax special needs seat in our van but I don’t think this will fit in an airplane seat. She weighs around 55 lbs.
We use a Safety 1st Alpha Omega car seat. It’s pretty big, and a pain to take through the airport and install, but it’s the best one that works for her and does fit in the airplane seat. My daughter’s 45 pounds and has a unique body structure, severe scoliosis, a sublexed hip and is unable to sit independantly, so although the car seat is a pain, having one that we know works for her on the flight and for the vacation makes it worth it. There is a safety harness by CARES, I’ve tried it, but it doesn’t provide the support my daughter needs, she needs a 5 point to keeping her from sliding down. It looks like the car seat that we have is pretty close to the same dimensions as yours, the Britax is a little heavier. I haven’t had any problems getting our car seat to fit, but it would be worth contacting the airline you will be flying and ask for their seat dimensions and leg room and do some measuring. I’m also going to do a little digging…
Hi,
It was so informative to read your story with tips. I am planning a trip with my daughter who is in a wheelchair and has no trunk support, we will be visiting family in Kosovo (South East Europe) and we live in California so this is a looong trip ( I am a bit scared). Waiting to get an adaptive stroller that folds since I hear that would be easier. Last time her and I did the trip she was almost 2 and looking back on it I am proud I did it but she was so little then. Now she is a big almost 6 years old and I have an almost 2 years old son that will be joining us this time ( I am buying him a leas =)). One of my challenges I am facing is sitting her upright in the airplane. We will be changing at least 3 flights and some will be small planes (the last one in Europe) . I am so homesick that I need to make this flight for the sake of my soul, I just want to make it there and back in one piece. Any advice?
Thank you =)
*leash
Hi Adriana!
I understand your issues with trunk control and sitting in the plane seats. My daughter is 14 and needs a car seat to be able to fly; it’s a challenge just getting on the plane. Changing planes 3 times with a special needs child and 2 year old in tow – you are amazing!
Can your daughter sit up at all? There is a seat harness by Kids Fly Safe Special CARES-Airplane Safety Harness that might work. It’s not enough support for my daughter, but maybe it could work for yours? What do you think?
Did you find an adaptive stroller yet? I’ve tried a couple and might be able to help with info on that if you want.
My biggest tips would be:
Pack as light as you can for carry-ons so that you have less to wrangle when you change planes, but make sure that you have all meds, including pain relievers, in your carry-ons.
Make sure that your kids have ear support to help with the pressure (Ear Planes, chewing gum, sucking a pacifier or bottle on take off and landing). The last thing you want is a little one with ear aches throughout your trip.
Use diaper extenders so your child can go longer without a diaper change. You don’t want to have to handle a diaper change at 30,000 feet if you don’t have to
Tell them when you gate check your stroller that you need it at the gate when you land so that they don’t just transfer it with the baggage.
Once you get through TSA buy some water so that you all stay hydrated, and bring some Advil for you (and your kids)! I always get a headache when I have a series of long flights.
Ooh and don’t forget to request special services from the airline to help you through TSA and to your gate. That will make your life a LOT easier.
Enjoy your time at home, blessings to you!
Karin
Great advice, Karin! I shared on our podcast FB page… perhaps you would like to come on the show and talk about flying with your special-needs child. I’m sure listeners would appreciate the information!