wheelchair
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.
Summer sandals that keep feet protected for children in wheelchairs
Summer shoes are tricky for Quincy. She needs a sandal, like the rest of us, that allows lots of air to her feet on the warmer days. But, she also needs protection for her feet, since she spends all of her time in a wheelchair. Wheelchairs are well padded, but they still have bars and supports that can be kicked by feet. So, we always try to find shoes that keep her heels and toes protected. This gets tricky with sandals because they are often difficult to put on her foot or the toes are open and the heels are almost always uncovered.
But, to our delight, we have found that the sandal that our other children (and my husband) prefer for their feet works perfectly for Q. It’s the Keen Newport H2. These are great shoes! They cover the heel and have a protective toe box, are fairly easy to slip her foot into, and come in tons of fun colors! The only downside, if there is one, is the price. They are priced around $45 like a good pair of shoes. But, if you shop at the end of the season or wait for sales you can usually pick up a pair for less.
I love the tan marks these shoes make on Q’s feet, too. It’s always the sign of a great summer when we take off her shoes and she has stripes all over her feet from wearing her Keens. So, her new shoes arrived today and I expect lots of sunshine and warm days to follow…isn’t that how it works? 
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.
Quality of life for the disabled: harsh climate vs. mild
I love spring! Every year when spring rolls around I am reminded just how easy life can be for people who live in a mild climate. We love winter and that’s one of many reasons why we choose to live in Alaska. We have all the necessary equipment and gear to do what we love to do while staying warm and safe all season long. But, the reality is that winter is a lot of work. Driving on icy roads is stressful, keeping your house warm and functioning in sub-zero weather is an effort, keeping children, particularly Quincy, safe and happy in bitter cold is a constant chore, and then there is keeping the driveway clear of snow, the sidewalks free from ice….
Today we are lucky to have studded tires, backup generators, polar fleece, down, Goretex, wind-stopper fabrics, leg capes, blankets, mittens, hats, balaclavas, hand and toe warmers….the list goes on. It’s a far cry from when I was kid, trying to stay warm at the bus stop in moon boots (remember those?), scratchy wool hats and gloves and snowsuits. We stay much warmer and drier with today’s fabrics and gear and therefore we have a whole lot more fun playing outside in the cold.
But spring is different. This morning my kids headed out to catch the bus with just their book bags and jackets…not a full change of outdoor gear and indoor gear, including shoes and boots, as they do in the winter. I didn’t have to plow the driveway for the bus or shovel a path for the wheelchair. Quincy wasn’t bundled up so that only her eyes showed, but instead was happy for the sunshine, the warmer air and the freedom to move her arms around any way she wanted. She was singing and talking as I loaded her on the bus ramp this morning and I know it was because she loves spring too.
Every year at this time it occurs to me how difficult life is for the disabled in Alaska. When Quincy becomes an adult I have to wonder if she wouldn’t be happier, and be able to experience more, if she were living in a place that had a milder climate. Maybe not. Maybe winter is just hard for me as her caregiver and she’s perfectly content. But, since I plan to be her primary caregiver for as long as I am physically capable, I guess this is still important to think about. Every community has it’s advantages and disadvantages and I think it’s worthwhile to at least explore the options.
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.
How can we find good equipment for our disabled children?
The parents of the disabled are no different from the parents of the able, but we do speak a different language. Instead of discussing the latest movies, clothing, music, or sporting events we discuss our experiences with therapists, care providers, and equipment. Today I had a conversation that revolved around stroller wheelchairs, which are wheelchairs that are portable and can be used when you are travelling. They are much lighter than the average chair and usually fold up so they can be easy to travel with. But, it’s hard to know what you are buying until you have purchased the item. There is no way to “test drive” equipment or even try it on. You simply must part with sometimes thousands of dollars and hope to Hell that what you are getting will truly fit your needs. And, more often than not, you will find several aspects of the equipment that just don’t work well. Wheels that may be inadequate, harnesses that do not fit, seating systems that are not comfortable…the list goes on and on.
And, to complicate the matter even more, if your insurance has paid for this piece of durable medical equipment you can expect that they will not want to process another claim for the same type of equipment for at least five years. Yes, five years. That is the amount of time they calculate it should be before your next purchase. It doesn’t matter if your adolescent child has a major growth spurt and the equipment cannot grow to accommodate them. It does not matter if the equipment is less than advertised. You will have a huge battle on your hands or you will have to wait it out.
Families like mine have garages and basements full of equipment our children have outgrown or didn’t work as we had expected. What would be cool if there was a place that families like mine could go to to test out and try equipment. We could look at everything available, have our children sit and test it, see how it grows and functions before we ever purchased it. That would be awesome! I mean, how many families would spend thousands of dollars on a bicycle, TV or jet ski that they first didn’t test and try out and knew they had the option to return if it didn’t work as advertised? None is my guess.
So, if you know of such a place, please let me and my readers know about it. Maybe an equipment expo that parents can attend or a company that has a huge showroom and tons of inventory. I would make the trip to such a place and I am quite sure other families would do the same!
Handicap accessible Girdwood, Alaska
One thing I want to accomplish in this blog is to draw attention to the communities that we visit with Quincy that are welcoming and accessible. It’s amazing the different vibe you get every time you travel to a new place. It’s not just about the physical accessibility of a community for those in wheelchairs but more about the attitude of the folks who live there. Girdwood is one of those exceptional places. This little community in South Central Alaska isn’t really all that accessible for those who must be in a wheelchair, but the lack of ramps and sidewalks is made up for by the total acceptance of everyone living there for my daughter. People don’t blink twice when we enter our favorite restaurant, Chair 5, they just move their chairs make room for us to pass. No one stares. No one seems to think there is anything unusual about my litle family making our way through the weather to go to the park or the store or anywhere. The children don’t stare, the parents don’t mind…we do not offend or frighten, we aren’t even a curiosity. We are simply a family. It’s one of the few places I have taken Quincy where we are treated as a completely normal family. So, Girdwood has become our haven. We have a small getaway there and spend as much time as we can. We ski and bike and hike and rest and play and we do it every single day without ever being reminded that we are different. Amazing people in an amazing town…anyone with a child like Quincy must try to visit Girdwood someday. It will be worth your effort.
Disability awareness and tolerance
As my family prepares for another weekend, I know that I am going to have to face the inevitable decision about “What are we going to do?” which is a never-ending question from my children. My two children who are not disabled always want to do the stuff normal families do…go to a movie, go shopping, go out to a meal. I am always torn by this because I know I owe my children a regular childhood and yet we are far from a regular family. We are reminded of this constantly whenever we are out in public. What is it about my daughter in a wheelchair that gives other people permission to stare and remind me that we are different? Do people not understand how rude that is? And, beyond the rude element, do they not understand that the minute they draw attention to the fact the my family looks different they have simply ruined my moment? Have they never seen a child in a wheelchair…do we really look that different? And, what is wrong with parents? Why don’t they teach their children that we are all different? We are fat, skinny, different colors, disabled, missing limbs, maybe burned or scarred. Are some so priviliged that their lives have not been touched by tragedy that they haven’t bothered to teach their children to be respectful of those who look different? To children I will simply say “Ask questions if you’d like, but it’s rude to stare”. To their parents, I am less polite. It is an inate reaction to protect Quincy from this and so I will give them my best evil-eye and tell them to ”Stop staring at my child! IT’S RUDE!!” So, sometimes I do not wish for the stress or hassle and chose to remain in the comfort of my home. Other times I am irritated that my family should be deprived of a simple afternoon out, maybe at Costco or Barnes and Noble, because I will have to deal with other people’s rudeness. Quite simply, staring hurts and my life has enough hurt in it already…I do not need strangers adding to it.
Categories
National Vaccine Information Center (NVIC)
