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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.

 

 

 

Where do Americans like my daughter fit into politics?

15 Oct

Today, I read more about the election, and it left me feeling sad. Sad because people are so angry. Sad because one side has already decided it’s rigged. Sad because way too many women have come out to discuss when they were assaulted. Sad because some of them are still not believed. Sad because I’m told that all guys speak like this and if I don’t think my husband or sons talk like this, I’m delusional.

But mostly, today, I’m sad because this all has become such a shitstorm. And in such a shitstorm, other less pressing issues become invisible. Maybe I’m totally and completely biased, but I’m still waiting to hear how people like my daughter fit into each candidate’s American vision.

Because right now, she doesn’t seem to.

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^I’m with Herself ^

Now, I must give Hillary Clinton credit – in the issues portion of her website, she mentions disabilities. She talks about people who are caregivers…but mostly in a “Caring for an elderly parent” way (though to be fair, she mentions parents caring for disabled children.) She mentions employment opportunities for people with disabilities. She has a whole other section for families dealing with autism.

This is way more than what Donald Trump‘s site has. Which is nothing. The closest the Trump campaign has gotten to the issue of disabilities is when he mocked Serge Kovaleski, a reporter with arthrogryposis, and the current allegations of him calling Marlee Matlin “retarded” behind the scenes on “The Apprentice” (Marlee has an amazing response. Trump has yet to respond as I write this. And regular readers know how I feel about this sort of thing.

Meanwhile, I’ve got a girl who’s rapidly growing up – and I don’t just mean getting taller. No, she’s hit the age where we have to start thinking about what we do when she turns 18, what happens when she ages out of the school program at 21. What happens to our middle class, moderately intellectually daughter when she’s an adult? What happens to us as her parents? What happens to me, as her main caregiver?

As my older three kids are also growing up, getting jobs, having separate lives, enrolling in every high school activity possible – you know, being normal youths – I’ve become more aware of that last bit. Maybe selfishly so. I am my daughter’s mother, but I am also her main caregiver. We currently don’t receive respite care, we only recently had my daughter officially labeled as “disabled” by the state, and because of income, currently don’t qualify for anything (there is a mythical waiver I need to look into, that would waive income in lieu of level of disability or something like that – or as I call it “One more hoop to jump through”…even then, we could only receive like 3 hours a month of respite care.) I’m certain things will change when she turns 18 and is considered an adult with a lifelong disability.

But even then, I may still be wondering – when will politics be concerned with people like my daughter? She may not ever be able to work. She probably won’t ever be able to live on her own. I’m not even certain a group setting would work for her. Not that there’s many options out there for us.

I have read Hillary Clinton’s autism initiative and it sounds pretty good. The only problem is, my daughter isn’t autistic, and therefore, it won’t really help her. I know this from our own experience. It’s great that she wants to make sure that autism services are covered by insurances – but insurances will deny those same services – speech, occupational, physical therapies – to children like my daughter. It’s great that she wants to do more screening in early childhood years for autism, but we had that done – and when told “Good news, she’s not autistic!” and I responded with “So what does she have?”, I was told “Sorry, we have no clue…” and was left out in the cold. When I called up a place that had a therapy that sounded like it could work for my daughter, I was told it was only for children with autism diagnoses, sorry, we can’t help your daughter.

I know, I know – autism is a big deal. I’m not denying that. I’m just allowing myself to be selfish, and want the same kind of opportunities for my daughter, and all the other kids like her out there who are falling through the cracks.

And I know, I should be happy that at least one candidate is even mentioning any sort of disability thing on their website. But we’re talking crumbs here, because the idea that disabilities will even be mentioned in the final debate is just that – an idea, most likely mythical. I doubt it will happen, and that’s sad.

I get it – other topics do take precedent. Talking openly about what is sexual assault is very important to me as well, as my daughter also has an 83% chance of being assaulted.

Which just makes me sad all over again.

 

 

 

What to do if a child with autism goes missing in your area

3 Oct

Last night, a missing child with autism post came through my feed. My heart dropped, because the last three that went through my feed ended with the child being found dead in a body of water, having wandered off and drowned. Luckily, in this latest case, the child was found – cold and wet, but alive.

Children with autism are notorious for wandering towards water. Water is such a sensory thing, and heck, for me, being next to a body of water is just calming, so I can see why these children get there, get too close.

So what can YOU do if a child with autism goes missing in your town?

Own a pool? Check it. Doesn’t matter if it’s January and snowing out. Go check your pool if you have one. So what if you have a six foot fence around it – kids can scale a fence easily.

Live on a pond? Get neighbors together, check the pond, then monitor it until the child is found.

Live on a creek of any sort? Check the creek. Walk up and down the banks a little. Call neighbors, ask them to do the same.

Live behind a park? Check the swings.

Actually spot said child who’s been missing? For God’s sake, don’t run up arms wide going “Oh! I found you Johnny! Let me give you a big hug!” You’re liable to get head butted. Instead, call the cops, then stay near the child. Don’t scare him off. Instead, maybe pull out your smartphone and announce “I’m going to watch a video. Who wants to watch a video with me?” Ten to one, the kid will be breathing down your neck in 35 seconds. My kid would, and she doesn’t have autism. If the child is lured by the video watching, sit on the ground, be less intimidating, wait for police. If the child walks off, just walk a few feet behind him, let the police know what direction you’re going in.

And as a parent of three “normal” kids and one easy one, lol, these tips are good for when ANY child wanders off. Check water. Keep eyes open. Don’t scare them off.

This has been a Public Service Announcement from me😀

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Note – this is NOT about why a child with autism may wander, okay? It’s not about bad parenting. If it is, well, I’m a bad parent. 

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