Autism – Is it really our duty to educate you?

I’ve gotta admit that I was one who felt personally responsible for educating people, in my community mostly, about autism. However, my attempts to education were not always well received. I’d given some thought to the process, but was not able to put it into words as it had been done here. The words and reasoning in this repost have given me new life and understanding in how I have felt betrayed by my efforts in some ways and ostracized in others. Thank you, Seventhvoice for putting into words what I could not.

Seventh Voice

Artwork by San Base

Many within the Autism community seem to feel that we have a duty to help educate ‘professionals’ by exposing our own personal experiences of Autism to them with in Autism specific forums.

Personally I’m not at all sure that I agree with this premise, as it all too often holds the potential to place  those of us with Autism,  in the unenviable  positions of feeling over exposed.

Which for many, can also amount to making us feel vulnerable.

The belief that it’s up to any one particular minority group to educate the wider community in order to create the understanding that they have the right to be treated as equals, is an issue that many other minority groups have faced.

And just like those within the Autism Community, many other minority groups have also had to cut their teeth on the harsh reality that not everyone who’s interested in you…

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My Prayer

In the still of morning,

I can hear my spirit quake,

Under the pressures placed upon me.

The weight of which is great.

 

I reach out to you,

Seeking your face.

My hair continues to fall,

As a rash spreads over my face.

Father God, please hear my voice

I need your saving grace.

 

I begin to tremble.

As I walk to my favorite chair,

There is where I sit and pray,

Hoping to hear your voice today.

There is where I expose all my cares,

While giving You thanks and praise.

 

Father God, who art in heaven,

Hallowed be thy name.

Thy Kingdom Come,

Thy will be done,

On earth as it is in heaven…

 

I Thank God,

For breathing life into the lifeless,

Giving strength to the weak,

Instilling courage in the fearful,

And empowering to the meek.

 

I continue to tremble as I pray,

Giving thought to the needs of THIS day.

Please God, help me not to feel this way.

This is the reason I’ve come to you to today.

 

Please forgive me for what I am about to say,

But my heart grows heavier with each day,

As I seek refuge from the storm,

Of things thought to be long gone,

Past transgressions, pain, and long sufferings.

The only things I have as an offering.

 

In Jesus’ name, I give thanks to You,

For all that has been given,

Though it seems that some of what has been given,

Is in grave danger of ending.

I hold on to hope as one door is closing,

That another shall open graciously exposing,

A new day.

 

I know you’ve been with me,

You’ve never left my side.

Even when I turned my back to you,

Declaring that I wanted to die.

You would not let me die.

 

You promised that you’d take care of me.

In this I truly believe,

But Father God how much must I take?

How long will my heart have to bleed?

 

So I sit here before You,

I cannot hide,

Asking your forgiveness,

And shedding all pride.

I’m still learning to trust you,

I do not deny,

But, I grow ever more weary,

Teary eyed and tired.

 

I watch that which has been given,

Fading away.

I’m powerless to do anything without your say.

Please Father God, I need you today!

Not just today…but everyday.

 

Then I lift my eyes to heaven,

Thanking God again for this day.

Acknowledging His goodness,

In every possible way.

 

Just when I think that I’ve said all I can say,

A few more words start to gave way,

Thanking God again and again for everything given,

The great, the small, the house that we live in.

 

I Thank you Father God,

Giver of love, mercy and grace.

I Thank you Father,

For the smile on my face.

For being able to watch my son grow up,

For being his mom and loving him so much.

 

I am grateful for all that is coming,

peace, joy, prosperity, even long suffering.

I am grateful,

For all that has made me humble.

For you teaching me patience,

And catching me when I stumble.

 

I come filled with thanksgiving for many things.

Things that I have…Things that I hope for…Things yet to be.

I thank you for almost all that I see.

I thank you Father God for living and loving,

Even for showing me how to repair the oven.

 

Amen.

A Little Something: Today’s Lament

Today was not too different for me.

My son arose at 6am and he,

Put’s on a movie playing it very loud.

Not just any loud,

But playing the same section over and over again loud.

Darn that AB button.

He bursts into my room,

Giving me a huge kiss on the cheek,

Before grinning and spinning on tippy toes,

While reciting repeating lines.

It’s going to be a happy flappy day.

I got up a little later,

Said my prayers and made breakfast.

I’ve quite enjoyed taking this little break.

Most of my days filled with following up on correspondence,

Debugging the front porch and then blogging about it,

All while enjoying a cup of hot tea.

I’m sitting in front of my computer,

Thinking of what to say.

Does it matter?

Will anyone read it anyway?

Aww, in comes my little dog Ginger wanting to play.

Oh look, she brought two friends,

That I’ll spend hours swatting away.

Stressing, stressing, stressing, stressing,

I’m so tired of stressing today.

Another sip of my lukewarm tea takes all the worry away.

What is that I hear?

Could it be,

The microwave’s buzzer in my ear?

My son’s just made lunch.

How much time has gone by?

As I still sit here glaring at my screen,

Losing the will to try.

Does anyone really care,

About the words I struggle to say?

I think I might give up on it and try another day.

No…no I won’t! I’m going to write a little something today.

So here it is, my lament as you see.

I rejoice spinning and grinning with glee,

Feel like singing from the trees,

That I so cleverly wrote this post with ease,

All while taking another sip of my ice cold tea.

Wake of Honesty

In the wake of my honesty,

I am afloat.

Blocking external noise,

Hearing only the internal.

I am changing.

My voice is changing.

I don’t fully understand it,

But embrace it.

I am alone.

 

In the wake of my honesty,

Surges rush through my veins.

Light fills me.

Could it be illusive freedom?

I sit down to my computer.

And I write.

It doesn’t sound like me.

 

In the Wake of my honesty,

Shadows become clear.

Thoughts blocked by past transgressions reappear.

Venomous words,

Hateful stares,

Beatings,

Silence.

 

In the wake of my honesty,

Truths are revealed.

Heavy,

Painful,

Awful truths.

They introduce themselves one by one.

Forced to face them.

Time once lost returned home.

Filling the gaps of my youth.

 

In the Wake of my honesty

Strength renewed

Uncovered,

Rediscovered.

Risen from the ash.

Great strides made,

More ground gained.

Freedom still light years away.

The Feed

My struggle with Night Eating continues. I’m still not able to wrap my mind around writing about it. I don’t understand why it’s so difficult for me. A few years ago, I created my first blog. It’s not fairing well. There’s been quite a few hits, but that’s because of the name, not the content. I revisited that blog on several occasions, deciding not to determine what the blog would be. Instead I will write and allow the blog to show me. I still can’t see. Perhaps, I’m blind to it. Thoughts still adrift the top of leaves on my dysfunctional family tree.

How can I suffer with something for so long, but can’t manage to write about it. My mind is tired and I am at a loss for words. Brain throbbing, filled with thoughts that cannot be purged. Perhaps I am plagued with the need for perfection which is something I will never achieve. Curse my parents for beating this need into me. I am enslaved to it and choked by it. With all that I am I vow to find a way. If nothing other than to write my disjointed ramblings.

As a ploy to rekindle my thirst for writing, I read my bio hoping to find something viable. Something that I can resuscitate. But there is nothing. Nothing but benign words depicting an empty space where my spirit is supposed to dwell. Still nothing there.

I try to think of clever titles for my ramblings. Can’t even do that right. I shouldn’t be surprised, but I am. After all, I think that I am feeding off of something tangible. Truth be known there is nothing to feed off of. My life is but a misty, dusty space filled with dark shadowy figures and the ever present stench of fear.

It’s 4:03pm. I’ve forgotten to eat again. The pattern is re-emerging. I’ll eat a little something now, as my mind cruises through the kitchen cabinets, pantry, refrigerator and freezer. Oh, wait…I have chips. Deep inside I know that I am headed to a bad place. A very dark place. Moving into action as the planning begins. Systematically pairing starches by texture and taste. If I’m not careful I will binge tonight.

I’ll need to go out in a little while. Must be careful not to pass by any fast food places. I’m not strong enough to dry by without a taste. I’ll go directly to my destination and back home. My hope is to cook a nutritious meal and set aside a snack for later. I hope I will be strong enough…

Last night I ate a large bag of chips. I hope not to do the same tonight.

 It’s time for the animals to begin their feed.

We sniff and scratch for signs we need.

Look over there.

Do you see what I see?

The scavenge begins.

Like worker ants we will collect our swell.

We will feast through the night and all will be well.

I Don’t Care

I don’t care that you won’t return my calls.

I don’t care that our friendship is over.

I don’t care that you act as if you don’t know me anymore.

I don’t care if it bothers you that I am autistic.

I don’t care!

I don’t care that you question who I am now that you know my secret.

I don’t care that you question your inability to see me all these years.

I don’t care that I somehow found the courage to tell you and you did not receive my words well.

I don’t care that you have no compassion for me.

I don’t care!

I don’t care that most of my family shuns me. They were never there for me anyway.

I don’t care that the illusion you stew in is bitter to the taste.

I don’t care that you blame me for all that has happened to me.

I don’t care that you think I’m stupid, incapable and slow even though I am smart. You don’t know me.

I don’t care!

I don’t care that you’d rather point your finger and stare at me, rather than have a conversation with me.

I don’t care that I am an embarrassment to you.

I don’t care that you can’t understand why I don’t care about fashion.

I don’t care that I’m not interested in “normal” things like you.

I don’t care!

 

But I do care that I am a great mom to my autistic son.

I do care that there are those who see me as trustworthy and innocent.

I do care that I have feelings and empathy, more than most.

I do care about how I see myself.

I love me and I love my son.

I love you even though you don’t love me.

I care that you are closed minded, because it hurts you.

I care that you are judgmental because you miss out on knowing wonderful people.

I care that the one’s you call friend are not loyal to you like I was. They judge you harshly like you judge me.

I do care for all of you more than you will ever know. You will never know because you don’t think I’m able, but I am.

I will care for you and all of your flaws because I know what it is to be flawed.

I will cry for you because you do not know true happiness, peace or freedom, like I do.

I will pray for you that your heart beats with love and not hate for that which you do not understand.

I have hope for you that one day you will understand and be a better human being for it.

I still don’t care what you think of me. I am who I am and I make no apologies for it. I will never hurt you like you hurt me. That is the biggest difference between YOU and me.

My Mother’s Womb

 

Coming into being,

In the tomb of my mother’s womb;

Where life begins and ends.

Born only to be worn as an appendage,

Bended and extended on the outside,

A tumor benign.

 

She tries keeping me locked in,

A well-kept secret.

Covers me with painted rocks,

Determined to hide the pain,

The shame,

Two lives stained.

 

Choked by the umbilical cord of her desire for perfection,

Her natural reaction,

Faceted me like a world class attraction;

All for her satisfaction,

And the cost,

A mere fraction of a life.

 

She paints on her disguise.

The doorbell rings…

Let the games begin!

As she pretends to be perfect and wise.

It was all a lie!

No-one heard my cries.

 

In the tomb of my mother’s womb,

Is where my life begins and ends.

Risen out of the swell,

To be birthed into hell.

A place that I’ve grown to know all too well.

Expression without Protocol

On the spectrum is where I reside.

It’s where I learned what to say…how to act.

Robotic and monotone,

Actions never quite my own,

Repeating myself verbatim with same inflection…an undesired reaction,

Words borrowed from parental scripts.

I sit motionless…expressionless…mostly seen as less than,

Rather than, being treated like the rest and…

I open my mouth to scream, but no sound comes out.

Thoughts racing through my mind,

So much I want to share;

Do I dare?

Peers frown upon,

May even look down on,

Managing to talk down to,

But never getting around to,

Learning who I am.

So, here I am.

Gifted…still somewhat scripted,

Fumbling with choice,

Struggling daily to find my own voice;

Remembering all that I’ve been taught;

Communication’s raught.

Haunted by past transgressions,

Troubling instructions,

Finding my way towards speaking freely,

By way of constantly seeking…

Finally achieving;

Expression with meaning…

Sadness and Mourning

Sadness and Mourning

Sadness and Mourning

Sadness and mourning are one in the same. It is not important why you are sad or for what you mourn as it is all the same.

Is it that time heals all wounds or could it be that wounds help us pass the time?

One does not have to lose anything to feel a sense of mourning. A simple change can provoke this emotion. Once change has been accepted there is an automatic sense of gain. So does it mean that one has to lose to gain or is it by mere acceptance of change that fulfillment has been achieved?

Why do we hold on to these emotions…sadness, shame even taking on blame? What do we stand to gain?

When life feels dark and heavy do not expend your energy carrying the weight of it; let it sink deep into the earth…deeper…deeper.

Rise and leave it there.

REVEALED

REVEALED

It is in this moment when we think no one is watching.
This moment when all is still.
An old familiar surge occurs,
And we imagine ourselves invisible.
Cloaked in our own illusions.
It is in this moment the truth of our nature is revealed.

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