Friday, January 24, 2014

What We Need to See

There was a blog post that made the rounds yesterday. I saw it several times on Facebook, but I didn't read it until this morning. The first few lines of the post showed up whenever the blog was shared, and I almost shrugged it off because I saw the word "apraxic". In my ignorance, I decided the post wouldn't apply to our lives, since apraxia is not a diagnosis either child carries. (Apraxia is a separate disorder from autism, and is what makes a person "non-verbal". You don't need to be autistic to be apraxic, and you don't need to be apraxic to be autistic.)

You can go read the post HERE.

As I began to read, it hit me. Hard. This blog post was so much of K's life. No, K isn't non-verbal, but she also isn't able to fully tell people when she needs something. Really needs something. Things like a break, quiet, or people to just stop throwing words at her when she isn't able to process it all.

It reminded me of a dance class last fall. K was struggling. Just having a really hard time. Because K is a verbal kid, and because there are a lot of things she can do, even I sometimes expect too much. In the middle of class, K stopped wanting to participate, started to cry, and tried to leave the studio. At the same time, her classmates were cheering her on, chanting her name, and trying to get her to join with them.

I stood there feeling aggravated. Why wouldn't she just go to them? They were cheering for her! They wanted her to join their circle! This was all positive, right? So why was she standing there, on the verge of a meltdown?

I just didn't get it. I was looking at it through my own eyes. My own, non-autistic eyes. A group of people cheering someone on? How could that be a bad thing?! I was angry. I just couldn't understand. I allowed my own feelings of embarrassment get the best of me.

It wasn't about me, it was about K. How she was feeling. How everything sounded and felt to her. How she needed someone to just get, in that moment, that she wasn't being a bad kid.

She was already overwhelmed, standing inside an echoey dance studio, bombarded by words. The loud demands of others. To K, their voices must have equaled a thunderous roar. One that upped her anxiety, and made the tears come faster.

Maybe their cheers made her feel worse about needing a break. Maybe she felt embarrassed that all eyes were on her, when she just needed some time alone. Maybe the whole situation, as positive as it looked from the outside, made her feel even more different, in a place where her differences shouldn't have mattered.

What she needed was to be told it was OK to get away for a while. For me to take her somewhere quiet, and not make it seem like a bad thing.

I didn't look at the situation through K's eyes. I didn't respect my own child. Yes, she's verbal, but in those moments, words fail. I didn't realize until reading that blog post just how much I had failed that day, as well.

I thought I couldn't learn from someone whose experience seemed so different than ours, but I was wrong. Our kids are more alike than we know, and trying so hard to separate "levels" of autism means we are probably missing out on a whole lot of information our kids need us to hear.

Lesson learned.

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