Equipment
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!!!
To be effective, caregivers must build and protect a relationship of trust
I have a great deal of respect for anyone who chooses to focus their career on working with the disabled…it is rarely something anyone does for the high salary or the glamour. For the most part folks who work with the developmentally disabled have big hearts and genuine desire to make a difference in the lives of others. However, all the good intentions in the world will not replace proper training.
Proper training isn’t just about the use of adaptive equipment, medical equipment, or administering meds, but must also include disability awareness and sensitivity. I have noticed that often this seems to be lacking. Caregivers, be it therapists, teachers, personal care attendants or even therapeutic recreation instructors must create trust with those that they are working with…they must create trust and they must protect that trust. Children who cannot communicate or use their bodies to protect themselves or control themselves must feel completely safe in the hands of those they rely on. If you betray that trust you will have broken a bond that may never be repaired.
I have seen Quincy shut down on people quicker than you can flip a light switch. As soon as she is put in a situation that scares her or hurts her she is simply finished. More than once over the years we have had to replace therapists because we know all too well that once Quincy doesn’t trust someone she simply will not work for them.
Last week an adaptive ski instructor took a young client down a particularly difficult run at our ski resort and dumped him. The instructor’s general attitude was that of a typical, healthy young man…no pain, no gain. It’s not fun if you don’t push the envelope. I wonder if that instructor has ever strapped himself into a bi-ski, strapped down his arms so he couldn’t use them, put himself entirely at the mercy of some hot-shot instructor who thought it would be cool to jump into a black diamond run and possibly dump him? I doubt it.
The developmentally disabled process experiences differently than the rest of us. Their trust is built differently, their fear is felt differently, and their ability to recover from something frightening is different. You must understand that trust is everything and it should not be taken lightly…it must be protected and respected.
Rob and I have never, ever had an accident with Quincy in the bi-ski and I truly doubt we ever will. We are too well-trained, too cautious, too overly-protective and, most importantly, we absolutely understand that if we scare her we may never get her back on the mountain again and that would be heartbreaking for all of us.
Battling constipation with the physically and developmentally disabled
Okay, occasionally I am going to write about things that I know Quincy would rather I not share with the world. I have to apologize in advance to her for this. However, some of these sensitive issues make up the biggest challenges that parents and caregivers face in their daily care of the children. Constipation is a very real and very persistent issue. It has been the topic of numerous conversations amongst my friends who also have children similar to Quincy.
Children like Quincy do very little weight bearing activity and because they do not move their bodies as much, or in the same way, as other kids their systems suffer. The cocktail of medications they take can make this even worse. For Quincy we do several things on a daily basis to combat constipation. First, we try to always feed her meals that are high in fiber. I also use Miralax daily in her water. This product seems to be easiest to manage and isn’t fast-acting. Through trial and error we have learned what dosage to use to keep her regular without having any surprises. Finally, we will often give her an evening snack of a Pediasure with fiber to keep her regular and help with her other nutritional needs.
Even with all our efforts, sometimes she just gets backed up. I have no idea why this occurs. We are religious about being consistent with our efforts. And still, sometimes it just doesn’t work. We keep daily records on Q, to make sure we keep track of her meds and other important issues, so we know when it’s been a few days. At this point there isn’t much left to do but the ever-dreaded enema. They work. It is always a last-ditch option but there are times when there is simply no other option. Impacted bowels can be incredibly painful for our children and are a lot more miserable than an enema. So, keep a box or two of Fleets in your medicine cabinet. It’s not expensive and it is effective. Fighting the battle with constipation is worthwhile…Quincy sleeps better, eats better and feels better when her system is working properly.
Adaptive skiing and therapeutic recreation
Over the Thanksgiving holiday we skied with Quincy. It was so much fun! Our local mountain got nearly 20″ of powder every night of the four-day holiday. It was skiers paradise and a perfect way to kick off the season!
My husband and I have been trained on how to use a bi-ski and that is what we use with Q. Rob has his Professional Ski Instructors of America (PSIA) Level 1 adaptive certification, so he really does know what he’s doing. The bi-ski (also called a sit-ski) is a device that has a bucket seat attached to two skis with two shorter outrigger skis on the back to keep it balanced. It is operated by a very skilled skier who holds two tether lines and by using those lines can make the ski carve turns to either the right or left.
My role is to assist loading the bi-ski onto the chair lift and then to shadow Rob and Quincy, blocking any stray snowboarder or novice skier who may wander into their path. A collision with another skier is just one of the many hazards we must avoid. Rough, tracked-out conditions can create a bumpy ride and just like with any skier if the bi-ski catches an edge it can tip. It can tip going too slow, it can tip going too fast. I am quite proud to say that we have never, ever dumped Quincy. And that is incredibly important. She places full trust in our abilities and if we fail her it will be very difficult to earn it back. When we trained on the bi-ski we started by using sandbags instead of a child…we dumped plenty of sandbags. Then, we practiced on able-bodied people…it’s always good to experience the equipment first hand so you have a clear understanding of what the ride is like, what is scary, what is fun, etc… We finally began with Q and we’ve been skiing with her on our own for nearly three seasons with a perfect safety record. It’s not to say that Rob and I haven’t suffered through plenty of bumps and bruises…but we suffer them happily for Q. There is no more perfect freedom that being completely independent on the mountain…cruising where we want when we want without anyone’s assistance.
If you ever have the opportunity to volunteer at any therapeutic recreation program, be it skiing or swimming or anything, please try it. There is no better reward than the smile on the face of a child who experiences something they have never done before.
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….
Adaptive skiing Alaska
It’s time to start what I expect will be one of many posts about an activity that has brought great joy and fun to my family…adaptive alpine skiing. Every day I check the webcams at Alyeska ski resort and count down the days until Nov. 26…opening weekend!! Alaskans are unique…we live in a place of brutal winters and yet we simply love winter. And, what’s more, we love to play outside in the winter. Rob has been a downhill skier since he was a kid and I’ve learned to love it once I started living with him, so our children didn’t stand a chance. Unfortunately, when we realized that Quincy would probably never develop the ability to walk we thought we would have to give up skiing. But, lucky for us Alaska happens to have one of the finest on-mountain adaptive ski programs in the country. Challenge Alaska ski school changed our lives. We were able to use the facility to learn about the equipment and skills necessary to take Quincy skiing. We’ve been part of the Challenge family for at least seven years…first as clients and eventually on our own. We purchased Quincy her own bi-ski and spent hours on the mountain being trained on how to safely use it. Rob has earned his Professional Ski Instructors of America (PSIA) Level I Adaptive certificate and will soon be Level II. On the mountain we have complete freedom…this little family of mine can ski all day long without any one’s help or assistance. Of course, my other children learned to ski about the same time they learned to walk and they have incredible talent. Both of my children are members of the local ski team and spend their weekends honing their racing and free skiing skills. So, every weekend once the mountain opens you know where to find us…tearing up the slopes at Alyeska. Rob, Quincy and I aren’t hard to spot…we are the ones with the bi-ski and the huge smiles on our faces!!
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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