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Tag Archives: special needs parents

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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the stuff of nightmares

29 Aug

I’m not talking about the presidential election this year. No, I’m talking about the things that, if they don’t keep us awake at night, our subconscious haunts us with in our dreams.

I’ve always been a vivid dreamer, even from childhood. I can remember being five years old and “remembering” that I – along with my dog and cat – could float down the basement stairs. But I couldn’t figure out if it was a real memory or a dream. It felt real. I wanted it to be real. I’d sit at the top of the basement stairs wondering if I could fly. Luckily, I was smart enough not to try it, and nice enough not to test out my flying theories on either pet.

But it felt real.

I’m used to having very strange dreams. It’s part of who I am. But last night, I had a dream that was too close to a real fear.

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The dream went like this…

I went back for a visit to our old town in Michigan. I got there in time to witness their latest special education procedure – which was to line up all the special ed students from each grade or class in a glass-fronted room and decide which ones were too difficult. Each child wore a locket of sorts, and when their group was called, parents were able to open the locket to see if their child passed testing.

If they passed testing, great. They went on for another year.

If they did not pass testing, they were culled. Deemed “too difficult” and euthanized.

My friend’s child was part of the group. She told me this was his second time being chosen for testing. I watched one little boy break free and take off running, an aide chasing him down, catching him, and carrying him back to his group, where the other kids were strapped into seats. Parents mulled about the big center area, waiting for their child’s group to be called, not knowing if their child would be considered too much of a burden on society and therefore must be culled. The parents had no say in the fate of their child. It was left up to the school district. Because budgets and all.

My friend’s child passed the test, and allowed to live another year.

We went and bought donuts to celebrate.

End dream.

I don’t need a dream interpreter to help me figure out the meanings behind my dream. It’s simple. It’s a fear we parental people have for our vulnerable offspring. That they’re deemed unworthy, a burden, useless, disposable. Many times, we as parents feel like we have no say in what happens to our child, especially in a school setting. We feel helpless all the time. Sometimes, we’re just happy to survive another day, month, year.

But I’d like to tell my subconscious that it’s all okay, I’m already aware of that. I don’t need to dream about such things, please and thank you.

 

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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