Traveling with a Special Needs Child

Welp! We just completed our first trip that included air travel with Maddie girl! John and I debated cancelling this trip many times. Would the stress of traveling with Madison actually outweigh the point of a “relaxing” vacation? We were nervous my friends. VERY nervous. But it went fine! While I will divulge all of the details of our first family vacation in another post (as it was not without some bumps in the road), I wanted to share some travel tips when flying or going a long distance with a child, especially a special needs one! So here we go!

Medications/Medical Needs

Madison takes various medications in both pill and liquid form, everyday. We also have an emergency injectable med for her hypopituitarism. Liquid medications are excluded from the TSA’s 3-1-1 rule. In fact, all medications are allowed in “reasonable quantities” for the duration of your trip, but must be screened by the TSA. Some states have laws requiring that medications include the prescription label, so when traveling be sure to check whether or not that is the case. I keep all of Maddie’s meds in their original bottles so that was a non-issue for me! In addition, any medical accessories such as ice or gel packs or syringes are also allowed, as long as they are declared along with the meds.

To make things easy I put all of Madison’s medications and medical accessories into one bag and informed the TSA agent upon arrival that everything inside was a medical necessity. The bag was x-rayed and then a few meds went through some further testing by an agent. The process was quick and smooth & took only a few more minutes than it normally would have taken us! Keeping all medications and medical related items together is key to not getting held up! Below are the bags I used. Because one of Madison’s meds needs to be refrigerated I bought a small insulated bag to include in the larger med bag and it worked out great!


I also got letters from Madison’s doctors outlining her medical needs just in case we had any trouble. I recommend doing this especially if you have a special emergency protocol for your child, which we do with Madison’s hypopituitarism issues. You can also call the TSA Cares line at 855-787-2227 if you’d like a supervisor or Care Agent to assist you during screening. We felt confident going through the process on our own, but if Madison requires more care in the future, it might be beneficial to utilize! I did speak to a Care Agent before traveling to outline her needs, and the types of meds we were traveling with to ensure I was packing everything correctly.

Lastly, before leaving I researched the closest hospital and children’s hospital to where we would be staying. Of course you hope nothing happens during a short week away, but God forbid it did I wanted to ensure we would know exactly where we could take Madison for the fastest treatment. In asking Madison’s doctors for medical letters, I obviously also let them know our travel plans to ensure they didn’t have any concerns.

Bottles & Baby Food

Similar to medications, formula, breast milk, and juice are allowed on a plane in reasonable quantities for an infant or toddler. Again, you should tell the agent before the screening begins that you are carrying these items. To make things easy I also kept Madison’s food and milk for the plane ride together. These were tested along with her meds, and we had no issues carrying them aboard either!

It’s recommended to nurse or feed your baby during take off since the swallowing will help alleviate their ears from popping. Because Madison is still taking her time getting on the bottle, we knew this would be pretty impossible, but I was able to feed her breakfast on the flight instead. To make eating easy on the go I bought her those puréed pouches. She usually has a bowl of oatmeal and side of fruit in the morning but that would be ridiculous to make on the plane. A pouch of puréed fruit and oats was both quick and clean! If her ears did pop she seemed unbothered, but you can also purchase noise canceling headphones to help as well!

Packing

Obviously when it comes to packing for a child it’s hard to not bring everything. I used to travel with an entire suitcase or more for myself, now I’m lucky if I remember a few actual outfits because all of my focus goes into not forgetting anything she might need. Will she be hot or cold? Will it rain? Will she need a hat? What if she spits up all over every outfit or has a major blow out? You just never know with kids! So while it’s hard to not over-pack for a little one, I did figure out how to leave a few things at home!

Now, this might not work if you’re traveling out of the country, but since we were only going to Florida and would have a rental car, I decided not to pack baby food/drinks for the week, diapers, or wipes and opted to stop at the grocery store upon arrival to pick up those things. This saved us space in our suitcases, and I was able to just buy what we would need for the week once we got there. Not all grocery stores carry the same brands, so keep that in mind if you use something very specific.

We also purchased a car seat and stroller bag which I highly recommend! The car seat bag allowed us (well my husband lol) to wear it on his back and keep his hands free for the million other bags we were traveling with. We flew Southwest which allows you to check both a car seat and stroller for free, so once we checked the car seat we knew it would be “safe” inside the travel bag. We kept the stroller with us in the air port since Madison could relax in it and we could use the storage for bags. Keep in mind you can check the stroller at the gate, but it will have to go through the X-ray checkpoint upon arrival.


Before boarding the plane we folded up the stroller and placed it inside the travel bag so that it wouldn’t just get tossed onto the plane at the gate. We were also able to sneak our beach tent into the bag and were able to bring that to Florida with us without paying to check it. Winning! Once we packed up the stroller I moved Madison into my Boba Baby Wrap Carrier and boarded the plane by wearing her. This kept my hands free to carry bags and kept her close to me and away from all the other germ infested passengers lol.

Now let’s talk about germs for just a minute! Air ports and planes are full of them! John himself often gets sick after traveling so this is something we were super concerned with for Madison. Germs might just mean a cold to you, but to us it could be a hospital stay, oxygen, even death. We don’t take it lightly, especially during flu season. So we bought baby face masks for her to wear in the air port and on the plane. Yes, we may have been “those people” to everyone else, but we didn’t care. Better safe than sorry when it comes to Maddie’s health. Southwest doesn’t have assigned seating which was beneficial to us on this trip because we opted to sit in the very back row, away from most passengers and giving us more privacy since it was likely that Madison would have a seizure on the plane.

Excursions

Upon arriving to Florida we had limited expectations as to how often we’d be able to actually dine out or do things. I won’t get into everything we did do in this post, but as a general tip I recommend planning early dinners and dinners outside when possible.

By going to dinner on the earlier side, restaurants are less crowded and it’s easier to get in and out in a timely fashion. Because Madison has seizures, we try to limit taking her to nice places where an outburst could really be obvious. Is that fair? Maybe not. Should we be so concerned with what other people think when she has a seizure? Absolutely not. And maybe one day we won’t. But for now it’s more stress on us to calm her down in a crowded restaurant. Going to dinner early makes it a little easier to tackle.

If your traveling somewhere with warm weather, I also recommend eating outside. Like a lot of special needs kids, Madison can’t sit on her own yet- so a restaurant high chair is out of the question. She needs more back support. Therefore, we typically opt to keep her in her stroller. Dining outside allows for more room to keep the stroller in use without getting in the way of other tables or waiters. It also makes it easy to walk away from the table with her if she needs to be calmed down or has a particular long and loud seizure.

Even though our anxiety was high to travel, and even though it may have looked like we were leaving home for a month with the amount of bags we had, the trip went smoothly and I’d say, we’d do it again! It’s definitely stressful traveling with kids, especially one with special needs, but I fully believe that we can’t let Madison’s many diagnoses completely stop us from living. There are a lot of things that are hard for us to do, and a lot of things we know we won’t ever feel comfortable doing with her, but I’m glad we took the chance at traveling a few hours away by plane.

It can definitely be hard to step outside your comfort zone when you have a special needs child. I know what sort of routines are “safe” for us, and traveling is not one of them. I hope we’ll continue to get more confident in doing things with her and this trip was definitely a big step in that direction. Have you traveled with kids or a special needs child? Any other tips? Drop me a comment & let me know! And stay tuned for my next post talking all the good and bad of our trip!

Happy travels!

Xo,

Kelly

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