Do you know what you’re saying?

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We’ll all find a way.

I’m laughing because he’s laughing; he has a makeshift cat collar around his neck (yeah, really). He meows and rolls his shoulders, pushing them up and over whilst flexing his fingers. ‘Cats have paws, they use their paws for walking on’ he instructs the playground after school. He’s making his eyes big and sniffing the air.

‘Oh this is the boy with autism?’ What’s he doing?’ asks Lady at School,

‘He’s Autistic and he’s being a cat. He really gets into it.’ I’m smiling.

‘I’m so sorry, I’m sure it’s difficult.’ I stop smiling.

‘Nah man, cats are great.’

I walk away to defiantly scratch Cat Child behind the ear. He purrs.

I’m hurting and so angry I’m shaking, because Lady at School doesn’t get it. Please don’t tell me you’re sorry, especially not in front of this vibrant boy. You’re diminishing him, you’re dehumanizing him and you’re stating that this life and child I cherish is to be pitied.

What I want to do is challenge Lady at School: Would you change your child?

Would you take away a smidgen of the intensity they have? Their humour? Their love and astonishment at the minutiae of life? Would you excise the bits of them that make them yours, the bits that call you to be stronger and prouder than you expected to be? What would you extract from your child to make your life less difficult?

Even if this isn’t what you mean when you apologise to me for my sons existence, think carefully about the words.

Do you know what you’re saying?

It’s night-time and it’s quiet. Which is unusual, in our house. My husbands phone beeps and I watch his face harden in the darkness as he reads the message. He throws me the phone. ‘Have you heard of this cure?’ it reads, the letters are burning in the dark. ‘Are you going to reply?’ I ask, he sighs and runs his hands over his face a few times, a gesture of defeat. ‘No, it’s not worth it.’ I drift off to sleep with him still awake beside me.

How sad that we’ve learned this lesson already. That it’s not always worth it. When you send us links to cures, you’re not helping us – you’re hurting. You’re reminding us that you and other people see our child and our family as suffering. Maybe you see requiring help and suffering as the same thing?

The help we need is practical. We need people to understand that we stagger social events, we need days at home to rest in-between. We need people to understand that sometimes our son requires us, a substitute is not always acceptable. The list of people we trust to be that substitute is short (but those people are magnificent). We’re not interested in pouring time and energy into changing our son, we’d rather change your perceptions. Perhaps you think you’re helping? Trying to make our lives easier? Helping us is fantastic, we’re not interested in ‘cures for autism’ but I guarantee you can make a lasange that doesn’t suck as badly as mine.

Do you know what you’re saying?

A quick after school meeting. I’m talking to his teacher about how he’s going, are the things we discussed working? His need for regular sensory breaks (running like a maniac, usually), a safe squashy place he can hide in when things are noisy and respecting his need for thinking time instead of endless prompts.

‘Yes, he’s doing very well, so we’ll start dropping his breaks and see how he goes. It’s important he’s like the others.’

What I hear is: ‘Meeting his needs is working! He’s happy and enjoying himself. So lets fuck it up because basically, he’s still not normal.’

Is neurotypical really the only acceptable thing to be? What if he’s just not like the others, and never will be? He’s learning the ebbs and flows of his brain. He takes himself away when he needs to re-charge, and hurls himself into the middle of activities he’s excited by. He’s learning about himself, isn’t that the goal for all children? Just let him be autistic. Let him be successful and entranced and nervous and silly and autistic, let him be himself. Grant him the basic right to be acceptable just as he is, a right I don’t see any other prep parents defending for their kid.

Do you know what you’re saying?

He’s perfect, this kid of mine. But I’m getting tired of having to explain that to people. Please, think about what you’re saying.

 

Linking up with The Annoyed Thyroid here

 

 

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12 thoughts on “Do you know what you’re saying?”

  1. People think they’re being well intentioned but really, they’re ignorant and willfully so. Why not try to learn more instead of dumping unnecessary pity on someone- who does that ever help? Your son sounds like a real character 🙂

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  2. Oh my gosh. I am lost for words. I love what you’ve written and I feel deeply moved by it. Every child is unique. Every one of them, whether given a label or not! Sadly any child who stands out from the crowd for whatever reason is regarded as ‘abnormal’ and needing to be ‘fixed’. I agree with you whole heartedly….harness & celebrate their strengths by all means but otherwise, let them be.

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