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.
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.
Adaptive skiing in Girdwood, Alaska for Spring Break
Next week is Spring Break for my family and I am really looking forward to it. The push from Christmas to Spring Break is tough in Alaska…I’m sure it’s tough everywhere, but it’s a killer up here where the weather is bitterly cold and the daylight elusive. We are starting to turn the corner, but spring is still a long way off for us. Our days are longer, but the cold is relentless.
It’s about this time every year that I realize I need a vacation. I would love to hit the sandy beaches of Hawaii, but have yet to find the courage to brave a 5 ½ hour plane trip with Quincy…and that’s just flight time. If you add in all the additional time for checking in, getting through security and flight delays it can turn into a full day of travel. That’s just more than either my husband or I is prepared to take on, especially when we are already worn out and in need of our own rest and relaxation.
So, as we do every year, we will stick close to home. Our plan is to ski and play in Girdwood. We hope the weather cooperates and we can spend as much time as possible on the mountain. The fresh air, exercise, good food, and a break from the stresses of work and life will do all of us good.
Someday I hope we can figure out how to travel to exotic, warm places with our family. But, until then I am thankful for that which we do have.
Travels with a developmentally disabled child
Because we live in Alaska, far from much of our family, far from Quincy’s pediatric neurologist, and far from parts of the United States that actually enjoy HOT summer weather, we have always been ones to travel. Travel for Alaskans is quite different than travel for anyone living in what we call “the Lower 48″. We put down an insane number of miles in a single day. Heck, my husband drives 100 miles every day just to get to work!! You simply cannot live up here if you do not like to travel. However, with Quincy travel is complicated. Plane trips are very difficult…security is a hassle because she is in wheelchair and must be hand scanned, seating on a plane is difficult because she requires lateral supports and a chest harness to keep her safe, and finally, the biggest challenge of all is that there is no place on an airplane to change a diaper on a teenage girl. So, you have to plan air travel around meals, you have to cut back on her intake of fiber and fluids to try to reduce the risk of having to change her, and you have to swaddle her in multiple layers of diapers. Then, of course, flights get delayed, seats get changed, you can find yourself sitting on the tarmac for hours waiting to take off…all of these uncontrollable variables have both made my husband and I use plane travel only as a last resort. Instead, we have chosen to be self-contained and travel in a motorhome. It certainly is an expensive way to go these days with the price of gas in Alaska at $4.20/gallon, but it’s fun, it’s not stressful and we are in control and that is worth everything. After all, if Rob and I are stressed it affects the entire family in a negative way. We have learned that taking care of our level of comfort is equally important to taking care of Quincy’s. As I continue with this blog I will share more about the details of how we travel in an RV with Quincy and all the incredible places we have been able to take her. Today we are winterizing our rig and putting it away for the winter and it prompted me to make mention of it…to start a conversation about this great vehicle that has allowed us to do so much together as a family. A motorhome obviously isn’t for everyone but the idea of travelling with a disabled child in a way that is self-contained is probably something many families have learned to do, be it in an RV, a mini-van, or whatever works. Our children need space, they need to be able to have their positions changed, they need to eat special foods, take meds and rest. They have equipment they must travel with and they have their own schedules. Little of this is conducive to the craziness and unpredictability of air travel. The more we are able to do on our own, the happier we are and the happier we are the braver we become to see new places and experience new things. We’ve found that we are not limited in our ability to travel with Quincy, but just as with everything else in her life we must go at our own pace. That is the beautiful freedom our motorhome has given us.
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