Equipment
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.
US Alpine National Championships, Alyeska and adaptive skiers
We are heading to Alyeska again this weekend to watch the US Men’s and Women’s Alpine ski teams compete at the US Alpine National Championships. This is the third time Alyeska has hosted this event and I can tell you from experience it is really fun to watch.
Two years ago when this event was held at Alyeska we were lucky enough to have most of the Men’s US Ski Team walk in to the Challenge Alaska Ski School and spend about an hour just hanging with our kids and seeing what adaptive skiing in Alaska is all about. It was an amazing experience. The guys were incredibly gracious to the disabled athletes, patiently signing as many autographs as requested and posing for endless photos. It was access that most other people did not have the opportunity to enjoy. We have photos of Quincy and her brother and sister with great athletes like Bode Miller, Julia Mancuso, and Marco Sullivan. Afterwards anytime they saw us on the mountain they would high-five us and say hi to Quincy. She was a rockstar for a day! It was probably a little thing for them to do, but meant so much to Quincy and I am still touched by their kindness.
If you love ski racing as much as we do, grab your boards and join us. It’s going to be a really fun weekend! Plus, Alyeska got about 40″ of fresh snow in the last two days so the skiing is going to be amazing!
Adaptive skiing with a bi-ski at Alyeska Resort in Girdwood, Alaska
It’s been a while since I have posted any photos and I thought it would be fun to share our most recent pictures of skiing with Quincy. Lucky for me my brother, Ron Niebrugge, is a freelance photographer, and with his help we were able to get some really good shots of skiing with Quincy. 
Both of these photos do a great job of showing just how unique it is to use a bi-ski. As you can see, Rob does an enormous amount of work. He is an expert skier and is also very strong. These photos are taken on a fairly gentle slope, but we often take Quincy on much steeper terrain. It takes a highly-trained adaptive ski instructor to make the bi-ski arc and carve across the fall line. My job is much easier. I am the shadow and my role is basically traffic control. I am usually off to the side of Rob and Quincy and I block skiers who may be getting to close to Quincy and I warn people ahead on a run that the bi-ski is coming. The bi-ski cannot react as quickly as a skier to sudden situations, so it’s up to me to keep Quincy protected from out-of-control skiers and other hazards. My other job is to assist loading the bi-ski on the chairlift. It takes two people to lift it as the chair lift slides under. We then attach it with a safety harness to the chairlift so it cannot slide off. So, although my role doesn’t have as much glory as Rob’s, I take comfort in knowing that I am an integral part of the operation and without me they would just be stuck in the lift lines!!
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!
The unpredictable nature of activities with the disabled
Some days are easier than others. No matter how well you plan out your day, the whole thing can go to Hell in a handbag quicker than you can snap your fingers. Yesterday was a day like that. Nothing terribly traumatic happened, but it turned out to be a day more of effort than fun.
My son had a ski race scheduled at 11:00…the weather was insane, snowing a foot and in the mid-20’s. Couldn’t ask for a better day on the mountain. We decided to take the girls up in the morning to ski a few runs and then take Quincy in the bi-ski over to finish line so the girls could watch their brother race. He would be doing two slalom runs, but we thought the first run would be the best for all of us to watch.
As soon as we got to the Challenge Alaska building we got our first taste of how things were going to go. The place was so jammed packed with clients (which is a fabulous thing!) that there was no place to park, no place to gear up, no place to move. Strike one. We finally squeezed the van behind someone else’s vehicle, found a teeny corner to gear up and got on our way.
The mountain was soft and the snow glorious and Q was having a blast. But, before we headed to the race course we decided to take her water bottle with us so she could have some drinks while she waited. That’s when we realized we forgot lunch and her water. Strike two…
We headed to the race course anyway and figured we could still catch the finish before she got too hungry or thirsty. The race was scheduled to begin at 11:00. It started at 12:30 and my son was bib number 98. Strike three…
Quincy got totally cranky and hungry by 1:00 (we were up to about racer #45 at this point) and Rob had to hike her back to Challenge so he could go back to the condo and get lunch. He missed my son’s finish. My son finished and was mad because his Dad wasn’t there. The girls were mad because they were starving and we had no food. How did it all go downhill so quickly? It is what it is, I guess. We do our best to plan for everything when we head out with Quincy, but some days are better than others.
The final footnote to the story is that my husband got to catch my son’s second run of the race (I missed it), everyone was happy after they ate and the day was salvaged. Quincy and I missed some great skiing on some fabulous powder, but there will be other days for that. In Alaska, one thing you can count on is lots and lots of amazing days to ski in March and April!!
Shoes for children with physical disabilities
Living in Alaska is always an adventure….sometimes the adventure is fun, sometimes it’s just plain effort. This week we went from a deep freeze to a quick thaw in roughly 48 hours. The weather swung from -25 to 45 in a very short span of time and has simply wrecked havoc with the roads, services and just about everything else. The schools have been closed for the past two days and we have been enjoying a mini mid-week vacation.
Today the family got a little bored so we ventured to Target. Target opened it’s first Alaska store in Wasilla last October. I love this store when it comes to outfitting Quincy! They have great selection with great prices.
Quincy has little feet that are hard to slide into shoes. It’s a challenge to find a shoe that will fit her foot, that is easy to put on, and that will stay on. It also has to be fairly light since she kicks her legs around a lot and we don’t want her to hurt herself or someone else by kicking them with a big, heavy shoe. I love Converse Chuck Taylors. They are easy to put on, lightweight, and fashionable. They come in bright colors, pastel colors, patterns, polka-dots…you name it. It has become Quincy’s shoe of choice.
Today at Target she scored a new, pink pair and they were less than $5! Seriously, how cool is it when something you love is at such a great price? Times are tough and most families I know are sticking to a pretty tight budget, including mine, and when I can replace a pair of shoes for $5 it’s a small victory. And, since pink is my favorite color I can even afford to get myself a matching pair!!
Check out these cuties!
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.
Photos of an adaptive bi-ski in action in Alaska at -5!
Well, my plan to ski once the weather improved was a good one but it hasn’t played out quite as I anticipated. A massive front of high pressure is keeping frigid Arctic air over Alaska and there is no end in sight. We actually went home for a couple days but found that the Wasilla temperatures were close to -20 and that was worse than -5 in Girdwood. So, we did what most Alaskans do…we toughened up and decided to make the best of it.
Despite being -5 at the base and almost -10 at the summit today we bundled Q in every concievable layer and article of clothing, from hand and toe warmers to balaklava’s and went skiing. The mountain is actually in incredible condition…the groomers are smooth and the snow is really fast. And, the upside to miserably cold weather is that there aren’t any lift lines to stand in.
We would do a couple runs and then get inside to warm up and then head back out for a couple more…our day went that way and it was great. Quincy had a blast! But, the main reason I share all this is because I wanted to follow up my last post by showing photos of the bi-ski in action. After several attempts I got a great shot of what Rob and Quincy do to ski together.
Rob uses the tether lines to steer the bi ski. A little pressure on either line will cause the bi ski to carve an arc across the slope. Quincy’s bi ski is manufactured by Enabling Technologies which can be found at superlite.org. Woody and his team were fantastic to work with as we designed a ski to fit Quincy’s needs. They are true professionals and I would recommend them to any disabled athelete interested in obtaining adaptive equipment.
Our holiday vacation is quickly coming to an end and we have enjoyed it thoroughly. My only regret is not writing quite as regularly as usual. I plan to do better once we get back into our regular routine. I am looking forward to all that 2009 will bring to our lives and wish each of you a very healthy and happy New Year!
What does a bi-ski used by a disabled skier look like?
I hope the holidays have been full of blessings for each of you and your families. During the past week we have been relaxing and enjoying our time together. The days prior to Christmas were just perfect for skiing and we hit the slopes daily…it was a blast. Unfortunately, Alaska has been hit with one of it’s famous cold snaps and it was -6 today on the mountain. We braved the bitter cold to watch my son participate in a slalom race and it was nearly impossible to keep warm. Unfortunately, these temperatures are just too cold for Quincy. We cannot keep her safe and warm and it’s simply not fun for her to ski. So, we will take a break for a few days and hope it warms up soon.
But, this is a great opportunity to show you some images of the bi-ski that we use. This first photo is the ski with wheels that are used for transport. The wheels allow us to move it around without scratching up the skis.
This next photo is the ski with the outriggers in place of the wheels which is how it is used on the mountain. The outriggers allow for balance as the ski arcs a turn.
My plan was to follow up these photos with some images of Rob tethering Quincy down the mountain, but I obviously didn’t anticipate the weather conditions. Next time we are out, I promise to take some photos.
This last one is Quincy just before we headed out for our last awesome day of skiing…
By the time she is all bundled up and strapped in she will be impatient to get outside and start skiing. But, it’s important to take the time to gear up properly, both for warmth and safety, and Quincy has learned to be patient.
Great mittens for the developmentally and physically disabled!!
If you have ever tried to push someone else’s hands into a pair of mittens you know just how difficult that task can be. Children with disabilities often hold their hands a certain way that isn’t always conducive to sliding into a glove or mitten. They may also be somewhat uncooperative during the process. It can be as aggravating for the caregiver as it must be for the person.
We have tried a million different ways to keep Quincy’s hands warm in the winter. For quick trips outside my best option has been to simply slide a pair of fleece socks over hands. I still have to take care of all her little fingers, but at least socks are stretchy and soft and I don’t have any finger or thumb holes to fight with. However, if she is outside for any extended period of time, like when we go skiing, socks simply aren’t warm enough.
We have purchased super over-sized mittens and cut the cuffs but we find that if something is too easy to put on then it is too easy for her to throw off. We have tried socks over her hands and then trying to slide them into mittens but that can be incredibly bulky.
Finally, a solution from my favorite company! Check out these thumbless mittens with zippered cuffs from Adaptations by Adrian:
These are so great….they are really warm and soft inside, but have a waterproof exterior. The zippered cuffs allow them to be snug on the sleeve so Quincy can’t throw them off. But, best of all, I can just lay Quincy’s hand in the mitten and zip it up! No more pushing hands into little mitten holes! So, thanks again to Adrian for another great product! Keep ‘em coming!!!
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