Wednesday, July 22, 2009

Make a Wish Update-First We Have to Get on the Plane...

Dear Son bowling on a school field trip last year.

Earlier this week, I recieved a call from the coordinator for Dear Son's Make a Wish trip. She was preparing to make travel arrangements for our trip later this year. I must say that the Make a Wish people have been absolutely wonderful in terms of planning this trip but I thought it might be interesting to share some of the challenges of traveling with a special needs teenager or anyone else with disabilities. If anyone has any ideas to make this process easier, I'd be thankful.

Typically, when they make arrangements for you, they get you out on the earliest plane and have you come home on a later flight so you can take maximum advantage of your trip. The first option included an 8 a.m. flight. That's pretty early when you talk about getting Dear Son fed and ready. It takes almost three hours to feed him so when I make an appointment for him, I have to plan ahead by at least five or so hours. I have to allow three for feeding, one to get him dressed and then 30 minutes to get him in/out of the car and to break down the wheelchair for transport and then another hour travel time. I asked if we might leave later in the day, say around 11 a.m. I said that if that didn't work, the earlier flight was fine.

The first challenge we had was getting Dear Son into an airplane seat. He's never flown before, which is neither here nor there, however Dad would have to transfer him from the wheelchair to an airplane seat. To do this, Dad stands in front of Dear Son's wheelchair, lifts him under the arms and drags him to the seat and sits him there. Dear Son can not weight bear at all meaning he can't stand or support himself even a little when you move him. Unfortunately, it is one of the effects of his progressive neurological disease. At home, I use a hoyer lift but we won't have one there. Well, in order to get him in the seat, Dad needs some room in front of the seat so he can move him. We had to request a first row seat in order to do that otherwise, Dad couldn't lift Dear Son into the seat. After many conversations, the coordinator ended up booking an 8 a.m. flight for us, which is fine, because it was the only one with seats left in the front row, which we needed.

The second challenge we face is getting him on the plane. When the Make a Wish volunteers were here on the initial visit, they took measurements of Dear Son's wheelchair. It turns out that this wheelchair is too wide to fit on the plane to load him into his seat. The aisles are 19 inches wide and his chair is much larger. We have a second wheelchair that Dear Son had when he was ten years old that we use on occasion for short trips. The down side is that he's outgrown the chair. While it no longer provides support for him and while we can't use it for a trip like this, I measured the width of the chair to see if we might be able to use a wheelchair provided by the airline to get him on the plane. Our chair is exactly 19 inches wide so in order for the airline wheelchair to fit on the plane, it must be smaller. I don't know that Dear Son will fit in their wheelchair to get him on the plane. We'll have to wait and see.

In addition to getting him on the plane, is the issue of his wheelchair itself. Our wheelchair vendor explained that the wheelchairs are placed with our baggage. He said often they end up stacking luggage, etc. on people's wheelchairs. He suggested that we remove the back and seat of the wheelchair to prevent them from doing this, but more importantly, so they don't get lost. Once they break down the wheelchair to load it on the plane, the seat and back can get lost. Since Dear Son needs this chair, we can't have that happen. One issue that makes things more challenging for us is that Dear Son's wheelchair has a large head support, which he needs since he can't support his head on his own. That makes using any other wheelchair, or a standard wheelchair that you find at most places, out of the question.

Next, assuming we can get him on the plane and in the seat is the issue of the bathroom. Dear Son is not toilet trained and we have to lie him down to change him. We can double diaper him and also use an insert in his diaper that we can pull out if he's wet (It's an option when you can't lie him down but only an option if he urinates and not if he has a bowel movement.). The problem is that when we feed him, he goes to the bathroom after that. I assume if I start his feeding at 1:30 a.m., he'll be done by 4 a.m., I'll give him his 6 a.m. meds and hopefully will urinate by 5 a.m. when the wheelchair van comes to pick us up to take us to the airport. Then the flight won't leave until 8 a.m. and will arrive around 11 a.m. Florida time. We'll bring pads to put on the airplane seat so that if he's wet it won't get the seat messed up. I'll have to check at the nation's busiest airport to see if they have a room where I can lie Dear Son down to change him. Some people have suggested a Texas catheter for Dear Son but I don't care for those. Plus he moves his feet and I'd hate for him to break that urine bag!

We also have the challenge of Dear Son sitting up. He normally can't sit up in a wheelchair or anywhere for more than two hours at a time. He just can't. So on the day of the trip, we'll leave our apartment at five a.m. and he'll be in his wheelchair as we travel to the airport. He'll sit there until we get on the plane and then another three hours on the plane until we arrive in Florida and then some more time sitting up until we get to the room. He won't make it. We are flying United because the Make a Wish Foundation tells us that it is the only carrier that has torso straps to support the patient during take off and landing. While Dear Son can sit between Dad and I, when he's tired, he can't support himself and he'll just slide right down off the seat and onto the floor. I'll have to check at the airport to see if there might be some place for him to lie down, even briefly.

Next is the issue of his medications. We have a LOT of them. We have two liquids, plus ten other medications. I was concered about the new security measures and taking liquids of more than three ounces on the plane. The Make a Wish Coordinator stated I'll need a note from the neurologist for security.

In addition, he has a vagus nerve stimulator implanted. I have a medical identification card for use at the airport, indicating that he has a vagus nerve stimulator, so hopefully everything will be o.k. My only concern is whether or not there might be other electronic devices that might interfere with his vagus nerve stimulator or cause an malfunctioning.

All in all, these challenges can be a bit overwhelming at times. I am excited and appreciative of everything the Make a Wish people have done for us. These challenges however are ours and do not reflect in any way on all of the hard work they have done to make this a wonderful trip for our family! The Make a Wish people have gone out of their way and are doing some things to make things much easier for us, namely helping us with supplies. They have offered and will be providing Dear Son's diapers, formula, changing pads and wipes for us at the hotel, along with a hoyer lift and wheelchair van to make things easier for us. To take all of those things with, just the supplies alone would have filled a very large suitcase and have been over the weight limit! Dear Son would have needed two cases of food, plus two to three packs of adult diapers, plus two to three packs of pads, plus two containers of wipes just for a week's time.

I am sure we'll get all of the kinks worked out with a little more thought and research. If I can get a place to change him and a place for him to lie down at the airport, we should be good to go! Overall, we are excited to have this opportunity. I have been talking to Dear Son every day about our trip. We'll get another itinerary as we get closer to the big day but for now, we are booked for our flight and ready to go.

As for Dear Son, he's had a rough summer. He's had a lot more seizures lately. I think the most recent medicine increase is working however he's sleeping a lot more and I just don't think he's looking very well. Your continued prayers for Dear Son are much appreciated.

Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.


Anonymous said...

wow, that is a lot to consider before even boarding the plane!

That is nice that MAW is providing the supplies, lift, and van -- especially since airlines charge a literal arm and leg for extra luggage, etc.

fishofdeath said...

I haven't specifically traveled to Orlando, I carry distilled water and liquid medications with me through airport security all the time. The most they've ever done is use a cotton swab to check fumes from the med bottle. I have found it can actually be a little faster through security because while the actual screening takes a little longer, a lot of airports have special lines for medical liquids and those are shorter. Good luck on your trip!

Claire said...

I've never approached MAW because I knew air travel was out of the question for mine...what do the airlines do with someone who CANNOT sit without a wheelchair?? I'd have to come up with a wish on a more local level.

Anonymous said...

You are such a wonderful mother to do all of this for your beloved child. I wish you a safe and happy trip.

Daisy said...

Your organizational skills must be so strong to figure all this out! But what an exciting adventure for your son.

Anonymous said...

I can't wait to hear how the trip goes now after all this preparation!

Am getting excited on your behalf over here in England.

Lori x

Emily said...

Is there any way MAW could get a special medical flight chartered?

Dream Mom said...

Claire/Emily-I think we can get this figured out. I need to do some checking at the airport to see if I can find a place for him to lie down and also to change him. The MAW people have been wonderful and have gone out of their way for us. I don't think we need a medical flight.

The challenges we face are separate issues from all of the wonderful things MAW is doing for us. I hope I made it clear how appreciative I am for their services. The post was just meant to raise awareness on the challenges of traveling for people with disabilities.

Thank you all again for your kind thoughts and generous wishes.

Anonymous said...

Is there any way you can change the schedule of his feedings or maybe feed less at the morning feeding, just this one time? maybe it would take less time and also help keep the diaper drier and avoid that whole issue. then you could give a larger feeding later once you are at the hotel.

Mary said...

This is going to be such a thrill for DS, and for you to see him experiencing the dream of a lifetime! There's no doubt in my mind that you two are the most deserving people to have been chosen for this extrodinary event. Though the challenges and preparations are greater than people can imagine, your love for DS will give you strength and see you through!

Poppy Q said...

Hi Dream Mom,

I am exhausted reading your post, and can't imagine what a mission this will be. We hope everything runs smoothly.

Maybe once your trip is over, you should forward this post to MAW managers. Getting you too and from your holiday is an important part of the adventure too.

What a wonderful adventure for you all.

Catherine said...

Oh, Dream mom, That is so much to have to plan. My MIL is wheelchair bound to the extent that she cannot walk to a seat on a plane. What they have is a special narrow wheelchair. You wheel DS to the door of the plane. Two men lift him out of his wheelchair into the narrow special wheelchair that the airlines have for this purpose (there are harness straps on this chair). He is then lifted onto the seat.

Another alternative may be angel flights which are corporate planes that have non traditional seating.

The diaper changing can be a problem, I know, since my kids would fill their diapers at the worst possible time. My prayers are with you for this trip.

Dream Mom said...

Catherine-I understood what they would do, my concern was that his hips would be too wide to fit into this narrow wheelchair since he can barely fit into the one we have at home. We'll just have to wait and see. Thank you for your thoughts and prayers. I appreciate it.

Angela said...

angel flights is an interesting idea...hmmm

Catherine said...

My MIL is a very large (size 3x) woman with big hips. The chair fit fine. My concern would be the support for his neck and back. If you can, view the chair--I have seen huge men put on it to board the plane.

I hope you have a wonderful time at Disney and GKTW. My son loved GKTW as much as he did the park, sometimes even more since it was less stimulating and busy. We had a wonderful time. We also took part in a "swim with the dolphins" at Sea World. The kids loved that. I think GKTW had free tickets to Sea World but we did have to pay for the Dolphin Swim which was in a cove outside of Sea World. That lagoon was very quiet and peaceful, unlike the beaches at Disney. We spent a lovely day there. Can't remember the name of it--associated with Sea World.

Take care, Dream Mom, and God Bless.

Anonymous said...

A few comments from our travel experiences:
-going through security has not been too difficult. Be sure to allow a lot of time and be patient. It takes longer. Have all of Dear Son's meds and equipt in one bag, separate from the rest. (This bag will not "count" as one of your carryons.) Have meds in their perscription containers. We travel with a lot of medical equipt too, and other than being excruciating slow at times, it's been OK. You can also take w/c tools onboard. Check out TSA's lists for medical and disability needs.

-The aisle wheelchair. My son HATES it. He feels very insecure in it. But fortunately, we just use it from the end of the jetway to the seat. He is too big for it also, but they strap him in and it works (barely). We also bought this carrier - and it has helped for transfers. But my son's dad usually prefers to do the lifting, similarly to what you've described.

-Laying down - my son just lays down at the gate. Not pretty, but it works. We arrive early enough to allow for a rest before boarding. We don't have your situation, however, of needing to do personal care lying down. There are family bathrooms at the airport, but I don't know if any have care tables.

-transporting the wheelchair. Absolutely, gate check your chair or chairs if you bring more than one. You can talk personally to the person who will load the chair. I've found them to be very helpful. Tell the ticket agent that you want to receive your chair at the arrival gate, not at baggage claim. I take electronics or any fragile components off of the wheelchair and put them in a carryon bag. Our difficulty with wheelchairs has been the unloading at the destination. We had a chair broken and it was a disaster. (The only good news with that is that the airlines will replace the chair. Doesn't help much though if you are without a chair on vacation and then for weeks and weeks waiting for the new one.)

-Also - you will be first to board and last to deplane. Makes for a long time sitting in the uncomfortable airline seat.

-You may also want to consider the earpopping issue with altitude changing. If Dear Son cannot swallow/yawn to unplug his ears, that could be very uncomfortable for him. Not sure what to do, maybe your doctor would have an idea.

The getting there will be tough, but hopefully you will have a spectacular trip!

Dream Mom said...

Thanks for all of the helpful comments! GREAT tips! I feel much better now!

Anonymous said...

A few other things I have thought of:
-Do you have an ID for your son? You'll need one.
-I imagine you've thought of this - it's good to have something to pass the time with on the plane. Familiar music and earphones work for us.
-You can bring support items for the airplane chair - lumbar support, small pillow for head, etc
-When you check in, ask that your son's seat is one which has a raisable arm rest. It makes a big difference in transferring. Usually the first rows have them. And, when you check in, the ticket agent can and will move your seats if needed for health/medical/disability reasons.
-We don't put medical supplies and meds in our checked bags when going away, even if we don't need them during transit, because we want to be sure that nothing essential is lost. It's extra hassle to take everything through security, but it ensures that you have all your necessary supplies when you arrive on vacation. On return, we do put some things in the checked bags to make going through security easier, because we know we have extra medicines, etc at home.

Have fun!

Mary said...

Hi Dream Mom! Thanks for the planter suggestion - I was thinking the same thing, so I know it must be the best choice! After reading these comments on air travel, it dawns on me how much is involved, and how much preparation it will take on your part. I'm glad you have some time to sort it all out, but I know you have the skills and drive to accomplish whatever it takes! Talk to you soon!

Dream Mom said...

Thanks, JPG. Yes, we have a state ID for him that is issued for people with disabilities. I got that two years ago. Good reminder about things to occupy him on the plane. I am sure he'll just be excited watching everyone. I'll have to figure out how to keep the ears from popping.

I plan to having all the meds etc in my carry on; don't worry, I wouldn't check those!

All in all, great tips. Thank you so much for all of your input.

Flygirl1 said...

You might want to call the airport authority themselves (not the carrier) and ask if there is a 'First Aid Room' or a 'Nurses Office' which might have a bed Dear Son could use to lay down on to give him a bit of a break from sitting. Many airports have their own EMS services and have their own offices as well.

Airlines sometimes also have a room set aside especially for unaccompanied children, but you might be able to access it to allow Dear Son to lay down on a mat or blanket on the floor if he is able to.

I'm not sure what United has available, but some airlines in the UK have supportive harnesses available. has some pictures of what they have available. Just some ideas for you.

Best wishes for an awesome trip!


Trish said...

I didn't have the same weight issues as you on the plane and it will be a long day, but you are going to be so happy once you gt there and will be able to relax and enjoy just being a family. I have a post about our trip. Can't wait to see pics... hope it's all you dreamed of!!! You deserve it!!! Visit my post:

I have to admit it though... I didn't write about all the trials on th plane (seizures, poops etc.) I didn't write details of everyday. I guess I just wanted to look back one day and know we had a fab time. There is also a video you can watch if you have a moment, it's on day April 6th at
Good Luck, you're gonna love MAW!!!

Melissa said...

Hope DS is healthy enough to take his trip soon! My DD is 8, sounds quite similar to your DS, and her trip is being granted in April. We have flown with her many times and "gate-checking" the wheelchair has never been an issue for us. Some of the time we took apart some pieces, and other times have left it intact. We've never noticed damage, dirt and thankfully no loss! It is a risk I suppose, but I can't imagine it happens very often. So far she has been light enough for us to carry to her seat and we have not yet tried the airline's transfer chair. I may try it this time just to see.
For the personal needs at the airport I would ask about a VIP lounge or First Aid office. Even an employee lounge would work if you arranged it ahead. It sure would be nice if they had something at all public places though. My DD is just barely able to stand up but it wobbly at best. We use pull-ups and when going out in public I double them up so I can quickly tear off the wet one and pull up the second clean one back on.

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