Awareness

Awareness is a word that’s tossed around every disability community. We fight for awareness, we raise it, we pursue for more. But what about self awareness?

One of the most charged questions I read entirely too often is- “Have you told your child they have X?”

I of course, wondered what the “right” way to do this was. Is there a right way? Is it different for each child? Is there a wrong way?

Our diagnosis’ came late, so maybe it was different for us, but we didn’t have long to ponder this question, if even at all.

A few weeks after her diagnosis of autism, we sat down with Luciana and it went somewhat like this.

“Luciana, do you know what autism is?”

“No.”

“It’s a special way your brain works, and it gave you reading as a super power. Most kids your age aren’t reading like you.”

“Okay.”

“Do you know what cerebral palsy is?”

“No, you say it all the time though.”

“Well, it means when you were born, you were born with a boo boo on your brain, and it’s made it hard for you to do things like walk and run,”

“Does my brain need a bandaid?”

“No, you don’t need a bandaid, and it won’t ever get worse. But we know it might be tougher to do some things than others. But it’s also meant we got to meet some super awesome friends we would have never known. And have gotten to do thing we never would have.”

“Like what?”

“Like dance class, and meeting Miss Addie.”

“Yeah. That’s good.”

Maybe we got lucky, maybe we got out easy, or maybe it distressed her more than we know. It’s hard to tell with a four year old, even a neurotypical one. They don’t have words to describe their feelings, all too often, and have little in the way of past experiences to pull from.

That was almost a year ago.

Recently though, there have been little moments that stand out, that shows me that somewhere in there, she’s learning about the person she is, and how to navigate the world around us.

Today was our second day of swimming lessons. New things are always hard. More times than not, we meltdown half a dozen times before it gets fun. It’s just par for the course. We never push her to do things she doesn’t like, but we don’t let her give up when we know it’s just autism making things hard.

Her meltdown started almost right after walking in the door from school. We mentioned swimming and she started to lose it about how she didn’t want to go. Over and over she said she was scared, she didn’t want to go. I reminded her that she once felt this way about dance class, and school, and how it will pass.

Then she said something I never expected- “I’m just having a shy attack mama. I just need a little time.”

A shy attack. I couldn’t believe how succinctly and poignantly my four year old could sum that up.

So, we gave her time, let her chill out, tried to get her excited and I headed out with her for class.

When we got there, things were alright. We got there early, spent some time getting comfortable, changing, watching others. But, when it came time for her class she went into full meltdown. The kind that I see maybe once a year. It was bad.

Two kind employees came over and tried to do what they could, but sadly she just got more agitated. After a moment, I reminded her of her breathing, got her to sit across from me, and take some deep breaths. Red, blotchy, tear stained face and all.

She looked right at me and said, “I’m having a shy attack.”

I reminded her that it would pass and I never let her do anything that would hurt her.

Then, one of the girls approached her again, and introduced herself. What came from my daughter’s mouth next brought me to absolute tears with pride.

“My name’s Luciana and I have autism. Sometimes it makes me really shy and scared.”

Her conditions are in her records and I’m sure they “know” but lord, I watched the situation take a 180 once those words were spoken. Immediately they switched tracks, made the lesson entirely about her comfort. Took her in the pool room, sat on the bench, let her play with toys, and by the end of it, she was waist deep in the pool.

But the thing I find most powerful is that my daughter had enough self awareness to say, mid meltdown from hell, her best version of “I’m disabled and need extra help please”.

Every parent worries about how the world will treat their child. Every parent of a child who has a disability worries themself sick any number of nights. But once again, my daughter taught me all I needed to know about the subject, and that is, she is strong, she is brave, and she is tenacious. But she also knows how to ask for help, which takes humility and awareness that I didn’t expect from her, but I am so grateful for.