Archive | special needs RSS feed for this section

Why I fight, why I protest, why I keep opening my big mouth

21 Jan

 

For this crazy lot.

I fight for them.

I protest so they don’t have to.

I open my big mouth when they can’t.

It’s not just about Maura and her disabilities – even if there’s more to fight for her than the other three kids. But when I fight to ensure Maura had a better life, I’m also fighting so that her siblings have a better life.

Someday, they will be her caregivers. I know that. They know that. They’ve known that for years.

Holmes family 11827

photo by Elisha Clarke

Collin, my oldest, has always watched over his littlest sister. He was aware of her lack of progress before most adults were. He keeps her safe. He looks out for her. He always has.

So I make sure that someday, when care giving is left to him, it’s as easy as possible. Which means I fight to ensure that Maura has the best education she can get, learns all the life skills she can. The more independence Maura gains, the more independence Collin will have someday.

I fight to give them both that.

IMG_8538

Sean and Maura 2011

Sean has always been the brother to play with Maura. He he’s been hefting her up since she was tiny. He still helps maneuver her when she can’t. He spent so much time following her on playgrounds, up climbing structures, letting her have freedom I couldn’t give her because of my anxiety. He was always willing to spot her on things, and let her expand her boundaries. He’s always ready to catch her when she falls.

I fight for Maura’s independence so Sean doesn’t always have to spot for her. Even though he always will.

10868282_10152554989342513_4779733222724461719_n

Mim and Maura after Mass – 2015

Miriam has always been the spectacular big sister. Even when I was worrying that Maura’s disabilities would keep them from having a close relationship, Miriam excelled in her role as big sister. She makes sure Maura gets to have all the fun she wants – and is by her side doing so. If Maura wants a tea party, Miriam will bake the cake for it. If Maura insists Miriam should put on a pink dress, Miriam puts on the pink dress. She is the best friend Maura has.

Someday, Miriam might be Maura’s primary caregiver. For now, I fight to ensure that Miriam gets to be just the sister.

IMG_5830

Maura and Mom – 2014

I open my big mouth for Maura, because she can’t always advocate for herself. She doesn’t have the words, so I speak as her representative. I fight for her rights. I fight for her future. So that she can have what she needs, what she deserves.

Maura deserves as much as her older three siblings. She deserves to have a fantastic life where she reaches her full potential, and is happy.

All my children deserve that.

So I fight for Maura. I fight so we all can win.

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.

 

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.

 

 

%d bloggers like this: