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To the high schoolers about to meet my daughter

29 Aug

Hello Classes of 2018, 2019, 2020, and 2021! You all have two things in common!

  1. You’ll all be in the same high school.
  2. You will be going to school with my daughter Maura.

Yeah, consider yourself #blessed right now.

So you’re going to be in school with my daughter. Congratulations! Here’s what you’ll need to know…

Maura is going to be one of those newbie freshman scurrying about the halls. Except Maura doesn’t scurry, she booyahs her way into every room.

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Yes, you’ll notice her. You’ll notice this girl with fabulous hair and a sense of confidence that you’ll probably envy.

It’s okay, you can learn from her.

You can learn that it’s okay to be yourself, to be confident in who you are, to wear those clothes that make you feel fabulous, and to laugh loudly because it feels good to laugh.

You will watch her with some envy because of the way she enjoys life – but you know, you can too. My daughter doesn’t give a crap about what other people think. You can learn that from her as well.

You may be hesitant to do something weird or silly, because, you know, High Schooler. But then you see my daughter being silly because silly is fun, and fun is awesome and maybe you’ll stop being so self-conscious and do that goofy thing that makes you laugh.

You will definitely see her dance. Because dancing is fun. They say you should dance like no one is watching. No, be like Maura – dance because you want to and who cares if anyone is watching? Maybe they’ll join in. And in doing so, they’ll be another joining in, and then you’re six degrees from a flash mob and flash mobs are awesome.

And now, you’re watching my daughter with a bit of awe. That’s okay, I do the same. I’m in awe of her spirit, her ability to live life to the fullest. To love freely, unabashedly. To enjoy being yourself. It’s something to aspire to.

And while you’re watching Maura, you may notice her sister as well. Because she’ll be the second person in that potential flash mob. You’ll see her sister treat her…well…like a sister. She’ll treat her normally.

Because that’s all you have to do with Maura. Treat her like you would any classmate.

Oh, did I mention that Maura has cognitive disabilities? Yeah, there are those as well, but they’re not what make her stand out. Heck, her moaning and groaning over doing school work could make her blend in with the rest of you lot.

But here’s the thing – yes, she’s fabulous and confident and all – but she is also okay with you being fabulous and confident and all too.

So good luck, incoming freshman and all the upperclassmen who have to deal with them. May this year be full of awesome.

And to the high school teachers and admins – I’m still rooting that you get a margarita machine in the staff room. Because dang.

 

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To the person who doesn’t want to give up their subway seat for my kid…

9 Jul

This article popped up in my feed. I read it, and I’ll admit, part of me did agree with you. But then you sort of glossed over that disabilities may not be seen by the naked eye. And that’s where you lost me. And since I was willing to hear your side – and again, even agree with some points – I think you now need to hear my side of things.

When we lived in Dublin, we were blocks from a Luas station – the Luas being the light rail train that ran from the more suburban areas of Dublin to City Centre. As someone who grew up with commuter trains in Chicago, I was enamored of the Luas. Trains get people places, and for less than what parking would cost.

My daughter Maura loved the Luas. She had her own Luas card for commuting. Because for the first few weeks of school, we had to commute by train. The commute meant walking the five-ish blocks to the train station, and down two flights of stairs to the platform (or use the elevator), take the train to our stop, then walk another several blocks to her school. Since we were traveling during the morning commute time, the train was usually full when it hit our stop, and packed by the time we were ready to get off. I soon figured out a spot that worked for us – the last car, by the back door, against the wall where Maura could lean against it for support, and a quick and easy exit. I would stand in front of her, shielding her a bit, but also shielding herself from other passengers so if she lost her balance, she lost it onto me and not a stranger.

 

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Maura waiting for the train in Ireland – 2011

 

Usually mornings went smoothly. It was afternoons that got difficult. She’d be tired from the school day, and the walk to the train could mean a series of bribes and cajoling. There was a little convenience store right next to the train where I’d let her buy a bag of popcorn if that’s what got us to the train. I would hope that we’d get a seat so she could sit and rest before having to walk home. If it was full, I’d be the mom you described in your piece, telling her she could sit soon, and nabbing the first spot available for her.

The train in Dublin wasn’t nearly as cut throat as other systems I’ve ridden on (which, on top of Chicago, I can add Paris, Barcelona, London, and yes, even the NYC subway.) The Dublin train riders were more likely to give seats to kids. Once, a school group came on, and little girls in plaid skirts were taking seats – and I watched not one, but two young men get up from their seats and move in order to give the school girls their seats, so that the teacher was able to have them all in one place. They didn’t ask how able-bodied the girls were.

Listen, I have taught my own children to give up seats for those who need it, whether it be at church or on a train. They have never balked or complained, and now, as almost grown/grown people, they are still giving up their hard-earned seats for those who may need it.

But I’ve also been the mom who needed the seat for my kid.

My very normal looking kid.

My kid who may look like she’s enjoying standing there on her own two feet.

My kid who had epilepsy that affected her balance. Who has motor skill issues that affect her balance. My kid with low muscle tone, who tires out more easily. My kid who can’t always correct or catch herself when she starts to fall, or who can’t always move fast enough to block herself when she does fall. The kid who couldn’t understand why she couldn’t sit when tired. The kid who’d be safer seated on a bouncing cornering train. The kid who, in your eyes, at first glance looks totally normal and healthy. Because she is healthy for the most part.

The one you basically dismissed with your bland statement that disability isn’t always visible to the naked eye. Because while you’re willing to write – possibly in a CYA sort of way – that not all disabilities are visible to the naked eye, you’re also ready to write off that me promising my kid a seat equates to coddling. Because to the naked eye, my daughter looks like an average kid.

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Maura – 2017

 

Now more than ever, I need that seat for Maura. Yes, she’s older, taller, and better at balancing herself. But when she stumbles and falls or needs support, she leans on me. Me, her now-shorter-than-her mom. Me, the gal with the twitchy back and inflamed shoulder. Me, who got that twitchy back and inflamed shoulder from years of helping Maura physically. Me, who would and has happily not sit if it means my daughter gets a seat.

Maura getting a seat means she gets a rest break – one that may not seem needed but will pay off later. Maura getting a seat means that I don’t have to use my own body to help hers cope and adjust with swaying train cars, stops and starts. Maura getting a seat means she won’t bump into other passengers while trying to catch her balance.

Listen, our world is more difficult to navigate because of my daughter’s disabilities. That her disabilities are invisible doesn’t make things better. Because we get judged – whether it’s for using the disabled toilet, or using the disabled seating on the train, or being judged as a coddling parent by someone’s cursory glance.

There are a lot of disabilities that aren’t visible. I personally know several kids who could use a seat on a train even though they look able and happy because their disability isn’t apparent to the naked eye. Kids with autism, kids with mild cerebral palsy, kids who have had strokes as toddlers – and my own kid, who doesn’t have a diagnosis but definitely is disabled.

And you know what? As the mom of three other children, who are all able-bodied, sometimes even those kids need to sit. They’ve had long days, or have a long trek ahead of them once they get off the train, or are just clumsy and would be safer on a seat. Moms who have been dragging their kid about town and are tired of playing goalie and just want to put him in a seat for five minutes so she can take a breather because she knows passengers will give her the stink eye if her kid bumps into them.

Listen, we’ve all been a bit of an asshole when it comes to holding onto our own hard-earned seats on trains or busses. But I’m pretty certain that kids having seats on trains isn’t the downfall of civilization as we know it. And as the mom who used to ride the Luas constantly with her own kid who did need the seat, I am grateful for every kind person who offered a seat to my daughter.

 

 

Dear Target

6 Jul

You know I love you. You and me, we’re bffs4evah.

However…

Nine days ago was our last day of school. NINE DAYS. We’re just now getting used to our summer vacation routine. Needless to say, I was highly unprepared to see ALL the “Back to School!” stuff out at our local Target.

I should’ve seen it coming. Land’s End has already sent me their “Back to School” catalog (which arrived a week before school was over). You started clearance-ing out summer stuff a couple weeks ago, which led to my hasty buying of lawn chairs and outdoor lighting. You’ve been slowing putting up those “dorm life” end caps.

Still, I didn’t expect to see the fully stocked school supply section today.

And I had Maura with me.

Thus began the Great Backpack Struggle 2017. We go through this every year. Maura sees that wall of backpacks and becomes a bit rabid. Backpacks are her thing. HER THING. She just got a new one two weeks ago, after I smuggled out several old busted ones from her room, and hanging up the four she had left. She’s been very happy with her new backpack.

Until two hours ago, when she desperately needed a NEW backpack.

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I said no.

She tried to put it in the cart.

I said no, put it back.

She threw the backpack at me.

I told her we were leaving.

There was a meltdown. We spread disability awareness in that particular store. Loudly. Along several aisles, as she was all “Fine! I’m leaving!” and stormed down a few aisles.

But she calmed down. It was very impressive how she pulled it back together. So we got the cart, left by the backpacks, and despite a few longing glances towards the backpacks, we got the heck out of that section.

Oh sure, we ended up with a Poppy from Trolls doll, which made the world better, and is cool because Maura didn’t have a Poppy doll and is obsessed with Trolls, but that’s not the point.

The point is – why is back to school stuff out NINE DAYS after school let out? Seriously? Why? We’re all broke here from end of school stuff and trying to buy all the summer stuff just as summer was finally starting here in the PNW. Now we have to nab up all the pencils and notebooks because they’ll be all gone come August 15th, even though school doesn’t even begin until after Labor Day in September, and some of us won’t even know what we need until the, but by then it’ll be too late to buy school supplies and the Christmas lights will be out…

I know that some of this is being location-specific. I know that some areas of the United States have been out of school since the latter part of May. And that you’re running a large corporation that has to suit the needs of all states. Whether or not that timeline suits everyone involved.

All I know is that for the next six weeks, I can’t take Maura to her favorite store because I don’t need to deal with a meltdown over backpacks every. single. time.

It’s not me, it’s you.

I’ll catch you on the flipside!

 

 

 

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