Accessible Travel
The adventures and disappointments of traveling with a disabled child
I neglected rubysoup while I was away on vacation and am feeling bad about that. It was a very busy trip…would have been busy for any family, but add the challenges of traveling with a disabled child and it was crazy. Funny thing is, we vacation to rest and relax but find ourselves facing more stress and challenge than normal being away from home and all the things we need to make our lives easier. I often wonder if, in the long run, it’s worth the effort?
One thing I do know is that all my kids enjoy traveling and exploring. My husband and I do all that we possibly can to make sure our vacations are fun and stress-free for them. I wonder at what point in life you begin making that effort for yourselves? My children are still young and it’s important for them to have fun and experience the carefree nature of vacation. I guess the grown-up version will have to wait a while.
As usual, the best laid plans often fall to pieces. Since we chose to fly and use a rental car we knew we would add complication to our travels. Not having the ramp van would be challenging and in order for things to work we had to rent a vehicle we knew we could lift Quincy in and out. We could have rented an accessible van, but the irony is they are excessively expensive and we were on a budget. Anyway, we arranged to rent a Tahoe, which we knew from experience would have enough space for the three kids, all of Quincy’s equipment and supplies and was manageable for lifting her in and out of. Problem was, what we reserved and what we got weren’t the same. We got an SUV that was smaller with barely enough room for all our gear. Additionally, it was a clunker and all the warning lights started flashing about 100 miles into our drive. Finally, to cap it off, the rear liftgate broke and couldn’t be opened so we had to load and unload wheelchairs and gear out the side doors. This was a ridiculous amount of work! We finally pulled the plug halfway through our trip, changed our plans, returned to Seattle and gave the car back. Thankfully, the rental company was horrified and slashed our bill down so much we almost got the vehicle for free.
This put a real damper on our plan for Disneyland. We realized we had planned things that we simply couldn’t do. It was hot, we didn’t have a vehicle and we were tired. We were depressed that we had lost the ability to do what we wanted to do and were being forced to make plans based on what we physically able to do. Anyway, my husband and Quincy flew home…back to the quiet of Alaska and where all of Quincy’s equipment was that makes life easy with her. I took the two younger kids to Disneyland on my own. It was bittersweet. It was fun to share that experience with them but sad that their father couldn’t be a part of it. I did learn immediately that Quincy would not have enjoyed Disneyland in July. It was hot, crowded, and busy and there was little she could have seen or done with the crowds like they were. If Disneyland is something she should see, we need to take her in the off-season. It would have been a disaster to take her even if we had been able to.
So, we live and learn. Living with Quincy is a daily learning experience, that we know. We have learned to assess challenges and accept those that we know are just too big for us to overcome. We have matured in that way. We used to push through anything and be unwilling to accept our limitations. We know better and know that for our own peace of mind and physical health, as well as Quincy’s, there are things that we are better off just not tackling. No apologies, no excuses, no guilt…we will do what we can and if it becomes too hard, too difficult, too stressful, we have learned to let it go.
The two weeks we spent together on vacation were a blast. The week we spent apart was done simply for the benefit of our children. All my children were happy and fulfilled. As parents, we did the best we could to make our kids happy and I know we succeeded. I also know it is damn good to be home…maybe now I can get some rest!!
Airline travel with a child who needs mobility assistance
Well, last week we did the one thing that my husband and I dread the most…we traveled with Quincy on an airplane. We found it to be slightly more economical this year to fly to Seattle and use a rental car for our travels than to make the long drive from Alaska. The flight to Seattle is only three hours from Anchorage, but if you travel much by air you know that a million and one things can happen that can easily double travel time.
I am happy to report that this was the smoothest, easiest travel experience we have had with air travel in quite some time. First, since I rack up so many air miles flying to Washington, DC my MVP status on Alaska Airlines allows my guests and I to check our baggage for no fees. This was pretty significant since we checked six bags including a wheelchair and an adult car seat that were both oversized.
Security went as smoothly as it could. Since Quincy cannot get out of her wheelchair they must take her into a separate area and search her by hand. We have found TSA to be extremely sensitive about this process and are always very gentle and handle the search with dignity. They are also good about allowing either my husband or myself to be present for this process so Quincy isn’t nervous.
My other two children at ages that make them quite self-sufficient on planes. They sat together, ordered their own drinks and meals, and watched movies on their iPods. This is the first time that one of them hasn’t need a parent to assist them which allowed my husband and I the ability to sandwich Quincy between us and work as a team to take care of her needs. She really didn’t need anything. We booked the flight at a time that wouldn’t require a meal for her so other than drinks of water or Pediasure she didn’t need much. Since we cannot change her on the airplane we used a diaper with a extra-absorbent pad inside plus another diaper over that to avoid any leaks or accidents and this worked perfectly.
The uncontrollable factors this time just worked out well for us, too, and I guess I just have Fate to thank for that. The flight crew was incredibly kind and patient. They allowed us to board almost 15 minutes early, they assisted with an aisle wheelchair which made getting in and out of the her assigned seat easy, and they were just very kind to all of us. Also, our bags did not get lost and were, in fact, the first ones off the plane. Finally, our transportation was ready and waiting when we had our bags so we were whisked to our hotel in record time. Overall, it was as nice as it could have possibly have been.
Being less than an optimist, I take that to mean that I should be prepared for all kinds of difficulty on our return trip home. But, I have two more weeks before I worry about that, so for now I will enjoy the sunshine and adventures of our vacation and worry about that another day.
Rubysoup goes on vacation!
I thought I would be able to keep up a regular writing schedule while being organizing and packing for my family of five to go on a three-week vacation. Obviously, I misjudged my ability to juggle multiple tasks. Also, I seem to forget just how difficult it is to prepare to travel with Quincy for an extended period of time. It just takes a great deal of pre-planning and excellent organizational skills.
We leave tomorrow. We are flying…yet another piece to the puzzle that causes me great stress and additional preparation. But, the upside is that in three short hours of flying time we will be in Seattle, and that beats seven days of driving.
I will do my best to write while we travel…to share with you our struggles and our fun. But, I am heading out on a much needed vacation and will probably not write as often as I usually do. We will be gone until early August and I will certainly be back on a regular routine after that.
Thanks for your patience with me. I hope you are all having a wonderful summer and enjoying your own rest and relaxation with your families. One thing I have learned is the importance of taking time to play and get away from all the stresses and worries of everyday life. So, I wish you all fabulous weather and lots of fun…I will be in touch as I find time.
Alaska SeaLife Center–great sensory input experience for the developmentally disabled
On any of our visits to Seward, we must take Quincy to the Alaska SeaLife Center. It is an amazing experience for people of all abilities, but for Quincy it is truly unique. She is simply captivated by watching the fish, otters and sea lions from the large, underground glass tanks. We can sit for hours in front of Woody, the giant male sea lion and watch him swim graceful arcs past Quincy in his tank.
Aquariums and hands-on learning centers are great places for children with disabilities to experience. Most of these places encourage children to touch and feel and smell and, for children like Quincy, the sensory input is powerful. Plus, aquatic centers have a wonderful sense of calm about them, which is something else that Q is drawn to. There is a serene, almost hypnotic, feeling that comes from sitting in front of a tank of beautiful fish.
We usually walk to the SeaLife Center so we use our large jog stroller for Quincy. She is very comfortable in it and the facility is large enough for maneuver easily with the larger stroller. This is Q and I in front of the sea lion tank. We are waiting for Woody, the very large adult male sea lion, to swim on by.
Here is Woody as he approaches Quincy and I. It seems as if he is looking right at us each time he swims by…I’m not sure he really is, but it feels like it.
In this image we are lucky enough to have both Woody and a female companion swim by us at the same time. It’s amazing the size difference between the two!
This is our favorite spot…Quincy and I can spend most of our time sitting right here just enjoying the show.
Making our motorhome accessible
We are back from another camping trip with the motorhome and this time I was able to get some photos of our ramp system. We’ve yet to follow through on ordering some lighter weight ramps, but I still wanted to show what our current system is like. It worked well again this weekend and is definitely something that Rob or I can do if we are alone, although having a second pair of hands definitely makes things much safer.
Ramps have been put into place and Quincy is in her “ramp chair” ready to come out of the motorhome…
We drop the wheelchair down in to the stepwell, which isn’t difficult, and then she is ready to come down the ramp. My handsome assistant is my husband, Rob.
Ta-da!! We are safely down! I think Quincy should be a little happier about the whole process, but I guess she was content in the warm motorhome and not all that thrilled about a walk in the brisk, coastal breeze. Sometimes, she is a typical teenager! 
Seward, Alaska: a great accessible community to visit!
Seward, Alaska has proven to be another great community to visit if you are disabled or are traveling with a disabled person. We have found that there is much to do here with Quincy.
The boat harbor is a wonderful place to stroll around. There is a great bike path that runs the length of the community so we can stroll from one end of town to the other with Quincy at a safe and leisurely pace. The harbor has great shops and a wide boardwalk from which we can watch the boats and enjoy all the sights and sounds.
One of Quincy’s favorite places in Seward is the Alaska SeaLife Center which is an extremely accessible facility. The SeaLife Center has created a unique experience where we are able to watch sea life from underneath the surface of the water. Quincy is completely captivated watching the sea lions, otters and diving birds from their underground tanks. It is something to stand next to a glass tank and have a massive sea lion swim right on by! It also has an area where Quincy can touch sea life, like starfish and sea urchins. The sensory experience at the Alaska SeaLife Center is something delightful for all ages, but even more so for children like Q who depend on sensory input.
In addition to these attractions Seward also has a great community playground for the kids to play, wonderful restaurants that are very welcoming to families like mine, and, if you are the adventurous type you can always climb Mt. Marathon. The view from the top is breathtaking. But, be warned…it is a very challenging climb! We always enjoy gracious hospitality when we visit Seward and that, combined with great accessibility, definitely gives it a place in my rankings of Great Accessible Communities. If you get the opportunity to travel to Alaska, be sure to make Seward one of the places to visit!
Adaptive travel: motorhomes and wheelchairs
Our trip to Seward was a lot of fun. My only sibling, my brother, and his wife live in Seward and we don’t get to see each other as often as we would like, so it’s always a treat when we get together. My children adore their Uncle Ron and Aunt Janine and we don’t act too serious when we get to spend time together.
The ramps worked quite well and we are pleased that we seem to be on to a good solution to our travel issues with Quincy. But we have some kinks to work out which isn’t a surprise. There are always kinks when developing a new system. We knew the weight of the ramps was probably going to be an issue. It’s not that Rob and I can’t muscle them around (for a small woman I have an impressive amount of strength in my back and arms from lifting Quincy all these years) but moving them something we cannot do quickly. That is a problem when you are camping and it may be cold or wet or, even worse, buggy. When the ramps are in place, the door and the screen must remain open and so the rig quickly loses all it’s heat and can fill with mosquitoes. A lighter, more nimble, ramp that could be moved quickly in and out of place would really help cut down on this issue.
Also, we initially tested the ramps in our very level driveway, but when we camp our sites are rarely level. We had to raise one side of the motorhome substantially in order to be level, so the ramp was much steeper than we expected. But with a person at both the front and back it was still quite easy and safe to maneuver up and down. However, if Rob or I are alone with Quincy in the motorhome we would need to be sure we were on as level as spot as possible so the ramps aren’t too steep for one person to manage alone.
Rob found some lightweight aluminum ramps online that only weighed 8 pounds and look like a perfect solution to our problem. Only issue is getting them shipped to us. Unfortunately, if you live in Alaska (and probably Hawaii and Guam) most companies freak out when it comes to shipping anything of an unusual size. So, we will have to help the company understand that we are a part of the United States and we get Postal service as well as UPS and FedEx deliveries. We’ve been through this conversation about a million times and I don’t expect it to be a hurdle that we cannot overcome.
My intent is to put up some pictures of our present ramp system as well as whatever modified option we come up with. I am traveling for a week and do not have access to my photo files, but promise to do so when I get home.
Adapting motorhome travel for a wheelchair passenger
We are one week into our summer vacation and my children have been relentless in reminding me that it’s time to go camping. In fact, my two younger children have been spent every night this week sleeping in the motorhome impatiently awaiting our first trip of the season. I am so glad that my kids still enjoy our family getaways. I am told that some day they will get to an age that spending time on the road with their family in a motorhome will not be something that excites them anymore. I hope that doesn’t happen but, just in case, we are going to jump at every opportunity to camp with them that we can!
One issue we have struggled with as Quincy has gotten older and bigger is how to get her into the motorhome. It can be done with a two-person lift, but it’s tough manuevering up three steps and through a narrow door while carrying her. Someone always has to do this backwards and that takes a lot of coordination and strength. Although this approach works, it does depend on both my husband and I being physically strong and available any time we camp with Quincy. This has made it difficult for one of us to do it alone. So, if we want to go to Homer and my husband wants to go out on an all-day halibut charter, I am unable to move about with Quincy. Or, if I am on one of my DC trips (next week, in fact) then he can’t take the kids the camping without me.
So, it has become evident that for our independence we need a better solution. Our first issue is the wheelchair. The travel chair we use for Quincy is very wide, wider than even her daily wheelchair, and it’s difficult to get through even standard doors and thresholds. Her regular chair is skinnier, but heavy and there is no way to store it. One thing about raising a child like Quincy, who has been disabled since she was an infant, is that we have tons of equipment that we have used over the years. So, we started looking through that inventory and found a smaller travel wheelchair (one that folds up) that is skinnier than her current one. Quincy has gotten tall over the years, but is still very skinny, so the only real issue was to modify the smaller chair to accomodate her height and that was easily accomplished by adding a headrest extender.
Once we found a wheelchair that would fit through the motorhome door then we were left with finding a ramp. We found two steel folding ramps at Lowe’s that are mostly likely designed for loading a riding lawnmower into the bed of a truck. They are steel and that makes them fairly heavy and we would still like to find something lighter, but for the time being we have a solution. If we put the ramps up to the door and we use the smaller travel chair, then we can simply wheel her right in to the motorhome. Then, we just transfer her into a car seat, fold up the wheelchair and the ramps and store them in the cargo storage and we are off!
As with any new system that we develop to make our lives easier with Quincy we know there will be glitches. So today we will head out for a weekend camping trip to give our new system a trial run. This will give us the opportunity to work through all the unexpected issues that might come up while we aren’t far from home.
Last summer as we journeyed down the Alaska highway we saw a Class A Diesel pusher coach that had modified it’s front passenger door with a lift. It was owned by an elderly couple, the wife was wheelchair bound, that were spending their retirement years traveling the U.S. It was really cool. Someday, when my younger children have grown and moved on, I can see Rob and Q and I traveling the States in a rig like that. Until then, we will continue to make our smaller, more humble motorhome work the best we can so we can all be safe and have fun as we adventure out to see new places and new things.
Wheelchairs for snow and sand?
I need to find a good stroller/wheelchair that works in snow and sand. Most strollers/wheelchairs have small wheels that work well on solid surfaces, like pavement, sidewalks or hard floors. But, they don’t allow the person using the chair to have access to the fun things that occur on other surfaces, such as sand and snow. As Spring makes a half-hearted effort to make it’s mark in Alaska we face a month or two of very mushy snow conditions that are nearly impossible to push a wheelchair through. This limits Quincy’s access to many places. This weekend, for example, there were activities related to the US Alpine National Ski Championships that I wish I could have taken Quincy to, but just couldn’t access with her wheelchair.
Soft sand has to be as challenging as mushy snow to push through. I know Quincy would love the coast, particularly the warm coast like California or Hawaii. The beach would be a wonderful sensory experience for her….she would love the smells and sounds! But, before we plan that kind of a trip I need to find a wheelchair that I can use. I have seen chairs with huge, balloon-like tires that can be used on the beach, but they seem cumbersome to transport. I wonder if I can find something that has interchangeable tires?
I am going to spend some time researching this. Usually by the time I post something I am sharing my solution to a particular problem…this time I’m not quite there yet. So, if you have any suggestions please let me know. Otherwise, I will see what I come up with on my own and share what I find.
Missoula, MT…a great community for the disabled
We love to travel to both new and familiar places in the summer. We almost always start our travels with a short visit to Seattle since that is where Quincy’s pediatric neurologist is located and it’s a good time to schedule her annual visit. Seattle is fun for us…it’s a bit like home, since we have family there and lived there a lifetime ago before children and responsibility. But, we keep our time there brief. We’ve found it to be too crowded for our liking and, although it is incredibly accessible, we aren’t often made to feel comfortable there with Quincy.
So, from Seattle we often venture East to Montana. I love the hot summers, the ranch lands, and the Rockies. We also have family in Montana and it’s great to reconnect. Missoula is a cool little city…not too busy and has everything anyone would need. Montana, as a state, provides some excellent services, both care and recreational, for the disabled. Last summer we spent time touring a facility in Missoule that provides on and off-site care services and found it to be impressive. And, for recreation you should check out the great adaptive ski program at Whitefish Mountain ski resort. Montana has done a great deal to embrace and accept those with disability and with that comes an accepting attitude from those who live there. If the disabled are incorporated into daily life, you stand next to them at the Fair, you see them at the movies, you share your schools, pools and libraries with them, then the members of the community soon stop “seeing” them, they just function with them. I love that and it’s the type of place that I would like to have Quincy spend her days.
I don’t want people to look at Quincy like she’s the first disabled person they have ever seen, or that she is so wildly different that it makes others uncomfortable. I don’t want people to see her at all, unless they are simply struck by her beauty. Over the years we have visited hundreds of communities and it doesn’t take long to find those that are happy to have us visit. They want us to enjoy what they have to offer without making us feel that our presence is causing discomfort. So, for this family, Missoula makes our list of great, accepting communities for people with disabilities. This summer we hope to discover some new communities to add to our list. Any suggestions?
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