Equipment
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? 
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!
Adaptive travel: motorhomes and wheelchairs
Our trip to Seward was a lot of fun. My only sibling, my brother, and his wife live in Seward and we don’t get to see each other as often as we would like, so it’s always a treat when we get together. My children adore their Uncle Ron and Aunt Janine and we don’t act too serious when we get to spend time together.
The ramps worked quite well and we are pleased that we seem to be on to a good solution to our travel issues with Quincy. But we have some kinks to work out which isn’t a surprise. There are always kinks when developing a new system. We knew the weight of the ramps was probably going to be an issue. It’s not that Rob and I can’t muscle them around (for a small woman I have an impressive amount of strength in my back and arms from lifting Quincy all these years) but moving them something we cannot do quickly. That is a problem when you are camping and it may be cold or wet or, even worse, buggy. When the ramps are in place, the door and the screen must remain open and so the rig quickly loses all it’s heat and can fill with mosquitoes. A lighter, more nimble, ramp that could be moved quickly in and out of place would really help cut down on this issue.
Also, we initially tested the ramps in our very level driveway, but when we camp our sites are rarely level. We had to raise one side of the motorhome substantially in order to be level, so the ramp was much steeper than we expected. But with a person at both the front and back it was still quite easy and safe to maneuver up and down. However, if Rob or I are alone with Quincy in the motorhome we would need to be sure we were on as level as spot as possible so the ramps aren’t too steep for one person to manage alone.
Rob found some lightweight aluminum ramps online that only weighed 8 pounds and look like a perfect solution to our problem. Only issue is getting them shipped to us. Unfortunately, if you live in Alaska (and probably Hawaii and Guam) most companies freak out when it comes to shipping anything of an unusual size. So, we will have to help the company understand that we are a part of the United States and we get Postal service as well as UPS and FedEx deliveries. We’ve been through this conversation about a million times and I don’t expect it to be a hurdle that we cannot overcome.
My intent is to put up some pictures of our present ramp system as well as whatever modified option we come up with. I am traveling for a week and do not have access to my photo files, but promise to do so when I get home.
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.
Warm, Alaska spring weather brings outdoor fun for the disabled!
This weekend in Alaska we had record-breaking temperatures…and these were record breaking HIGH temperatures, not low like we usually have!! Today everyone is back to work and school with sunburned arms and raccoon eyes from wearing sunglasses. It was so nice to be outside all weekend. After a long winter, I had forgotten about all the sights and sounds of spring.
Quincy had such fun. She loves the sunshine and the warmth on her skin. When I was feeding her breakfast this morning I was commenting on her cute pink nose and her freckles. We put her in her adult-sized jog stroller yesterday afternoon and took her on a long walk. All the neighbors were out and it was fun to stop and catch up with everyone. Everyone sort of hibernates in their houses all winter long and when the weather gets nice we emerge from our “caves” and spend sunny weekends catching up on our lives.
Quincy loves the fair weather of spring and summer for the same reason she loves skiing, because she loves being social, loves being outside and seeing new things, new sounds, feeling the wind and sun on her face. It’s just nice that instead of four layers of gear for warmth I was trying to find a pair of shorts that fit her. There is no better way to measure how much she has grown over the winter than by trying to pull on a pair of shorts from last summer and realizing they simply aren’t going to fit! And, the only ice we had to deal with was from melting popsicles!!
Quincy and her sister enjoying a perfect Sunday evening in May!!!
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
Goodbye to a great ski season at Alyeska Resort
Yesterday was an incredible day of skiing for my family at Alyeska. The sun was shining, the temperatures were warm and the mountain was full of our friends from Challenge and the Alyeska Ski and Snowboard Club.
Challenge Alaska closed for the season (why they don’t remain open for the full ski season is a topic for another day) but we arranged private access. Another family that we ski with all season had done the same and were hosting a birthday party for their daughter who has autism. The building was full of music, the great smells of a bar-b-que, and many friends. We had fun being together, reminiscing about the great season and sharing the mountain on a beautiful spring day.
As much as I enjoy the warm weather and long days of spring and summer, I am always sad to see the end of another ski season. Skiing brings my whole family together. We all share a love of the mountain and it’s a gift to be able to share that with my children. When summer comes along, my kids will all get involved in their own individual interests and we will spend less time together. It’s good for each of my kids to develop their own individual interests and gain independence, but I will miss our days together. I will miss my younger children watch Quincy do what they do and be impressed with her attitude and toughness. I will miss snowball fights, building snowmen, eating snow cones made from fresh fallen snow, and hot chocolate and cold beer after a long day of skiing.
The mountain is officially open through next weekend, but the snow is probably too soft to tether Quincy. My boys will surely brave any conditions imaginable to get in a few more days but the girls are hanging up their boards. Thank you Mother Nature, Alyeska Resort, and Challenge Alaska for our best ski season yet. Now, I wonder if it would be to much to ask Mother Nature to bless us with a warm, dry summer? I will keep my fingers crossed…
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.
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.
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