Thursday, January 29, 2015

NO Strobe Lights #Epilepsy

Something I want you to know.


 
Image Description: Picture of a Facebook status. A small photo of a dark haired woman with glasses (me) with the name Heather Clark next to it. Text on status reads:
 
Simple strobe lights, both painfully and irrevocably, changed my life almost two years ago. Strobe lights. Those unnecessary decorations used so thoughtlessly, almost killed me. Beyond that, the fears I hold because I have epilepsy are staggering. There is the little stuff too. Like losing my ability to drive, my freedom, and independence.
 
Think about that. How easy would it be for you to say no to blinking lights? Don't buy your kids those fancy shoes. Turn off the flash on your camera. Figure out how to celebrate without hurting the sensitive. I am hardly the only one.
 
Roused by the best. Kassiane heart emoticon

 

Wednesday, January 28, 2015

We Walk In Light

"Now we walk in light."

When I began writing here that sentence written at the top of my story, encapsulated the pointed directional change I had so freshly made in life. It meant a kind of awakening, a rousing of my ability to perceive through the startling new perspective of Neurodiversity. The phrase also represented my commitment to act armed in the brightness that is understanding and to seek, always seek, more.

Like most, this narrative unfolded in walks through more than just light. This record of our lives has often been a battle against dark. My darks. Ableism, depression, epilepsy, I have owned. I also fought the world's darks, because the stigmatization of Autism almost kept me from the most beautiful of relationships. I could have lost my life's dream, my Motherhood, traded for lies. In all times of obscurity, the steady light of my Autistic children has saved me.


I would like to figure our family without the fight. I would like us to just be ourselves, and not exist in defense mode. I would like to boost my children to the forefront. I would like to be their ally and so strong that they can climb upon my back. I would like to take every piece of what I have learned and move towards better becoming and expressing my true self, my true Motherhood. If those things can be called light, that is the direction we go.

I shift still. It's softer after all this time. I have fumbled around practicing my opposition of the false portrayals of Autism for three years. It's not startling or special or a even a struggle, my rebellion. It is my right hand. Change is gentler now because doubt is gone. I know that no matter what the world withholds from us or inflicts upon us simply because we are outliers, we will remain amazing human beings. We are because life is. The urgency with which I used to try and prove our worth is gone. The obligation for improvement lies with those who have diminished their own worth in choosing persecution instead of acceptance.

The question that has been begging me, can I walk away from the fight? When it comes to my ableism, depression, and epilepsy, I will always resist. I am a Mother who wants to honor my children, and one that needs to be present and healthy. I want to live and those things threaten. No question there. It's the rest of the battle. What about the world and how they treat my sons? What they feel, what they think, what they do to my Autistic family and friends, is the utter darkness of humanity. It's hate. I can't live with that either. No. I won't. Questions disappear.

Knowing more of what it takes, we continue to walk in light.

I rebel on.



Thursday, November 13, 2014

Story Time


From a collection of letters I've written, an example of happiness rebellion. This was just as I began speaking the word Autism out loud, four years ago.  

Dear Max and Ty,

I should just tell you a funny story to lighten the mood.

The other day I took you down town to the library to check out some books. You both usually stay in your stroller because if I ever turned you loose, I'd be chasing you to no end. This time was different. We happened to show up just as story time was starting. Although I considered skipping it when I realized that your stroller would not fit through the doorway to get to the children's room, I figured that it was as good of a time as any to give story time  a go.

I parked our Double Baby Buggy, unharnessed you, my little balls of energy, and sent you both in the room. All of the other children were seated nicely on a bright carpet, but the sheer excitement of it all prevented you both from being able to settle down. The wiggling began. The happy exploration when you were supposed to be still. The playful words when all the other children were quiet.

You know the other Mother's there were absolutely horrified that the two of you refused to sit and stay? I immediately started getting dirty looks from them as well as the seriously uptight librarian. I tried in vain to convince you guys to be seated but let's face it, some days I am in charge and other days, the dynamic duo that you are, overpowers me. Most days actually.

Well, the librarian was losing her cool fast. At one point she stood up and tried to scold you both for not sitting nicely like the other children. As she got out of her chair and told you both to "Sit down!" Ty, you snuck behind her back and sat right down in her chair! The room erupted in laughter at that point, and she asked us to leave.

That's right, we got kicked out of the library!

I cried at first, then I wisely changed my mind and I laughed and laughed! I don't ever want you to be nice and quiet and calm just because some crazy adults wants you to.

I want you to be you, and only you.

Both Yous.

Don't ever let some thing like getting kicked out of story time, or someone who prefers order over enthusiasm damper your shining spirits!

I love you my wonderful boys,

Mama

Wednesday, November 5, 2014

#JusticeForLondon

I have got to stop coming here to write about this. Mothers have got to stop murdering their Autistic children. Fathers too, caregivers too, but it is the mothers that really set me on fire, because I am one. I understand what is in the heart of a mother, the mind of a mother, the body of a mother.

But I would never.

The story of London McCabe is too close to home. He was Autistic like my sons.  He was the same age as my sons. He had steely blue eyes like my sons. And his mother started writing her blog about the same time as myself. Her husband has a degenerative disability like mine does. Her life was hard. Mine is too.

London is dead now though. She threw him off a bridge.

A mother could do that? Murder her own?

I am on fire because, that, I cannot understand.

I am here even though I long to be somewhere else. The pattern disturbs me so.

These mothers believe the biomedical and medically dangerous "treatments".

These mothers believe the abusive ABA is "therapy".

These mothers believe the fear and pity rhetoric of Autism Speaks like London McCabe's mother did.

And then the worst conceivable thing happens sometimes.

They somehow come to believe that their Autistic children are better off dead than alive.

These mothers kill.

Too many times.

There is a subculture of hate within the Autism parent community and some fit so effortlessly in. They don't question how their actions, their participation, their enabling of one another, all guided by hate for Autism, can lead to filicide. They defend the emotional, psychological, and physical damage created within their Autistic children by the real life manifestations of their hatred.

When I look back at the way London's mother described their lives, the reality does more than come close, it hits home. The same evaluations, appointments, hard decisions, the same time London was going through all this my boys were too. As a mother, I was as well.

I could never have believed what the world told me about Autism.

I would never choose hate over love.

My children will never be better off dead than alive.

And I will always be a rebel until these mothers stop murdering their Autistic children.



Photo credit: Shain Neumeier

Image description: Color screenshot of London McCabe (a six year old white autistic boy with blue eyes) smiling and looking up at the camera while holding his birthday present -- a black toy helicopter -- up over and partially in front of his face. He's wearing a baggy blue-grey tee shirt and a brown felt dog-eared hat with pieces of fabric sewn on to look like goggles. The caption in white letters reads #JusticeForLondon




Saturday, October 25, 2014

Autism, Hate and Love, All Pervasive


Now admitting that you HATE your kid's autism doesn't mean you don't LOVE your kid. I LOVE my son. But I HATE the disorder that he's been stricken with that will make him dependent on mom & dad for the rest of our lives and beyond.
I would change him in a heartbeat! I would sell my soul to the devil to get rid of his autism. I want him to have the exact personality he has now minus the autism. -To The Parents That Say "I Wouldn't Change My Kid For The World", I SayBulls--t!! 

Just as I began recording my thoughts and feelings here, I wrote a Love Story in response to the quote above; Autism, Hate and Love, All Pervasive. It clearly marks a turning point in my perceptions of Autism and my Autistic family, and nearly three years later I can safely determine that I made the only right turn on those crossroads. Rejecting the martyr "Autism parent" narrative has made all the difference for myself and my children.

I re-share my story now, because after all this time, just today, I stumble upon an Autistic friend still graciously offering her dissent to that same story of hatred for Autism. Autistics are still fighting the harm done by one lousy parent. Hate is not the way. Again, I rebel.

Thank you Jennifer for all the work you do to help parents like me. Thank you to all my Autistic friends.



Image Description: White text on dark green background reads: "Parenting is hard. Period. You love your child. Period. That's it. No modifiers....No I-love-my-child-but-autism-blahblahblah. Shut up.You either love your child inclusive of their genetic makeup or you don't. Not one human is perfect. So we accept people for who they are and we try to help them along the journey. Period." - Jennifer Muzquiz



Autism, Hate and Love, All Pervasive
 
 
Autism is all pervasive.
Hate is all pervasive.
Love is all pervasive.

Planting my feet right now. This is where I stand.

You want to be a gardener. You want to cultivate life in a beautiful way. You picture sunflowers all in a row, standing tall. You picture blue skies and positive possibilities. You know it will be work, but you are willing to dig in. You prepare everything, gather your tools, clear out a spot, turn the soil. You want the very best for your garden, and it is finally time. You reach your hand into the bag of seeds.

Stop and think of seeds. They are the tiniest of things, which mysteriously encapsulate the enormity of potential, and as a matter of fact, the only motive any seed has, ever, is to live.

You grab a few, and put them into the earth. You water, you tend, you beg the sun to shine down on your little patch of land. You wait, forever it seems, until signs of life push through, and you get a glimpse of what you created. This is it! Your garden is alive and growing! The new leaves are so delicate and soft, the perfect shade of green. It is even more wonderful than you could have pictured. It is more work too, but worth it. And you water and you tend and you beg the sun. Time passes and your seeds are growing just fine.

One day, something changes. Maybe you visit a friend who has picked up gardening too. Maybe you notice, that her sunflowers look a bit taller, stronger, with broad leaves catching more of that sun. Or maybe you look at your own rows of life, and see that one plant in particular, is growing in a peculiar way, by comparison. A bit behind, with a twist in the stalk, is it different from the others? It is.

The seed, which grows within your garden, your child, happens to be Autistic. Oh, how you cry! Oh, how you cry, but your tears do not water your garden. They fall on empty ground.

Autism is a seed.

It is not an insect come to prey on tender leaves.
It is not something attaches itself to your child to drain life.
It is not separate from your child in any way.

Autism is a way of growing.
Autism is life, whole, and in of itself.
Autism is all pervasive.

The spirit of all your child develops, springs forth from the mysterious stuff inside that seed. That Autistic stuff. Their very design for growth is inspired by the life force that is Autism, influenced, shaped, and powered by, birthright. They will grow as Nature intended, as She offered, and no humble gardener can argue with that.

You get to thinking. It isn't the poor plant's fault. You still love the plant. The one who you have been watering around the clock. The one you have nurtured this far. You will just have to fix it up. You will teach it to stand with the others. Prune, and propagate what you can salvage, so that your plant fits in. So that your garden is closer to what you pictured. So the damage of receiving Autistic seed is less painful. Yes, this will be even more hard work, but you can see no other choice in the matter.

And no, you do not have to like Autism. You could hate it in fact. Not your child, of course, but you know...Hate that the perfection you pictured was only an illusive dream. Hate that you picked seed, which does not stand straight. Hate that your neat little row has been disrupted. Hate your friend for having sunflowers, when you got Autistic seed. Hate that your garden needs more work. Hate your choice to even become a gardener. Hate. Hate. Hate. Hate it all, but not your child. That is okay, right?

Hate is a poison, my gardener friend.
It seeps into the water supply, leaches into the soil, permeates the air, darkens the sun even.
Hate is all pervasive.

See what thrives that way.

I will love Autism all the way. I will love the seeds I was given because all life should be honored. I will tend to and support my garden, nourish my Autistic children, and when the sun refuses to shine, my love will become their light. I will learn to grow the kind of plant that I never expected, the kind that was never before permitted to be, the kind that was always cut down or shaped into something else, the kind that has yet to be grown in a soft accepting soil, and I will do this with love absolute. It is the only way that I can still grow into the gardener who cultivates beauty and it is the only way I am ever going to see my son-flowers bloom.

Love is your cure, my gardener friend.
Love penetrates and dissolves your pain, it inspires all seeds to blossom, it is your bountiful garden,
Love is all pervasive.

May love be pervasive enough to flourish in your heart. Let us see what our Autistic children can grow into, when we clear the land of hate.



Edited to add in this second beautiful image that my friend Lei made. She is the talented creator of the former image as well. Thank you Lei!

Image Description: Yellow textured background, with a faint image of a sunflower and the text: May love be pervasive enough to flourish in your heart. Let us see what our Autistic children can grow into, when we clear the land of hate.






 

Tuesday, October 14, 2014

Heather Clark: #IamNOTkellistapleton


I am not like the others.

I don't want to be.

I refuse the name.
 

Some background for those not following the story of Issy Stapleton and her abusive mother Kelli, who attempted to kill her just over one year ago. Recently, Kelli was on The Dr. Phil Show continuing to play the victim and exploit Issy, shortly thereafter she pleaded to a lesser charge of child abuse, and this past week Kelli was sentenced to 11-22 years in prison. It is a judgment I am mostly satisfied with. Issy will be grown before her would-be-murderer gets out. At the same time, I know that this sentence is likely less than a parent would receive should they have attempted to kill their own non-Disabled child.

I have been following the story. I have been speaking out. I have a vested interest. My kids do. The way Kelli has blamed Issy and Autism for her own horrific attempts to take a life,  the way our society, Dr. Phil, and especially other parents of Autistic children are relating to her instead of the true victim Issy, and the way this shameless, selfish mother has made her name, all of these things hurt Autistic people. My kids.

To portray Issy as the abuser is not just. She is a disabled child that has been relentlessly taken advantage of. She was provoked. Her mother hated Autism, wanted a normal child, spoke about her as if she were a mistake.

Kelli had the power in the parent child relationship, which is clearly demonstrated in the fact that Issy was sent to a residential treatment facility for the majority of the year leading up to the almost-murder. Kelli also had the power to lure Issy in, to medicate her, to lull her into death. Kelli was the abuser.

Issy lashed out, she reacted, for her own good. To bring her "behavior" into the conversation is victim blaming. It is an attempt to justify the killing of Autistic people. It is giving weight to the immoral idea that Issy, in part, deserved to die. Issy was never better off dead.

The sympathy, and worse yet empathy, that has been given to Kelli makes me sick. Heartsick. It pains me to know that the world identifies with a murderer before my children's kind. It bothers me to no end that they understand and accept the most heinous of criminals before they consider the humanity of Autistic people. It isn't right that Issy's life has been devalued in the minds of most and it isn't compassion or broadmindedness behind this disconnect with the victim. It is plain old dehumanization. The truth is that an Autistic child was victimized but hearts go out to the malevolent, so mine is sick.

Kelli started soliciting for this sympathy years before she finally had the nerve to act on her hatred. Her online record is foreshadowing, frightening. She profited off postings of Issy's every intimate and vulnerable detail, profited monetarily and as a means of bolstering her ego.

Within the Autism community there are certain sects that exist on the accolades given to them merely because they are parents raising Disabled children. Some of them exploit their children to get more. Some of them are driven on nothing but their hate for Autism. Kelli was all of the above.

After she was caught in the act of murder she continued her ways. She could have pleaded sooner. She could have NOT contacted The Dr. Phil Show, she could have told her friends to stop defending her, admitted full guilt, taken full responsibility, she could have done anything but kill.

It has got to be the ultimate betrayal; for a mother to murder their own. I sink so low imagining what Issy has to live with, knowing that the one who carried her in also tried to take her out. What Kelli did was a demonstration of hate, not an act of love, not a mercy killing. Hate for Autism. Hate for Autistics.

I should not have to defend my children's right to exist, nor my own integrity as a loving and nurturing parent of Autistic children, just because this disgusting example of an "Autism mom" has been given the platform and erroneously claims to represent me and my kind. My kids shouldn't have to defend their right to exist.

I've been called all kinds of things because I refuse.

Don't you dare call me Autism mom.

I am NOT Kelli Stapleton!



Image Description: Background, a rainbow of colors and textures, shows dark text reading: I love MY Autistic children to be silent when another parent abuses or murders theirs. -Heather Clark #JusticeForIssy

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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