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

Teacher without a class

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I have known that I wanted with all that I am, with my very being, to be a teacher since I came to the conclusion that there was not a high demand for fairy princesses in the modern world. Never did I waver from this conviction, and by sixth grade after working during my own free time (I did a lot of independent study) and recesses in the special education classroom in my school I knew that I wanted to teach young children with special needs. This was as much a part of me as the tangle of red curly hair that I cursed every morning as I tried to undo the knots it magically wove overnight and my need for books that rivaled my need for oxygen. Due to the gift of multiple blood clots in my left arm that led to a small stroke just after college graduation, and then a prolonged debate over heart surgery, I was not able to begin teaching as soon as I desired but I taught an audience of one. My Little Bit was my student and together we had great adventures, and she reinforced for me my understandings of early childhood development. I taught her sign language at 6 months of age and regretted it (just a bit) when she used it to tell me exactly what she thought. :) Then my years of teaching began and I was living my dream. I was teaching some of the most incredible, amazing, heartbreaking, perseverin, stubborn, independent, wise, spirited, challenging, rewarding, joyful, creative children who kept me constantly thinking in the moment and using creativity to problem solve and find the best ways to meet their individual needs and play to their individual interests. I can name every child from my three classes that I was blessed to teach, although I must say my average class size was 8 children, but I can also remember most of the children from the afternoon preschool classes for those two years too. It helps that I took hundreds of pictures - and then at the end of the school year gave each parent a CD of the best pictures of their child and a framed copy of my favorite picture.
So this year as kids are getting ready to go back to school, as I see little ones so excited and older kids slinking around with the attitude of being too cool for all of this my heart aches. I have missed preparing my classroom for my children, with the special little areas designed for learning and made accessible in every way possible. I have missed turning a blank and average classroom into a place that is welcoming and intriguing to my children, something that does not feel at all institutional in design or remind them of other concrete brick buildings like hospitals. I have missed opening supplies and preparing them for students to use, and imagining the wonderful creations that will result from their experiences. I miss reassuring parents that I have dealt with just about everything at this point (seizures, diastat, oxygen, trachs, g-tubes, epipens, reflux, feeding pumps, special oral feeding, braces of all sorts, allergies, behavioral issues, sensory issues) but that I will be very aware of the needs of their child. Last year we had basically a mobile crash cart when we left the classroom that consisted of oxygen, two different diastat medications for two different children (clearly labled and separated), an epi-pen, emergency supplies for any g-tube issues, a towel to lay a child on if they were to have a seizure, plenty of rubber gloves, a CPR mask, and a first aid kit. Everything but the oxygen went into a brightly colored backpack, so we did not stand out too much but we also never forgot it while I was there!
Most of all, I miss my kids. I miss teaching them, I miss working so hard with them and watching them put so much effort into mastering a skill, and I miss the huge celebration when they achieved the goal. I miss the laughter and smiles that were an inevitable part of every single day because you can not work with children and not laugh and smile and have fun. I miss watching their joy of discovery and the wonder when something new suddenly makes sense. I miss being able to see the world from their perspective again and being able to take them by the hand and show them a world that is just as much theirs as anyone else's. I miss watching the astonishment of successful communication and the pride of accomplishment. I miss teaching, I miss caring for my kids, and I miss knowing that each day they are growing and learning and I am a part of it. I am a teacher without a class and it feels as if I am missing a part of myself. 

Any chance at all - after you get your new chair? Would you be willing to teach if not having the whole schmere of a classroom? Could you work with another 'Little Bit'
- a private teacher/tutor situation?

I don't know where you live. I saw a post on a school that is sooo special, I don't know how they could refuse to accommodate a teacher like you. Barbara

I could teach regular education if I went back to school to get a general education certificate, or "resource"/"learning disabilities" again if I went back to school to obtain the correct certificate. I would love a private teacher/tutor situation, but with the need for insurance and not being able to qualify for individual insurance would have to wait and see what Obama can pull off. All of my experience has been either with children ages 3-5 or 5-8 (severe disabilities), so working with older children feels awkward and a bit unnatural to me. Yet in college I loved tutoring a 12 year old with Down syndrome in reading (high 3rd grade level) and Math (3rd grade level). A lot to think about. :) I am giving myself a year to adjust, to learn how to live this new life, and to hopefully find answers and then I am going to evaluate exactly what my plans are for going back to school for a new career. It seems to make sense to me.

You are by far the most mature person I have encountered in a long time. "I am giving myself a year to adjust" - can't tell you how many people I think could have helped themselves by just looking beyond the difficulties of the moment.

I met a woman once who had a rare adult onset of progressive spasticity. I find it hard to believe that a definitive diagnosis for you is not possible (seems you've implied doubt with what you've been told - no?)


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.