And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.


It is a wise man who said that there is no greater inequality than the equal treatment of unequals.
      - Justice Felix Frankfurter

This time of year, with so many graduations taking place, I decided to write about the accommodations that I received from Vanderbilt University through their Opportunity Development Center because of my medical issues. The first major accommodation was that I was provided a copy of the professor's lecture notes or power point slides before class began. This was because taking notes is difficult for me; I lack the fine motor skills to write at any speed for any length of time and even typing can become tiresome. The school offered a note taking service, but I found this lacking because of several reasons: 1) Handwriting, 2) the notes did not have to be turned in until a week after a class session making it difficult to study for tests, and 3) what one person needed to note may not be what I needed to note.I was also allowed to tape record class sessions to review at a later date and improve my notes. One professor even allowed me to leave a tape recorder with one of her TAs who would record the class session for me if I was absent.
The second major accommodation was for taking exams. I took all of my exams by computer with extended testing time. I used a computer because of the previously mentioned difficulty with writing. The extended testing time was to allow for the speed of typing and for any glitches such as printers getting stuck. Some Profs had me take the test via laptop in the classroom, some had me use a computer at the ODC, and others had me use one of several computers in a small never utilized lab.
The third major accommodation was transportation on campus. At that time I was unable to walk on the hilly campus from one side to the other (a good mile) in the time allowed between classes. An offer was made to purchase a power wheelchair for me, but I refused because I wanted to maintain as much independence as possible. So after a LOT of problem solving, the university arranged to have the medical shuttles transport me from one side of campus to the other and back again on schedule with my classes. A few times I was forgotten and left stranded some place but overall it worked well.
The fourth major accommodation was student housing. Freshman year I was supposed to have a single (one person) dorm room in a dorm with elevators and washer/dryer. I ended up on the 3rd floor of a walk up dorm. When I tried to talk to my RA about this, she told me that there was no way a change would be made and basically to suck it up and deal. She also told me I would not last through the first semester. I wanted to pin my first semester 4.0 report card to her forehead. So when housing arrangements for Sophomore year came around, I had to meet with the dean of housing. It turns out he had accidentally put me in the walk up dorm and would have fixed it immediately; he even offered to fix it then but it was the beginning of April and school ended the beginning of May. So I was allowed first pick of the dorm rooms prior to the lottery assignment system due to my medical needs, and I chose a single (one person) dorm room with a private bathroom. It was the largest of the 3 rooms like this on campus. I needed special housing because of the need to sleep during the day, the need to reduce germ exposure, and the need to have my own bathroom for bladder problems, I was able to keep this room for the remainder of my time in college.
The fifth and final major accommodation was with the class registration system. Because when I selected classes, I carefully planned out a schedule with time for breaks and rest in between class sessions, I needed to be accepted into the course numbers and sections I selected. So the computer system was given a code with my name that guaranteed I would be allowed enrollment in any course I requested. This way I could not be bumped to another section meeting at another time, or wait listed for a course.
These accommodations did not give me an unfair advantage, instead they helped level the playing field with my peers so that I could perform to the best of my ability without symptoms of my illness/disability limiting my abilities. There are many more accommodations that someone with a disability can request if necessary, including having textbooks on tape, having exams read to them, using dictation for exams and papers, visual door bells for someone with a hearing impairment, braille textbooks, and wheelchair accessible dorm rooms.

Well, I sure like Vanderbilt a lot more now!

These accommodations leveled the 'physical' playing field. Ahem.


Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."

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Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst

Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies

* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.