Many children with MPS or other special needs sometimes appear to others as just a “difficult child” instead of a child with a disability that causes certain behaviors and symptoms. This can pose quite a challenge when trying to fly because people and airlines have certain expectations. Having done a LOT of flying now with the clinical trial, there are a few tips that we thought we’d share that we’ve found to make life easier.
1. Bring your adaptive stroller and never let it go.
When your child is younger, most parents use either a regular stroller or an adaptive one such as a Special Tomato. The great thing about regular strollers is that you are used to them and how they work and they’re fairly maneuverable, but the bad thing is that because it is a regular stroller, people perceive your child as a “regular child” who is then expected to act as such and you’re expected to pack up the stroller (such as on shuttle buses and at security checkpoints) as would the parent of a typical child.
One of the benefits (if you could view MPS as having benefits) of moving up to an adaptive stroller is that it is then an “assistive device” for purposes of airlines, airports, etc. The caveat is that it may still look so much like a regular stroller that you have to stand your ground in certain situations. Although we have a more technical and comfortable stroller/wheelchair, we bring the adaptive stroller to the airport since we’d rather repair something less expensive, if it comes to that.
Handicapped stickers. First, before ever flying, pick up a few handicapped stickers for your stroller. As we’ve noted before, we notice a big difference in the “slack factor” for Case’s behavior when people can see that there is more going on than meets the eye.
Shuttle buses. Second, at shuttles (if this is needed for your child) be sure to tell the driver that you need the ramp put down so you do not have to take your child out of the stroller. With regular strollers, most buses and shuttles will not put down the ramp and will demand that you take your child out of the stroller. Even when I’ve told them we need the ramp (granted, this was without a sticker on Case’s Special Tomato jogger), they’ve told me I need to get him out and fold down the stroller. That is where you have to take the extra step and note that your child has a disability and has to stay in the stroller/chair. Often they will ask whether your child can walk, but that is not the issue (in fact, the fact that they can RUN is part of the problem). The issue is that because of your child’s disability, they need to remain in their stroller or chair. You don’t need to get into all that, but I’ve had to endure many a smirk when I’ve stood my ground that we need the ramp.
On our most recent clinical trial trip, I was flying alone with Case, 2 suitcases, and 3 carryons, and there was no way it would be safe to take him out, much less logistically possible. So when the driver insisted that I take him out, I said, “Ma’am, he has a disability.” [insert very long stare and smirk of driver] My under-breath comment was “When he becomes not disabled, I’ll gladly take him on out, but for now, we need the ramp.” Don’t think she heard me, but my point is, don’t let others’ expectations of your child create overly stressful or dangerous situations.
Tarmac flights. Sometimes you take a flight that lands on the tarmac instead of having a jetway that takes you into the airport. Normally, you must descend the stairs and then ascend again at the airport itself. If you are travelling with a gate-checked adaptive stroller or wheelchair, this can be quite difficult to then control your child and carry the stroller up the stairs. Don’t do it if you can’t. Get him or her down the stairs, pick up and open up your adaptive stroller, then ask someone to direct you to the nearest elevator or handicapped entrance to the airport. It is not a matter of theoretically if you could make it up those stairs with child under control and stroller in your arms or carried by some nice person, the question is whether that is the safest and best method for your child. If it is not at that time, make sure the airline finds a disabled entrance where your child can stay in his or her chair.
Assistive device tag. Once you arrive at the airport, be sure to request what I call a “red tag” from the airline that they use for assistive devices (at least, Southwest tags it with a red tag, not sure about other airlines). The reason you do this is because of the difference in the airline’s responsibility for strollers versus assistive devices. An airline is not liable for damage to a stroller in the baggage, gate-check, carry-on process. And if you’ve ever seen a baggage handler toss a stroller down a corrugated tube “slide” to send it down at gate-checked baggage, that should be enough to explain why you see so many cheap umbrella strollers instead of expensive Bugaboos at the airport. No one likes replacing a $500 stroller, much less a $5,000 wheelchair. As such, an airline is responsible for damage to assistive devices like adaptive strollers and wheelchairs and as expected, they are handled much more carefully. And if they aren’t, you can make a claim for damage to the airline.
Unfortunately, if you have an adaptive stroller like a Special Tomato, this is another area where you may have to stand your ground about it being an assistive device, not “just a stroller.” Because we fly so much, I usually leave the red tag on our stroller between trips so then I can just hand it to them and tell them here is the last one. Anything you can do to make it easier and more understandable (because how many of us understood anything about MPS before they lived it?) to someone makes the process easier on you and your child.
Security checkpoints. Similarly to using the shuttle, at the airport security checkpoint, do not take your child out of the stroller if that would not be wise. I have heard stories of MPS kiddos running through security, creating chaos and national incidents (well, maybe just local incidents). If the thought of that gives your heartburn, take heart, you can leave your child in their stroller. When you come to the scanner and begin putting your items in bins, get a TSA agent’s attention and inform them you need a “male or female assist” depending on the sex of your MPS child. Again, they may ask if your child can walk through the scanner. My reply is that “He can’t get out” which is true, he can’t get out without causing some serious trouble. Luckily, we now know many of the TSA agents both in Nashville and Raleigh, so they understand the deal.
So when your child stays in the stroller, they have to be pulled aside for a patdown. If your child has an issue with leaving you, make sure the TSA agent understands what is going on so they can keep you two together while you gather your items (if you are traveling alone with your child).
2. Bring food and drinks.
Many parents know the rules about not taking drinks through security and then suffer the consequences of either a screaming child who is thirsty, hungry, or angry that they don’t have their preferred items or a slap in the pocketbook from buying everything past security. You CAN take food and drink through security for your MPS child. We have a small lunchbox sized cooler with Case’s name on it, and we pack it with his zippy cup, a juice box, peanut butter and jelly sandwiches, cheese, Nutrigrain bars, yogurt, and the like. When we place our items on the scanner trays, I motion to the operator and let him know that there is food and drink in the cooler for Case. Sometimes I request the male assist at the same time to make it clear why we have it. Past the scanner, they usually let you know that they need to look in the cooler and run a test on it, but that’s no problem. If it is, you use your doctor letter (see below).
3. Bring electronics … and more electronics … as well as several non-electronic preferred items.
We generally travel with 2 iPads (Case’ school and personal one) and his video player. So when the battery dies on one, we have a backup. And when Case needs to feel control over the situation, we can offer him a choice. And when we have to shut down electronics to take off and land, we can prepare him for it ahead of time and give him something else he wants, at least until we can turn the electronics back on!
But seriously, we all know that our children have certain quirks, and the more opportunities in which we can give them choices, usually the better the result. We may look funny loaded down with four carry-ons between Case and me, but we always have everything we need.
4. Bring a doctor’s letter.
It can be helpful to travel with a letter from your child’s physician which details their diagnosis and their needs as far as remaining in a stroller, food, etc. It is best to just draft the letter yourself and either bring it or e-mail it to your child’s doctor (their pediatrician or their geneticist, whomever is easier and faster to get things from). Below is some sample text and you can also download it in Word format here.
Re: [Name of patient]
To Whom It May Concern:
I am the [pediatrician/geneticist] for the above-named patient who has been diagnosed with [insert diagnosis], a rare chronic and degenerative genetic condition. Children with this diagnosis generally suffer cognitive effects, behavioral problems, and physical symptoms. Although children with this condition may appear typical in many ways, they are often very difficult to control and [patient’s] parents know best as to what their child can and cannot handle in certain circumstances.
The parents of [patient] have requested that I explain [patient’s] needs and my recommendations with respect to airline travel. Because of the cognitive, behavioral, and physical symptoms, it is my recommendation that when [patient] is using traveling by air, [he/she] be:
Permitted to remain in [his/her] stroller or wheelchair whenever necessary such as on shuttle buses, through security checkpoints, and on the jetway in order to board the aircraft.
Offered pre-boarding and assistance with boarding.
Permitted to carry drinks and food specific to the understanding and desires of the child. Children with this condition are often limited in their food and drink selection and it would be very burdensome to be unable to bring their specific foods.
[add any additional requests]
Should you have any questions, feel free to call my office for more information at ________. I have also attached information about [patient’s] condition that you may find helpful. Thank you.