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Road Rage on the AutismHWY?!

 

 

 

After my last blog post  The New Scarlet letter I was accused of   going on an attack. Really?!
Let’s examine the definition of the WORD attack:
1. To set upon with violent force.     NO, most definitely NOT.
2. To criticize strongly or in a hostile manner.    Well, Yes, yes I did.
3. To start, work on with purpose and vigor: attack a problem.   Exactly. The problem of continued disrespect of a cherished word by folks in our own community.
4. To begin to affect harmfully   Changing perceptions is only harmful to some. The people trying to keep others in “their place,” separated from them.
                                                                                                                                     imagesCAWPILCR
The Autism Sparkles page and blog does not like the word Autistic and when ”Queen Sparkle” boasts about that, it damages the community and those of us here at AutismHWY.com. We wrote a blog pointing that out. Is that violent, hostile, vigorous or harmful behavior? We think not. However  the self appointed Queen thought it was and set out to stir up a propaganda frenzy in the ensuing days. (It was a labor day delight!)  She wrote her own blog mischaracterizing many of my points Then melodramatically threatened to take her wondrous sparkles away from the internet (Oh my, how will we ever survive without them?)  Her ‘followers’ recruited droves upon droves of entities to come forth and save her from this horrible “attack” from AutismHWY!  She misrepresented my words and banned any corrections I tried to make to her victimized spin on things. Posting again and again and again about the hatred directed at her. Hundreds of presumptive commenters grew meaner and meaner begging her to stay and declaring that I was an evil, mean bully and a lot of other disgusting things. Branding us negative attacking “haters.” You get that picture. Very scary to see what a growing group of uninformed people will say in a moments notice at the coercion of some misguided “Queen.”
PLEASE!

PLEASE!

                                                                                                                                                                     

There were a few comments that were rational amongst it all. Like my favorite: ”All I saw was a women defending Autistic people.” Thanks random woman, you get it!  Or another fav, “Oh my, a pity party.” Thank you Jane S., right on target as always! Another good friend to AutismHWY Steve S. posted some great articles about ‘person first language’ theory written by talented Autistic Activists! (Extremely helpful if read!!)
Another young woman I had never heard of  messaged me privately during this unbelievable flurry of ignorance. This is what she wrote.

These cupcakes spark something a bit more substantive.

These cupcakes spark something a bit more substantive.

 “Hi, although I was not involved I wanted to tell you I completely agree with you about Autism Sparkles. I am Autistic, and there were many times she shunned me, because my Autistic point of view did not jive with her non-Autistic point of view. She cooed and “liked” over everything other parents would say, but completely ignored any input I gave. God forbid an Autistic person have the right to comment on Autism related matters! Anyway, thanks for speaking up about it.
 Well, she’s being dishonest about the situation. She is telling people that you accosted her solely for saying her child is “on the spectrum” instead of “Autistic.” Having been repeatedly offended by her in the past for various reasons I assumed this was inaccurate”
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That alone says it ALL for us. A group intent on positivity and sparkling encouragement? For whom? Autistic people and their family of supporters?…or just for families with the Autistic person pushed off in the background? Not as important as the parents yet again?
Lot’s of gooey and  sugary baby talk is served up daily on this page with pink cupcakes, princesses & sparkles along with moments of genuine love. However, when a status posting goes out of it’s way to make a self righteous point that the word Autistic will never be allowed to cross the lips of the status writer, in regards to her spectrum child- that says a lot. A lot that is not good, useful or helpful as we advocate for erasure of negative stereotypes. Stereotypes that have been hanging over the heads of Autistic people and their families for decades. Forget those stereotypes and consider the people. How can you negate any part of the child you love no matter how greatly they are, or are not affected? To us it seems like loving goldfish yet, hating the color gold?
Hey! LOVE all of me!

Hey! LOVE all of me!

We ALL know that when you proclaim you will never allow yourself to use a particular word. You are making a huge and strong statement. You are elevating the language you will use while belittling the language you won’t use. Everyone has the right to use and call themselves whatever they deem fit. AutismHWY.com was NEVER asserting otherwise. On the Spectrum, Autistic person, person with Autism. 3 ways of saying the same thing in our view ( and we believe the majority of people’s.) We use them all with an emphasis on Autistic, especially in recent years. The adult population is burgeoning and will continue to do so!  More and more “Autistic adults” will be identifying just that way! It’s a beautiful emerging self identifier that is necessary for navigating the world. As we move forward and people begin to recognize the cogs in the wheel that are Autistic and how this world has always used these cogs to get around. The shame will dissipate and the pride can freely rush in. This is what we want Queen Sparkle. You may use your own brand of spectrum speak but, do not denigrate other’s choices in that process. Please don’t deny us that my lady nor hinder our progress through words of hatred and fear masked with  huge delirious servings of sugar.
Sometimes information can seem very heavy, as well it should!

Sometimes information can seem very heavy, as well it should!

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Nervous by Nature

We are. Each and every one of us. It is the essential ingredient in the human condition. We are ruled and driven by our own unique central nervous system and what it is or is not capable of. How our brains work in conjunction with it or battle against it. We as people are akin to electrical snowflakes traveling varied environments we sometimes, breeze through, clash with or melt in. There you have it~ the basis for all behavior. The ABC’s of it. Seems simple, right?

Uniquely crafted to experience the world differently

Uniquely crafted to experience the world differently

Not so. Just ask a “behaviorist” they have a whole alphabet of labels for us!! First of all, people are very unaware of their own central nervous systems and how they should be cherished, studied, understood and protected. We are taught that our bodies are “our temples” without much explanation of just what that entails. Our bodies are our circuit boards that channel and guide the energies God has given us genetically. We all have an infrastructure for these energy codes to travel on. This is where the sameness ends. With differing levels and codes of energy our electric snowflakes swirl but, swirl differently! How our unique energy codes are able to travel and navigate this central nervous system, or HWY Infrastructure is where we need to focus our attention and acceptance. Promoting understanding of how we are ALL swirling the same and differently at the same time. Just as it should be.

So many paths of connectivity.OUR AutismHWY in L.A. California.

So many paths of connectivity.OUR AutismHWY in L.A. California.

 Understanding the different HWYS of navigation each person needs to utilize. How one needs to travel in life to feel comfortable and safe. What each persons strengths and limitations are. Anyone that drives can understand that analogy. We all have ways that are uniquely comfortable and familiar to us. Ways we travel to seek our own personal success and freedom. Unique as we are we all want the same outcome for the most part. To feel happy and safe within our families, within our communities, within our world. To further feel as if we contribute to that happiness by creating our own self esteem and human worth no matter the differences.

Why do anything else? Whoever celebrated SAMENESS?

This system we are blessed with drives these electrical signals to our structures informing us how to behave, how to ‘feel it.’ If we all behave and ‘feel it’ differently that helps us realize we all experience life on varying degrees and differing levels. Nerves and neurons (HWYS and vehicles) constantly driving us to where we are going. What we all need to do is take a long look at our unique mapping and the ways we all travel on our individual systems. Our delicate infrastructures and what they will support. More importantly what they will not support. They definitely DO NOT support every one of us driving on the same road in the same direction at the same time. We need to understand that more fully and celebrate this divergence of humanity. Be accepting of this simple truth and stop demanding that people experience the world as you do. All  people have unique and valid differences. These differences deserve understanding, recognition and respect. Despite labels placed on people like high or low functioning that can constantly be re-shaped and transcended. Allow yourself and allow others the dignity of being as they are. Allow people to “feel it” and evolve as they were born to.

 

PLAIN and SIMPLY, diverse reactions and feelings should be considered the “norm.”

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A Darker Shade of Rose

 

 

LOVE Taps???

LOVE Taps???

As Wyatt grows into a young man it was bound to happen. My rose-colored specs would grow wiser and yes, darker. If you have ever happened upon this blog then you know I have an exuberance for life and all things Autism. Some may say an ’unrealistic exuberance’ but, I say that ‘u.e.’ doesn’t exist. IF you are exuberant about something, you believe in it wholeheartedly. I believe in Autism and I am not unrealistic about it. I live with it as an outsider looking in.  I feel it empathetically, I watch it’s every move, but I don’t experience it. That is Wyatt’s forte. His experience that I study and learn from. I learn for him and I learn for me. I learn for my day to day life, I learn for the culture and the world that we live in. It is my duty.  Honestly, I believe it is all of our duties!

The energy that is life, is contained and expressed in so many differing ways by each unique person. People have no groundwork on people. No one understands the basic framework we all operate under and how the working parts may differ and translate this world. Physically, chemically, electrically and emotionally.  Making “sense” of this is quite a delicate and combustible endeavor you must admit. Anything can go wrong and often does! People are amazing creatures and it’s time we researched ourselves….we should all be googling our own mind-body connections that create our behavior. Understand it and define it. OWN yourselves…mind and body. Recognize and understand who you are and how you feel and how that translates. You may be surprised where you find yourself fitting in. We are all on this spectrum of humanity and how we feel it the same and differently!

Not LESS!

What I want all people to learn is that my son is exactly like any other person. That is the part that most people don’t understand about him or Autism in general. The Autistic person’s heart, mind and soul are always intact. Perceiving and sensing this world through a different wiring/processing system. Able to communicate in wide ranging ways. In varying degrees from A to Z. My son’s system I call his…[Autism priZm]… seems to bend the stimulus in ways that his system can receive it. He expresses those transmissions with the  sounds and movements available and natural to him. Working on the HWY’s of his mind that are wired for traffic! Communicating in his way. At times a symphony or at times a storm of raw nerves. We try and adapt to each new day and these stimuli as they come.  Using tools we have learned to relieve or harness this energy and funnel it productively. This lifestyle transforms us into quite the flexible team. I have been wearing these rose-colored glasses since long before Wyatt was born. It’s who I am, making me a solid choice to be this boy’s mother. Everyday he continues to challenge my resolve, my attention to detail and my deductive powers. He is my Autism mentor.

HWY to understanding!

HWY to understanding!

Things can get dark...

Things can get dark…

 

Light and airy.....

Light and airy…..

 

Currently the onset of his teen years are playing havoc on his framework. He has surges of adrenaline and testosterone that his system has a hellish time translating. As if his blood is literally boiling through his veins. In these moments he ‘bangs it out’. How many of us rub, massage and press firmly (or even bang) on areas of discomfort we may have? When Wyatt has these phases of discomfort/frustration his system demands the same x 100 or x 1000… Make your own amplification to drown out your pain. It’s a common practice. It’s a ‘human thing’. We ourselves or family members all do the same in an array of techniques. Both positive and negative if we really look. People are blessed with a miraculous central nervous system. How each of us operates on that system and amplifies stimuli  is what we need to tune in to. Why NOT do a little fine tuning people? Dial your mind and body into what is really going on within your framework . Understand your system and the differing systems of others…..All shades of rose are beautiful light, dark and everything in between. So put on your spectrum specs and get real!

People do what they do because of the way that they 'feel' !!

People do what they do because of the way that they ‘feel’ !!

 

 

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Exploring for Informative Paddles!

Often times I have told people that my life having a child on the Autism Spectrum has felt like being up that proverbial creek. You know the creek, the one with the distastful name that you grow up hearing about. Adrift in a body of water using whatever you can find to shore up your ‘vessel’ so you can begin the long unchartered paddle. The paddle towards forward progressions. Wherever those progressions may lie.

This can be a very murky journey as you float along trying to gather information and connect professionals to your Autistic loved one in meaningful and productive ways. Especially challenging when your child/teen/adult use different connectors and receptors then these professionals are trained to work with.

Sadly, at  other times even unwilling to work with your loved one. You are thrust into this role- captain of your ship -interpreting for and steering your family through a lifetime of safe harbors. Hoping you are lucky enough to find sea-worthy hands for the deck, plenty of paddles and enough wind for your sails! Artwork by Joel Anderson of Joel’s Vision Arts.

 

And this is where your life feels as “wild and untamed” as the deep blue sea. Where helping your child to progress becomes like pioneering unexplored territory against many currents. An epic exploratory journey comparable to the voyages of so many visionaries: Magellan, Cook, Lewis, Clark and Pocahantas to name a mere few. People trudging forward by land or by sea not knowing what exactly awaits them. A perfect way to describe a day, a week, a month, a year, a LIFETIME on the Spectrum. The belief that what you are looking for IS out there gives you the strength to search on.

After you are able to discern exactly what you are seeking.  The “IT” that each of our loved ones on the Spectrum need is a very fluid thing and can frankly be alot of different things. These needs can shift and change like the tides. Add that to the wide range of variances we see between individuals on the Autism Spectrum. Professional labels from: mild, moderate, severe, profound….High Functioning, Low-functioning, Asperger’s, Autism. Then to further identify the differing needs of sensory and processing functions which can vary as much as that list of insulting and outdated desriptors. It IS a very complicated task. It’s a wide open space to be individually designed and defined. An unconquered ocean of possibilities for families to explore and chart throughout a lifetime. Open water.

In this exploratory ”Art of interpretation,” a families intuition should rule the day.  In the last 10 years since I have been adrift, mapping our course on the AutismHWY I see many new schools of thought regarding Autistic people. Brilliant voices of people with Autism profoundly shedding new light on the information. Things I can use to help understand my son’s needs. Amazing informational paddles I am so grateful for!! Social networking has us excitedly collaborating and sharing our experiences. Talk about informative friendships!! I have been  learning by leaps and bounds and am happy to be in this fleet of fine vessels. Feeling fully supported under the sun.

Our friends and supporters on the Spectrum provide these informative paddles to assist in the sometimes daunting Autistic journey. The more of us that connect  and share our experiences the better. No longer adrift and isolated but, now surrounded globally by people experiencing life as we know it floating beside you. The most comforting safe harbor I can possibly imagine. Knowing  friends that have been in our boat and can throw out a life-line when needed is priceless.  A main goal of this website and our mission in life! It truly helps to brainstorm with other families living in a world where often times professionals seem to be playing “catch-up” in regards to the Autism Spectrum. I have seen so many self advocates, activists and families building amazing ships and chartering positive courses. Helping people to explore the many possibilities! This teaming  momentum feels incredible and grows stronger each and everyday. As more people witness the power this community truly has to inform society and to help ”heal itself” the world will be in awe. “Healing” the problems created by misunderstandings and misinformation about Autism. Removing those stumbling blocks to comfort zones for our loved ones. I fully believe it can and will be done!

When the Government, Medical and Educational Agencies of the world realize the love in our community and the POWER the Autistic VOICE holds they can use it to better explore the brain and all of human behavior.

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