Wheelchair
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….
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.
Purchasing durable medical equipment
You wouldn’t believe how much medical equipment we have purchased over the years for Quincy. Therapy equipment, wheelchairs, standers, balls, bolsters, bathing equipment, etc… And many, many wheelchairs…too many to count No matter how great a product sounds you can count on two things…one, it will be incredibly overpriced and two, it will fall short of your expectations. My current problem is Quincy’s wheelchair. It is a fine piece of equipment but maintaining it is another story. It has taken five months, FIVE MONTHS, of badgering the supply company and their wheelchair technician to grow and adjust it properly and the work is still not complete. By the time the tech is finished with her work the chair will need to be grown again! What is the deal with this process of buying medical equipment? First, the prices are insane and it’s frustrating to think that at several stages in the process many people are making money off of our children’s disabilities. I expect people to help me and charge a fair price, but I am sickened by what insurance companies are billed and what is charged for simple equipment. I have a bill in front of me right now for a $175 right footplate for Quincy’s chair (that’s the little metal thing she rests her right foot on), a $175 left footplate, a $156 wheel and almost $170 in labor. That’s a $700 bill to change out the footplates and fix a wheel with a bad bearing. Insane! And, this isn’t the final billing. No wonder my insurance rates are so high. One thing I’ve started doing is finding dealers who are willing to work with me directly. Adaptivemall.com is one of those great places. They have knowledgeable staff and are extremely helpful. I now use them for any purchase that isn’t terribly complicated, such as bath and bed supplies and therapy equipment. They have also been great when purchasing lightweight, travel wheelchairs. The only downside is that you have to handle your own insurance and that can be a hassle, but I’ve found it’s a hassle even when others are working with the insurance company. Sometimes I’d rather just be the one to handle the claim and do the required follow-up. When it’s a product that is too complicated to order on my own, like a wheelchair, then I will go ahead and use a local medical equipment suppliers. I guess the upside is that they handle the insurance and are available for follow-up maintenance and adjustment, but most places still leave much to be desired. If you talk with any person raising a child with disabilities they will tell you that some of the biggest challenges we face is finding good companies for our business, be it medical equipment dealers, respite and care provider services or even doctors. If you know of someone in any of these fields that is worth your business, tell everyone you know! That’s what I do!!
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Recent Posts
- The fear and reality of losing a disabled child to their disability
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- Great mittens for the developmentally and physically disabled!!
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