Traveling with Special Needs

We’ve all heard the stories of parents traveling with children on airplanes and the issues that can arise while doing so. The crying, the yelling, the bathroom breaks, the snacks, the kicking of chairs, you name it.

I would take all of that any day over what we have had to deal with when flying with Livvy each week.

It’s not just her special needs but also the COVID rules which can cause issues with the airline.

Because she is 2 years old, she is required to have her own seat. However, she cannot support her upper body so we have to hold her upright in that seat (which she doesn’t like). So, instead, we hold her on our laps during take off, in-flight and landing. Some airlines are understanding but others not so much.

Also because of her age, she is required to wear a mask on some flights. This she not only doesn’t like but also can’t understand. So we usually let her eat/drink on the plane to avoid this issue.

Another problem is that while she is 2 years old and 3 feet tall, she cannot use the bathroom like a normal child her age. She can’t walk and has to wear diapers. We have actually been told by a flight attendant to take her to the airplane’s baby changing table in the lavatory (which she does not at all fit on). So we have to lay her down on the seat between us and speed-change her diaper.

Traveling with her (or taking care of her in general) also requires two adults. One that can carry her on/off the plane and another to carry our back packs, and open/close the stroller.

It’s not an easy trip. Especially if she is screaming in pain or crying out of frustration.

I have my elevator statement to flight attendants down to a science due to the amount of times they have chastised us for her in-flight care, or needs.

“She has a terminal illness that affects her brain and she can no longer talk, walk or support her upper body.”

I genuinely feel for every parent of a special needs child that has to fly with them and explain over and over again the issues they/we face. It sucks having to repeat that out loud so many times in front of your child who can still hear and understand most of what you are saying.

The travel agency who books our weekly flights for her clinical trial does notify the airline of our situation but we still have issues.

And to top it off, seeing all the children her age walking, talking and running around the airport is like a punch to the gut. That should be her.

7 thoughts on “Traveling with Special Needs

  1. I can’t even begin to imagine what you are going through – life is hard enough for children let alone a disability in the mix – precious Livvy shouldn’t have to hear this stuff but as you well know by now some people have zero compassion- sending lots of love and prayers that this trip gives her much needed treatment love you all❤️😘❤️😘❤️

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  2. I have no words. Only love. So much love and so much respect for U and Dave. I wish this was easier in every way…. love U both. 💗

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  3. You are doing such a good job jumping over hurdles Kendra!! I can only see that the grace of God is with you. There needs to be some changes in the airlines policies, that would be a major under taking!!! Lets pray for compassion and understanding with everyone involved. Continued prayers and sending love your way

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  4. I cannot imagine how much you all are going through. You’re right, it should be her running and jumping and playing. Hopefully with all that you are doing, it WILL be her. Sending you all love.

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  5. Oh Kendra I’m so sorry, that’s so unfair. Have you ever considered bringing her car seat on board so she can be strapped in and supported (rear facing and slightly reclined)? Or is she unable to sit comfortably in a car seat? I recently found out from the Instagram account @safeintheseat that if kids have their own seat they are much more comfortable if they’re in a car seat, especially in livvy’s case since she can’t support her upper body. Just a suggestion, not sure if it’s even possible! 🙂 I know traveling on board with a car seat is a pain in the butt.

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