Wheelchair
Adaptive P.E.–making physical education fun for students with disabilities
Quincy’s class has been bowling all month for adaptive PE. It has been such a blast watching the competition…which is quite fierce, I might add. What I love the most about these types of adaptive PE activities is that they are geared just for students with disability. Sometimes there is value in mainstreaming disabled kids and sometimes there is great value in designing activities just for them. Everyone is having fun, doing there best, using the adaptive equipment without people staring…it’s just a good time.
Pictured below is Quincy with her aide, Bonnie. You can see that a ramp is pushed up to her wheelchair so she can just push the ball down the alley. It’s a pretty cool set-up!
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! 
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 wheelchair options for snow, sand and water
Wow, this week got away from me!! I realize it’s Friday and I’m a day late for my post! Sometimes it’s simply astounding how busy we are. This week we were busy in a good way, so no complaints.
I’ve been looking around at wheelchairs that work in snow and sand and have found some interesting options. My husband found one doing his own equipment research and the other is a chair that a friend of mine has used for her disabled son. It’s always amazing the wealth of information those of us raising disabled children have. Whenever I reach out to my network I always get great answers to my questions.
My friend , who also lives in Alaska, has used the chair found at Landeez.com. She says it works very well and they have been happy with it. Recently she was in Hawaii with her son and said they rented a Beach Chair and it wasn’t useful at all. The biggest complaint was that it far too heavy to push through the sand. She said the Landeez is much lighter and easier to maneuver.
My husband found a unique chair called the Hippocampe at Spokes n’ Motion. This is a really cool piece of equipment. It can be used in snow, sand or even water. It’s designed to get wet and float! How cool is that? I would love to try this with Quincy. The only thing we will have to work on is the seat. It appears to be designed for people with normal trunk control and strength. We will probably have to have someone fabricate a bucket-type seat, similar to the one on her bi-ski, with a harness and headrest to fully and safely support her. Otherwise, it looks really functional.
Thanks to all who shared their valuable input on this topic. If anyone comes across anything similar to these two products that they have tested or used, I’d love to hear about it. And, when we finally do get something for Quincy I’ll be sure to share that with you.
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!
Keeping warm in a wheelchair during frigid weather
In South Central Alaska we have hit our tenth day in a row of double-digit sub zero temperatures. Seriously…it’s been -10 or colder for ten days in a row. That kind of cold really takes it’s toll…people spend an enormous amount of time just keeping their houses warm and their cars running. It also keeps everyone inside which causes cabin-fever. The kids haven’t had outdoor recess all week at school and they are going a little stir crazy. It’s very dark, very cold, very Alaska.
It seems to have affected my mental attitude a bit. Every day I sit down to write something upbeat, particularly after my last post which was pretty heavy, and nothing comes to me. All I can think of is how cooped up I feel and how sick of the weather I am. I am in a funk.
So, yesterday I thought I should at least show you just how bundled up I can get Quincy to keep her safe in this weather for the few minutes that it takes each day to get her on and off the bus. (That, of course, is when the bus is operating and this morning it too gave in to the cold and broke down).
The first layer is a puffy down jacket and a windproof, waterproof fleece lined leg bag. This keeps her feet, legs and body warm.
Over this layer is a windproof, waterproof, fleece lined cape with a hood that covers everything. This is great for stopping the bone-chilling wind that always accompanies our cold weather. A pair of thumbless mittens and a knit cap and she is ready to roll. Actually, to be honest a knit cap is really tough…Quincy moves her head around a lot and the hats usually just fall off or fall down over her eyes. This is why the hood on the cape is so great…keeps her head warm without falling off.
Just like any of us, Quincy really doesn’t mind the cold weather when she is protected from it. In fact, this week she definitely has a much better attitude than I do about being outside.
p.s. Apologies to my brother who is a professional photographer…I am a bad photographer with a really lousy camera and these photos are terrible. But, hopefully everyone gets the general idea.
School bus transportation for special needs students
I have had issues establishing Quincy’s bus transportation to school. The District is now doing what they should do for her, which is to provided door-to-door transportation from our home to school, but believe me it was a major battle to accomplish this. It was not a battle to have bus transportation included in her Individualized Education Plan (IEP)…that was easy. It was a battle with the people who coordinate Transportation for the district to bring a bus up our driveway for Quincy’s pick-up. We have a short, sloped driveway. A small bus can back-up it without any trouble. The problem is that the bus contractor only uses full-sized busses with wheelchair lifts. They cannot bring a bus of that size up my driveway. Thus, the stand-off began. We live in Alaska where the weather is downright brutal during the school year. The district Transportation people told me they would only pick up Quincy on the street at the end of our driveway. Quincy cannot be exposed to a -25 wind chill sitting on the street waiting for a bus. Nor is it even possible to push a wheelchair up or down an icy, snowy driveway. However the school district Transportation people looked at my yard said they would not come up my driveway. I told them she would not be picked up on the street. Long story short…I won, but it was bloody. I won because there are always good-hearted people who work for any company that are as frustrated as any of us about bad business and injustice. I won because an employee of the bus company called me, asked to remain anonymous, and told me that the contractor had at least three small, 4-wheel drive buses with lifts that they were using for other students. I won because armed with that information I knew that the district Transportation people were not concerned about Quincy but about the aggravation of having to re-work their bus schedules. I won because it is the law that the school district transport my daughter to school…in fact, the district receives a lot of federal money to do that. If we refuse bus service you can bet the district won’t refuse these funds. I hate using the term “I won” but I think anyone reading this that has had to deal with school districts and their children’s rights to an education would equate many of their struggles to a battle. It was a battle because in order to get the district to do what the law required I had to pull strings, I had to get angry, my blood pressure went through the roof, I cried, I lost sleep. It’s amazing to me that sometimes even people employed to care for our children are the ones who can be the most insensitive. I have great respect for the district employees at Student Support Services who have really been committed to seeing that Quincy gets the education that she needs. Among this department are some amazing, professional, and sensitive people. Ironically, the folks who contract the bus service, as well as the bus drivers and their monitors have been really incredible people, too. It just the middle-men, the folks who handle Transportation for the district, who could use some training on disability awareness, sensitivity and even Wright’s Law. Maybe they should be required to read rubysoup every day. But, I’m afraid if they read this posting I may not see another bus in my driveway for a month. Oh well….
Independence and disability
When you are raising a child with multiple physical and developmental disabilities, a child who has struggled since birth or infancy, you find yourself slowly progressing into the world of adaptive equipment. But, it takes a long time. When our children are babies and even toddlers, there is so much mainstream equipment available, like car seats, cribs, bath chairs, strollers, etc… Quincy didn’t grow or develop as quickly as other children her age and so we were able to use regular baby and toddler equipment for a very long time. But, at some point we began to realize that we would have to move beyond this world and venture into the world of adaptive equipment. This is a difficult step for several reasons. First, there isn’t a manual to tell you where to go for help…you just find yourself with a need and no idea how to fill it. Suddenly the jog stroller was simply too small and there wasn’t anything left on the shelf at Wal-Mart or REI that Quincy would fit into. But, figuring out where to go and what is available is really hard. And, the world of durable medical equipment retailers could be likened to the world of used car dealers. It’s not exactly the warmest, most compassionate environment to walk in to. Second, Rob and I have always waited until the last possible moment to actually switch to some kind of adaptation for Quincy. I will do my best to explain this. It’s difficult to accept that your child will not be able to do something that most children can. You hang on to every hope that they will overcome their challenges. But, at some point you realize that they will need help. This is an emotional stage for parents. It means you have to accept the reality of your child’s limitations and you also have to accept that you can no longer do things for them by yourself. So, to the outside world the idea of purchasing a ramp van or a specialized wheelchair or a bathing system may seem like an easy decision, but it isn’t. It’s a complicated, difficult decision. Parents have to be allowed to make these decisions when it is best for them and their child. They should be respected for the time that it takes, for the care that they have used in making their choices, for how well they have handled the enormous responsibility that they face very day. I would suspect that this is similar to the difficulties faced by those caring for the elderly. I can only imagine just how fiercely I will hang on to my independence when I am fully aware that I am losing it. Once you give something up, you rarely get it back. This is the same way that I am with Quincy. I have come a long way in thirteen years with Quincy…we have a ramp van (but I’ve yet to give up my own vehicle…just can’t quite make that leap yet), we have a bathing system, we have wheelchairs and ramps, we have standers and seating systems and therapy equipment, and yet there’s still a lot we don’t have. I will always hold out hope for Quincy’s development and always wait as long as I can before letting go of another piece of independence.
Adaptive winter clothing
This morning our temperature was 6. Yup…6. That’s tough weather to raise any child in, but it’s particularly challenging for families who have children in wheelchairs with various other disabilities. Over the years I have struggled to find the best combination of cold weather gear that will keep Quincy safe and comfortable when she is outside but is also easy to dress her in. When she was little snowsuits were great…you could just slide her in one, zip it up, plop her in a wheelchair and head out. But, Quincy is now the size of a small adult and snowsuits just aren’t practical. Getting her into one resembles more of a WWF wrestling match than care-giving. Often what Rob and I do is design what we think would be the best item for Quincy and then we research endlessly on the Internet to find something close. Because we live in a climate that gets incredibly cold, we have to find gear that is much more insulated than most. It’s easy to find rain and wind ponchos, but to find gear that is wind and water-repellent at subzero temperatures is hard. Our research brought us to this great website, adaptationsbydadrian.com, which has really helped us find what we have been looking for. I use two of their products every day. This morning Quincy wore her pink, down puffy jacket by Obermeyer which is easy to put on and easy to cinch down with the wheelchair straps because down is so soft. Then, I covered her legs with a Leg Cozy which is lined with polar fleece but has a water-resistant outer shell. Finally, I cover Quincy and her wheelchair with a hooded, polar fleece lined Wintercape. It’s difficult to keep a hat on her, but the hooded cape does a great job of keeping her head warm and covered. Quincy is protected from head-to-toe with this gear and is probably warmerthan the rest of us. We still struggle to find winter boots that we can get on her feet. We have to purchase oversized boots so we can get them on, but we then struggle to keep them on. I haven’t quite found the answer to that issue but am constantly trying new products. With Quincy it’s all about zippers. If something can zip all the way open then we can get it on and zip it into place. If it has to be pulled on, it doesn’t work well. Adaptions by Adrian makes a fingerless mitten that zips all the way open which instantly solved our struggles to keep her hands warm. You can’t push a child’s hands into mittens or gloves unless they know how to move their fingers into place. The mittens that zip open so you can place her hand it and zip close are perfect! One other thing to note…because this company was started by parents raising a child with CP they really understand our specific needs. Not only are the items functional, but they are also stylish. The have great colors, like pink and purple and red, so Quincy can be warm and pretty every day which is equally important. So, a big thanks to Adrian and his family for helping us keep Quincy stylish and warm during our long, dark, cold Alaska winters.
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