Adaptive clothing and gear
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!
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? 
Special Olympics and Mat-Su School District
Last week the Mat-Su Borough School District partnered with the Special Olympics to provide an afternoon of floor hockey and other activities for over 200 of the District’s elementary aged special needs students. This is such a fun event and I commend the District for encouraging their staff and schools to be participants.
Each elementary school that participated was given their own t-shirts in their chosen color, so the kids stood out as teams. Stations were set up for the kids to play and practice skills such as passing, shooting, and scoring. The event was staffed by Special Olympics volunteers who were available to assist any who needed help.
Special stations were designed to allow for the participation of students like Quincy who are in wheelchairs. The staff fabricated floor hockey sticks that were attached to her chair so she could participate in the games, and other modified equipment was designed to allow her to pass and shot and score with her friends.
It was an terrific event that the kids look forward to every year. Quincy smiled and played with her peers all afternoon and it was a joy to watch. A huge thanks from me to the Mat-Su Borough School District, the Alaska Special Olympics, the AT&T Sportscenter who provided the gym space, and all the staff and volunteers who worked so hard to make such a great event for our kids.
Quincy and her aide, Mary
Wheelchair with hockey sticks
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.
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!!!
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.
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