Monday, June 30, 2014

Not in My Home @SesameWorkshop #BoycottAutismSpeaks

This essay can also be found here on Raising Rebel Souls.  
 
Image Description: A photo of me in 1982, turning two years old. I have a Sesame Street Birthday hat and dark blue overalls on, standing in front of a cake decorated with Ernie, Bert, and Big Bird and lit birthday candles. My grandmother is standing over me, helping me clap my hands. My uncle is in the background smiling with my same age cousin, also in a party hat. It is one of my very first memories. I wanted to eat the character decorations more than the cake. Thirty years later my Autistic twins also had a Sesame Street themed second birthday. It was a completed circle in my life.
It was beautiful, but now it is not.



To all those involved in the creation and distribution of Sesame Street Workshop programing,
To all those who view Sesame Street programing,

For my Autistic friends and family,
For my Autistic sons,

Today I will take down the Big Bird wall hanging in my Autistic children's play area. I will gather their books and toys with the brightly colored characters and put them in a box. I will put the photographs of my second birthday and my sons' second birthday away. I will take the Grover magnet that has been on my refrigerator for the past 30 years off. I will be done with Sesame Street.

Today is the day that Sesame Street is no longer welcome in my home.

I will NOT, however, be done protesting their partnership with Autism Speaks.

I am mad. This month, we at #BoycottAutismSpeaks have pushed hard. We have worked tirelessly to help Sesame Street Workshop understand the mistake they have made by supporting Autism Speaks, and to learn about Autism from the source, Autistic people themselves. We did this because we care about Sesame Street. We worked because we love all children and believe they deserve an authentic education no matter the topic. We rallied because we appreciate the advances in civil rights Autistic adults are making. We dug deep because Autistic children deserve better from Sesame Street, and from the world. Everyone deserves better than Autism Speaks and the fear inducing tactics that they use. Every single one of us.

That is it. Everyone was welcome on Sesame Street, at least that is what the show has always portrayed. For some reason though, Autistic children and their elders aren't allowed on the street. Though Sesame claims to want to include Autistics, they partnered with Autism Speaks, which is an organization that clearly wants Autism to be eliminated. Autism Speaks treats Autistics as if they were diseased, when the truth is, they are simply a natural part of our human diversity. If my Autistic children, my Autistic family, and my Autistic friends are not welcomed as they are on Sesame Street, well then Sesame Street is not welcome in our home either. I will NOT subject my children to that bigoted approach.

Sesame Street is not simply ignorant now. Their stance has become willful. They have had a month, and longer, to figure some very basic things out, like Autistics do not want a cure they want acceptance and inclusion. Yet, they have chosen to ignore our attempts to reach out. They have ignored Autistic people themselves. They have been pretending as if we do not exist at all. Their actions serve to silence and erase a people trying so desperately to be heard. Sesame Street has the opportunity and now the knowledge, to become a true ally to Autistic people, which is exactly what Autistics need. Sesame Street has one of the only platforms big enough to compete with the monster that is Autism Speaks. They have made no attempts to do so. They have chosen to work against Autistic rights, human rights. They have stood firm in their partnership with the enemy of Autistics.

And I will continue to stand firmly against Sesame Street.

Though the damage they have and will do by maintaining their support of Autism Speaks is most important and detrimental to the Autistic community and their loved ones, Sesame Street has also done a major disservice to themselves. No longer can they claim to be a champion of diversity. I will call them out every time. We should all call them out. Instead of learning about Autistic culture, learning about the beautiful, and creative, and loving, and sensitive people that Autistics are, they have denigrated their own values by avoiding us. They have betrayed themselves. It's a shame that Sesame Street is not what it used to be. I can't imagine it was all a hoax, but doing the right thing is hard, and they have taken the cowardly way out.
Sesame Street, you are not welcome in my home as you are. You must change your mind about Autism!

When you do, I will gladly open the door again.

Until then,
Heather Clark

 

Saturday, June 21, 2014

Mommy is Mad @SesameWorkshop

"Mommy is mad at Sesame Street."

I said that to my five year old Autistic sons. Yes. I did.

Hyperlexic eyes scanned the computer screen. There was no hiding. There was no time to hide.

Believe me, I did not want to say it. I have been fan of Sesame Street my entire life. More than a fan, Sesame Street was foundational in my childhood and something treasured that I passed on to my own children, confident in the value system being portrayed. I trusted Sesame Street to be good enough for my sons. That means I trusted them with my world.

More, I did not want to say that because I knew what would come next.

Then they asked "Why?"

What would I tell them? How could I explain? Why should I have to? Why should I have to tell my darling, wide-eyed children the honest and raw truth?

Most people in this world think Autism is a terrible thing. So terrible in fact that they feel sorry for you. They would like to cure you of yourself. They would like to prevent other children like you from being born.

The idea that you are worthy as you are, as a wonderfully created human being, as part of our natural and glorious diversity, has not yet occurred to this world.

"Mommy is mad at Sesame Street because they made a bad choice."

"What did they do?"

I couldn't. I pulled away. I held back on the honest and raw truth. I held hard.

Again "What did they do Mommy?"

"They made a bad choice, that's all."

Damn it! My sons, it is not your fault! You ARE worthy, and you ARE wonderful, and you ARE gloriously divergent! We are just waiting for the world to catch on. NO, Mommy is fighting for the world to catch on. I love you, my sons.

I hope that's enough.



So, what did Sesame Street do?

They partnered with Autism Speaks. Yes. They did.

Autism Speaks who made me so afraid.

Autism Speaks who boxes us as tragedy. Then sells us.

Autism Speaks who tried like hell to keep me from my children, they try like hell to keep parents like me away from their Autistic children.

They tell us our children are lost.

They tell us our children are diseased.

They tell us our children are burdens, suffering, doomed.

They tell us that we must fight against Autism, against our children, instead of fighting for the world to catch on.

(TRIGGER WARNING FOR THE VIDEO IN THE NEXT LINK; flashing lights, risk of seizure.)

Now Sesame Street has joined forces with Autism Speaks.

Not good enough Sesame Street.

Mommy is MAD at Sesame Street.


I have been very focused on the Boycott this past month, and specifically, the relationship between my once beloved Sesame Street and this awful organization which causes so much harm. Although in the first conversation the boys and I had about this topic as described above, I held back on the truth, I have since been able to give them more information, in a way that I think respects both their right to be children, but also respects the truth. They know that Autism Speaks does bad things to Autistic people. They know Sesame Street made a bad choice by partnering with them.

And they are learning to fight like hell for the world to catch on.


Join the #BoycottAutismSpeaks movement.

Speak out to #EducateSesame.

Sign your name here.

Sign your name there.



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Wednesday, April 23, 2014

The 3rd Annual #AutismPositivity2014 Flashblog: Expressions of PosAutivity

cropped-autismpositivitybanner3.jpg

 

The Third Annual

Autism Positivity Flashblog

on April 30th, 2014!!

 


“Expressions of PosAutivity: #AutismPositivity2014″


Expressions of PosAutivity is intended to be a celebration of the multiple and varied ways to express experience or convey ideas. This year we hope to highlight the importance of flexibility in communication within our diverse community and honour multiple forms of personal expression, from the written word, to art, to photography, or a video (as a link), or…

We invite you to explore, share, and celebrate your moments, stories, or images of courage, strength,  and/or positive identity and pride in a way that speaks to you and rails against stigma. Express something PosAutive about autism, about being Autistic, or about the Autistic person/people in your life, etc.

Last year and the year before, hundreds of bloggers came together in a show of support and solidarity in response to negative stigma. The posts that came flooding in from all over the world were a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we this year invite you to participate in an intentional celebration of acceptance intended to highlight the importance of flexibility in communication within our diverse community.

We welcome all of you, anyone who is Autistic, anyone who has an Autistic person in their life, and all who blog about autism to share a message of support, wisdom, hope, and pride to this year’s flashblog by posting to

https://docs.google.com/forms/d/1fWjZ76uOG2KK3u0EsZll12EQ_6goDNVzEKK2BBZ8R7k/viewform

 

To participate:

1. Publish your post on April 30th in the following title format: “[Your Blog] Expressions of PosAutivity: #AutismPositivity2014″

2. Share your post on Twitter, Facebook, and any other social media site using the hashtag #AutismPositivity2014

3. Add your link to the Autism Positivity website (submit here or above)

4. Share/reblog this message to your blog, page, etc.



Screen shot 2014-04-21 at 6.45.04 PM

Thank you,

The Autism Positivity Project Flashblog Team, 2014

If you have any questions, please contact us at autismpositivity@gmail.com

We can also be found on:
Autism Postivity Blog: http://autismpositivity.wordpress.com/expressions-of-posautivity-autismpositivity2014/
Facebook: https://www.facebook.com/ThinkingAboutPerspectivesAutismPositivity
Pinterest: http://pinterest.com/positivityautie/autism-positivity-2012/
Tumblr: http://autismpositivity.tumblr.com/
Twitter: @PositivityAutie


Friday, March 7, 2014

Guest Post from Nick Walker: What Is Autism?

The following post was written by Autistic activist Nick Walker. You can find more of his work on his blog Neurocosmopolitanism, on Facebook, on Twitter, and on his website. Nick has been particularly helpful in my understanding of Autism, which is demonstrated in my own writing here. I have included some related personal thoughts directly after his essay.


What Is Autism?

March 1, 2014
 
How many websites are there that have a page called something like “What Is Autism?” or “About Autism”? How often do organizations, professionals, scholars, and others need to include a few paragraphs of basic introductory “What Is Autism?” text in a website, brochure, presentation, or academic paper?

I’ve seen so many versions of that obligatory “What Is Autism” or “About Autism” text. And they’re almost all terrible. For starters, almost all of them – even the versions written by people who claim to be in favor of “autism acceptance” or to support the neurodiversity paradigm – use the language of the pathology paradigm, which intrinsically contributes to the oppression of Autistics.

On top of that, most of these descriptions of autism – even many of the descriptions written by Autistics – propagate inaccurate information and false stereotypes. Some are so bad that they actually quote the DSM.

Of course, there are also a few really good pieces of “What Is Autism” text out there. But for the most part, they’re rather personal pieces, about the authors’ own unique experiences of autism, rather than general introductory definitions.

What is needed is some good basic introductory “What Is Autism” text that is:
1.) consistent with current evidence;
2.) not based in the pathology paradigm;
3.) concise, simple, and accessible; 
4.) formal enough for professional and academic use.

Since I couldn’t find such a piece of text elsewhere, I wrote one. And here it is.

I hereby give everyone permission to reprint the text below, in whole or in part, whenever you need a piece of basic “What Is Autism” or “About Autism” text. Please do credit me for writing it (and of course, a proper citation is a must in academic writing). But really, as long as credit is given, anyone can go ahead and use this text for free. 


WHAT IS AUTISM?
 
Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.



My Thoughts: What was that catalyst that changed my fear to acceptance? Very simply; my children began to defy the definition of Autism that I had been told. This set me seeking.  I sought, and I seek, truth.

I am fortunate to be parenting in a time where Autistic culture is blossoming and I can learn like those parents before me never could. My children are fortunate because, right now, their elders are making huge gains in diminishing the commonly held and false perceptions of Autism and in defining themselves as a people.

The above declaration of what Autism is, written by an actual Autistic person, is remarkable. It strikes me to be that truth I am always seeking. It resonates with many other Autistic people. It defies what we the majority have been told, what we have been telling ourselves about Autism, just like my children defied my ignorance.

I imagine beyond too. I picture those parents of Autistic children that will come after me. What I have had to seek to learn, what Autistics have been fighting to tell, I know it will be commonly held as truth. I envision my children being free to be Autistic, accepted, and appreciated. I predict we will finally understand that no one should attempt to define another.

My humble thanks to Nick Walker and all the Autistic adults defying and defining.
 

Thursday, February 13, 2014

Raising Rebel Souls: #LoveNotFear




I never would have guessed the way this turned out. I don't mean that I never expected to have Autistic children. I mean I never would have guessed that I would be here, feeling the way I do today about Autism. It is true that I started in fear. Oh! I was afraid to begin! My fears were as wide as my ignorance. Empty too. With shaky steps and innumerable questions, the Mother in me set out to move from fear. Still walking this Autism journey, always will. Now, however, I walk in love.

I looked up from my tears and saw my small children. They were quietly turning the pages of picture books. What was so wrong? Why was I over here, in fear? Why were they over there, in peace? That deep breath taken after the crying is over, I took it. The pain I felt, the things I thought I knew, the fear, just did not match the reality of my sons. They were sensitive, affectionate, funny, intelligent, and sure there were difficult times too, but they were not frightening. My children were loveable. Easily so. I was confused, mistaken, misunderstanding Autism. Love kept me moving.

I began to meet the Autistic community, and those places that did not match up to my sons' reality, did not match their Autistic reality either. I realized I would have to reject what I thought I knew about Autism, and relearn from them in order to get any where. I realized I could. I could walk away from fear and into understanding. The Autistic community gave me lessons on the presumption of competence, inclusion, acceptance, empathy, self advocacy, glimpses of their lives to heal my ignorance, to drive out fear. Like a road map drawn from their experience, they loved my children enough to guide me on my way.

All this love changed me. My heart grew fit as I traveled along. No longer could fear enter the chambers of me. Love beats too strong. I set down my conditions because they only blocked the way. I unpacked my ignorance because it pulls in the wrong direction. I dropped my fears one by one because what I have to carry is too precious to fumble. I made room for the love of Autism. I filled myself up with the love for Autistic people. I never would have guessed it, but it's true.

did not have to begin in fear. I should not have been made to. My sons were not made to be feared. My sons are made of love. I know there are Mothers like me just taking their first steps in the journey of parenting Autistic children. I know. I know. I know what they are feeling. May they head in the right direction. May they follow their heart and not their fears. May they love it through. It is the best move to make for themselves, for their children, for all Autistic people, and for us all. May we walk in love together. Love not fear.



The preceding essay was written for the Boycott Autism Speaks sponsored Flashblog, #LoveNotFear.
 
Please take the time to read more. Please Love.
 
 
 


Wednesday, February 5, 2014

Autistic Child: #LoveNotFear

This is a poem that I wrote last April for my Poems for the Autistic Child collection, and I am reviving it in honor of all the children out there who are being harmed, right now, by the pity and fear inducing rhetoric of Autism Speaks. I must say, I am grateful that my children do not yet know. I am grateful for this young time in their lives, where they can live unaware of the damage being done to their people by the largest Autism organization in the nation. I am grateful that their first understandings of Autism, of their own neurology, are being supported with love and acceptance. May all the Autistic children rebel.



More than a Number -H.C.



They say 1 in 50 like they just learned how to count.
You are more than a number.


They measure you down.
You grow up and prove them wrong.


They say Autism Speaks.
You spell it out, N O!


They light it up blue.
You are all colors.


They make believe the story of Autism.
You are the truth.


They got nothing on you.
You got rights.


You got every right in the world,

to be accepted,
to be included,
to be loved.



May they recount,

their own arrears,
their own deficits,
their own lies.



You count.



Visit the Boycott Autism Speaks website.
Sign the petition.
Join the Flashblog for Valentine's Day #LoveNotFear

Friday, January 31, 2014

The #BoycottAutismSpeaks Movement is #posAutive

I have been working devotedly on the Boycott Autism Speaks movement. I am proud to stand in opposition of the "charity" Autism Speaks, which so blatantly describes my family as not really living, but then profits off the heads of my children. I am proud to stand with the dream team of Autistic and parent activists collaborating on this effort. As expected, we have already faced criticism. Most of these reoccurring attempts to derail are centered around the shallow idea that boycott is negative in nature. This notion illustrates one of the major hurdles that we all must face. Perceptions of Autistic people, their lives, their needs, their contributions, are so opposite of Autistic reality, that the non-Autistic majority cannot even imagine the truth. The truth is that this boycott is not negative. The truth is that this boycott is posAutive.


When a group of people comes under attack by a powerful entity determined to eradicate their kind, that's a negative.

When that group of people unites to say NO, stop attacking us, we don't want to be eradicated, that's a positive.


When Suzanne Wright sends out a call to action, telling the world that Autism is a tragedy, burden, and national emergency, that's a negative.

When Autistics and their loved ones come together to share the beautiful actuality that Autism is, that's a positive.


When an organization claims to be serving Autistics, but refuses to include Autistics in positions of leadership in order to guide the care that the organization provides, and instead uses it's power and influence to serve their own non-Autistic agenda, that's a negative.

When an organization serving Autistics is actually run by Autistics, and they use their intrinsic understanding to provide authentic supports and better their own lives, to empower their own, that's a positive.


When the good people of the world want to help, but they unknowingly give their time and money to a "charity", which spends the money unethically and uses it to cater to their own needs, that's a negative.

When the good people investigate how their donations are spent, figuring out that the "charity" is in fact unethical, and then they stop giving their hard earned time and money to that "charity", that's a positive.


I resent having to explain the irony of how Autistic people are perceived and treated, pitied and feared, over and over and over again. I understand that some people are simply ignorant. I know I was in the beginning. I know I still am in ways I cannot imagine. This one is so obvious though. The way Autism Speaks treats Autistic people is inhumane, but because the world thinks that it is Autistics that are less than human, the kind of dangerous bigotry Autism Speaks spreads is perceived as altruistic, as helpful, as positive.

It's NOT.

NO.
NO.
NO.

Don't tell me to say NO nicely, because there is nothing nice or positive or good about Autism Speaks. Don't scold me for defending my own children. Don't shame me for confronting the world with truth. Don't derail me. Don't derail this boycott. Don't lie to yourself and think staying neutral in a struggle for civil rights makes you a positive person. Don't think it is anything more than immoral to get in our way.

Don't ignore the Autistic plea to be treated with dignity and respect.

It won't work anyway.

Good, and love, and positivity always win.

That is the side we stand with.

PosAutive.

Wednesday, January 1, 2014

Raising My Own Rebel Soul

Today marks the second year that I have been writing Raising Rebel Souls. Today marks the New Year! I take a moment to look back. Because I cannot describe the bits of memories coming through in my reflections, I have collected my past words in attempt to explain. These are the places I learned and loved, and I lived through them, really lived, too.


I have never been wrong when I believed in my Sons.

 

I always wanted my boys to know.

Know why it is hard sometimes.

Know why they are so damn smart too.

Know what that feeling of being different is called.

Know the word for it.

I always want them to know, they are Autistic.

 

We are not what you call normal.

We find our true selves in our Neurodiversity.

We pitch camp in our connection.

I hold onto our strange kind of goodness.

Loving my family more than ever.

 

For two years, I have been studying my family's neurology. For one year, I have been transcribing my lessons here. This process is loaded with self reflection. Many times over, I have scoured my brain, my life, my Soul. I have more to learn.

 

Going back to living is not so easy now. I caught a picture in my mind's eye, me, laid out on the floor of our humble home. I would like to think of myself as a kind of force to be reckoned with, still a bit wild and still full of life. But I remember the force that brought me to the ground and lower. I know now, it was more powerful than my body.

 

I have learned a lot about behavior, and do not choose behavioral therapy for my sons because quite simply, I do not feel it is therapeutic.


 

But, you ever tried to stop a train?

It was not within my power.

Hold hands Family.

Let us walk backwards along the cars.

We have not had the opportunity to find our own way.

And no one has laid tracks to where we are going.

 

He seems to be humming to himself,

but he is listening.

He seems to have the words mixed up,

but he has something more to say.

They seem unable to communicate.

but are you listening?

When will you listen?

 

Sometimes you will be down.
Sometimes you will be out of control.

My hand is still good.

I double down.

I double down.

 

The flowers that Daddy brought Mommy after her seizure. The flowers that had to be set low, so we could touch them, and talk about them, and see them, eye to eye. The flowers that got divided into four vases, all perfectly lined up. The flowers that through out the week and with our curious kind of love, occasionally got tipped over, but not broken.

 

One day back then, we were watching a windy rain storm out the window. It pushed and pulled an old beloved tree trunk, a headless dead tree, all that remained from a once lovely coconut palm. An old tree trunk, which upon it's perceived death the year before, became home to all kinds of wild life, woodpeckers, owls, black birds, squirrels, snakes.

 

When I first noticed my young Son flapping his hands,

I saw a maestro,

a hand dancer,

a beautiful child!

 

My lovely Sons, every day, you show me just what joy means.

 

I make a bouquet.

Weeds, and wings and other overlooked things.

I fasten it to my head.

 

A while back, I set my sights on something real good. Something fiercely defiant. Oh, but it was something sure fucking fire. I finally understood that my ultimate Rebellion would be happiness, and I set my sights on it.

This is my Happiness Rebellion.

 

The growing is that silver lining most the time. I cut it out of the stormy clouds. I sew myself a silver dress. More importantly, I save the pattern. I don’t forget. I go back to it, and sew again and again. I go back to it, and grow again and again.

 

Far too many times the unique skills and passion that young Autistic people have are completely ignored, decimated actually, in favor of straightforward normalization. I was taught to see my children’s "deficits" before their abilities. It all started with the red flags.

 

One of my Sons had a meltdown every time he was pushed to rip or cut paper. In the time that has passed since, he has been able to communicate to me why. He does not like the idea of ripping something that is whole, into pieces. He does not like the idea of tearing whole apart. He is afraid of that, and why shouldn’t he be? It rips me up just thinking about it now, now that I can see my whole Son, now that I know his reasons for being afraid were perfectly symbolic of what we were subjecting him to.

 

Why was I forcing my child to go through these traumatizing experiences? Like him, I was afraid. Afraid he would not catch up on those deficits, figuring that breaking ourselves now would solve our future (imagined) problems.

 

Aren’t we all just made up of our behavior? I have a very rich inner life, but my behavior, how I act, especially when I act out, is my communication with this world.

 

Does the therapy you are providing for your child feel therapeutic?

 

What about helping them thrive not by the shallows of conformity, but thrive as Autistic people do? On their timelines, on their strengths, with our sincere support.

 

I don’t know what was more painful, buying into those first fears, or realizing my own ignorance and the potential damage I could have done with it. I could have ruined my Sons’ lives if I had stayed afraid, but I already walked through panic. I’ll be damned if I will walk that way again.

 

There is no disgrace in how my Autistic children were born, their differences, or their disabilities, and it is through that same understanding that I can now view myself.

 

Love is what my Sons gave me while I was lost, mistaken, and flawed in my views on Autism.

 

Whoever you are, whatever it is that makes you different, I am not afraid. I will not be ashamed or shame you. I will love you. I will give thanks for you too.

 

Yesterday, I was out watering and I noticed a bit of purple that wasn’t there the day before. Wildflower seeds we planted a year ago just sprung up. Everything in it's own time. The same is true for my Autistic Sons and their development.

 

He is Autistic. He doesn’t follow ordinary timelines.

 

They play together as two Autistic children might. They communicate together as two Autistic children do. They navigate the space between them as Autistic children will. Who are we to determine what that means?

 

When I was focused with keeping on the normal course, my Sons had reason to be wary. I didn’t trust them either. I did not trust them to bloom in their own way, in their own time. Now I do. Now I do. That is me developing, me growing. How about you? How does your garden grow?

 

There is nothing like being swallowed by the power of a seizure, nothing like the present fading to black, nothing like losing real time, to knock me back into the reality.

 

It isn't Autistic children that are lost, believe that. We, our educational systems, our interventions, our therapies that don't feel therapeutic, are lost on how to serve the Autistic population.

 

So slippery the slope.

 

I will out Love hate for you.
I will.
I will.

And I will out Love hate for you too, Alex.
I will.


 
 

Towered
Over.
Asked
To
Stack
Tall.
From
The
Ground
On
Up.
Expected
To
Fall.
Autistic Child, I am on your side. You can stack wide. Long is not wrong. A line is fine.


Listening is the heart of service. We need a system of service that devotedly listens to the needs of Autistic people.

 

I revel in you,
The way you are.

 

I guess I have become strange too. I surrender.

 

I trust life. Of course it is hard and I shouldn't expect otherwise. Think of wings growing right out of your back. I refasten it to my head.

 

From the age of babies now, we set them apart in a most unfavorable way. We note their every Autistic move and categorize it, red flag it, chart it, map it, plan and then execute a way to eliminate it. Those are our moves and that must be the most heinous of crimes; to take away the very self of a person. What else of a human is left?

 

Those rebellious enough, those disobedient Autistic adults, are leading the way to understanding. They buck our systems of oppression for their basic human rights, for the human rights of my children, for all human rights, and rightly so. Morally so.

 

No one here will be denied a sense of authentic self. No one will be denied their Autistic self.

 

It is frightening to realize that a good and honest young man had no choice but to return violence with more violence simply to survive walking to the store.

 

I needed to feel as much discomfort as it would take to open my heart and mind to the burdens placed upon certain other groups of people in our shared country.

 

Justice is not served. We have to fight. Fight for Justice.

 

I am ashamed of my reaction to discovering that my children were Autistic. Deeply, deeply, ashamed. It is a heavy feeling to hold.

 

I never wanted my ignorance.

You can walk around this whole wide world and never know. You can do wrong by your children, but believe you are doing right, and I did. I mustn't forget that I have the potential to hurt the people I love.

 

The world is only upside down until we turn it right side up.

 

A child who lives in a world designed unsafe for them needs self preservation skills, and one tiny little word goes a long way; no.

No, I won't put my hands in shaving cream. It hurts.
No, I won't speak on command. Sometimes I can't.
No, I am not ignoring you. I am trying my best.
No, I am not going to be the child you expected long ago. I am me.
No, don't touch me. No. No. No.

Stop pushing me around to fix your own fears. You are scaring me.
Stop taking my childhood away. Childhood is my right.
Stop accepting what the world says about Autism. I deserve acceptance.
Stop. For once. Listen to me.

My body is mine. My feelings are mine.
My mind is mine.
This world is mine too.
These rights are mine.

I say No.
I say Stop.
I say we are Rebels,
Me and Mine.

 

With that change in me, came assurance for him. Ty knew I was listening instead of forcing my ideas of language, and he knows it still. He can be confident to speak his mind with me. He can trust that I will follow his shapes and patterns, his associations, his beautiful way of communicating, to get to his meaning.

 

Our words don't always make sense to each other, but something else, something that trumps all frustrations and misunderstandings, always makes sense. That something is committed love, and we both know the meaning of it.

 

There are as many ways to communicate as there are people. Too often, Autistic children and adults are expected to speak and communicate, expected to live, in ways that do not come natural to them. Then, we wonder why they cannot.

 

My boys deserve to be decorated and celebrated, and so do I. We should flaunt the beauty of our lives for ourselves and for the world to recognize. We will. Maybe then, the lessons of our worth will come more easily to those who don't yet have the wherewithal or wisdom to honor it.

 

I wish my family was as free as any good people should be. I wish with all my spirit and soul that I did not live in a world, which would eradicate my children's kind, telling themselves it is a service to humanity to do so.

 

Don't call me Autism Mom.

She isn't here.

I refuse the name.

 

I hold hard.

I hold beautiful.

My Motherhood has not eased up.

I hold still.

My Motherhood only grows more beautiful.

 

If you think a people can be cured,

Remedy your morality.

 

What right have we to decide how a person should develop? The word intervention is used, as if it is our duty to interrupt the sacred unfolding of life. As if we know better than the stuff that makes us. How do we dare? It is a word only the privileged would be arrogant enough to use. It describes the majority well.

 

Some need more and some need less, but there is no means to measure human need.

 

He is everything, in his own right.


I have a rather unique perspective into concepts of functioning being the Mother of such fantastically dynamic and mostly opposite children. Functioning levels are fiction, made up by people in power.


Well, disconnecting a connection does not feel therapeutic.


I have learned enough to know; when a community of people, in this case Autistic people, unite to cry injustice! then the rest of us, as decent human beings, have a responsibility to listen.


Say her name until murder bothers you.
Say Issy's name.


 

I remember Ty's hands. They were dancing. They were leading the rest of his bouncy body. They were touching music in thin air. They were translating sound. They were Autistic hands. Beautiful ones.

 

I am privileged to be raising my Autistic children in this place of time. The opportunity that I have as a parent to learn from Autistic adults has already directly improved the lives of my children. I could never forget to mention, my own life has been bettered too.

 

Because I know that we all have a right to live the way we were born. I know this.

 

There are good things I have done, and I am doing goodness, and I will do good in the future, even if I make mistakes too. Both should be acknowledged. They both have worth. I'll get it right enough. I'll love enough. I'll keep trying.

 

You know how some people say Autistic children are lost? You know, the children right in front of our faces. Lost? Well I know many parents of Autistic children who are lost. I've been lost myself, as a matter of fact.

You put your name in a parenthood hat and hoped your number was drawn.

It was, but it's not good enough, you lost soul, you.

 

Epilepsy is the brain.
Vulnerability is the heart.

And I can't fix my brain,
So I can't fix my heart.


I don't want that peaceful feeling, like I am fading into death, ever again.

I don't fucking want to have seizures!


 

This is swinging over the world to peace.

 

The brainwashed do wash brains. Ignorance smoothes the process.

 

I cried more than a Mother should in that one darkest day because I believed it was my child who was lost. I believed the Autism Speaks lie.

 

I lay there a long time, frozen like a doll with more than stuffing inside.

 

My present Doctor says that the electrical activity causing my seizures is happening in the pleasure center of my brain. He says monks work a lifetime to reach the peaceful place that I go. Monks and drug addicts, searching for high.

 

I left the room, but it wasn't the same room. The hall either. Perfectly distorted. Birds' eyes replaced my own.


I write all this for acceptance, yours and mine, and I will keep steady at it.


I know no peace, Randle.
I know it is my responsibility to honor you and your kind, with out rest.


 

We must reclaim our children because Autism Speaks interferes in our sacred parent child relationships, telling us that our own flesh and blood is wrong, is lost, is less. Our children need us to believe in them, love them, and accept them, more than they need anything else.