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

Spring Kaleidoscope

12:46 AM

Spring used to be one of my favorite times of year, but now it is bittersweet. I still love the crisp bite as fall snaps back as it recedes (eventually, someday), I love the sudden explosion of green everywhere, I love the brilliant sunshine that emerges after the rain, I love the endless variety of flowers each as if painted by hand. I love how everything is bright and new and alive again. I love to go out in a fresh spring rain and chase puddles to splash just because I can and to twirl in the raindrops falling down with my arms open wide.
The bitter part comes because this was always a particularly active time as a teacher, with IEPs to write and end of the year excitement to plan and the joy of explorations outside for hands on learning, and the delight of seeing how far my kids had come in one school year. We always went on a Bear Hunt for Easter because everything had to be secular, and the kids followed directions of prepositions like over, under, on, around, through to find stashes of small toys until at last we reached "the bear cave" where they creeped in and found a box of bears to choose a special friend from. In May we hatched our own butterflies and watched them grow from egg to caterpillar to butterflies that we eventually set free. I was always amazed that my not so "gentle hands" never killed a butterfly in their eagerness to see them and get to them. We made special mother's day gifts and cards, and father's day too because that came after school ended and I loved being creative with these. We baked cookies, cut up fruit for fruit salad, made invitations and sent them out, decorated the tables, and set them so we could enjoy a Mother's Day tea made and served by the children (with assistance as needed). We planted flowers and watched them grow, each having a day with the important chore of watering and measuring them. There was always out water day when I asked for the kids to be sent to school in swim suits with a change of clothes and we took the huge water table, buckets, a wading pool, and every water toy ever invented out into the hot sun and just splashed until everyone was content. On the last day of school I set up a carnival in our classroom with a pinata, classroom games like bowling and bouncing frogs and pin the tail on the donkey and matching ducks and face painting and lots of balloons and bubbles with prizes at each game and special snacks. Then each id received their goodbye package from me - a framed photo that I had taken of them during the year, a photo CD of all the pictures I took, a new book chosen just for them, bubbles, and a small toy or stuffed animal.
I miss all of those classroom adventures. I miss the wonder of finding a ladybug and the lessons that came naturally from it. I miss the wide eyed wonder watching a butterfly come out of its cocoon. I miss the laughter, the fun of learning, I miss getting good and messy in the name of education. I miss my kids.
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My Easter Miracle

7:00 PM


As I previously discussed in an earlier journal post, I lost my health insurance on March 31 when my standard 18 months of COBRA coverage ran out. I faced a huge conundrum because the school district (Dante's Inferno level 14) gave me 10 days official warning and no information regarding programs available post COBRA. Strike one - a personal insurance policy would cost me a fortune and provide enough coverage to last about two weeks. Strike two - I am in appeal with Social Security so Medicare is out. Strike Three - Medicaid required a three month process of submitting documentation and waiting for some grand governmental diety to determine if I am indeed disabled before I could receive any services let alone the cost due to me making too much money. But God never accepts a strike out. There is a little clause that the school district (may they enjoy their spot in the Inferno) never notified me of which states that if you are disabled when you start COBRA or become disabled while on COBRA you can apply for an extension of coverage at the end of the 18 months. I found this little tidbit out doing research online. Strike one - they require a letter from social security and I am in appeals. Strike Two - the school district hates me with a passion and would hate to have to give me more benefits. However, I was able to establish that given that social security is in appeal, a letter from them is impossible to obtain, and so we went with documentation from my medical team. My neurologist is my hero because he wrote the most kick butt letter listing out every diagnosis I have and explaining that I am 100% medically disabled and severely disabled. Less than a week after them receiving this letter I received a letter in the mail. I HAVE MEDICAL INSURANCE AGAIN!!!!! It is for 11 months, so it ends February 28, 2012 but that gives us so much more time to work on things!!! ANd the miracle continues - I never had to pay a large sum of money for a prescription, I never had to stop taking a medication because I could not afford it, and I never had to go without necessary medical care!!! God ROCKS!!! I was terrified as I watched my medication supply deplete and knowing I could not afford to purchase the next refill. I was wondering if I would survive long enough for Medicaid to decide I was disabled or if the lack of medication would prove the point before then. To be blunt I was scared of dying and I feel like I have been given back my chance at living again. I know it sounds dramatic, but my health care and medications literally keep me alive. Thank you to everyone who prayed, who offered good thoughts, and who cared. I burst into tears when I read the letter because it was such a weight lifted and fears dissipated. Such a lesson in the fact that God provides exactly when it is needed and I should have trusted all along instead of wasting my time on fear.
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Waiting For Superman: Two and a Half Years in the Trenches

9:35 AM

For two and a half years I worked for a large public school system in Virginia as a special education teacher. Our schools were site based managed which translates to the principals having absolute power over everything that happens at the school, with little accountability. To demonstrate this effect on student learning, let me compare two different elementary schools that I taught at. School One received a high percentage of students who did not speak English upon entering the school system and who tended to be a migratory population. Over 80% of students received free or reduced priced lunches, and it was not uncommon for entire families to live in single rooms of homes shared by multiple famillies. Special education numbers were relatively high. School Two was in an upperclass neighborhood where children entered with a high percentage of students having received a private early childhood education. A vast majority of students were fluent in English as a first language, less than 20% of students received free or reduced priced lunches, and the population tended to be stable. School One consistently performed higher than expected on standardized tests, and higher than most other elementary schools in the district including School Two. School Two had just average performance on standardized tests. School one had a culture of great teachers working together for the benefit of our children. School Two had a culture of every man for himself. School one put into place the resources the children required to learn including an ESL teacher for each grade level, a Spanish speaking assistant in each class in lower elementary, a highly accessible guidance counselor, and a school social worker who helped families access resources. School Two used resources for fancy technological resources and placed the blame for test failure on the students. At the first teacher's meeting of the year pictures were shown of students who had failed and "should have passed". The principal was an ineffective leader and an entire grade level had quit the year before I taught at that school. Teacher turnover was high and teacher collaboration was low.
In terms of poorly used resources, I can attest to the resources provided to my special education classes and purchased with school finances yet obviously given no thought. As a preschool special education teacher I had no need for the stacks of lined writing paper I received, or the scissors (heaven help me if I give a three year old standard scissors!), or the folders, or the binders, or the pencils (in fact we had our pencil sharpener removed so little fingers could not explore) or poster paints. What we needed and had to beg, borrow, and steal to get were things like construction paper, finger paint, velcro, batteries, and cleansing wipes. My classroom for children with multiple and severe disabilities had more writing paper, crayons, markers, scissors, notebooks, pencils, workbooks (!), glue, and poster paint than I could have used in three general education classrooms but we had no batteries for our battery operated toys and switch devices, no cleansing wipes, no adapted writing devices, no slant boards, no devices for the visually impaired, no construction paper, only three working push button communication devices for a class of 7 nonverbal students (so 3 at a time could communicate), no adapted computer until I brought in items I had received from a grant while teaching preschool, no velcro, etc. Each year I taught I spent an average of at least $500 of my own money to supplement the resources, or lack of resources, provided to me by the school district.
These are just some examples from just two and a half years of teaching. My teaching was interrupted by becoming disabled, but had I not I was planning on quitting with the district at the end of the third year with School Two even though I would have obtained the almighty tenure because I was so disillusioned. I was looking into private schools for children with disabilities that were less constrained by the public school attitude towards special education, where children came first regardless of perceived ability.
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Waiting For Superman

9:57 PM

This evening I curled up on the couch with my laptop and favorite blanket and watched the documentary Waiting for "Superman". I must first note my potential bias as having been a teacher and having a vested interest in the education system. That said, this documentary was heartwrenching in capturing the failure of the American education system. No child or family should have to pin their hopes on receiving a decent education on a lottery drawing because everyone from the parents in the neighborhood to the administration at the school know the local school is no place for a child. When money has failed and legislation has failed, thank you No Child Left Untested (No Child Left Behind) then something else must change. What worked 50 years ago is not going to work today. The first thing that every teacher, administrator, policy maker and legislator must agree upon is the belief that every single child regardless of preconceived notions of failure is fully capable of learning and succeeding. The next thing that  needs to be done is to get rid of the obstacles to radical change. Teachers unions are far too powerful in their ability to cripple efforts to make radical changes to how we educate children. I do disagree with merit based pay based upon the current assessment system as the testing completed is prejudiced against ESL learners, children with disabilities, and children from different backgrounds. I am all for eliminating tenure and making teaching like every other job - if you fail to do your job up to expectations then you lose your job. No free rides just because you made it through two or three years. We need to look at the schools that are succeeding, the radical schools that are breaking all the rules and defying all of the odds and learn from them. If we don't start to apply the lessons they offer to us, we are soon going to cease to be a superpower in the world due to a lack of educated populace. I would totally recommend this movie for any parent, anyone who cares about a child, or anyone who cares about the future of our society.
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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.
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