Saturday, December 22, 2012

Changing Times...

I cannot but begin to deeply reflect on changes in the world regarding Agenesis of the Corpus Callosum.  I heard from several parents of very young ACC and pACC children, how incredibly important and helpful the article in Scientific American Mind really is.

To be clear, my contribution, (I feel) is quite modest, even with the expanded web information about my life and ACC.  I'm not sure but I think there was a half a dozen of us interviewed, and I think they treated the non-science parts, about the actual living with this, wonderfully.  I'm hoping that they will continue to treat and revisit Collusal disorders, developmental and neurological disorders such as Autism, Asperger's and AD(H)D, etc...

Yet, I do know, and quite personally how committed to fear and ignorance so many of older generations are about these types of things.  Admittedly, there are problems in America today, holdovers from Victorian thinking about the mind, the brain, behavior, emotions, mental, emotional, and developmental disorders  neurology, and even "medicine" in general.

In the light of current events in society, I cannot help but think about the murders of those children in CT.  Almost immediately there was all this (incorrect and inappropriate) accusations about the killer (I REFUSE to mention his name, I will NOT give him that) that feed into the kind of fear and ignorance I mention above.

First, for the uninformed, please understand...
Developmental disorders such as Autism Spectrum Disorder, Asperger's and neurological conditions such as pACC and ACC are not "mental illnesses."  

A developmental disorder is "any condition that appears at some stage in a child's development and delays the development of one or more psychological functions, such as language skill. Developmental disorders include psychological and physical disorders, for example autism or dyslexia. Developmental disorders are an impairment in the normal development of motor or cognitive skills that are developed before age 22. They are usually expected to continue indefinitely, and there usually is no cure."

As adverse to developmental disability, "mental illness is a term that describes a broad range of mental and emotional conditions. It also refers to one portion of the broader ADA term mental impairment, and is different from other covered mental impairments such as mental retardation, organic brain damage, and learning disabilities. The term ‘psychiatric disability’ is used when mental illness significantly interferes with the performance of major life activities, such as learning, working and communicating, among others.

Someone can experience a mental illness over many years. The type, intensity and duration of symptoms vary from person to person. They come and go and do not always follow a regular pattern, making it difficult to predict when symptoms and functioning will flare-up, even if treatment recommendations are followed. The symptoms of mental illness often are effectively controlled through medication and/or psychotherapy, and may even go into remission. For some people, the illness continues to cause periodic episodes that require treatment. Consequently, some people with mental illness will need no support, others may need only occasional support, and still others may require more substantial, ongoing support to maintain their productivity."

Clearly we are speaking of entirely different categories of things.  A person with or without a developmental disability can have (or not) mental illness, however a developmental disability is in no way to be confused as the same thing.

This brings me back to CT and the greater problem.  Please understand, I am neither advocating any particular politic I am stating history...; it is undeniable that President Ronald Reagan cut major funding for mental health, many tens of thousands of people with mental illness became the burgeoning homeless population in the United States of America. 

Even today our jails are filled with mentally ill people that could/would have responded to early intervention and treatment.

DON'T EVEN get me started on the state of things for the developmentally and neurologically disabled, I'll have to save that for another time.  And yes, the truth is we do not know all that much about the murderer yet (that we are being told, anyhow...)  Yet it really sparks my ire when people think the solution is "more guns."  What the HELL about screening?  I actually do believe in the Second Amendment, yet many things mentioned in it are clearly either irrelevant, or need to be interpreted and understood according to the current state of the Union.

Even if it were to turn out this adolescent man had a DD, my argument is similar.  By America hiding their collective heads in the sand in shame, over something as normal and natural as neurological, developmental, emotional and mental issues, is a VULGAR slap in the face to 20 murdered children that will never realize what they could have willingly, in many cases, remaining is WE that are at fault, we caused this horror to occur.

The fact is, in both categories, that of mental illness and developmental disorders, we have not only dropped the ball but hidden it in a closet thinking it will just go away.  Well, surprise people, it won't.  Oh, and the NRA (No Responsibility at ALL) wants to blame video games and arm teachers...WTF?

Many of you may not know that when a child becomes 18, whether DD or mentally ill, they are dropped from "the system" and there is little or no follow up or help to get them through life.

In my case, I was 46 years old before doctors discovered the congenital defect in my brain, past strokes and other things...YES, this changed my life...but the FACT IS, they HAD the technology (but not the understanding) to discover this, even when I was an INFANT, yet NOTHING was done.

my brain on MRI
I was having a brain and spinal cord-scan because of an (seemingly) unrelated neuromuscular condition that I have, and it was found (by the Chief of Neurology Kaiser Permenente South Bay California.  Yet, I would STILL have "relatives" who would tell me "I am a psychopath, a liar", and I am "making it up to get attention."  Hmmmm how the H E double hockey sticks do you "make up" an MRI, that shows I have a missing part of the brain, that I had strokes, that I have other malformations?

As T has said on her blog and I agree, this is "not even on my plate anymore."  If individuals choose to be ignorant, that only empowers me more to educated the masses.  I have been working with two editors and eventually will publish a book about living with Agenesis Corpus Callosum.   No guilt, no shame...only joy in being able to help others like myself.

I foresee a day when the next evolution in mankind's morality includes the acceptance of our neurological brain differences, the "different people" in society....begs the question, who isn't "different?"

I was going to further develop this thread, but am going to leave it open for comments (I think I've done that right, I have trouble with this new Blogger interface :(((((  )   Off now, to my big wonderful Life!

May all beings be happy
May all being be free from suffering
Peace p e a c e    p   e   a   c   e


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