Sunday, April 20, 2014

Random Reflections On 32

This post is dedicated the wonderful, inspirational advocates at the Parenting Autistic Children With Love and Acceptance page. You have changed my life. I am eternally grateful. Thank you. 

It's the eve of my 33rd birthday.

As a person who is prone to self-reflection, I often spend this night in deep thought over the year that has passed, asking myself: What were the milestones? Where was I then, and where am I now? Where am I going?

Perhaps more than any other year, this one was transformative.  While no significant life changes occurred, the changes inside me as a human being were massive. Looking back on the person I was only 365 short days ago, there are things about me then that I would hardly recognize today...

In many ways, I have found a great deal of inner peace. I am 'good'. Good with my marriage, my family, my home, my career, and my overall place in the universe. I feel more aware of who I am and of how I fit into the world than I ever have before. And, behind the tired, baggy eyes and the all-too-often-overworked furrow in my brow, there is a deep sense of happiness that fills me.

Yes, this was a year of change.


As is true in all times of turbulence- change whisks away many of the pillars that we've built around us, crumbling them to dust and forcing us to rebuild from the ground up the framework of our souls.

For me, these piles of dust gathered around me are like ghosts that linger to haunt me.

This year, I have lost many friends.

Some have drifted away, slowly pulling back- whether intentionally or not- until they are so distant that I am pressed to remember when we last spoke.

Others, went out like flames, extinguished instantaneously, often due to heated situations and almost always leaving a wound that still burns when I stop to think about it for too long.

While I'm not new to lost friendships- I suspect few people reach their thirties without having lived the experience more times than they care to remember- what marks this year as unique is that there seems to be a resounding theme as to why they have ended.

I just don't feel like I know you anymore. 

You're probably right. I didn't know me either. Not until this year.


This year, for better or for worse, was the year of Autism.

Or at the very least, it was the year where the word Autism stopped being profane and sacrilegious, spoken of in hushed, foreboding whispers...

This was the year that 'Autism' was screamed from my rooftop, like a war cry or a rebel yell.

It was the year that I learned to move past rhetoric, to confront fear, to embrace diversity and allowed myself (forced myself?) to become an amplifier for a social movement of acceptance and respect.

This was the year I discovered what it truly meant to be "Sam's advocate". Where I learned that I needed to do more than cry out for services and support; I needed to cry out for social reform and revolution.

What Sam needs more than Speech Therapy, what will serve him infinitely better than an OT, is simple: Acceptance and human rights.

Because one day Sam will no longer be a 'child with autism'...he will grow to become an Autistic adult. And, as I have learned this year, the world that he is inheriting is all-too-often cold and cruel.


This was the year that I learned to listen. Really listen.

When your child doesn't speak, you have to learn to listen all over again. Not with your ears, but with your heart.

And Sammie speaks. Sometimes, he speaks so clearly that it is unbelievable to me that people believe he can't communicate. Sometimes, his feet scream louder than any words I have ever heard. Sometimes, his hands tell stories that break your heart. Sometimes, his eyes play every single string of my heart...

Sammie has a beautiful voice.


This was the year I met others like Sammie. Some in real life. Some online. Some only through their own writings.

This was the year that I watched as the world silenced these voices. I watched on as it tied them up in chains, and attempted to strip them of every ounce of dignity and self-worth they have.

This was the year that I realized that, all too soon, the world would silence Sammie.

At any cost.

This was the year of Charlie.

This was the year of first smiles, first crawls, first laughs, first words, first steps, first kisses, first everythings...tiny little check marks on a list of milestones...

Lists, written by doctors, who think they know my child.

But no where on the list does it ask me who she is.

All it wants to know is what she can do.


This was the year of deciding that my children were more than check mark and spaces in between.

This was the year that I discovered that parenting can be an act of defiance and of revolution.

That the most fundamental gift I can give my children is the gift of human rights.


This was the year that I chose to make others uncomfortable in the hopes that one day my children will be allowed to be comfortable.

This was the year that I learned that the biggest check mark I needed to make was against my own privilege.

This was the year that I discovered that one person can be a bullhorn.

One person can change the world.


This was the year that I lost a lot of friends.

They say that I lost myself in Autism Awareness.

They say that it has become all that I am.

What they don't know is this: I don't give a damn about Autism Awareness. 

And if you think my posts are about Autism, you've missed the entire point. 

I do not write for you to become aware of Autism.
I do not speak of these things so that you can get better insight into my life.
I do not advocate for what I need today.

I write because my children's rights depend on it.
I speak because this world believes that he does not.
And this world believes that words are all that she is.
I advocate for what my children will need tomorrow, and every day, for the rest of their lives.

I do not care if my words make you uncomfortable.
In fact, I hope they do.
Social movement only happens when it becomes harder to stay the same than it does to change.

This was the year I learned who my friends are.
The year I learned that some, though separated by time and distance and life-inconveniences- will always be there for you in your times of need.
The year I learned that I am surrounded by some of the most wonderful, intelligent, powerful people I have ever known, and that I am humbled and deeply blessed to have them in my lives.
This was the year that I watched as an army rallied around my family...around my son
This was the year that I learned that I am not the most important person in my children's lives.
Every single person they interact with and build relationships with will impact who they are, and who they are to become.
This was the year that we carefully chose- sometimes in very difficult ways- who we would allow to impact our children.
This was the year that we carefully chose- sometimes in very difficult ways- who we would allow to influence us.


This year I lost a lot of friends. But I also made many new ones. And some of my friendships deepened in a way that I never dreamt imaginable.

This was, in many ways, a year of loss.

But for the first time in a very long time, I feel I have found meaning.

And I have finally found myself.


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  2. New comments not allowed regarding the murder/suicide I see... why not? Don't want more people calling you out for "knowing exactly what you will do" if in the future you are in that mom's shoes? Your son is 4, you have NO IDEA. Facts are facts, it was a murder-suicide and I oppose euthanasia of all flavors, but I also oppose cruelty of all flavors. By slandering this mom, you have slandered many many parents of severely autistic (and other challenging dx's) children. Congrats, I hope your attitude toward others serves you well.

    1. I have not slandered this woman. I have said that she murdered her child. This is a fact. Otherwise, she is hardly even mentioned.

      I am the parent of a severely autistic child. This is not an attitude towards others. It is an attitude towards those who are killing children. End of story.

      Any further comments on this post that are not relevant to it will be deleted. If you insist on comment, you can do so on the facebook page, where you will find hundreds of other parents of children with complex needs will also disagree with you. And yes, my attitude towards my son and towards human rights has in fact served me very well. Thank you :)