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.

3 comments:

  1. This is my daily quest also....it is why we have chosen, first out of necessity and now it is a choice of love and a belief that the sky is the limit for our kid, to leave school.....leave therapies......to live life......to explore.....to be safe .....to dream......to be happy.......and god damn it, it is allowing us all to experience life in a way that I had no idea even existed.....others either scorn us, or are in awe of us....but this life is there for taking for anyone. Thank you for your wonderful expression of life!

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  2. I'm an autistic adult with no kids. I struggle, in my own world and own way to become a rebel, I read your entire post with pride and sadness, and tears. We want this for every autistic person and for every person to know how being autistic means not taking for granted that the world automatically feels comfortable, not taking for granted that more effort towards desired outcome corresponds to desired results, where language, ideas, connections, form, value, the very embodiment of being human hums a different tune.

    As a young person who didn't know I was autistic, the art community offered the embrace of difference, of seeing differently, of shifting modalities as an almost avante-garde act of genius. Aurtists abound because experience of the world is not a given, and it is a loss for those who cannot see the beauty. I sound the alarm at the enforcement of a narrow and unimaginative view of humanity. The future of the world lies in the rebels. Thank you for your fierce commitment to loving real. -KL

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  3. This is heartwrenchingly beautiful truth. Thank you.

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