Monday, March 10, 2014

Peter Lanza and Asperger Syndrome

Just once I'd like to see the media portray Asperger Syndrome AS IT ACTUALLY IS. I have to give props to Adam Lanza's father, Peter Lanza when he stated , "Asperger's makes people unusual, but it doesn't make people like this."

However, at the same time her refers to those with Asperger's as being "arrogant". He states that all the kids in the Tech Club at the high school are "weird and smart". He stated that Adam thought "he could control her (his mother) more than he could control me."

Adam's mother stated that, "“While Adam likes to believe that he's completely logical, in fact he's not at all, and I've called him on it."

A psychiatrist that Adam saw, Paul J. Fox, implied that home school equated with "isolating him from his peers."

The reporter, Andrew Solomon, commented on "violence by autistic people" when there is an invasion of personal space and then follows the statement with a comment on committing crimes.

Lastly, the reporter stated, "Both Autism and psychopathy entail a lack of empathy."

So, where do I, the mother of two children on the Autism spectrum stand? Where do I, the mother of a teenage boy of Aspergers, other of an 8 year old with High Functioning Autism, and friend to many adults and children Aspies stand?

First, I have yet to meet a child with Asperger Syndrome that is arrogant. Let's take a moment to define "arrogant". Google defines it as, "having or revealing an exaggerated sense of one's own importance or abilities." Yet, this article goes on and on about how Adam felt that he couldn't do anything right. How he was frustrated and helpless at his inability to complete tasks he should have been able to do, tasks his peers could perform. NOTHING in the article, or anything I've read about Adam portrayed arrogance. Show me just ONE child with Asperger Syndrome that is "arrogant". Just show me one!! You'll be hard pressed to do that.

Peter Lanza also said that Adam felt he could control his mother. Yet again hasn't all the information about Adam show that he felt no control at all? Again, show me one child with Asperger Syndrome that seeks to control others. It doesn't happen. They want to be able to control their own environment, just like neurotypicals. Yet, Asperger Syndrome makes it more difficult to do that.

Adam's mother stated that Adam felt he was completely logical, which he wasn't. Yet, the majority of children on the Autism spectrum are VERY logical and take everything VERY literal. If you stop to look at things from their literal perspective, then it is VERY logical. The more time you spend with those that are on the Autism spectrum, the more you realize that it is us, the neurotypicals that aren't logical. It is us, the neurotyps, that use phrases that do not make sense (it's raining cats and dogs). It is us, the neurotyps, that base our decisions on emotions, that will change plans at the last second, and that can leave tasks half finished without skipping a beat. Which of us, the neurotyps or Aspies are more logical?

I won't even respond to the comment Paul J. Fox made implying that homeschool equates isolation. If the general public hasn't wizened up to this myth by now, than that's on them.

Violence by autistic people when entering their personal space.......... Yes, some children on the spectrum can not tolerate you're entering their personal space. Some children on the spectrum have no concept of personal space. I'm mother two children that exhibit both (one is the first, one is the latter). In this respect, they are just like some neurotyps I've met. Come on, we know the guy or gal that stands to close when speaking to us. We also know the guy or gal that will not allow you to hug them or get close to them physically. Asperger Syndrome is no different then neurotyps in being one way or the other. The difference comes in how that information is processed by the brain. Yes, my youngest child will resort to what could be deemed "violence" when you move into his personal space and stay there. He will invariably, after communicating his intense discomfort in a variety of ways (verbal and/or non-verbal cues), push you away from him. If you come back, he may hit you. Yet it is impulsive, he doesn't think it through, he doesn't plan it, and he doesn't even do it in a way to cause damage. It is as much reflex as your jerking away your hand from a hot flame to avoid pain. Being in their personal space causes them pain and they are reacting accordingly. Yes, there have been cases of police officers stepping into a person with Autism's personal space while speaking to them in a very loud and raised voice, and the person striking out in an attempt to restore their personal space. However these were also cases where the law enforcement officer was unaware of the person being on the spectrum and approached them in a way that frightened, confused, and seriously terrified the person. Still, shouldn't the reporter be more specific? Why would the reporter imply that Asperger syndrome is synonymous with criminal violence? The reality is that studies have not empirically shown that there is a higher prevalence of violence among those with Asperger Syndrome. What has been proven is that more males with Asperger Syndrome show violence than women with Asperger Syndrome but this is simply because there are many more men with Asperger Syndrome then women. Many specialist have verified that Autism Spectrum Disorders DO NOT result in higher criminal activity.

"Both Autism and psychopathy entail a lack of empathy." Really? Where oh were did this research come from? It has been determined that studies done regarding empathy and ASD did not utilize testing tools to accurately measure empathy. People with ASD think and feel differently then neurotyps and therefore the tests that register empathy in neurotyps did not give an accurate result when tested on those with ASD. A study that was done addressing this states that, when tested with a way that truly represents those on the spectrum and empathy, the measurements are comparative to neurotyps. Of course, I've seen my child cry for HOURS because he made a comment that someone took offense at. A comment that was purely logical and meant to cause no harm or disrespect. I've seen the empathy in those tears.

Unfortunately, there will always be those that jump on what the media states and bases their assumptions on that. There will be those that, due to the media's portrayal of Asperger/ASD, will believe that Autism equates violence.


I will not be one of those. Please, join with me in refusing to accept what is portrayed by media as fact and instead determine to dig for the facts yourself and see the truth in all matters.  

Friday, February 21, 2014

Mel's Pain Scale

Mel's Pain Scale




    0. Pain is constant but at a level I can push through and accomplish tasks. Completely able to “fake” not being in pain in an effort to prevent people from treating me differently than they would a typical person.

    1. Pain is constant and I'm still able to accomplish tasks, but I must take frequent breaks throughout the day. Still able to “fake” but usually make excuses when taking breaks such as, “I'm just tired” or “I just need to catch my breath”.

    2. Pain is constant. I'm accomplishing tasks but am having to take breaks after each individual tasks, such as loading the dishwasher. My ability to “fake” is limited, and I tend to only visit with those that I know very well.

    3. Pain is constant and is now inhibiting me from accomplishing most tasks. I have only a few spoons (refer to The Spoon Theory) and have to determine what my main priorities are. I try to make spending time with my children the priorities, but often necessities such as grocery shopping or work over ride. I can only “fake” for very short periods of time (5-10 minutes) but those that know me very well are able to determine my level of pain and start asking me what I need and how they can help (yes, this annoys me and I'm still learning how to accept help)

    4. Unable to “fake” not being in pain. Laid up in bed. Muscles in esophagus, lungs, and throughout body are in painful spasms resulting in difficulty breathing, swallowing, walking. I'm giving my wheelchair and my walker the evil eye, realizing the love/hate relationship I have with them. I'm not leaving the house and if I do, I'm a curled up bumbling mess.

    5. This stage is, simply put, “Why is it humane to put an animal out of it's misery when in pain, but not a human? The word humane has human in it for crying out loud!”

Thursday, January 9, 2014

Moments

 I have come to the conclusion, most recently in my 37 years, that life is made up of moments and nothing more. We choose which of those moments to cling to. We ourselves determine which of those moments will mold us and direct us. Some may choose to grasp moments of negativity, forever letting those moments hold them hostage and sway their decisions. I was one of those people for many years.

Then, I became sick. I spent a year and half in bed with a nurse caring for my most intimate needs. In despair, all I could see was that I was no longer a mother to my children, a friend to others, a daughter to be proud of, a person of worth. My young children were growing up on their own. I was not able to guide them, direct them, supervise them. My heart was crushing within me. I was told I would not make it past 10 years. I was suffocating. Although my illness should have given me a better understanding of the immune system issues my son had fought through his life, I couldn't get past the moments I clung to of negativity.

The moment the doctor told me I would never be better.

The moment my friends abandoned me stating that they could not stand to see me in so much pain.

The moment my son and daughter stood by my bed crying because they wanted to cuddle but their touches brought me such immense pain I would scream out, despite my deepest resolve not to.

Then, I had a nurse. A beautiful woman by the name of Shirley. I doubt she even understands the impact she had on me. Mrs. Shirley refused to accept the doctors doom and gloom predictions. “Imperfect men”, she would tell me. “Only God knows everything”, she would say. For each negative thing I had to say about the state of my body, she had three more positive things to say. Through persistence and unconditional love, this woman pushed me to stand up for myself. She pushed me to tell the doctors “No More” when I felt the medications were creating worse damage. Once I refused the doctor's 21 prescriptions, she pushed me to work on moving my body. Again, I clung to moments.

The moment that she held my elbows up so that I could wash my own hair.

The moment I sat upright an entire evening propped on pillows in my bed.

The moment my children learned if they ran a light finger along my arm, I could tolerate their touch.

Yet, I didn't realize yet that life is made up of moments. I sought a physical therapist that would help me walk again. When the therapist came to the house, I clung to that moment.

The moment I was told, “You are living in denial. You are never going to get better. You are never going to walk. Until you accept this, you will never be happy again.”


Yet again, Mrs. Shirley came to my rescue. I again grasped hold of moments.

The moment I sat at the dining room table, watching my very young children help Mrs. Shirley prepare a meal.

The moment I was able to put a bit of my food into my own mouth.

The moment I took my first step.

Yet still, I didn't realize that life is made up of moments. As I moved towards life, I still held onto so many negative moments. Highlights of my life, moments that should have been treasures, became my anchors. The moments of my past became what I clung to.

The moment I hiked that gorgeous waterfall.

The moment I drove a stick shift down a curvy road at sunrise.

The moment I swam across the lake and back.

The moment I saw my first paycheck as an order selector.

The moment I ran and played with my children on the playground.

The moment I spent my night dancing.

My life was held in moments.....of the past. I was left with my present suffocating still. My choices in life were based off the moments of my past. The moments I could no longer relive. Those moments held me hostage and resulted in bad decision after bad decision.

One of those decisions resulted in my becoming pregnant with my third child. In an attempt to provide my children with something I felt I no longer was able to give them, I dove into a relationship. A business deal that ended sourly. However, with the pregnancy my rheumatic diseases that had left me so terribly crippled went into remission. I still fought other chronic illnesses and pain, yet I was grasping such beautiful moments.

The moment I went camping for three months on the AT as a pregnant single mother of two.

The moment I hiked a beautiful waterfall.

The moment I drove a car down beautiful, curvy, mountain roads.

The moment I swam in the swirling waters at the base of the falls.

The moment I hiked a mountain to view the sunrise.

The moment I watched the sunset over the mountains from the fire tower.

I clung to these moments as my child grew within me. I battled some seriously difficult months where pain mounted from my other chronic health issues, yet eventually they would ebb to the edges of my being, allowing me to do much of what I enjoyed. I realized during this time that on the bad days, I must find my “happy thought”, my moment. On the bad days my moments became seemingly small. Moments that I could grab from where I laid in bed.

The moment a caterpillar crawled along my windowsill

The moment a humming bird nipped at the feeder

The moment the sun shone through the leaves

The moment my children's laughter would fill the morning.

However, I still did not realize that my life was made up of moments. Even in the midst of having to find a moment to cling to before I could start my day, I had no realization of that fact.

There were other moments I grasped and clung to that defined who I was and forever altered the decisions I would make.

The moment the doctor said, “Your son's (Pookie) diagnosis is High Functioning Autism”

The moment the doctor said, “Your son (Keegan) has Asperger Syndrome.”

The moment he said, “I'm leaving you, I'm never coming back, I never loved you. Your health problems and your kids special needs are too much for any husband to handle”


However, a year and a half ago, I came out of remission from my rheumatic diseases. I felt the change within me and, though I sought to deny it to myself, I knew what was happening. I pushed myself so very hard the last several weeks to provide my children with moments.

The moment my children and I visited Lake Lure

The moment I hiked the glorious mountain trails with water bottles and children in tow

The moment I lounged on the deck watching the kids play in the pool

The moment I walked the beach with my children looking for sea shells

The moment I swam in the ocean as the waves threatened to knock me over

I didn't realize that life was made up of moments. Yet, there were more to come.

The moment I heard, “I'm sorry to say, you were right. Your ANAs are elevated again. We need to discuss treatment”

The moment my closest friend said, “Refusal of treatment is the same as refusing to be a mother to your children”

The moment my mother said, “It doesn't matter if the medicines make you sick, you need to live as long as you can for your children.”

The moment my friends walked away because they couldn't stand to see me in pain

The moment my children's faces locked in fear as I told them the news of my coming out of remission

The moment the doctor said, “6 to 12 years is the average life expectancy for someone that doesn't respond to treatment. Without treatment, it may not be that”

The moment tears streamed down my face as I told my children, ages 6, 12, 15 that I was refusing treatment and what that meant.

I still didn't grasp that life is made up of moments. I could only, once again, cling to the moments of a past that no longer seem to relate to me.

The moment I paid the bills each month in full

The moment I would get a job and nothing stopped me from doing it

The moment my son's neurologist told me he had advanced so far due to my pushing for early intervention in his treatment.

The moment I had taken a mortgage out on a home

The moment I had taken my kids to a restaurant

The moment I took my children to a drive in movie

The moment our family went ice skating

The moment we had hiked and saw the baby deer with spots

I was once again living in the moments of the past, allowing it to hold me hostage to the present and the future. I started a “Bucket List'. Each day I added new things. I had no idea that there were so many experiences I wanted to have. Now that my days were numbered, I felt compelled to do so many things. I would have an experience and jot it down in my bucket list journal after the fact.

As the months passed by, I begin to notice that each thing I listed in my bucket list were moments. I slowly began to see that everything in life was made up of moments. That moments is what we had, what we grasped, what moved us. I realized that I wanted my life to be made up of moments each and every day. I set out to create moments. These moments weren't the same as those I had when I was healthier, yet they were moments to be treasured just the same. As I actively begin to create moments, I was able to reflect on moments from the past with joy. My moments today are different.

The moment I feel the water cascade over my body as I sit on the shower floor

The moment I lie my neck on the heating pad at night

The moment my child puts his arms around me, squeezing just the right amount not to cause pain

The moment I can open a bottle by myself

The moment I'm able to shave my legs

The moment I'm able to blow dry my hair

The moment I'm able to play trains with my son

The moment I'm able to sing along in the car with my children

The moment I'm able to stand in the rain as my children dance and play around me

The moment I'm able to look out my window and see the moon filter through the leaves

My moments are different, yet they are mine. They are beautiful in their own right.

Last night I had a moment that I wanted to share with you, a moment in some way that I already have shared with you. Last night I watched “The Intouchables”. Watching this movie was filled with moments for me.

The moment in the beginning of the film when I wondered, “How can you be so humorous about your condition?”

The moment when he handed him the phone, forgetting that he was bound by invisible chains in a prison that was not of his own making and realizing how delightful it is when someone sees you and not your disability.

The moment I realized that one of my boyfriend's greatest appeals is that he sees me and not my disability, even as he cares for my needs.

The moment when he spoke of pity and I understood so well.

The moment when he saw Paris at night and realized that life is about moments.

The moment when he had to stand up to his daughter, presumably feeling as inadequate as I do when I wonder if I'll be able to enforce anything I say to them.

The moment his phantom pains struck and he stood by his side to comfort him, just as my boyfriend has done for me when the pain is so unbearable that I wish someone would knock me unconscious.

The moment she walked up to his table

The moment he para-sailed, refusing to let his disabilities keep him from that which he loved and which broke his body to begin with.

The moment tears streamed down my face because I remembered that I am not alone, that others are here with me, sharing these moments.

Each day still adds more moments, some are saddening and have a tendency to want to weigh you down.

The moment he tells you that he just woke up and decided he didn't care about you anymore and wanted to break up.

The moment when you realize you are taking substantially less than something is valued at, simply because you must pay the bills that are due for disconnect.

The moment when you consider moving to a warmer climate because you can not tolerate the pain of the cold any longer.

Yet, in the midst of these moments, you must choose which ones to cling to. I choose to cling to other moments.

My children and I share a solid and inseparable bond.

I have friends that truly love and respect me.

Our most basic needs are always met somehow (food, clothing, shelter)

An angel gave my children a Christmas they otherwise would not have had.

Our family helps others.

I love myself.






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