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

A True Crayola Wonder

I find myself remembering a specific little girl that I had the honor of teaching as a practicum student in college, a little girl who at the age of three taught me lessons that I am still learning in my own life at the age of twenty eight. Josie was one of a kind, a brilliant just turned three year old with a twin brother who had significant disabilities. Josie was paralyzed from the mid chest down due to a spinal cord stroke as a premature infant, which impacted her diaphragm and thus her ability to speak loudly and clearly, but in all other ways of development she was above and beyond expectations. She was so patient with her brother, and she was his protector making sure that he was never overlooked at circle time or during activities in the classroom.
One day during free play in the classroom, otherwise known as barely controlled chaos, I observed that Josie was over at the fine motor/art center and she was methodically wheeling herself back and forth from the shelf to the table. What I saw amazed me. She had apparently been unable to obtain anyone's attention over the din of her peers shouts and laughter and yelling, so she decided to get the materials she needed by herself to draw. The paper had posed no difficulty, but the basket of crayons was too large and awkward for her to place on her lap and wheel over to the table. So instead she was putting one single crayon on her lap, wheeling over to the table, placing it beside her stack of paper, and then wheeling back for another color. I watched in amazement at her determination. She was not frustrated, she was not angry that it was taking her so long to do what another child could have done in a single grasp, she was not bitter. She was focused and proud of her ability to achieve her goal even if it took her more than a dozen trips to retrieve all of the colors she wanted. I had to sit on my hands to prevent myself from jumping in to "rescue" her. When she finally had every color she wanted and had secured herself before the table to begin coloring a smile brighter than any I had ever seen lit up her face as she surveyed what she had accomplished. She had done it - it may have taken a little longer, it may have been done a little differently, but she had done it! As she started to color, I slid into a chair next to her and we had the cutest little conversation.
Me: Josie, that is a beautiful picture! Can I color with you?
Josie: Sure! But you have to get your own crayons!!
Josie, thank you for teaching me how to get my own crayons, and how to be so proud of every success, and how to never give up when it seems like you can never move the mountain (or crayon basket). I was your student far more than you were mine!!

Well, thanks... I always need Rainbow Fridays...
the tears stayed in my eyes...
but the smile... well it jumped right off of my face!

"I had to sit on my hands to prevent myself from jumping in to "rescue" her."

Those opportunities of accomplishment are what build self-esteem and negate learned-helplessness.

Many make the mistake of assisting too early in the task and for too long in the child's life. Not easy for people to see this - more need to read this post. This blog. Thanks for writing, Bethany. Barbara

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.