Search This Blog

Thursday, January 10, 2008

Mobility and Traveling with a Quadriplegic Child

This post has been a long time in coming and concerns all the things in its title. If you have been reading this blog for long you will know that Ellie is a bit of a world traveler. And when I write that I can hear us saying to her in the Aussie accent of her favorite toy – globee. “Ellie, YOU ARE A WAAAAAOOOORRRRRLLLLLDDD TTTTRRAAAAVVVVVVLLLLLLLLLLLAAAAAAAAAAAAAa!” Much to her delight. And in truth as a second generation American it took me until I was 21 to get to fly in a plane and nonetheless to Europe, on my own, from money I had saved up from many part time jobs. Ellie has been to Madrid, England, Ireland, California (she was born there) and many other places. Hardly a world traveler in a foreign news correspondent sense but she’s only just turned 5 - give her some time.

The truth is, this was the hardest trip ever. And we have used our Peg Perego stroller for the last time. It just won’t be viable by the time this summer when we go to England for her therapy at Advance. Her Kid Kart Express is too heavy and bulky and falls apart if you jostle it – so it’s not an option. I can’t imagine checking it on the plane and having it come back all in one piece. Also it would never fit in any European style car along with our cases.

We have also heard that if you bring a person on board in their wheelchair they are expected to stay in it the entire trip. God I hope that is not true as Ellie would need to stretch out after a short time sitting. If anyone in a wheelchair is reading this and has flow – please, I beg you, tell me how it works. Do you wheel on, get into your seat and then someone takes your chair? Do they leave it on the plane near you or do they check it below? What if you can’t ambulate, how do you go to the bathroom? Simple questions and I am so not joking because I need some perspective on how to transition from traveling with little baby Ellie to little long legged girl Ellie who will rapidly turn into teenage Ellie and so on if we are blessed.

One solution for to and fro airports is to get a portable stroller set up for someone with CP. Ellie’s classmate Lizzy has one and her mom brought her to Ellie’s party in it. It folds up to about the same size as the Peg Perego and is only ever so slightly heavier but offers a great deal more support. This is the stroller I am going to ask insurance for. We need it. As soon as I get the name of it I will post a picture of it in this post as well as the link to it.

Ellie’s Kid Kart Express, though it provides great support barely fits in our car and is HEAVY. I have to drop it about a foot each time getting it in and out of the car because it’s an issue of be gentle with the stroller or kill my back and my back wins every time – self preservation. This dropping it 12 inches each time takes it’s toll on it rather swiftly and I am forever tightening bolts and readjusting it.

Also traveling in the narrow confines of a plane are tough. Ellie wants to be on our lap and when the person puts their seat back there is no room, in fact it’s dangerous if they do it quick. We narrowly missed her getting clocked with a flying seat back. She will sit for a little bit in her own seat which we line with many pillows and both of us lean over to support her. And she is getting to be a much better sitter. It’s just that if the plane ever did lurch forward or experience any real jostling turbulence, Ellie would suffer like a rag doll being thrown this way and that. So we hover by her and hold her and basically are on egg shells the entire trip.

And you can’t let that guard down for one second. I did so as I was pushing her in her stroller out of the airport bathroom. As we were going by the stalls, a bathroom door stall flew open fast and I thought it hit her. She began to really cry hard. I have never felt like a worse mother. I thought it hit her in the head but there was no mark so I think it actually hit the side of the stroller. Just the same I was in tears before I realized it had probably not hit her but scared her. I felt all the breath leave me when this happened and got this sharp pain in my chest. Ellie getting hit in the head by anything even a feather is so not allowed in my realm of experience. Hasn’t she had enough head trauma for f$%&sake!

So I picked her up and carried her out of there. She was hysterically sobbing and I was trying to push the stupid Peg Perego at the same time with tears rolling down my own face and both of us were trembling. That really sucked as far as experiences go. I did think it was partly my fault however. Instant karma coming back to torment me in repayment of the fact that I gave a woman a dirty look who was using the handicap stall before us who was clearly not disabled.

Changing her in public toilets is a bit difficult as well. We usually just do it in disabled stall in the stroller itself by putting a pad down underneath her. But this obviously is not a long-term solution. Getting her walking or ambulating and potty trained are long-term solutions. We are working on the walking and its time to potty train her too. Again, I have no idea where to begin or what equipment to get. Any pointers on this will also be much appreciated. I do know she understands going potty so at least we have that to work with as a starting point. God, Ellie is going to kill me when she is older for writing any of this.

I realize that we are still caring for her in many ways as if she were a baby. It would not occur to me to sit her on the toilet since she does not do this at home. What is the transition? I probably should have potty trained her already but just and a lazy sloth of a mother. I really have no idea if we are doing any of this right. Where there are lots of rules for kids who can sit and walk and talk there are none for one that doesn’t do any of these things.

It just seems like going into the world transport system is dangerous for someone who can’t readily jump out of the way of all that surging humanity. Does this mean we just road trip it everywhere? Can’t drive to England though and I don’t fancy being on a boat with limited meds and food for her for any amount of time.

Dave and I love to travel. And Ellie did enjoy looking out the airplane window (this is the first time she has ever done that one – and very exciting for us to see). And I know she loves seeing her relatives and visiting beautiful places of the world and getting to be with Dave and me 24/7.

I really need to know with all these limitations and concerns, how do I keep the world from closing in on us?


Penny L. Richards said...

We took Jake (and his sister Nell) to Italy this summer--from California, that's two long flights each way. Jake's still under 40 lbs. (just) so he sits in a car seat on planes--that's comfortable and familiar for him, and we have a carseat carrier that goes on our backs, so one of us can wear that and still push his Convaid stroller through airports.

The Convaid Cruiser was the stroller we used all over Italy, bumpity cobblestones and all, never even lost a screw (but we really should have brought some spares, just in case). It folded fine into the trunk of our rental car. We've also got a MacLaren Major that was under $500, which would have worked too. Might make sense to buy one of those for the trip--not as expensive as losing or breaking a $3000 wheelchair overseas, anyway.

Changing, I think we did mostly at the hotel or villa rental, just once in a restaurant--but it's a good idea to bring a rolled up towel or thin blanket in case you need to do a floor change someplace. Maybe it was our imagination, but the diapers in Rome seemed better than the US equivalents.

It is a little nervewracking to travel with limited meds and other supplies. Our luggage got delayed (an Alitalia tradition), and I don't know how to ask for an Ensure equivalent in Italian--but Jake was pretty good about our makeshift replacements (bananas and gelato, mainly)--we had a few packets of instant oatmeal and a packet of instant breakfast to bulk it out a little.

We did take the metro train in and out of Naples, twice, with Jake. No problem. Probably got lucky with timing, but the trains weren't too crowded, there was room enough to stroll him around a bit when he was restless, and he enjoyed the feeling of velocity most of the time. We also took the city underground in Naples and Rome with him--that was hairier, because there were few elevators and many, many steps at the stations.... most folks got out of the way when they saw us trying to carry the Convaid-and-kid up and down.

Kathryn said...

Penny- Bravo!!! that is so great that you went to Italy. The rolled up towel is a good idea that I will commit to memory. I will check out the MaClaren too. It's true - if it the medical one gets screwed up we won't have the 3k to replace it. Gosh, Ellie hasn't sat in a car seat on planes since she was an infant. Sheesh I wonder if we should have been bringing hers along. Her car seat now weighs a ton and we generally check it with the rest of the luggage. It still won't help with the need to stretch out thing. Those must have been really long flights for you all. I am glad you trip was a success. I guess you just have to get out there and do things and make the best of it. I would pick sunny Italy any day over dreary wintery Ireland.

Penny L. Richards said...

It helped that we were traveling with family--not on the flights, but we stayed in the same hotel as the grandparents in Rome, and then 16 members of the family (ages 7-75, from five states and Hong Kong) shared a villa rental outside Sorrento--having a full kitchen and washing machine available was very nice, and having a bunch of brawny college cousins and aunts and uncles handy was also heaven for Jake. The crowd meant that we didn't have to bring both kids everywhere--Jake stayed home from very wheel-unfriendly Pompeii, Nell stayed home from the museums and churches of Naples. But both kids were always up for a daily gelato break!

This was our first "big" trip--we had to renew the passports we hadn't used since our honeymoon (a very long time ago). And the kids had to get some, of course. I think I just assumed when Jake was born that we'd never be able to travel abroad, and it took twelve years to figure out otherwise.

Anonymous said...

I've traveled with a lot of adults who use wheelchairs, so I can tell you how that goes. First of all, I've never heard of or seen it allowed for anyone to be able to sit in their wheelchair while on the plane.

Usually what we do is 'gate check' the wheelchair. This means that you can use the chair all the way to the door of the plane. Then they put the baggage tags on the chair and carry it down to cargo right from the oh, what is it called? tube-y thing that takes you to the plane. Then, you have some options. You can walk (or you could carry Ellie) on to the plane on your own. If you are slow this requires a preboard. (They all require preboard with a wheelchair anyway.) You also can usually get the bulkhead seat so you don't have to walk so far. Or you can use an isle chair. This is really like a hand truck with a little seat on it with seatbelts that strap the PWD in. The airport personnel roll it onto the plane and then transfer the PWD out of it into the seat. It is exactly the width of the rows and you tip back in it, as you would with a hand truck, so it is a bit scary. Also, don't take for granted that airport personnel KNOW how to properly handle a wheelchair, transfer a person, or appropriately strap them in. You have to be on top of this. With Ellie, you may be able to do all of this yourself now, but as she gets heavier, you may need more and more airport personnel help, so just to warn you. Tell them very, very specifically how you want things done. Wheelchair folded, kid strapped in, kid carried, transferred, etc. D often takes the wheelchair cushion off of his wheelchair and uses that on the regular airplane seat. They allow this. A car seat is also a good option. To go to the bathroom, they keep the isle chair on board, and if you need to go, they will take you using the isle chair, and then once you are in that itty bitty bathroom, you are on your own. We have never bothered to use the bathroom in the airplane, it is too hard.

For transferring planes, you can wait for them to get your actual wheelchair out of baggage and bring it up to you, but if you have a tight connection, this may not be the way to go. They will usually require that you are the last--and I mean absolute last--person who gets off the plane. They will be cleaning up and bringing in the food for the next flight before you get off the plane. So you have to usually allow for extra time between flights.

You can request an "airport assist" where a person meets you at the door of the airplane with an airport wheelchair. Then they will help push you to your next gate and isle chair and all that again. Then you just hope that your wheelchair gets appropriately transferred to your next flight.

Some airports have the little golf carts that will stop and get you rather than using a airport wheelchair. That doesn't work for us, but might work for you guys?

I will not lie to you. Flying while disabled is hard. The service you get varies from great to abysmal and is completely random sometimes. Be very, very specific and assertive and ask for what you want at each stop. For example, don't think that what you asked for at the ticket counter will mean anything at the gate. Ask again. And don't assume what you asked for at the gate will mean anything once you are inside with the flight attendants, nor at the next connection, etc. Tell each person you run into what you need as if you've never said it before.

One more thing, some airports have a "gimp holding tank." This would be more for PWD travelling alone, but just in is a room off to the side of the main gate areas with a waiting area and usually a nice gimp bathroom. Sometimes it is quiet and has TV and stuff. I'm not saying these rooms are all bad, BUT, sometimes the staff there will literally want to take your ticket from you and manhandle everything for you their way. People have been forgotten about and missed their connections due to the staff taking their ticket and then not helping them in time for their flight. So, don't ever give your ticket away. Don't ever let them tell you you can't leave until they say so. If you want to go out and check on your flight or get something to eat, do it. They think they can hold you there but they can't stop you. Since you would be travelling with Ellie, this probably won't apply to you, but just in case she travels with someone else or who is also disabled.

What else? Oh! Little tiny planes? Where you go outside to the tarmac? They can be a bit scary. They will let you take your wheelchair out to the plane. Then they either just physically manhandle you and carry you on the plane or they sometimes will have a lift that rolls up to the gate of the plane. I once knew a guy where they left him out on the tarmac on a hot day on the lift because it got stuck. He got extremely sick and ended up having to be taken to the hospital in a strange town because he was very sensitive to heat. (SCI people don't sweat). So, be careful that you are not abandoned somewhere because they will do that.

This is probably more than you wanted to know. And it probably sounds worse than it will be for you because I will tell you the truth, travelling alone as a PWD is a completely different ballgame than traveling with an able-bodied person. The able bodied person can really be a safety net and they also don't treat you like as much of an idiot when their is an able-bodied person with you. So, not that this is good, but for you travelling with Ellie, she will probably not run into much of these horror story scenerios.

Sorry, I wrote a whole post!

Anonymous said...

I don't know how viable that this is but last time we went to Avoca, I didn't take Moo's wheelchair as I was too scared about getting it lost or damaged. I used an old umbrella stroller with the wenzelite seat-to-to as the insert. Moo sat on the bus and train in the wenzelite, save for when he was sleeping. It worked well and you could do the same thing with the maclaren if it doesn't provide enough support on it's own. (have you seen that wenzelite have also put out a new seat to any type of chair).

I don't know what the answer is when it comes to toileting issues. This is going to be an issue for us too. Fortunately at the moment, Moo still fits on change tables - but only just. I really don't understand why accessible toilets don't include some sort of accessible (and clean) change facilities. . .

Anonymous said...

I've flown long haul (to Australia and back) with my family and I've also flown short haul (within this country and to Madrid and back) alone. I've flown loads of other times as well.

I had serious issues with united airlines that if i told you about would fill the rest of this page. But most other airlines have been good.

I go to the door of the plane in my chair and depending on where they sit me either use the aisle chair or simply transfer if i'm in the front seats as you can get a wheelchair that far on most planes and if you ask they let you. But I do standing transfers which means I can go from in front of the seat into the seat, can't get a wheelchair next to one.

Then I have the aisle chair for the loo (necessary on the way to Australia) or I walk with two peoples help - crew are allowed to help to and from the loo but not in there - thats only if we're literally talking a few metres. It's a tight fit but doable - I think long haul planes have disabled loos in some places though.

Something else we/I always do is first on, last off whcih gives more time. Also means that they get me my chair straight to the door of the plane so fewer transfers. And we make the crew very aware of my CP and need for help as well as how to do it. For example we will tell them "hi we should be ok but if we need the loo might just need an arm or the aisle chair" and we ask them to double check that the incoming airport does definitely know we need assistance and my chair to the gate - after waiting an hour in Greece I call that a must ask.

I've had help from check in to the plane and then from the plane to arrivals and it does mean pushing a bit and sometimes it's stupid (I was wheeling myself this summer when I flew home but had someone helping with luggage - we only had to go about 200 metres if that but they had to keep moving me to someone else because of "procedure" - ended up with three different ones). But it's worth it.

Another thing I would say is that after having stayed alone in three different hotels recently, twice in accessible rooms that I wouldn't necessarily define as such - ask specific questions about access i.e. are their grab rails, a seat in the shower or is it a bath.

I dunno how helpful that was but if you want/need to know more or my whole sorry "united really suck" story let me know.

love, Emma

Anonymous said...

It's me again.

I thought I would come back and talk a bit about some of my experiences with Potty Training kids with disabilities. (Just as long as we don't have to talk about me potty training my own kids, okay? ugh.)

Not knowing anything about Ellie's physical functioning...I'd start with that first. What kind of toilet set up could she sit on? Would it have to be raised? with handles or straps? A shower chair? A bed pan?Before I would worry about the actual voiding of urine and all that, I would try to work on what situation would work for her and see if she can practice the sitting etc. I'm going to assume, that at least in the short term or maybe much longer, she would not be able to undress and dress herself so she would need assistance anyway? If this is an incorrect assumption, then I would work on the dressing and undressing. If she will need someone to help her undress, then I would work on communication. Setting up signs (or whatever) for her to tell you when she has to go. And with that comes lots and lots of talking about potty and where it goes and where it comes out of. Anatomically correct dolls that actually pee can be really useful here.

then, if it isn't going to kill your back (and your sanity) to do this, I would "practice" the whole routine every time you change her diaper (if you can, if not, at least one or two times a day.) So, you talk about pee, show the doll peeing in whatever way Ellie would be using the toilet, do the sign for potty, say the words, get the pants down and do the transfer to whatever type of pottying set up you've got. And somewhere in there, where it makes sense, change the diaper. Can she stand up while you change her? I mean if she holds a walker or something? Sometimes that can facilitate the whole finding some place for her to lay and all that. But if you are having to need four hands to hold her up then not so good.

Anyway, I realize that I totally don't know the specifics of Ellie's situation so this is probably so not helpful at all. But just wanted to tell you that in many situations it CAN be done. Takes a loooong time, usually, but there are many toilet types of set ups that might work. I'm sure the PT/OTs at her school probably have some really good ideas.

Oh, and if she can't be potty trained, or if it just isn't practical, There are a lot of ways that quadriplegics manage their continance issues independenntly. There are adult size diapers and I have seen adults change themselves from their wheelchair by just doing some snazzy weight shifts and transfers.

I think the trick is to go for What Works Best. So many people get stuck on their kids being able to potty just like everybody else when it is never going to be practical and convenient. The goal isn't for kids with disabilities to potty train just like all the nondisabled kids. The goal is to find the healthiest, most convenient, most doable and practical way to deal with bodily waste. If that means a toilet with grab rails--great. If it means cathing--fine. If it means diapers for life--as long as it works. So don't worry about when or what she is supposed to be doing or whatever, do what works best for all of you. Its not like you really haven't potty trained her because you are lazy've all have had just a wee bit of stuff on your plate that has been higher priority.

I'll shut up and leave you alone, now. If all this comes off as assvice (I don't mean it too, but if it does) then just totally ignore me and blow me right off, k?

Tiffany and Jason said...

Hey there,

So glad you all made it back and forth safely. We miss you and love you lots!

Anonymous said...

Hi, I just wanted to let you know that we just got a Maclaren Stroller for our daughter, it folds up like an umbrella stroller. With obviously alot more support. My daugher has Rett Syndrome and is also nonambulatory - different than your situation but it might be worth checking into.
mom to Brooklyn

Anonymous said...

Hi, we have traveled quite a bit with Dustin, now age 27 , severe cp, Dustin is pretty small and even as a teenager this helped. We still fly about one a month with him, short flights. Presently the way this happens is we wheel him to the door of the plane and either my husband or myself carry him aboard, gate checking his chair . It goes into the cargo hold and brought up when we arrive. We always get to preboard and are usually the last ones off the flights.
Flying to Europe also accomplished , same way.
We used to have a large size stroller that we put a tumbleform insert in when we traveled, then his quickie chair with molded inserts that would come off...these could go into a car trunk. His new wheelchair inserts too bulky for this we now need to rent suvs.
Getting through security with Dustin has been interesting. He really gets the treatment....taking off his shoes, etc. Really searched Good thing....such a security risk he is.
Anyway, we find MOST people along the way are helpful and understanding. That and a good glass of wine for Dustin doesn't hurt.
Anne onegirlfriday

Anonymous said...

Hey everyone, what a great blog. I wanted to share something with all of you. My husband and I have been Avid traveler for a long time now. Recently (as of last June) he was in a serious car accident that could have taken his life, but has now made him disabled and wheel chair bound. But my husband is a tough, team fighter and he will never give up. Instead of throwing our dreams of traveling away, he found this book called 101 Accessible Vacations, and we get to travel the way we used to (obviously just with a wheelchair)
At first, we were kind of thinking we would never travel again, but, after this book - we'll never stop traveling.
I hope someone else will get as good use out of it as we have.
hope you can check it out if you're looking to travel.
There's also Traveling Tips located on the website that can help as well.

Take care all!

Anonymous said...

The world will not close for you - with a bit more planning there is no reason not to travel via air almost anywhere in the world. Having worked as a booking agent at a major airline (European) the biggest tip I can give you is to be honest. Many questions will be asked in order to ascertain exactly what help is needed at the gate/on board/at the airport/need for extra luggage for equipment etc. and unfortunatly they are instrusive questions most of the time - but to get what you need they must be asked. Shouting that it is no ones business will not help in any way get the right care, help and attention required. Wheelchairs only in very exceptional circumstances can be taken on board and sat in (and this would need to be arranged many days in advance as seats have to be removed and re configured to accomodate). In my experience this was only allowed if it was literally life threatening for the passenger to be removed from the chair. Obviously these passengers never travelled alone or left their chair to sit in an airline seat.
Disembarking will take ages and ages - so plan accordingly re connections - (and the less connections the better). I would allow at least double the time or even three times at certain airports, especially if immigration requirements are involved than an able bodied passenger would. A good booking agent will advise.
I think really it is all down to planning and realistic expectations. Again be polite, but of course firm in your requests and try not to loose your temper if things do not go as hoped and requested. Try always to speak with the person in charge ie the purser on the plane, the gate supervisors etc. It is their job to help - and they will given enough time. Good luck to you all - it is possible, do not give up. The world is a wonderful place, as are most of us that live in it. Happy travels to you all....

Jacolyn said...

Abe and I love to travel as well and we are hoping to take the kids to Australia (we used to live there) soon but I have so many of the questions you have.

As a side you know how many people you help? I'm sure you don't but you have been an inspiration to me. Thanks!

BusyLizzyMom said...

I will try again as I my last post disappeared in blogger space. Looking into a portable stroller may be helpful seeing Ellie is a world traveler. The McClaran is a nice option from what I hear. If they allow you maybe bringing her car seat for her to sit on in the plane may help give her more support and let you not worry about her the entire flight. I though in my web-surfing I have seen something on wheels that you can attach her car seat to to push her around.
As for toilet teaching, that is a big part of my job if you send me an e-mail with you address I can send you some literature. Ellie is doing a great job at telling you what she needs I am sure she could tell you when she needs to use the toilet. If she can stay dry for at least 2hrs then it would be worth a try. I can't even imagine how difficult it would be to try to change her in a public washroom. You could on your long travels either double diaper (poke holes in first diaper) or there are pads you can buy to place in her diaper for extra absorbency.
I can see how you feel the world is closing in on you as she grows and gets older. We are still so far behind in terms of accessibility.

Kathryn said...

Wow. I am just blown away in a "I love you all forever!" kind of way for all this GREAT information! Thank you thank you thank you ALL! This is all really helpful and I feel my heart lifting after reading it all. Dave and I just checked in and just poured over all these comments. I will now respond to each of you.

Penny - thanks for sharing your experience. How wonderful to have so much family around. We are reminded that it might be good to take people with us whether it is family or one of Ellie's carers. The more the merrier especially having extra hands. Renting your own house is also great in terms of cooking and laundry. I am so glad you guys figured how it would work for you. 12 years is a long time.

Lisa - you could never give me too much detail and I NEVER find your voice condescending - ever. You are brilliant and I am so glad you are so articulate in sharing your brilliance. Thank you for taking the time to download your huge experience in this. I am glad the Internet will contain this blog for a long time because what you wrote is definitely something to use not only in our next trip but for many years to come, especially if Ellie is ever in the position of wanting to travel on her own. Thanks so much. You totally rock! Thanks so much for all the potty training tips too. They are really helpful and you pretty much outlined a plan of action - I can't tell you how much I appreciate that. I am in such overload and pattern interrupt these days - so that really helps. I am so getting the doll as well as the right equipment. Most of all your comments about adjusting my expectations in line with Ellie's disability really hit home. She can't stand on her own right now. I really can't say if she ever will or won't. But right now she can't. So I really need to think about what the goal is. I think at least teaching her about where things come from and how it works in the body is probably the best starting point. Also, you kinda released me from feeling like a lame mom for not having potty trained her before. I have heard of other moms of kids with cp successfully potty training when their kid was 3. And good for them, but for us Ellie just has not had the strength to hold herself up at all and you are right - we have allot on our plate. Thanks so much!!!

Jacqui - I so don't even know what a Wenzilite is - but will search for it on the internet. I thought the same thing though that the MaClaren did not offer enough support. Ellie still fits in some of the pull down things - but not all. Hard to leave the baby phase where the world kind of gets what you need, isn't it?!

Emma - thanks so much for sharing your story too. Please send me an email about United in all the gory details when you get a chance. It helps to know what a worse case scenario can be. I am glad too that for the most part you have had good experiences.

Kelly - thanks for the info about the MaClaren - I checked it out on your blog. Nice blog by the way and you have a beautiful daughter!!

Anne - what is a quickie chair and I would love a link to see the inserts as well when you get a chance. It is amazing how Dustin should be such a security risk - sheesh! Thanks for sharing your story. That is allot of travel!

Chrissy - Thank you so much for the book and the website!!!!! I am glad that you and your husband are finding freedom in the world despite these new challenges. Thanks so much for sharing that the book - Dave and I will be ordering one tonight. Thank you thank you!

Carol - thanks for the reality check on the wheelchair situation and the encouragement. It's true about the communication. Ellie is so little still that often people don't really understand what is up with her. This last trip we didn't tell anyone. Or sometimes we just tell the check in person - but like Lisa was saying that in no way got back to the flight crew or gate personel. But I think you are right more communication is better than none even if it feels intrusive. It's all about getting from point a to b and accepting the fact that people will need to help us and to do so be informed. Thanks for your perspective!!!

Jacolyn - I am glad that these answers from everyone are helping you too. And you pretty much made me tear up with that last really nice bit of your comment. Thanks! ;)

Kathryn said...

BusyLizzy's Mom - I am not sure I have your email. If you send me your email to I can send you my address. Thanks so much for offering up literature on the potty training!! I will take it.

I looked on your blog for your address but could not find it. Is it in the cpmoms group site? I will take a look. Either way, thanks so much!

Anonymous said...

I am an adult wheelchair user who frequently travels and works both within the U.S. and internationally, most often alone. I think Lisa's descriptions & advice were spot-on, but I have one opinion that differs from hers. I would NEVER let yourself be transferred from plane to plane in an airport wheelchair--there is way way too much chance that your personal wheelchair will get left behind or otherwise go astray, or that it will get damaged when it gets thrown in with all the other luggage.

I'd also like to say that, vis a vis Emma's story, I've been a "premier" frequent flier on United for about 15 years and also regularly use other airlines when they're cheaper or United doesn't go where I'm going. I've had a couple of big disasters with United and many minor run-ins, but I truly don't find them any worse than any other airline. I expect a wheelchair-related mess about 10%of the time when I fly, on any US, European, or Australian carrier, and haven't noticed a big difference between them. (I expect a nontrivial problem about 25% of the time on developing-world carriers in the developing world.)

Travel with a disability is another of those cloud-with-silver-lining experiences, in my opinion. Of course, one gets all the excitement and enrichment and discomfort of contact with new cultures, people, etc that anyone gets... plus more hassles along with often more contact with people from the culture than most travelers, shared problem-solving, and a window into how people think about disability/ability/health/etc. You have more friction in your interpersonal exchanges than most people would and also benefit from unusal kindness and sympathy. Things take longer, so you do less, but there are more unexpected and interesting adventures. Sometimes you are doubly a foreigner, sometimes you have an amazing point of connection with local members of the international tribe of disabled people. It's a mixed bag, but often can be richer than what many nondisabled people experience, in my opinion.


Anonymous said...

Hello! this is a fantastic blog. I am considering taking my 13 year old son on a plane trip of some kind. id like to try a direct flight here in the US probably to some vacation spot with family. Mostly to see if we can open up our world a bit. I have traveled with him quite a bit by car but we live in the midwest and its a lot of hours to get anywhere. My question is has anyone ever flown with medical equipment and can they share some details of that. He has a large manual chair which could be gate checked. I can hold him on my lap if they would let me or maybe he could be in his own seat if my husband and I were on either side to support him. He needs his suction machine and an ambu bag with him on the plane. we would need to check through an oxygen concentrator humidity machine and compressor food pump and pulsoximentor. I would want to bring his meds on the plane with me. i guess the food with a question too. would they let me bring the food and pump on the plane? would I check all the other bulky stuff he needs, food, diapers, trach ties, gauze etc or try to ship them ahead of time? any thoughts would be helpful. I am interested in United. My husbands company uses them for work and he is a super mega frequent flyer with them. in general how are people making these arrangements? do you contact the airlines directly?

Manish Batra said...

I would like to say that this blog really convinced me, you give me best information! Thanks, very good post.
Adult Wheelchair

Unknown said...

He needs his suction machine and an ambu bag with him on the plane. we would need to check through an oxygen concentrator humidity machine and compressor food pump and pulsoximentor. I would want to bring his meds on the plane with me.

Outstation Taxi booking