Monday, February 6, 2012

AgCC & Me

Agenesis of the Corpus Callosum (ACC) is a congenital birth defect in which there is partial or complete absence of the corpus callosum.The corpus callosum consists of 200 million axons connecting the two hemispheres in the brain. The corpus callosum does not develop normally during pregnancy. The development of the fibers that would otherwise form the corpus callosum most often become longitudinally oriented within each hemisphere and form structures called Probst Bundles.
Roughly one person in four thousand that is born has some type of collosul disorder whether or not they know it.   Because it is a spectrum type disorder the symptoms do vary from individual to individual, some like myself go through half a lifetime before receiving a diagnosis.  For myself it answered many many questions; big "why" questions. For others they functioned adequately well in life, but always knew 'something' was off. Still others had more serious diagnoses of a physical order, and others nothing at all.

Signs and symptoms of AgCC and other callosal disorders vary greatly among individuals. Some characteristics common in individuals with callosal disorders include vision impairments, low muscle tone (hypotonia), poor motor coordination, delays in motor milestones such as sitting and walking, low perception of pain, delayed toilet training, and chewing and swallowing difficulties.o much for technicalities...

Laboratory research has demonstrated that individuals with ACC have difficulty transferring more complex information from one hemisphere to the other. They also have been shown to have some cognitive disabilities (difficulty in complex problem solving) and social difficulties (missing subtle social cues), even when their Intelligence Quotient is normal. Recent research suggests that specific social difficulties may be a result of impaired face processing. The unusual social behavior in childhood is often mistaken for or misdiagnosed as Asperger syndrome or other autism spectrum disorders. Other characteristics sometimes associated with callosal disorders include seizures, spasticity, early feeding difficulties and/or gastric reflux, hearing impairments, abnormal head and facial features, and mental retardation.

Many are first diagnosed as autistic and then it is discovered that they had ACC, and had that diagnoses dropped, because they did not meet the DSM criteria for an autism diagnosis. Others like myself had that diagnoses given in addition to cACC (complete Agenesis of the Corpus Callosum.)

This disorder has been known about for a long time, yet is only now beginning to be researched as diagnoses requires a proper brain scan...until recently it was not an easily gotten diagnoses.  I grew up with varied social, emotional and communications difficulties, and as a result from the age of 3 began the roller coaster of multiple failed diagnoses, a failure of the educational system to continue my average expected education, decades of social maladapted behavior, shame, guilt, and all out suffering.

Many of the symptoms associated with this disorder continue to plague adults throughout there lives, albeit we do learn to adapt and some thrive regardless. There has been little if no study at all of acollosal disorders until recent years for reasons noted above.

This site will express how I investigate disorder and its deeply rooted effects of my life, how learning about has changed and continues to change my life, and what I learn about myself.  Hopefully it will benefit others out there that are dealing with this condition in themselves or a loved one.

While all of this is true you might question my choice for the title of my blog.  Its simply really...I have always felt like two people in one body, fully aware of the other but not able to communicate, like two brains in one body...but my experience is that I am a whole human being, beginning to accept that my wholeness looks different than yours, perhaps, and I strive to no longer let this disability define me solely on its own basis.

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