Made of Gray

10 Tips For Flying With Your Special Needs Child

Traveling w/ DisabilitesHolly D. GrayComment

Our family is gearing up for another flight to Boston in less than a month. I received so many questions last year about us flying with Caleigh. Often traveling with those who have special needs and disabilities can be tough. There is so much to think about! We've had our share of ups and downs with both airline and road trip travel. I wanted to take the time to write a few tips that have helped our family adapt and thrive while flying. 

1) TSA Cares

I'm a big fan of the TSA Cares Hotline. As soon as you have your flight details be sure to give them a call at 855-787-2227. They ask that you call at least 72 hours before your flight.

There are a lot of moving wheels to TSA so sometimes this works and other times we've been on our own. I say do it regardless if it works or not. It's in the records that you've called in case there is an issue. The first time we flew with Caleigh a TSA agent from DFW called us the night before to find out our arrival plans. When we got to the airport there was a TSA agent waiting to fast track us through security. It worked brilliantly. Each time we've been in Boston and on our way home this has never happened. So we find a TSA agent, tell them that we've contacted TSA prior to our flight, let them know that we are carrying medical liquids, that Caleigh needs a private security check and will not be getting out of her chair. They then work us in but it takes a little longer. In general, patience, humor and kindness will get you through security without an issue. 

2) CARES Child Aviation Restraint

The more we've flown the more we understand that Caleigh's gigantic Britax Pinnacle Booster Seat isn't necessary on the flight. We curbside check it and move on. Dragging it on the plane is a beating. The flight attendants will not and cannot help you install it. I could go on and on, but trust me when I say that it isn't worth the hassle. 

I found the CARES Child Aviation Restraint on Amazon cheaper than Adaptivemall.com. Although there are rules as far as weight, seat position and use that you should read on Adaptive Mall, no one even blinked an eye at us for using it. We plan on utilizing the harness for a long time to come. 

I did make one adjustment to the setup. Caleigh's neck is sensitive and most of her harnesses have padding. The restraint doesn't come with a comfy neck pad so I purchased two seat belt pads to cushion the neck area.  Other than that it is easy to setup in the plane. If your child's extension tone is strong (aka uses a pummel) you may have to adjust their position often and/or cross their legs like we did. 

 10 Tips For Flying With Your Special Needs Child via madeofgray.com

3) Don't let anyone "Breakdown or Fold" your child's wheelchair or special needs stroller

Trust me. They will ask you if it can be folded or broken down. Say no! If they don't ask when you are at the point of taking your child out of the chair and handing it off... tell them. This will require them to take the chair below the plane, but it will save you a broken chair in the long run. I know of several families that were left without a chair after someone decided they needed to make it fit. Just say no. Make sure the chair is tagged at the gate with your name. If you have a protective bag for the chair I would suggest using it, but the reality is that there is too much going on to even think about it. If you're worried about damage you might consider carrying travel insurance. 

4) Pack a separate cooler for medical liquids

This is always fun for us since we make Caleigh's jug of formula for 24 hours at a time. We have liquid medications, formula and ice packs. There are rules on ice packs and if they are significantly melted it will set off TSA's alarms. Be sure to read TSA's rules on the subject. We use an old square cooler, but I've had my eye on the Yeti Hopper. It would cut down the need for ice packs, but the cost is pretty extreme. Every time we've gone through security they have had to open her pedialyte bottles, formula and medications to swab them. Most times Caleigh's chair sets something off and they have to wipe it down and swab it too. We've all been chosen for a more thorough security check and it's one of us if not two each flight. It's kind of ridiculous to think about but again patience, humor and kindness will get you through security without an issue. 

5) Check as many bags as you can

For longer trips there is no way we can get around taking at least one piece of luggage each. One of our largest pieces is always loaded with Caleigh's heavy medical supplies. The last airport weigh-in was 90 pounds. We've always sweet talked our way to getting this overlooked. It cost a lot if it isn't something you can get passed over. So take the chance at your own risk. You can curbside check your other luggage, but anything overweight or deemed medical has to be done inside the airport. Of course for us coming home is always lighter with most of the supplies and especially bottles of pedialyte used. I recommend checking as many bags as possible. The less you are trying to take through security and cram in the airplane, the better. We generally board with the cooler, Caleigh's feeding bag, small diaper bag and our full technology backpack. The rest is checked and waiting for us when we land.

* We may try to ship some of the medical supplies ahead of us this time and I'll update with that information soon. 

 10 Tips For Flying With Your Special Needs Child via madeofgray.com

6) Choose special assistance when booking your flight and call the airline's disability assistance line

When booking your flight there should be a box that asks if you will need special assistance. Always check that box and answer any questions that pop up. For Caleigh, I usually pick the "bringing own wheelchair" and "medical conditions" options. I always call the airline about a week out from flying. I give them details, mention the medical equipment, liquids and supplies that we will be traveling with. They like to put this information in the flight manifest, so I'm told. This is also a great time to mention checking the medical supply luggage and asking for it to be free. This message never gets transferred on, but at least you talked to __________ at __________ airline about your free checked medical bag, right?

The last time we flew American Airlines we had to get "permission" to fly with Caleigh's feeding pump while it was on and running. This was over the phone. When we got there and onboard, not a soul mentioned anything about it. I chalked it up to red tape and we flew the whole time with the pump running. JetBlue has never mentioned it. Be sure to see what your airline requires. 

I'll also add here that I try to book our seats as close to the front of the plane as possible. It's just easier to get in and out without having to walk the long galley. 

7) Arrive early to the airport and the gate

The standard arrival time is generally 1 hour before your flight. We always try to be at the airport two to three hours before. There will always be something that pops up like long security lines, checked baggage drama, potty breaks and the need for caffeine before boarding. This extra time has giving us an hour to lounge before our flight to fifteen minutes of running to the gate. It varies. Once you're at the gate be sure to check in. Let them know that you will need early boarding with your child and they'll hook you up. Getting to the gate as early as possible gives us some time to stand with Caleigh, discuss the flight, look out the window and decompress. 

8) Don't forget restroom breaks and diaper changes

We've found a family restroom in every airport that we've been to. It can be a popular choice so don't be surprised if you get a knock every few minutes. There is usually a large changing table. Ewww, right? This is gross, but I always bring plastic chux pads to lay down. Fifteen minutes before pre-boarding we set Caleigh on the potty and line her pull-up or diaper with a super absorbent diaper liner (think huge feminine pad). I usually double up on the pull-up as well. The airplane restrooms are not even a choice when it comes to diaper changes or setting Caleigh on the potty. When we've had to change her I lay down a chux pad on my seat, move her over and quickly finish the change. It is what it is. Caleigh's short bowel syndrome requires 12-18 changes and/or potty breaks a day so it's bound to happen on a plane. As soon as we land we head straight for the restroom while our luggage is being brought up. 

 10 Tips For Flying With Your Special Needs Child via madeofgray.com
 10 Tips For Flying With Your Special Needs Child via madeofgray.com

9) Pack a lot of entertainment

Bring entertainment. Be it a tablet, music, movies, books, snacks, art supplies... whatever your child is into make sure you have it with you. We use earbuds for Caleigh's music and movies. This helps her ears during takeoff as well. We load up the iPad with movies, Dr. Suess and audible books and music and ask her what she wants to do next. The first flight we were ever on she was a saint. Now she knows that she'll be in a loud metal flying box for hours and she gets anxious. We unbuckle her when she needs to move and try to accommodate the wiggles as best we can. 

10) Be kind

In general we've had nothing, but nice people during all of our journeys so far. There have been a few TSA agents that were sour and strict with their position. Being kind and compliant during those moments helps the stress level for everyone. I am one to get an attitude and unleash the bear when necessary, but nearly nine years in; I've learned to pick my battles because tomorrow there will be a handful more waiting on me. I want my child to be treated like everyone else in this world and if that means wiping down her chair and checking for explosives because something set off an alarm.... then fine. Having humor when necessary tends to be my husband's job and everyone seems more relaxed when you actually speak to them. Small talk can go a long way. Flying can be stressful and no one is very excited about it. Everyone is looking forward to their destination and this is the path to get there.

Remember that your children pick up on your stress. Pop your earbuds in and jam out, listen to a podcast, a new book or watch the in-flight movie. Each flight will get easier for your family. You'll get a routine down, your kids will know what to expect and your anxiety will diminish slowly. Just know that you are giving your family experiences by traveling. By stepping out of your comfort zone and thinking about your child; you'll have memories that would never happen from the safety of your home. Best of luck and enjoy! 


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