Sticks and stone and all that

Recently I had the opportunity to spend time with an autistic child.

Does that seem like a strange thing to say on a special needs blog?

Perhaps….but I don’t know that I’d ever had the chance before, or at least, I’d never been aware of it.

If I did, I’m sure their symptoms came across to me as a stubborn child, a child with little self control, I probably was that judgmental parent that thought “wow, you can’t control your child, can you?”

You may all feel free to throw things NOW.

I’m embarrassed to say that. Because I know that it’s very true.

And to every parent out there who has suffered through the uncompassionate, non-understanding, misinformed and judgmental stares, glares and gawking: I’M SO SORRY.

Because I have also been on the receiving end of those wondering stares and unkind glares.

And they pissed me OFF!

When Peyton was on cycles of high dose steroids she looked and became someone I didn’t know or understand. She was viciously angry and emotional; she swelled up so badly that it hurt to look at her, she wasn’t the child that I knew or one I knew how to deal with. Often her treatments would leave her so tired and drained that she was inconsolable. She was prone to tantrums of epic proportion.

And she was entitled. She felt like crap, we were poisoning her body, we were forcing her to undergo painful procedures and made her life a hell on earth. She was allowed to be angry. How do you explain to a two year old that this was her new normal?

Yet it never failed to hurt and frustrate me that there was no way to explain that to the stranger muttering under their breath about being forced to witness my daughter’s breakdowns.

I wanted to rage at them.

“How DARE you? My daughter has cancer. You have no idea what she’s going through. You can’t possibly understand what she’s feeling. You have no right to think ANYTHING about my child. She is doing the best she can. So am I.”

Sometimes I did just that. I would snap. It made me feel good to see their eyes widen when they realized how sick she was and to hear them stammer about how sorry they were…for a few minutes…then I would just go back to feeling hurt and frustrated.

Mostly, I just tried to protect her from seeing them. I would hurry to get her out of the situation and into a safe place.

Was there a better way to deal with that situation?

Could I have handled those moments in a way to make them understand without an angry outburst?

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