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| PARENTING By Jessica Haber As a mother of two young boys who is spinal cord injured and uses a wheelchair, I had overcome and surpassed many challenges, but this may have been the toughest of all: I was unable to get my newborn into my van by myself. | PARENTING By Jessica Haber I am now the proud mother of a second beautiful boy—me, a mom with spinal cord injury! I must admit that the whole experience of my second pregnancy was much easier than my first. Since I had already been through pregnancy and birth before, I was able to better prepare and make accommodations for myself and my new baby. | PARENTING By Jessica Haber I have shared with you in past columns some of the physical difficulties I had when my son was in infant and the adjustments and changes that I made, as a mother with a spinal cord injury, to take care of him. As he grows older, we have different challenges to face and more opportunities to find creative solutions. It is no longer just a matter of adapting baby furniture and modifying my home; now it’s also about being a mother with a disability in the often inaccessible world outside. Jessica Haber’s real world experiences and insights as an expectant mother with a disability, in the “Second Time [...] “Deliverance” is Jessica Haber’s story on the challenges she faced as a pregnant woman and mother with spinal cord injury (SCI). [...] By Jessica Haber I couldn’t believe it, I was pregnant! Just like any woman my mind was flooding with so many different thoughts and emotions. In addition to the usual fears and doubts of “will I be a good mother?” I had to wonder, how in the world was I going to do this? Twelve years earlier, when I was in high school, I was paralyzed in a car accident and have since been a paraplegic and used a wheelchair. I finished high school, went on to college, moved across the country, worked, got married, and even owned and operated a restaurant [...] Parents of children with SCI ask themselves not only when to let their children go, but how, and even whether to let go at all. By E.M. Treston Statistics show the average age at which a person sustains a spinal cord injury (SCI) is between 17 and 25, a time in life when the young adult is launching out on his or her own, graduating from school, starting a career, becoming engaged and starting to do all the things that are expected to happen to an adult within a lifetime. An SCI changes that path, at least initially. Independence, so recently acquired, [...] In this issue of Action, we are focusing on various aspects of the family as it relates to spinal cord disorders (SCD). Because the drive to reproduce is so strong is us, it isn’t surprising that the desire to build family is no less urgent for many people after they are injured or diagnosed with an SCD. Many are fortunate to have children of their own, while many others find adoption to be the perfect solution for growing a household. Our families take many forms. I would like to pose the perspective that United Spinal Association and its members also constitute a [...] Multiple sclerosis can no longer be thought of as an adult’s disease. By Kelly Rouba Elaine Mackey Sixteen-year-old Elaine Mackey has written a booklet to explain multiple sclerosis to her peers, more of whom, like Elaine, are being diagnosed with the disease than ever before. Although she is only a freshman in high school, Elaine Mackey has already taken over a few health classes as “teacher for a day” in an effort to make her fellow students aware that children and teens can get multiple sclerosis (MS), a disease commonly associated with adults. “Some kids who knew what MS was thought that only [...] It’s not news that spinal cord injuries and disorders are expensive, but financial help is available—if you know where to look. By Kelly Rouba After listening to Bret Neylon recap the past seven months of his life, one can’t argue that it has all the makings of an episode of “Extreme Makeover: Home Edition”-except ABC wasn’t involved. A teacher and coach in Brownsburg, Indiana, Neylon often enjoyed running as one of his favorite past times. But, at the age of 34, he gave up the activity due to a number of sports-related injuries and decided to turn to cycling instead. “Running is [...] By William Peace, PhD In 2005, I wrote a series of columns for this magazine about parenthood and disability. Each column had a specific theme that addressed issues I have encountered as a single father with a disability raising my son. (If you’re interested, you can read them on-line at by clicking on “Parenting” in the Categories section of the navigation bar.) I took an unexpected leave of absence from column-writing when another sort of parenting issue arose for me. My father died October 9, 2005. His death was preceded by an agonizingly slow form of dementia that was frightening to him and [...] By Beth Livingston Lila and Parker, the author’s children. Months after the car accident that left me paralyzed, my husband gently revisited the subject of having children. I had always assumed we’d have one-or many. “Things are different now,” he said. “I would understand if you didn’t want to have kids.” Things were different, I thought. I likened my paralysis to a small child that would never grow up. I would always struggle to dress it, potty train it, and check and care for “owies.” I already felt overwhelmed by the care my paralyzed body required and wondered if I could handle [...] by William J. Peace Since my son entered the New York public school system, I have repeatedly encountered problems solely because I am a person with a disability. The school he attends complies with the local, state, and federal accessibility laws as administrators interpret them, but it does so with great resistance, if not animosity. Does the negative perception of disability have an impact on my ability to be actively involved in my son’s education? In a word, yes. For instance, the school system has a single small bus with a wheelchair lift used to transport “children with special needs.” These children [...] by William J. Peace Why do most cultures ostracize people who do not fit within social norms? According to Leslie Fiedler, who penned the term, “The Tyranny of the Normal,” society is afraid of those who are different. The “normal” people pressure those considered “abnormal” and force them to change their appearance, fix whatever is broken, or remain out of sight because their presence is too upsetting. I encounter this social dynamic on a regular basis as a parent and individual with a disability. As my son has gotten older, the social barriers have not lessened but, rather become more complex. [...] I live an ordinary life. Like my neighbors in suburbia, I am a parent, live in a nice home, shop at the local grocery store, buy gas for my car at the self-serve station, complain about the school system, and bemoan escalating tax bills. Again, like others, I am active in my son’s school and, much to my chagrin, accept that a majority of my social life revolves around activities such as Boy Scouts, hockey, and archery. Despite the ordinary life I lead, I stick out like a sore thumb. When I enter a room or meeting, people instantly know who I am. [...] |
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