Make a Wish…logistics when dealing with severe disabilities

Below post written by mother (“Dream Mom”)  of teenager with severe disabilities. Her blog can be found at http://dreammom.blogspot.com
I thought this was post a great post for occupational therapists to read, about some of the struggles Dream Mom & family are facing while preparing for a Make a Wish trip. It definitely seems like an area where occupational therapists could be of help. I do know of at least one OT in Memphis who works with Make a Wish. Wow, the logistics of this are just amazing. If anybody has some thoughts, please post here and/or on her blog comments. Definitely an intriguing read. I wish them all the best of luck in making this dream a successful reality!
—————–

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 ri
ght 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.

Jul 28, 2009 | Category: Occupational Therapy | Comments: 4

Follow me on Twitter


Blog Archives


Subscribe to My OT Blog via Email

Enter your address to receive notifications of new posts by email.