When things go south

16 Jan

Yesterday, Maura had a meltdown in public.

This is not new to us. When you have all the feelings and not always a way to communicate them, meltdowns happen. Usually, if we can quickly remove her from the situation, she can calm down almost instantly.

The trick, yesterday, was that removing her from the situation required get her out of the public building with great acoustics, which also meant down two flights of stairs since the escalator was broken, and over a sky bridge.

It was on the sky bridge that things got…interesting…

I was hoping fresh air would help her calm. She loves the sky bridge as it gives a great view of everything. Instead, she stopped to sob some more. At this point, Josh put his arm around her waist and got her moving forward again, even while she kept wailing.

And then two security guards stopped up.

“We heard a woman was screaming on the sky bridge…” they said.

We went into a round of “our daughter has special needs, she’s having a meltdown, we’re just trying to get her to the car, I swear she’s not being kidnapped…”

The security guards instantly backed down, apologized a little as we told them we completely understood, and offered to assist us in any way. Two minutes later, we were in our car and Maura was calmer. Two minutes out of the parking garage and Maura was back to her usual self.

But it was a moment that really struck me – they said they heard a woman. They thought my daughter was an adult. Granted, she’s five foot three, making her slightly taller than me. But still. She was seen as a woman at first.

Folks, we’ve entered new territory.

Society is more accepting of children with disabilities, especially if they’re nicely dressed, smiling, and inspirational in any way.

Society is less accepting of adults with disabilities.

My daughter is morphing into an adult with a disability.

She doesn’t look disabled. Even watching her come back from refilling a drink the other night at Five Guys, I looked at her and realized that at most, she just appears a bit awkward – but not disabled.

When I posted what happened on Facebook, my friends tried to help. “Can you get her an ID, or an ID bracelet?” I could – but that doesn’t really help make her visibly disabled to the general public.

I could probably shout out “Don’t mind us! She has cognitive disabilities and sometimes she doesn’t transition well!” but, you know, I’m kinda busy at the time to be shouting.

Maybe I could get some bat signal, or a flare gun that shoots off so people know that this is not ordinary but not scary.

There’s not a good answer for this. The only one I can think of is talking about it so that more people become aware, so that more people understand what’s going on if my daughter is having a hard time in public.

Because becoming hermits isn’t an option.

 

I’m just gonna leave this here

9 Jan

 

(In case you don’t know why this is so freaking hilariously spot-on – Ms. Coulter has a fetish for using the R-word unapologetically.)

Sometimes you have to listen with your eyes

6 Jan
img_1842

picture – adorable lil spider dude on a leaf telling you “sometimes you have to listen with your eyes”. 

 

Maura is somewhat verbal – but not always in English, and not always coherent. So my job is to figure out what she’s trying to convey to me. Yes, I say “my job” because she is trying to communicate, and doing it the best she can – which is her job. Understanding her communication – that’s my job.

Luckily, I have years of practice with such stuff. Even better? Maura is a very expressive girl. When she smiles, her whole face lights up and the smile goes up straight into her eyes. When she’s tired, you don’t have to ask, her weariness is written across her face. And when she’s plotting against me, I know as well, there’s an extra sparkle in that girl’s side eye.

Just now, she was pulling stuff out of an empty tissue box. She loves boxes, loves putting things in them and taking them out. It’s part of our norm, so I didn’t think much of it, but instead, asked her what was in the box.

Mind you – the following bit was all non-verbal on her part.

She got a searching look on her face as she dug around the box, then did her wide-eyed, wide open mouthed surprise look as she showed me what she’d found in the tissue box.

A little round light blue bead.

She presented it to me to ponder.

“Is that an egg?” I asked – because Maura is into eggs, and it was robin’s egg blue. “Or is it a bead?”

She tilted her head a little, her eyes narrowing and her lips pursing, pondering this question herself. I waited for an answer, which came in the form of her aiming the little blue bead-like thing towards her mouth.

“I don’t think that’s food, boo.” I said with a laugh.

She paused, considered my words, then grinned, lowing the bead as if to say “You’re probably right.”, then put it back in the box.

And we both laughed about it.

Some days, Maura is “on” verbally – using words and sentences and making her point. Other days, she’s quieter, not saying much at all. Tonight? Well, it’s Friday, she’s been busy at school all week, and is probably in need of recharging. Being verbal might be too much for her right now.

But she’s still communicating with me. And I am still listening.

 

 

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