With as many people out there looking for a job as there are, you would think that finding an aide for me would be an easy task. Let me be the first to tell you, it's not. The ads we place when searching for a new aide for me usually go something like this: "In search of a woman between the ages of 23 and 45 to be an aide/personal assistant to a young lady with Brittle Bone Disease. Your responsibilities would be, but are not limited to, assistance with transfers from wheelchair to toilet and lying down position, help[...]
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brittle bones
My blog this week was supposed to tell you guys about the amazing art teachers I've had throughout my career, but the experiences I had with my wheelchair over the weekend flying to Maine and back inspired me to switch it up a bit. Don't worry, art teachers are soon to come. A couple of months ago, Mom and I were given a unique opportunity to plan a trip to anywhere in the United States we'd like to visit at little cost to us. We chose to head to Maine, a trip we've wanted to take for several years, to visit a some close f[...]
Parents of children with Osteogenesis Imperfecta are often charged with child abuse, simply because their kids always turn up with broken bones. My muscles can break my bones when they contract, making it seem like my bones break at random. You can see where, especially if a child has a lower severity of OI, parents are blamed when the child shows up hurt at school and can’t say how they hurt themselves. Well, my parents have also been charged with child abuse, though for a slightly different reason… My parents ar[...]
Because I have Osteogenesis Imperfecta, or Brittle Bone Disease, it's extremely important that I use a wheelchair that is not only stable but supports my crooked body in all the right places so that I don't break a bone if I hit a bump. My body is not standard. I have bends in all the wrong places, so my seating system has to be completely custom to be comfortable and effective. I have to be physically able to reach the controls and push all the buttons. It's important that every detail of my chair is tailored to my need[...]
What is the first place you think of when you think of taking a summer vacation? I bet more than half of you instantly thought, THE BEACH of course! There's something about that beautiful blue water, the ocean waves, white sand, and sun that just lures people in. Kids love to run in the surf, build sandcastles and maybe throw a ball around while their parents love the relaxing sound of the ocean, a shady canopy, and maybe an adult beverage or two. Even the dog loves to play in the sand and the surf. There is something for ev[...]