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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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Sometimes inclusion isn’t the right choice

16 Jan

This morning, yet another article about the wonders of inclusion for special ed students popped up in my social media.  It was about myths and misunderstandings about inclusion, dispelling those ideas of how inclusion is interruptive to the other students or costs more, or how it shouldn’t be seen as a fad.

All in all, it was a good article.  Yet once again, I realized that the choice we made for Maura is not the popular one.

When we lived in Michigan and Maura was about to start kindergarten, we were told inclusion was the only choice.  There was no other place suitable for her.  The district’s special school was for those with severe physical and mental disabilities.  We were actually told to be thankful Maura didn’t qualify for the special school.  And yet, the local school was unprepared for a student with Maura’s many needs.  Highly unprepared.  And yet, it was our only choice.

This is something those who sing the praises of inclusion don’t always witness first hand – a child with moderate disabilities going to a school that isn’t ready for such a challenge.  But neither party has a choice in it.  Inclusion will happen.

While we were uncertain of how inclusion would work for Maura, everyone told us how inclusion was the best option.  As we didn’t have much of a choice in the matter, we went ahead with it.  And it seemed to work.  Maura had many lovely wonderful staff people working with her, and school went as smooth as it could while behind the scenes, we fought with the administration for silly things like proper medical plans and seizure training for the staff.

Her second year in inclusion, I began seeing trouble with it.

First was the fact that because Maura was a special ed student with many needs to be filled, she actually had a busier schedule than her regular ed peers.  She transitioned more times per day than the average student.  She had more to do, because she had to spend time in regular class settings, but then also go for speech and OT and special ed time.

Maura was exhausted.  She’d come home and spend the evening screeching at us if she didn’t get some sort of rest time.  I couldn’t take her out in public because she was too tired and would have melt downs.  But because she was in an inclusion program, she had all these goals she had to meet.  The only way to cut her work load at school was to cut out things like art and music – classes she actually enjoyed and could participate in.  So we kept up the pace.

The second problem I discovered was that inclusion didn’t make Maura’s regular peers  more understanding of her.  Instead, in first grade, it became a “thing” to laugh when a special ed student cried, and call them babies.  It happened in front of me once, and it happened in front of my older daughter’s friends, who quickly told her what happened.  When I talked to the general ed teacher about it, I was told that this had been an ongoing problem all year.  All year.  So much for acceptance.

The third problem we discovered was that because Maura had such a full schedule, between regular academics, special ed academics, and therapies, she didn’t have time to learn a lot of what she really needed to learn – life skills.  Yes, we would work on these things at home as well, but she spent the majority of her waking hours at school, and was exhausted by the time she got home and not in the mood to learn anything.

By the time we moved to Ireland, I was sort of over the mythical wonders of inclusion.

And yet, we tried to get Maura into a regular school in Dublin as well.  Because special schools had the stigma of being for the “worst cases” in our minds.  Inclusion was the ideal.  Inclusion would help her mature and grow in ways a special school couldn’t.  Inclusion was the thing we should fight for, or so every website and article about it told us.

Luckily, the principal at the local school was blunt with us – they didn’t have the resources for a child like Maura.  But he got us in touch with the right people, and a spot at a special school was offered.

I’m almost embarrassed by my reaction to the special school the first time I visited it.  I looked at the students there, and thought “But Maura is my bright beautiful girl!  She doesn’t belong here!”   And then I went home and cried a little, because part of me knew that Maura was really actually disabled.

See, inclusion can give this idea that your child, with all their struggles and difficulties, is still somewhat normal.  That normal is still within reach.  They could learn how to blend.  They could be part of that normal group of kids.  It’s a false sense of security, even for those of us who are quite aware of our child’s challenges.  I also realized that despite being part of the “special needs community”….I hadn’t actually been around that many people with disabilities.  Most of us haven’t.  And yet there I was, in a sea of varying disabilities, for the first time in my life. It was overwhelming – I was able to admit that.

The second time I visited the school, my husband came along, and I was able to actually see the school for what it was – a place that could be very good for Maura.  The principal explained how while they did cover academics, the primary goals were life skills, preparing these children for adulthood.  Including potty training.

I allowed myself to get hopeful that this would be a good choice for Maura.  And it was.

What we learned at our time at a the special school was that inclusion isn’t for a lot of kids.  It might work for a few years, but as they age, they grow further away from their “regular” peers.  The gap widens.    At the special school, Maura’s peers were actually her peers.  She had a group of kids around her age, who were at her level.  She got to really be part of the community in the school.  Everyone knew everyone, and everyone was understood.

Maura still didn’t learn to write.  But that was okay.  She learned how to use the toilet thanks to that school, and let me tell you, toileting trumps writing ANY day.  She went to school functions, and discos, and outings, and birthday parties for classmates.

I also got to see how children like Maura could grow up. Her school was for ages 7-18.  I was amazed at how much the older kids could do, and that gave me hope that Maura would be able to get to that level someday.  I watched the teens tease their friends like any other set of friends, or comfort one when they got nervous.  In the walls of the school, they were the normal ones.

Maura’s time in the special school dispelled some of the myths of “Inclusion is always better” for me.

One was the idea that inclusion will help a special ed student mature more, because they will have their “normal” peers to model proper behaviors.  Yet as it turned out, Maura was one of the more immature students in her class.  She was also the last to be toilet trained.  I think it was because the special school’s goals were based around preparing these children for life after school, instead of meeting specific IEP goals or academics.

Another was the idea of special therapy times.  Maura had speech several days a week when she was in the inclusion program.  The special school didn’t have a speech therapist in house.  Instead, the entire class program was built around communication skills.  Her speech grew during her time there despite the fact that we didn’t do a single session of speech therapy the entire time there.

Mostly though, there’s this idea that sending your child to a special school means hiding them from society.  This was the furthest from the truth.  The students went on tons of outings, to learn how to use public transport, how to shop, etc.  They were known.  And the school was known as well.  When people asked us what school our kids went to, we’d mention Maura’s and the reaction was immediately “Oh!  That is SUCH a good place!”

And it was.

So when we moved back to the states, we didn’t want to throw Maura back into inclusion.  We had realized that for her, it wasn’t ideal.  We found a school district with a life skills program.  Maura is in a special classroom in a regular school, where she spends most of her day.  She is thriving.  Which at the end of the day, is all we want as parents.

I think, having been through all the school options for a special ed student, that the biggest problems we have in the U.S. when it comes to our students with special needs is that there aren’t options in most cases.  Originally, the problem was that students with some needs were thrown into special classes or schools, and left to rot.  But now, we have the LRE (least restrictive environment), where you’re kind of forced to try inclusion because it’s the only option.  And when it’s the only option, it’s not really an option.  In Ireland, we had the right to inclusion, but it was an option. The idea of the LRE had to be explained to them.  Seriously.  The social worker reading Maura’s forms had to ask what LRE stood for.

I am thankful that we found a place for Maura where we could have the option that was right for her.  No amount of inclusion in the world will make Maura normal.  But at least in her special class, she has the chance to learn the things she needs to learn.

So my advice for those of you who have a child with moderate disabilities, who aren’t sure about inclusion for your child and are offered a life skills program, or special classroom is this – give it a chance.  Take an honest look at the program, and what your child truly needs.  Special schools and classrooms don’t equate to giving up on your child.  It might be actually giving your child the best chance at meeting their own full potential.  It could be the best choice.  It was for us.

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Maura, waiting for the bus, wearing an Irish school jumper. Because she misses wearing school uniforms, lol!

 

 

 

 

 

 

So far, so good

21 Jul

Maura’s been doing well so far with the seizure med weaning.  This is Week Three, and we’re going down 1 ml per week, so I’m guessing we’re hitting the point where if something’s going to happen, we’re going to start seeing it.

Now I have to knock on wood because I feel like I’m jinxing things.

Okay, wood-knocking over…

Like I said, Maura’s doing well.  She’s been chatty still (and chatty enough that friends who hadn’t seen her since January noticed how much more she seemed to be talking), balance is still good, no odd blinky faces.  So we’re carrying on with summer – which so far is a combination of watching too much My Little Pony, wandering about the yard playing with dolls, and thinking she can mix up her own things in the kitchen.

So yeah, we’re also now working on “cleaning up the mess you made emptying 14 packets of drink mix onto the counter” and other such things.

Meanwhile, I am still working with a personal trainer, who is still forcing me to curse at him at some point in the work out.  But I’ve lost some body fat and gained muscle, and am less wary about hefting Maura off the ground and injuring myself, which is the main point of it all.  Now if I could just stop shoving the wrong foods in my face, maybe I can lose more weight.  I’m looking at you ice cream and Coca-Cola.

(Disclaimer for if my personal trainer reads this – Josh brought home the ice cream.  His excuse was “It’s hot out.”  Which it was.  The Coca-Cola was my own fault.)

I am also realizing that it’s now been a year since we’ve moved here.  It’s still not Ireland, but it’s not a bad place to be either.  Especially in the summer.  I’m now regretting getting rid of all my shorts while we were in Ireland, because I could have used them this summer so far. I am also still in love with my big American washer and dryer.  That has not gotten old yet!  I miss the public transport in Dublin, the trains and buses and taxis.  I miss the rainbow that constantly appeared behind my house, and our fabulous neighbors next door.  I miss old buildings, and the landscape, and the people, and the pace of life.  But the other day, as I drove through the sun here, I thought “You know, it’s not so bad here.”

Now if you’ll excuse me, I must go put towels in the big American dryer, where they’ll come out soft and fluffy in forty-five minutes.

Nope, never gets old.

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