Today I was accused of being a troll. Really not a big deal, I've been called far worse in far more polite forums. What bothered be about this was the context of said name calling. It was a reply log to an article about something exceptionally close to my heart. A 3 year old boy with autism who was subjected to a 5 hours ride from his school to his home; a trip that would usually take his parents 20 minutes. A dear friend of mine posted his own scathing article; well written, composed (considering the subject matter, he is al so a parent of a son with autism.) Along with the usual platitudes, "Oh my GOD.....That's horrific......if that was my child," I could easily pin point those with children with Autism and special needs comments.
Then, there were the others
You see, I have been spoiled. I am in a private group for parents of children with Autism. I have several face book and twitter friends and followers who just get it. I have cut out all those that are cruel, or refuse to learn or understand.
Showing posts with label reflection. Show all posts
Showing posts with label reflection. Show all posts
Monday, October 20, 2014
Saturday, October 20, 2012
Hey Bipolar Bear
In a previous blog a long time ago I referred to Jacob's Mood Disorder as Bipolar Bear. He was in the midst of a manic episode and I knew where it would end. I was spot on too; it ended up with an emergency appointment and a swift medication juggle. Here was my dilemma, I was delighted he was receiving the treatment he needed and simultaneously traumatized that once again we had barely escaped a psych ward admission. We've avoided it thus far, really minimally avoiding that threshold between outpatient and commitment. He's still little though.
He was an even littler boy then. Yet today I knew from the moment I heard the sun, my bear is again sick. There is a 'normal' state of silliness and hyperactivity before his Adhd medicine focus's him. Today was different. I heard that scream, that maniacal laugh, that racing thump of ball and heel along hallways, and immediately my throat constricted and my stomach formed an introverted knot. Remember, Jacob has co-morbid disorders. Autism, Adhd, Bipolar Disorder.
They Coexist like a Russian nesting dolls. Jacob's nesting doll is not finite, it's not fixed, no one neurology is bigger or smaller than the other. They hold hands and dance, twisting their pathology like a twisted ribbon on a Maypole. His dolls dip in and out of one another, they overlay, separate and return; a psychological osmosis moving though each other. His brain and neurology strike cruel tricks, cast riposte and shadow.
Today it was not my Jacob, today the doll's spoke, not my bear, I only heard the dolls. Over 13 hours they laughed, screamed, cried, sobbed, raged and finally slept under the gaze, yes tears, remorse and soothing rub of nails on a 12 year old boy's little back. His body relaxed, slack and soft, and finally my bear slept.
Tomorrow the doll's and I need to talk.
Sunday, May 27, 2012
Different is OK!
I am prone to the odd documentary or even feature where the protagonist or central theme involves autism. Tonight I just finally finished "Dad's in Heaven with Nixon." Yes, alright, I'm more than prone, blame it on my back ground in Film Studies and having three silly Aspie beans. Most films and documentaries about Autism are hit and miss. One I may have been angsting for might be rather disappointing, while one that I stumble upon purely accidentally is flat out enlightening. The reality is Autism and film has has a rather "interesting" history.
I think this is where I am expected to laud the acting ability of Dustin Hoffman in Rainman. Forgive me if I don't. It may be exquisitely acted, have a fantastic sophomoric dalliance with relating to a person with autism, but please people it is an extreme, so far to the fantastical edge of reality it really has no place in the muck and mire of Kanner's Autism, Asperger's Syndrome, Pervasive Developmental Delay, Pervasive Developmental Delay (NOS), Retts Syndrome, Fragile X and yes, ADHD.
See what I did there? I took the perfect isolation of a Hollywood reflection of what so much of the public still consider's Autism and just bombarded you with real diagnostic reality.
Many of my compadres in blogging crime have already written about the impending changes in the DSM (Diagnostic and Statistical Manuel of Mental Disorders). The DSM was envisioned just before the end of WWI. I can only assume the pervasiveness of Freud, Jung and the burgeoning of psychiatry as a legitimate field was finally permeating. Unfortunately it certainly didn't mean the new born DSM was all that helpful. Still, it was the only real starting point modern day psychiatry had in terms of cohesive understanding. If I were to dissect each DSM and it's tangents I'd be here for years, into two Phd's and you would all be long gone screaming into the wilderness.
What I do want to focus on is what happened between 1980 and today. The DSM III emerged the year the US boycotted the Olympics (just thought I'd throw that in there, well, because I can). Sometime around 1986 Homosexuality was removed from the DSM as a mental illness; perhaps that may give you an inkling as to the sludge still stuck to the moral and well being of these supposed objective specialists.
The DSM morphed into it's fourth Doctor (Nerd speak), in 1994, a mere three years after Asperger's Syndrome was formerly introduced to the English Speaking Psychiatric world by Uta Frith. Never mind, the syndrome was named after it's original identifier, Han's Asperger in 1944. Unfortunately, he had the audacity to be Austrian, speak and publish in German right at the end of WWII. Who knows what other brilliant mind's work was ignored at the time. Miracle his work was found and researched.
From the early 1990's thousands of children, adults, families of deceased relatives have been able to put a face to the way these brains worked. Give it a name, accept it's not a fault and try to move on. Do you remember the awkward kid in school? I know you do. The one that talked odd, perhaps had monotone inflections, talked in a monologue about his or her personal fascination. They may have been non Athletic, bullied in the locker room or the changing room, maybe you egged it on. They just weren't 'normal.' If you say no, I see brown brimming in your eyeballs. I can say now, it's ok, you were a kid too. No one suggested you to lay off, step up or ask that kid to sit with you at lunch.
There is nothing as satisfying as having lived with a neurological or mood disorder all your life and finally it be explained as organic, developmental, not typical, but much more important, NOT YOUR FAULT! Once upon a time Mother's were blamed for their infant's autism, due to Refrigerator Mother's. They supposedly didn't hold or bond enough with their children. Please note it was the 1950's/60's and no one was calling out Refrigerator Father's.
The DSM V will be published officially in May next year (2013). From what I can gather, (remember it's a blog, not a news reel) all genetic connections to Autism shall also be dropped from the DSM. There's an argument on both sides here. I know in my son's self contained classroom, he is moderate Autistic, seeping into Asperger's; he also has significant challenges with a mood disorder and Adhd. Not at all uncommon. He has classmates with Rett's Syndrome, Fragile X and Tubular Sclerosis, yet all benefit from similar special education instruction. Come the advent of the DSM V those with genetic disorders lose all DSM notice and all other's are lumped under Autism Spectrum Disorder (ASD).
For two of my three special needs children they will qualify under the new DSM V. It's ok for them. My youngest likes to play with the edges of Asperger's and as she grows I could certainly see a burgeoning Aspie diagnoses. However, under the DSM V's guidelines most probably not, as Asperger's will be gone. Will she lose out? Will she do ok no matter what? How do I know, all I do know is another possible bridge, another future support has been erased for her. Where will our fringe children go when all the rope ladders have been cut? I would hope, they go to your children. Why? Because perhaps you have taught them that classmate that talked odd, perhaps had monotone inflection, talked in a monologue about his or her personal fascination, was not athletic, and bullied in the locker room or the changing room, was just different. Different is ok, it's more than ok! Oh and she'll do his math homework for fun ;-)
I think this is where I am expected to laud the acting ability of Dustin Hoffman in Rainman. Forgive me if I don't. It may be exquisitely acted, have a fantastic sophomoric dalliance with relating to a person with autism, but please people it is an extreme, so far to the fantastical edge of reality it really has no place in the muck and mire of Kanner's Autism, Asperger's Syndrome, Pervasive Developmental Delay, Pervasive Developmental Delay (NOS), Retts Syndrome, Fragile X and yes, ADHD.
See what I did there? I took the perfect isolation of a Hollywood reflection of what so much of the public still consider's Autism and just bombarded you with real diagnostic reality.
Many of my compadres in blogging crime have already written about the impending changes in the DSM (Diagnostic and Statistical Manuel of Mental Disorders). The DSM was envisioned just before the end of WWI. I can only assume the pervasiveness of Freud, Jung and the burgeoning of psychiatry as a legitimate field was finally permeating. Unfortunately it certainly didn't mean the new born DSM was all that helpful. Still, it was the only real starting point modern day psychiatry had in terms of cohesive understanding. If I were to dissect each DSM and it's tangents I'd be here for years, into two Phd's and you would all be long gone screaming into the wilderness.
What I do want to focus on is what happened between 1980 and today. The DSM III emerged the year the US boycotted the Olympics (just thought I'd throw that in there, well, because I can). Sometime around 1986 Homosexuality was removed from the DSM as a mental illness; perhaps that may give you an inkling as to the sludge still stuck to the moral and well being of these supposed objective specialists.
The DSM morphed into it's fourth Doctor (Nerd speak), in 1994, a mere three years after Asperger's Syndrome was formerly introduced to the English Speaking Psychiatric world by Uta Frith. Never mind, the syndrome was named after it's original identifier, Han's Asperger in 1944. Unfortunately, he had the audacity to be Austrian, speak and publish in German right at the end of WWII. Who knows what other brilliant mind's work was ignored at the time. Miracle his work was found and researched.
From the early 1990's thousands of children, adults, families of deceased relatives have been able to put a face to the way these brains worked. Give it a name, accept it's not a fault and try to move on. Do you remember the awkward kid in school? I know you do. The one that talked odd, perhaps had monotone inflections, talked in a monologue about his or her personal fascination. They may have been non Athletic, bullied in the locker room or the changing room, maybe you egged it on. They just weren't 'normal.' If you say no, I see brown brimming in your eyeballs. I can say now, it's ok, you were a kid too. No one suggested you to lay off, step up or ask that kid to sit with you at lunch.
There is nothing as satisfying as having lived with a neurological or mood disorder all your life and finally it be explained as organic, developmental, not typical, but much more important, NOT YOUR FAULT! Once upon a time Mother's were blamed for their infant's autism, due to Refrigerator Mother's. They supposedly didn't hold or bond enough with their children. Please note it was the 1950's/60's and no one was calling out Refrigerator Father's.
The DSM V will be published officially in May next year (2013). From what I can gather, (remember it's a blog, not a news reel) all genetic connections to Autism shall also be dropped from the DSM. There's an argument on both sides here. I know in my son's self contained classroom, he is moderate Autistic, seeping into Asperger's; he also has significant challenges with a mood disorder and Adhd. Not at all uncommon. He has classmates with Rett's Syndrome, Fragile X and Tubular Sclerosis, yet all benefit from similar special education instruction. Come the advent of the DSM V those with genetic disorders lose all DSM notice and all other's are lumped under Autism Spectrum Disorder (ASD).
For two of my three special needs children they will qualify under the new DSM V. It's ok for them. My youngest likes to play with the edges of Asperger's and as she grows I could certainly see a burgeoning Aspie diagnoses. However, under the DSM V's guidelines most probably not, as Asperger's will be gone. Will she lose out? Will she do ok no matter what? How do I know, all I do know is another possible bridge, another future support has been erased for her. Where will our fringe children go when all the rope ladders have been cut? I would hope, they go to your children. Why? Because perhaps you have taught them that classmate that talked odd, perhaps had monotone inflection, talked in a monologue about his or her personal fascination, was not athletic, and bullied in the locker room or the changing room, was just different. Different is ok, it's more than ok! Oh and she'll do his math homework for fun ;-)
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