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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.

 

 

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A backpack of one’s own

9 Jun

“That’s mine!” I stated with some resignation mixed with frustration. Because once again, Maura nabbed something I bought for myself and claimed it as hers.

This is an ongoing problem. Maura doesn’t differentiate between the stuff that is hers, and the stuff she wants to be hers – to her, it should all be hers. I buy myself new shoes? She’s trying them on. I get a maxi skirt at Target? She’s wearing it before I’m done unloading the car. I spend three months searching for a good backpack for myself to haul my writing gear in because she took the last backpack I bought? She’s got it stuffed with tutus and on her back without me even realizing she’s taken it from the place I thought I had hidden away.

It’s not just my stuff. She gleans from everyone. Collin was missing his wallet. We started searching. I found Miriam’s wallet in one of Maura’s backpacks before finding Collin’s in another of Maura’s backpacks. Sean was missing keys on a lanyard. Maura had them. Josh didn’t even know when Maura nabbed $120 in cash from his bag. No, that one, I got an email from Maura’s teacher with “So Maura brought in a Dooney & Burke purse with $120 in it. I’ve locked it in a cabinet until you can come retrieve it.”

The purse came from the thrift shop. I’ve yet to use it because every time I turn around, it’s in Maura’s room.

It’s frustrating, and something that we’re still trying to teach her, to make her understand. Our stuff is our stuff, even if she wants it. Other people’s stuff is other people’s stuff, even if she wants it. Just because she wants it doesn’t mean she can claim it as her own.

But she doesn’t get this. Which is why, as Maura and I were leaving my friend’s house, I searched her backpack. And found two things that didn’t belong to Maura. Once home, I found two more things that belonged to my friend in Maura’s backpack. It was disappointing – because Maura choose to steal books when I know my friend has a fantastic jewelry collection. Luckily, this friend also has a fantastic sense of humor and applauded Maura in her choice of books (an art history book and “The Agony and the Ecstasy”).

It’s not easy though when you live with this every day. Every day, she’s swiping a sibling’s possession, sometimes one they need, like their wallet or their cell phone. Maura has two of her own wallets, but she wants her siblings. She wants to take Miriam’s sketchbook, even though I have given Maura her own notebooks. She wants my legal pad full of notes, even though she has her own legal pad. We can provide her with things, but she wants more, she wants the new stuff that comes in. She has little self-control over it at times.

Which is why, despite owning several backpacks of her own, Maura last night swiped my new backpack again. Even after I explained that it was mine, and she understood that explanation enough to be unhappy about it. I didn’t see her swipe my backpack, Josh found it tucked away in her room this morning. He quickly hid it while she was in the bathroom and made her choose one of her own backpacks.

I don’t know if this is a phase or not, but even if it is a phase, I am braced for the fact that it is a long-term phase. Maura goes through phases slowly, so this compulsion to take other people’s stuff? Could last years. Some days, I’m okay with that. Other days, it’s just really tiring.

But for now, I’m just going to stake this one claim on this one backpack I bought for myself.

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Even among the extraordinary, we’re still a bit ordinary

7 Jun

“Medical science is just not interesting in kids like your daughter.” a neurologist once told us.

What I’ve come to learn is something I’ve always sort of known. We’ve never been interesting enough.

Sounds silly, because if you’ve met us, you know, we like to keep things different. But when it comes to disabilities and special needs, we’re kind of bland.

Oh, don’t get my wrong, I’ve always been thankful for the blandness of Maura’s issues. Having bland disabilities means she’s healthy and happy and able to do so much. Ironically, that’s what makes us a bit uninteresting.

Maura’s needs have never been sexy or trendy enough to get interest from the medical community. Maura’s disabilities are too generic for strangers to really care. We have no big diagnosis story to bring out. I can’t tell you what it’s like to have a doctor reveal The Something Maura Has – because we’ve never figured that out.

Reality is, for the first five years or so of Maura’s life, everyone downplayed Maura’s disabilities. Told me I was overreacting, that Maura would be fine. By the time we all realized she wasn’t going to be fine, we were all used to things the way they were, and there was no crisis moment to deal with.

And yet, I can also look back and realize that part of our perceived ordinariness is my own fault. I was raised in a “suck it up kiddo” atmosphere. If you skinned your knee, you grabbed the Bactine and a band-aid and dealt with it. When the choice is either laugh or cry, I choose to laugh. I was trained not to show my darker feelings. I still don’t show my sadness. I will joke at a funeral before I’ll cry at one.

So there I was, being calm through it all, finding the humor in situations, carrying on with life, and embracing each new thing thrown at us. While other people would mourn the introduction of ankle braces, I was giddy about them. Maura needed the support and when we got them, I was happy for the difference they made. When she developed epilepsy, I remained calm, and within a few weeks, noticed so many developmental gains that I all but hugged the bottle of seizure medication for allowing Maura to do more.

And Maura was such a happy little kid, smiling with her whole face, always willing to try something new, working hard to keep up with her siblings.

We were a pair – a smiling happy pair. Obviously we weren’t in crisis, obviously life was okay. There were others who needed more attention than us, others with more problems, more issues, real issues.

When I did crack, I would crack spectacularly. One can’t hold it all in and not eventually crack in a normal way. No, I would crack, spectacularly, garnering interest and concern for a moment. But since my life motto seems to be “Never let them see you cry”, I’d dry the tears, take a breath, and keep moving forward.

Outwardly, we were pretty normal. Yes, eventually, everyone got on the same page that Maura, indeed, was disabled. But getting to that point took years. Not a day, not months, years.

And so, even in our extraordinary life, it all became ordinary.

Because we treated it all as ordinary, people followed our lead and treated it as such. Because we didn’t make a tragedy out of things, no one else did. Because we included Maura in everything, people accepted her presence where ever we went.

And those are all good things.

But, in doing all that, we’ve sort of been seated in the back of the room when it comes to families with special needs. It seems like I’m complaining, and I know, I shouldn’t. But dang if at any point, I could have used a meal train or someone coming to clean my house or just watch my kid.

Instead, I ordered a lot of pizza, had a messy house, and dragged four kids about town. Because stuff still had to be done. Life still moved on, and no one was going to help us out. I wasn’t one to ask for help – I’m still not – so again, some of the blame for not having any help falls straight onto my lap.

I guess I make the extraordinary look ordinary, and Maura has inherited that skill from me.

The fact is, more people find the fact that we lived in Ireland more interesting than Maura’s disabilities. I don’t know if that’s a good thing or not. Or maybe it’s because she doesn’t have a diagnosis that we aren’t as interesting as something like autism, which gets all the press time, or Down Syndrome, which has a lot of warm fuzzy media coverage. No diagnosis that affects one lone girl isn’t as interesting as a syndrome that affects 1 out of 100 kids. No one noticed when Maura’s seizure meds tripled in price, but raise the price of an EpiPen and people lost their damn minds (for good reason.)

Maura’s disabilities affect her, and her family. They don’t really spread to the wider world, not in a way anyone can test for. Not in a way medical science is willing to study and decipher. Not in a way the public can do an awareness walk for, or have a cause to donate to.

And I am grateful for that. Maura has health and happiness and the ability to go where ever she pleases.

But while we go about our ordinary lives here, please, don’t forget, it’s also extraordinary.

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