Thursday, November 14, 2013

Jungles of the Mostly Unknown

There are a lot of cheerleader-style inspirational memes floating around the interwebz extolling thr virtues of the "autism parent".

Most of these make me smile and have even pushed me to persevere in rough times. But every so often, these happy messages cross a line with me because while the message may seem positive and empowering, sometimes they do so at the expense of empowering our children.

There are two main messages that I take issue with:

1) I am the only "expert" on my child/I am my child's best advocate types


2) I am my non-verbal child's "voice".

These are two ideas that, while altogether pleasant as far as catch phrases go, have deeper implications that concern me.

Why, you ask?

Because we would never make that claim about another human being that wasn't disabled.

I would never say: "I am the expert on my husband." This would imply that I know him better than he knows himself. It would also imply that I am omnisciently aware of his thoughts, opinions and beliefs- many of which he has not necessarily shared with me.

Don't get me wrong. I know my child. Really well. Way better than some doctor off the street who has seen him for an hour total.

But I only "know" what I am shown. No one has access to the inner mind and soul of another human being.

I know that Sammie is resistant to new foods. I know that this is often because of sensory issues like texture. But I also know that I make a lot of assumptions about what he experiences based on what I see.

Only Sammie knows what it is to be Sammie.

The only "expert" on my child is himself.

Likewise with being his "best advocate". I may well be the most well positioned to advocate on his behalf, but I am a poor substitute at best for what he could (and does!) accomplish as a self advocate.

Sammie knows what he needs. He just doesn't currently know how to put these needs into words and phrases that our social institutions understand. So he turns to me to act as his interpreter. And I do the best I can to translate his language into English (or more accurately into 'policy'). But, as is often the case with parents of non-verbal children, a lot of this winds up feeling a lot more like incovering some ancient lost language than it does like actual translation. I speak "Sammie" but it isn't my mother tongue.

Which leads me to my major beef:

I am NOT Sammie's voice.

As mysterious as his language may be, it is there. Sammie speaks, in a variety of ways, and his voice is very clear if you know how to listen.

To claim to be speak for someone else without having rhe ability to ask them a) for their permission and b) if your interpretation is correct strikes me as condescending and arrogant at best.

As "autism parents", we do ourselves no favours by pretending to have all the answers. Moreover, when our children hear these types of statements, what they are hearing is that who they are is only as important as who we think they are. We strip them of their individuality and sense of self determination, two of the most important qualities they have.

I have always thought, and will continue to think of myself as a tour guide, leading others through the wild safari that is Sammie's world. I have a road map, but it is still largely new terrain. It's a foreign land, and is sometimes scary, but it is always an exciting adventure into the "mostly unknown".

But he remains the King of his jungle.  ;)

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