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Sometimes you have to listen with your eyes

6 Jan
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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.

 

 

Babyface

5 Dec

The other day, Maura and I went out. Originally, the plan was to just hit the drive-thru Starbuck’s (of which there are 327 in a five mile radius of my house, because Seattle.) But then she spotted “the mall” – aka our local shopping center.

I thought “Well, maybe I can herd the girl to Hallmark’s, where she can pick out something Christmasy.” You know, because the girl loves all things Christmas.

What I love is I think I have control of these situations.

We got three whole minutes into the store before she was like “I’m out.”

We walked through the shopping center. She ooo’ed at the decorations (which were quite nice) and I dissuaded her from a trip to Old Navy (I have enough laundry). We wandered past the food court and to what Maura refers to as the book store.

It’s actually a comic book store. But it sells My Little Pony and Powerpuff Girls graphic novels. Hence, it’s a bookstore.

I love that there are graphic novels like these. Maura doesn’t quite read – not in a phonetic way. She’s learned up to 60 sight words, and can recognize things, but traditional reading is not something she’s getting yet. Graphic novels though tell the story through pictures, and she understands that. So yes, I’m happily plopping down a $20 bill so she can read the way she can read, and enjoy books.

Because she is my kid. She enjoys a good book.

We paid for the book of her choice – a classic Powerpuff Girls version – and headed back to the car with bribes of Starbuck’s. Once in the car, Maura was suddenly bent over the book, nose almost to page, studying it intensely.

 

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Suddenly, I had this moment to study her. My girl who, in her leggings and furry/suede boots and pink coat, was looking quite teenagerish before we left the house. But now, once again, I noted the softness to her face.

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It’s part of whatever it is she has, her Sherlock Syndrome. Her face is softer. It’s probably more of the low muscle tone that she has. Or it could be just regular genetics – when I was 13, people thought I was maybe 10, tops. When I was 18, people thought I was 13.  Maybe it’s a combination of low muscle tone and the family blessing of youthful looks. But she’s still such a kid. The baby of the family who has a babyface.

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Maybe it’s also partially my own filtering of things – in so many ways, Maura is still quite “young”. Other 13 year old girls are trying make up and considering dating and wanting to watch “Supernatural” or “The Walking Dead” or whatever parents have been deeming them too young to view but now they think they’re old enough. Maura isn’t like that. She’s still loving the same cartoon she watched four, five years ago, or more. Heaven forbid she finds The Wonder Pets on Amazon. Those little rodents still make her giggle.

Her progress is slow. Sloth-like at times. And other times, she will surprise you with her little newfound teen will and angst. She has discovered Supergirl, despite my trying to lure her to the Wonder Woman side of things. She likes Coldplay despite her aunt trying to influence her to the techno side of things. She has definite taste in clothes – I don’t even fight her anymore on styles, just sizes.

But then, there’s that moment, sitting in the car, her nose pressed into a Powerpuff Girls book and I am reminded yet again how she will live with us forever. Not in a bad way, or a burden-like way. Just in a “This is how things are” way. Because honestly? She and I get along so well, like things like going to bookstores and coffee shops and being sloths on the sofa together while eating pizza – what’s to complain about?

It’s just that sometimes, I look at her face and the softness to it, and am once again reminded that my baby is always going to be my baby in many ways.

 

 

 

In case I’m not clear, our life is a good one

9 Aug

I turned on the Olympics, the sound of the announcers voices luring Maura to the room where I was at.

“Swimming pool!” she stated.

“Yep. They’re swimming.”

Maura plops down on the couch next to me. She spots that I’m knitting. She gets up and goes over to where I keep the acrylic yarns, picks out one, goes over to my container of needles, picks out a set, and sits back down next to me.

“Are you going to knit something too?” I ask.

“Yes!” she states, then looks at me, holding out the yarn and needles. “Help Mom?”

Maura can’t knit, but I cast on several stitches anyway. “Here you go.” I said, handing the needles and yarn back to her. She eyes the row of stitches.

“Off.”

“Okay, then just pull them off.” I said.

Maura does. “I did it!” she announces, delighted. Then she pokes both needles into the ball of yarn, and starts knitting her own way.

This is our life together. Maura eyes everything I do, then tries to see if she can do it too. If I don’t want her getting into something of mine, I have to be more creative in tucking my stuff away, but I also make sure that there’s something similar for her to try. Because she wants to try everything. She’s like her sister and father in that aspect. It’s one of her strengths, and it’s something that I find scary as a parent. But I find it scary in her sister too. My girls keep me on my toes.

At this stage, I’ve come to embrace the fact that my life is nothing like I thought it might be when I was a single young woman in college. I thought I’d eventually move back to my hometown of Chicago. Instead, I’ve lived everywhere else possible. I wasn’t sure I’d ever meet a guy, only to end up one of the first of my friends to get married and have kids. I knew I’d have kids, but it was never on my radar that I’d end up a parent of a child with any sort of disabilities. Speech impediments? Yes. Those are a family trait. Quirkiness? Well, you wouldn’t be one of us without some quirks. Epilepsy? Never on my radar. Cognitive disability? Even less on my radar.

No, life didn’t turn out quite like I thought it would. It turned out way more interesting.

I never thought I’d have a child who would depend on me so much. My oldest, he was the most independent baby ever. At age eight, he announced “I can take care of myself Mom.” His next two siblings were also amazingly independent creatures, hitting milestones early, each one working hard to keep up with the older one. Then Maura came along. At first, I joked that with three older siblings, she had to be different to stand out.

Thirteen years later, she’s still standing out in her own way – like her siblings. And like her siblings, I have the same basic dream for her that I do for them – that she, and her siblings, are happy in life, and self-sufficient, and reach their full potential.

We joke that she’s our “forever girl” as she will need us forever. But I try to make sure people understand, we’re okay with that. It’s not the life we dreamed of, no. But my husband dreams of having a private island. I dream of being an indie rock star (yes, still). Those lives haven’t happened yet either. But I dreamed of having fun colored hair, and I got that. Josh and I dream of getting an RV and road tripping – we’ve just adjusted that dream to fit three in the RV, not two.

Has it always been easy? Nope. But parenting in general isn’t easy. Life isn’t easy. I never expected easy, even if every so often, I crave boring. I said this once to my therapist, who laughed and said “You’d be bored with normal.”

It’s true. I find normal…abnormal. I’ve never really had it.

Yes, life with Maura is more hands-on, requires more from me. I won’t deny it. But I read articles like this one, where the journalist goes out of their way to describe a life such as are full of burdens, where the mother has no care-free times, where life is a bit grey and sad.

That’s not our life.

Yet in reading the article, I see similarities. Yes, Maura will need us forever, at least, that’s the trajectory right now. Her siblings are aware that someday, they will have to take over for us, which is why for now, I try to let them just be normal siblings with her. Right now, we are pretty certain Maura will never drive a car. But she still has a love of cars that is seen throughout my side of the family. She isn’t the most communicative of people, not verbally, but still still can get her point across, make her opinions known. Yes, there are many similarities in our stories, but the attitudes are different.

I don’t look at my daughter Maura and see lost opportunities, a lost life, thwarted potential, a burden. I see this bright, amazing, individual who still likes to hug her mother, who steals my shoes, who is clever in so many ways. She’s also maddening and frustrating and stubborn – because she’s a teenager, and teens are supposed to push our buttons, it’s how they mature. She is a multi-dimensional person, just like the rest of us.

A blogging friend of mine visited us last weekend, and one of the questions he asked was “What have you learned from Maura?”

It took a moment, as my mom brain flicked through mental files of the past twenty years. I’ve learned so much from all my kids. But with Maura, what came to mind was enjoying life. She enjoys life so much. I tend to let doubt and worry hold me back, and she’s there, diving into life, laughing all the way. A lesson most of us could use.

Life isn’t easy – I never expected that. But our life is a good one.

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