Adaptive clothing and gear
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!!!
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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Recent Posts
- The fear and reality of losing a disabled child to their disability
- Photos of an adaptive bi-ski in action in Alaska at -5!
- What does a bi-ski used by a disabled skier look like?
- Be compassionate and communciate effectively and make the most of the holidays with the developmentally disabled
- Great mittens for the developmentally and physically disabled!!
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