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.