Autism, or Something Like It: Expressions of PosAutivity: #AutismPositivity2014″

Everything I need to know about parenting, I learned from Mr. Holland.

Growing up, I was often told that I was born with the "song of God written on my heart".

That when I sing, it is like "listening to the voices of angels, heard on earth". 

That there was "something about my voice that moved the soul". 

Well, I don't know much about God's music preference. 

And I've never heard an angel sing. 

But I do know that music feeds my own soul; singing makes me feel alive.

***

One of my favourite movie's is Mr. Holland's Opus. I relate to this man, to his passion for music and his passion for life, in a way that is hard to express in words. I understand him. I understand why he chose his family over his music; how he never achieved fame, but managed to achieve greatness. 

I made this choice as well. And it is a choice I have never looked back on. 

But there is another side of this character that I could never have predicted would hit me so close to home. 

He became the parent of a deaf son. A son who could never experience music the way he experienced it. A son that he was afraid he could never relate to because of this.

The scene where he discovers that his son is deaf is heartbreaking. Even as a young child, I remember feeling this man's anguish, his fear, his desperation. 

I remember so vividly understanding his anger at the world. 

How could a man whose entire life revolved around music ever relate to a child who didn't experience it first hand?

This became my greatest fear. I became terrified of one day having a child who could not talk to me, a child who could not sing.  I became phobic of having a child with a disability.

***

Singing is how I feel alive. How could a person feel alive if they can not sing?

***
In the film,  Glenn Holland (played devastatingly well by Richard Dreyfuss), battles his own demons with his son. You see him going through the stages of grief. You watch as he rejects this child because of his disability.

(Transcript from the movie Mr. Holland's Opus, as taken from IMDB)

[Glenn and Iris are discussing the possibility of sending Cole to a special school]

Glenn Holland: The doctor said that gestures meant...

Iris Holland: It's way more than gestures.

Glenn Holland: That gestures meant that Cole would never learn how to lip read or to talk!

Iris Holland: He can barely talk now, he can't say two or three words!

Glenn Holland: The guy is a specialist, Iris!

Iris Holland: Ohhh, he's a specialist who thinks that deaf people are retarded and he is not retarded, he is...

[Cole is screaming, asking for something and Iris doesn't know what it is]

Iris Holland: Cole!

Glenn Holland: What does he...? Give him what he wants!

Iris Holland: I don't know what he wants, I don't understand what he's trying to say. Don't you get it? You walk to school every day with all these children who are normal. I can't talk to my son! I don't know what he wants or what he thinks or what he feels. I can't tell him that I love him, I can't tell him who I am. I want to talk to my son! I don't care what it costs, I don't care what the stupid doctor says it's right or wrong. I want to talk to my son!

***

I have a four year old son. He is Autistic. And he is non-speaking. 

I use that term very deliberately: Non-speaking, as opposed to Non-verbal. 

Sam doesn't use speech. 

But he does have a voice. 

***

Glenn Holland continues to have a torn and troubled relationship with his growing child into the teen years.

That is until the child fires back in an incredibly poignant scene: 

(Transcript from the film Mr. Holland's Opus, as taken from IMDB)

Iris Holland: [Iris is translating Cole's signing for Glenn] Why do you assume that John Lennon's death would mean nothing to me? Do you think I'm stupid? I know who John Lennon is.

Glenn Holland: [Glenn turns to Iris] I never said that he...

Iris Holland: [Iris continues translating] I cant read your lips if you don't look at me.

Glenn Holland: [Glenn looks back at Cole] I never said you were stupid

Iris Holland: You must think so. If you think I don't know who The Beatles are or any music at all. You think I don't care about what it is you do or what you love? You're my father. I know what music is. You could help me to know it better, but - no. You care more about teaching other people than you do about me.

Glenn Holland: [Cole makes a final gesture, Iris doesn't translate it] Iris... What does this mean

Iris Holland: That means "asshole".

***

No, Cole was not 'stupid'. Cole was not incapable of grasping the incredible events happening around him.

Not being able to hear is not the same as not being able to understand.

Not being able to speak is not the same as having nothing to say.

*** 

By the age of three, Sam had not acquired any functional use of language. He intonated- mades sounds to express glee, frustration, or anger- but we were told that these did not count as "communication". "He is just making sounds," said the SLPs. "They don't have meaning."

We were told that he was shut out from the world, possibly not even understanding the emotions and experiences of those around him.

We were told he might never learn to communicate.

"Low functioning" they say. As if words are the only expression of capacity.

***

Something changed for Glenn Holland the day that his son expressed to him that he was truly capable of understanding and relating to the world despite his disability. Something in his heart softened. Something in his mind opened.

A connection was made.

And he became a very different person.

A very different father.

He learned- through the example of Beethoven and hearing through vibration- that music could be accommodated to meet his son's needs. He learned that while Cole might never be able to hear with his ears, he could hear with his heart and experience its pleasures.

He created music for the deaf. And he told his son that he was beautiful.

 ***

Music has always resonated with Sam. It should not be surprising to me since his father and I are both musicians, and music occupies a deep and meaningful place in our lives.

When he was about three and half, Sam discovered an app on his ipad that played his favourite song.

"Twinkle Twinkle, Little Star"

He played it over and over.

You could tell he loved it.

Even if he couldn't tell me so...

Until one day he did.

***

From the darkness of his room, lit only by his ipad, I could hear his little voice 'intonating'.

"It means nothing," they told me. "It's just sounds."

Until the sounds take shape. And a song is formed.

And my child sang. For the very first time. 

But it would not be the last.

***
I have often been told that my voice is like the song of God, written on my heart.
That when I sing, it is like to the voices of angels, heard on earth. 

Well, I don't know much about God's music preference.

But I do know a thing about beauty.

Beauty is the sound of my son, learning to sing in a world that told me that he can not.

Beauty is in finding your voice, whatever shape it may take, and sharing it with the world.

Beauty is in learning to sing because your heart occupies so much joy that it can not contain it.

It simply must be expressed.

***

I am far from a perfect parent. But I learned an awful lot from that movie.

I learned that grief is a natural part of the human experience when things turn out differently than we imagined.

I learned that my fear was a reflection of my ignorance, and that it was unfounded.

I learned that the only way to form a meaningful connection is to cast aside your preconceived notions about what communication should look like, and learn to find a language that you both can share.

I learned that to love your child isn't to try to change them; it is to change the world for them.

 I learned that having a disability does not- in any way- impact your capacity for human understanding. 

I learned that unconditional love and acceptance could move mountains and break down barriers.

I learned that the life had been terrified to lead was the life I was meant for.

That nothing makes me feel more alive than thw voices of my children.

One day, I will share Mr. Holland with Sam, and he will know that my journey to acceptance really took flight the day I heard him sing.

This post is part of the 2014 Autism Positivity Flash Blog: Expressions of PosAutivity. For more information on this event, please visit the Autism Positivity website. To read more posts that are part of the flash blog, please use the #autismPositivity2014 tag. 

Flashback: Teacher of Murdered Gay Student Says She Relates to His Killer

Remember this: http://gawker.com/teacher-of-murdered-gay-student-says-she-relates-to-his-1442431255 

Remember how to world lost it over this teacher's "sympathy" with the perpetrator of a hate crime? 

It is NOT ok to 'relate' to killers. Whether they be killers of gay teens or autistic ones.

#noexcuseformurder

Members of the Media: Stop endangering my son's life

**Update: As was brought to my attention by an advocate I hugely respect, one of the lines in my original post alluded the to need for 'mandatory psychological evaluations' for caregivers. This idea was hastily written, and not considered.  Upon reflection, it in no way is one that I actually agree with or promote, and I do not in any way believe that we should vilify any human being with mental health issues, including invading their privacy and imposing government sanctions on their ability to parents. As someone who has been diagnosed with Obsessive Compulsive Disorder, Social Anxiety Disorder and Post Traumatic Stress Disorder, I know first the social judgment that accompanies a mental health diagnosis. The neurodivergent community needs our support and understanding- whether that be for those who are Autistic or for those who have depression. As such, I have edited this post and hope that those who were hurt by my comments accept my very deepest apologies.  Many thanks for my friend Deanne Shoyer at Small, But Kinda Mighty for bringing this to my attention.**


Dear Members of the Media,

My name is Zita and I am a mother. I have two beautiful children, my son Sam who is almost-four and my daughter Charlize who is 14 months.

I want to talk to you about Sam.




Sam is a beautiful boy. He has curly blonde hair and big, soulful blue eyes. He loves to swim. He loves to play in parks, especially on the swings and on the slides. He loves trains, and carebears, and puzzles, and building blocks, and music. He laughs- a lot- the kind of big, boisterous laughing characteristic of a four year-old boy. He is learning to read and write and can even spell out his name with puzzle pieces. He adores being outside, and happily takes long walks to commute with nature. He is extraordinary.

And today, you put his life at risk.

Yes, members of the media. You are endangering my son's life.

How, you ask?

Well, aside from being a loving, affectionate child who is full of life and joy, Sam also happens to be Autistic. So "severely autistic that he [can] not speak" (to quote this article from The Province). 

Sam's world can be a very intense place to live in. Bright lights, loud sounds, crowded spaces, and strong smells can all lead to very strong reactions in his body.  These sensory differences, along with his significant communication challenges, can sometimes create barriers to socializing in a way that is expected and deemed 'typical' for his age. He loves things intensely- some would even describe this as obsessively- and feels just as strongly about the things he dislikes.  Sam's world is a complex tapestry of extremes, battling it out with each other.

Sam is, at this time, unable to use any words, signs or alternative communication with consistency or regularity, and communicates exclusively through his body and his behaviour. He has repetitive stereotyped behaviours that he uses to calm his extremely sensitive sensory system, and generally maintains a very happy, calm demeanour.

But sometimes, as we are all prone to doing, Sam gets frustrated.

And sometimes, this means that he has very intense and physical manifestations of his frustrations.

There are many reasons why Sam gets frustrated. Some are related to his Autism and some are not. But without adequate alternatives for expressing himself, Sam is left with little option but to express his feelings in the only way that he is able to do so. To some, this may be perceived as aggression. It may even be perceived to be "violent and out of control" (to quote this article from Global News Vancouver). But violence, by its very nature, insinuates an intention to do harm.

Sammie has no intention of doing harm. To him, his physicality is the only form of communication that is currently within his control.  This is typical for many Autistic people.

But he is not "suffering from Autism".

He is a happy, loving and well-adjusted Autistic boy. And the only thing that he suffers from is an extraordinary amount of misinformation, propaganda, and dehumanization at the hands of our society.

And, at the hands of you- members of the media- by virtue of being the primary agents for the proliferation of these stereotypes, propagated under the guise of "news".

Today, I learned of another death in our Autism community. The death of a child at the hands of his "loving" mother.

The murder of a child. Sadly, he is not the first, but his story hit me on a deeply personal level.

His name was Robert Robinson. He was "a big 16 year old", non-speaking Autistic child, and he loved the outdoors. He felt calm and free when walking beside the ocean.

Sam loves the outdoors too...

I would love to tell you more about Robert...really, I would. But I can't.

Because you didn't tell me about who Robert was. All you told me was how difficult he was for his "100 pound, shy, loving mother" to manage.

All you told me was about how his existence was a 'burden'; how he made his family, especially his poor mother, feel overwhelmed; how his death was the result of deficiencies in the 'system'.

Yes, members of the media, you told a story. And in doing so, whether intentionally or not, you propagated the same lie that you have been telling for hundreds of years: That disabled people's right to life is solely dependent on whether or not abled people are willing to grant it. 

You see, in your stories, you miss the point: A child was brutally murdered by their parent. 

There can be no excuses for this. There can be no sympathy or compromise. There can be no justification that allows for parents to take the lives of their children- the most vulnerable members in our society.

You are spreading a lie when you say that the 'system' failed Robert.

His mother failed him.

His mother systematically planned out and executed his murder.

And then she executed herself, unwilling to live with the consequences of her heinous crime.

You called her 'loving'. You said she was a 'victim'.

Your headlines spoke of her.

"Prince Rupert mom left suicide note saying she could no longer care for severely autistic son."
"Distraught woman killed autistic son then took her own life"
"Prince Rupert family's ordeal ends in tragedy"
"Tragic deaths in Prince Rupert avoidable"

No where in your headlines do we read the word "murder".

Nowhere do we see "Disabled, vulnerable child executed by the one person in the world who was supposed to protect him."

In fact, throughout almost every article, Robert's death is treated as a side-line item, an almost inconsequential aspect of the story. The real story that you are telling is of a 'system' that failed a mother in need- so gravely overwhelmed by her violent, 'unmanageable' son.

And, in doing so, implicitly, you are blaming Robert for his own death. After all, if he had only been easier to manage, this would never have happened.

And while there are certainly questions that need to be asked of the system, not once do you ask what the government is going to do to protect vulnerable children from their 'potentially-murderous' parents- because we know that to imply that all parents are capable of killing children is wrong (Edited to add: implying that all parents of special needs children, if they aren't given the right amount of 'supports' are capable of murdering their children is equally wrong which is another significant issue with the language in these types of articles.)

Not once do you ask what sort of non-violent crisis intervention parents are required to take, despite knowing that the biggest risk of violence towards children is at the hands of their caregivers.

Not once do you examine the need for complete access to family and child counselling services that is free of any economic and/or social barrier.

Not once did you comment on the need to ensure that disabled children are in environments where they are not placed at further risk.

Instead, you are busily portraying the caregiver as the victim, instead of the perpetrator.

Why is that?

I don't know.

Maybe that's the kind of story that will sell newspapers. Or maybe it's just that you have an incredibly difficult time understanding how any caregiver who has a severely disabled son could ever refrain from attempting to kill them.

Either way, here's what I know:

You, members of the media, have a social responsibility. As the ones charged with bringing the world its news, you must be accountable for the information that you are disseminating. And, as such, you have a responsibility to be accountable for the consequences of these stories.

The story you told when Robert Robinson died is one that reenforces that a disabled child's right to life is proportionate to the amount of government services a family receives. That it should be up to the government to ensure that these children are not killed, instead of up to the parents who should be charged with keeping them alive, at the very least. That Robert Robinson was murdered by the state, and not by his own mother.

You have devalued his life down to a dollar figure, and in doing so, you have also devalued my child's life as well. You have painted me out as a victim of the overwhelming burden my child places on my life, instead of as a mother who has the legal, ethical and moral responsibility to provide him with the a life in which he can thrive.

You have placed his life at risk by telling society that violence towards him is understandable. This is a message that is being heard by his peers, his teachers, and every single human being he will have contact with.

When you blame the victim- when you call into question whether their behaviour was an understandable reason for the violence committed against them- you are tacitly exonerating the perpetrator.  This is as true for the murder of disabled people as it is for rape, hate crimes, or any other crime against one's person.

When you normalize violence towards disabled people, you tell others that it is ok to do harm to my son. And while his father and I will never harm him, we are- sadly- not the only people who would have the power to do so. He will have other caregivers throughout his life. We will not always be there to protect him. 

 I am begging you to consider this the next time a child dies at the hand of their caregivers. I am begging you to tell the child's story, to see the world through their eyes, to understand their vulnerability, to care about their humanity. 

Robert Robinson was 16.
Sam will be 16 one day. 
He was a big, strong teenaged boy.
Sam is big and strong already. He will surely become bigger and stronger with every passing day.
He loved nature and the ocean.
Sam loves nature and the ocean.
He was non-speaking.
Sam is non-speaking. 
He was like my child.

And he was murdered because of it.

Robert Robinson, age 16. You will not be forgotten. RIP <3

That is the story you need to tell in order to save lives.

Sincerely,

A heartbroken and terrified mother.

It should be noted that, at this time, Sam has received the following services from the Alberta government: Early Invention, in which a caregiver came to our home to teach us how to better meet his communication needs, and an early-learning program unit funding that has allowed his to attend a special needs preschool every morning. We have not received any additional services or financial supports for Sam, though these are being made available to us in the near future and will include funding for family coaching in speech, occupational therapy, physical therapy, and behavioural support, as well as some limited funding for respite care. For further information on the supports available to families caring for children with disabilities in Alberta, please visit the Human Services Ministry page.

Typicality: Beyond the Check Marks

I wrote a reflection yesterday. These types of posts are usually written rather quickly. I don't often revise or edit any of my posts (because I'm lazy) but these ones I don't even spend a lot of time thinking about grammar, style, or sentence structure as I write them. They call this technique "free writing" and I use it when I am trying to purge a lot of thoughts out of me that I am struggling to verbalize.

As I was free writing last night, thinking more about the spirit of what I was saying than how I was saying it, I wrote a thought that I think must have been evolving in my subconscious for quite some time. I've never expressed it to myself or others, so it is a 'brand new idea' to me, but I feel like I have been mulling on it for the entire year, and maybe longer.

"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."

 (From "Random Reflections on 32")

14 month old Charlie loves to have tea parties...

My daughter. My wonderful, beautiful, intelligent, capable daughter. 

This child who perplexes me as much, if not more than, her brother. 

This teeny-tiny body, barely 17 lbs and delicate like a china doll, a veritable force of nature...
Barely able to walk and already taking the world by storm.

I don't write a lot about Charlie. 

This is not because I don't think about her a lot, and it is definitely not because I don't have anything to say about her. 

I think about her all the time, and I could speak about her for days. 

No, I don't write about her because I am trying to walk a fine line between invading my children's privacy, and advocating for the acceptance and awareness that Sam and Autistic people like him need. This is a tricky thing, and I don't always succeed. But it is at the forefront of my mind when I write anything. 

And- at this time- I have no indications that Charlie is Autistic. 

In fact- at this time- Charlie is about as 'typical' as they come.

Or at least the lists tell me so. 

She walks- apparently, as of two days ago- which is the only thing she has done 'on time'. She also climbs like a pro, and has for months. She throws a ball. She scribbles and draws. She screws caps back on bottles and pouches of apple juice. She picks up the remote control, turns on the tv on the first try, scrolls the channel button until she finds Treehouse and looks at me, proud of her accomplishments. 

I look back at her, speechless. 

She talks...a lot. All the time. She started using words at around five months old, and now has dozens of them, and learns new ones every day.

Sometimes, she even uses multiple-word phrases. "Nico, hat funny!", she says and giggles away...

And she is already picking up on some two prompt requests. "Go get that block, and bring it back here..." I say, and she complies, all too happy to show me how well she understands. 

She plays. With everything. The way that things are supposed to be played with. She poured her father tea, and asked her cousin to play a game cooperatively with her. She was heartbroken when he stared at her- confused by the idea of "together" play. Children this age play side by side- but they seldom play "together". 

She wants to do everything herself. And she usually can. 

She wants to do everything I can do. And she gets frustrated when she can't. 

She looks in your eyes- or rather, she dominates your eyes. She seeks them out, and stares you down, to the point of invasiveness. Her inquisitiveness knows no bounds, and she has firmly identified herself as the Alpha Female of our household. 

At 14 months, she has almost completely plowed her way through the 'developmental milestones' checklist for 24-month olds. And she is actively working her way through the list for 36 month olds.  

I told you- she's kind of amazing. 

In fact, she may be 'exceptional'. It wouldn't surprise me. We suspect that her brother has traits of being exceptional, traits that will be observing closely as these will add layers of beauty and of complexity to his already beautiful, complex experience of the world. 

But exceptionality isn't something we talk about a lot when it comes to 'typical' kids. By its very definition, typical would indicate an anti-exceptionality. It would indicate a sameness, a 'to be expected-ness'. If you are not delayed, there is nothing unusual or atypical about you. You are 'normal'. And if your child is advanced, then they are seen as even more typical. 

Or, you are seen as a biased, bragging parent who is completely incapable of looking at empirical charts and ascertaining that yes, in fact, your child is significantly advanced and no, you are not lying about it. 

Because there is no "check with your pediatrician" box on developmental charts for advanced development.

There is no reference to it at all.

"Wow, they are really bright! What a smart little girl" they say, and check their little check marks on their list. 

And into the 'typical' category they go. Signed, sealed and delivered: "As expected". 

A check marked affirmation of normalcy. 

While this may seem like one of those 'humble brag' posts written for the sole purpose of highlighting Charlie's awesomeness, I assure you that I have a point. 

Charlie is awesome, yes, but I don't need to feign humility to tell you that. Quite frankly, I have zero humility when it comes to my children's awesomeness...

But her awesomeness has nothing to do with those check marks. 

And it would be rather silly of me to brag about how many she has ticked off when I don't actually believe in the tool to begin with...

No, the intention of this post is- quite frankly- to highlight the ridiculousness of these tools being used as any sort of real barometer about a child's abilities, capacities and future. 

Do they indicate something?

Sure. 

They are great at identifying a very specific subcategory of kids who have traits that are noticeably different enough to mark them with the great big scarlet letters ASD, or other conditions like it. They are great for picking out the kids from the crowd who are just divergent enough to be easily separated from the herd and cast off into their own pastures. 

The lists are great at finding "Sammies", who- by virtue of his non-speaking, happy-flappy, wandering-eye ways- is an easy target for finger pointing and fear mongering...

It's the Invasion of the Autie Snatchers...and they are everywhere. 

But what these lists fail at, in an epic and monumental way, is doing anything more than creating a completely artificial, socially contrived false dichotomy where some kids are deemed 'normal' and some kids are deemed 'delayed'. 

There are only two categories in these lists, and you either fall into one or the other. 

And that's just not the way real life works, folks. 

Real life knows that the real 'spectrum' isn't Autism; it is humanity as a whole. And 'if you've met one person with humanity, you've met ONE person with humanity'.

So when I'm asked if I'm relieved that Charlie is "normal", I have to suppress a smirk. 

Cause at this point, I've met a lot of non-speaking four year olds...but I have never met another one year old who places a tea cup on a saucer, pours 'tea' into it, and passes it to you expecting you to drink from in and join her in her imaginative play. 

There's no box for that under her age appropriate milestone list. That one won't come for a few years yet...

'Typicalness' is a social fabrication; 'normal' is a myth. 

And let me tell you this much: There is nothing 'typical' about Charlie, regardless of what the lists say. 

And I wouldn't have it any other way.  

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.
***

Sammie Speaks In His Own Way

If ever you were wondering if Sammie can understand or pay attention:


Yesterday, Jason and I were shopping for final Easter Egg hunt supplies. 

We discussed several different basket options, and ultimately opted for not getting him a basket since we had no real use for another one and it's not the kind of thing that he would care about anyway...

This morning, Sam goes down to his sensory room and we hear him trying to drag something up the stairs. We didn't think much of it, until Jason went downstairs and found what Sam had left for me on the stair case...Last year's Easter Egg basket. Empty, and ready to be used.

Not speaking is not the same as having nothing to say. Not looking at you is not the same as not paying attention. 

Acceptance as a human right

I've been asked if there is 'one message' I would like people to take from my Autism Acceptance posts, and there is:

Human rights should be non-negotiable. Beyond race, culture, religion, sex/gender, and yes- disability or diagnosis- our key human dignity must always be at the forefront of our experience.

Critical to human rights is the right to self-determination. This right encompasses the right to make choices about our minds, our bodies and our identities. It is about the right to say "yes" and "no" in any language we know. It is about the right for our existence to be about ourselves and not the experience others have of us.

If society hasn't set itself up to meet these criteria, then society must change. It must adapt. It must accommodate. The human being must always trump the social structure. Only then is human equality possible.

It is my hope to set this foundation for Sam so that he might one day become an adult capable of self-determination- not only through his own will but also through social structures that empower and demand it. It is my hope that one day, his value as a human being will not be dependent on how many words he says or even how many thoughts he has; that it be determined by the simple virtue of his humanity, no more or less than tangible than yours or mine.

If there is one message I would like you to take from me this April, it is this: Acceptance means acknowledging, understanding, and respecting that all human beings are equal. Anything less than full equality is an intolerable human rights violation.