Monday, December 25, 2017

In case you're feeling weepy on Christmas

Merry Christmas internet.

I'll try to be short winded tonight. Because it's Christmas and you should probably be watching the Eagles while doing a 750-piece Disney-themed jigsaw puzzle (as Brad is) or snuggling your beagle or slumping on the couch with some eggnog (or something equally boozy) after having tucked in your kids who've spent the past week all hopped up on Santa and marauding around the house like a band of spider monkeys. 

Low on the priority list should be scrolling Facebook looking for ways your Christmas was inferior or superior to anybody else's. Or was that just me? Sigh. Truthfully, I was only kinda gazing enviously over other people's yule-fences. Mostly, I love to see so many posts filled with so smiling faces and twinkling lights and stacks of cookies and ridiculous pajamas. (Seriously, when did the family pajama game get so awesome? Growing up, had my family tried to do matching pajamas for the obligatory in front-of-the-tree photo, we would've had three options (based on the three main pajama-ing methods in our household): We would've been A. Covered head-to-toe in plaid, flannel nightgowns B. Slouching in oversized souvenir T-shirt from most recent family vacation, no pants or C. Proudly sporting a white undershirt tucked into our tighty-whites. Reading this, I'm again thankful that Facebook didn't exist when I was a kid). 

Where were we? Oh right, I was going to be short winded. 

I felt like showing up here tonight just in case anyone was struggling with the holidays ("What?!" you ask, totally befuddled. "Feeling a little bit gloomy and wistful and overwhelmed by the state of the world, on Christmas?! Of all days. Impossible!"). I know, I know. As unlikely as it might be, I have to go ahead and assume there might be someone else out there who, like me, texted her sister, "I just want to hide in a closet and cry for awhile."

Because, pretty much, that's where I was. I won't go into all the gory details. Suffice to say hormones, exhaustion and general anxiety about the future all played varying roles. 

I'm sure none of you can relate.

I found myself really missing being little. Missing my mom and dad and Christmas morning in the great room my dad built with the woodstove making everything so cozy and dad's sorta stuffy but deeply moving Handel's Messiah album playing in the background. Even more, missing Christmas dinner– getting out grandma's china and the silver and mom fussing over this and that in the kitchen her apron and her cheeks covered in flour. Sitting down to dinner with my siblings where we'd inevitably throw rolls at each other or get in tense conversations about politics or social issues that would result in one or more of us leaving the table in a huff. Doing dishes with my sisters afterward. I miss all that. Now I'm the mom and I have these kids and we're left to create our own traditions and I can't help but feel sometimes that it's just not as good. 

Like I said, it's probably just me, right? 

Laura reminded me to take some deep breaths.

"Enjoy Christmas on a micro level... the needles on the tree, the shine of a glass ornament, the smell of dinner, the warmth of a home, the smiles on the kids' faces, the flush of their cheeks ... So... go cry ... cry... and cry and then dust off and know that you are loved, no matter what you do or don't or how you feel or look or anything. Love you sister."

I never did go hide in that closet. I made a chocolate peanut butter pie with the girls, took a nap with the dog and played Go Fish with Jovie instead. I wrapped the last gifts, made some butternut squash soup.

That's not to say I didn't cry. Because that happened in short bursts throughout the day.

Like at the start of the the 5 o'clock Christmas Eve service at the local Methodist church. We're not churchy people, but someone told us last year that the children's service features a puppet show and we thought that was an ideal way to introduce our heathen children to the idea of church without going full Catholic (as Brad and I were raised). 

There's no place like a church on Christmas. The candles and the seats full. Girls in their floofy shiny dresses and boys in reindeer sweaters, their hair slicked back. The sense of peace. The music. The music is what gets me.

No sooner had we started singing "Oh Come All Ye Faithful" at the start of the service and my nose is dripping and I'm chocking on the words. 

I'd just listened to an interview Krista Tippett did with writer Adam Gopnik. There was this portion where Tippett quoted Gopnik that I loved:

"I keep coming back to that piece, 'Bigger Than Phil,' where you talk about how the hardest rationalists, people who would define themselves that way, still 'they polish menorahs or decorate Christmas trees, meditate on the great beyond, say a silent prayer, light candles.' At the end, you talk about them going to services and leaving early — but, you said, 'You will know them by their faces; they are the weepy ones in the rear.' "

I'm not a rationalist or anything (at least I don't think I am... that probably means I'm not one. Most days I feel like an irrationalist.) But no matter when I go to church, I'm the weepy one in the rear. And on Christmas I'm especially weepy. Partly, because all of my memories of Christmas as a child involved going to Mass. Wearing itchy tights. Parking waaaay in the back to avoid all the traffic. Holding hands with my sister for the Lord's prayer. Hearing my dad sing (maybe only because my Grandma was there and she would always comment on what a lovely voice he had). 

But it's not just reminiscing that makes me weepy. It's also because there's so much community and goodness and love at the heart of a church. On Christmas, there's so much promise, you know? For our better selves. So much hope. And I feel so desperate for that. That we, as a species, can be better than we are.

And for a moment it seems that we can be. Beyond being a celebration of the birth of Jesus, I look to the Christmas story as a reminder of who we can be. Who we should aspire to be. I'm going to sound very un-Christian here when I say this, but I prefer to think of "The Man" Jesus, rather than "The Messiah." Because when I think of him in that light, I can see myself in him. All earth-bound and flawed. That's just how I prefer my role models. Someone who simply shows what is possible. 

I didn't cry my way through the entire service. There were too many moments of levity. The silly-sweetness of the Christmas story being performed by children with puppets whose mouths were never quite moving with their words. The earnestness of the talking donkey. The little boy in front of me who could not handle sitting even remotely still for 45 minutes (I wanted to take him aside and be like, "Dude, you think a holiday puppet show is boring? Try sitting through an hour-plus long Mass with a long-winded priest whose endless sermon is just a dressed-up reminder of all the reasons you're a weak sinner destined for hell, followed by various Catholic calisthenics, creeds, prayers and liturgies that are intermittently sung in Latin and recited by the entire congregation in much the same way the Google map lady reads off the directions to the nearest Target." Seriously though, that kid didn't know how good he had it. I would've killed for a Christmas Eve puppet show when I was little- thus sealing my entry into the seventh circle.) 

At one point the kid, bored with whatever was happening up on the alter at the time, pulled out the Bible and decided to take his Christian education into his own hands. 

"And God blessed them, and God said unto them, Be fruitful, and multiply, and replenish the earth," he started. Then turned to his dad, not really whispering. "Wait? What does be fruitful mean? To be full of fruit?"

I giggled. He turned back to look at me. "Close enough," I told him. 

I smiled, too, watching Jovie stand on her tippy toes to hold up her little battery-operated candle during "Silent Night." And Lily singing "Joy to the World" with such earnestness it made my heart burst. 

"Thank you, Laura," I thought to myself. For reminding me to be on the lookout. For reminding me to see what was important.

The girls continued to offer so many reminders. Jovie screaming when she received a shirt featuring the cast of "Trolls," then proceeding to wear it to bed and then all day today and probably every day for the rest of her life or until she grows out of her Poppy obsession, whichever should happen first.

Lily screaming when she received an Eagles t-shirt– saying she couldn't wait to wear it in front of Toby, the very definition of a frenemy who never misses the opportunity to remind Lily that he's a Redskins fan. Like, she's in first grade and she's already getting into bombastic sports rivalries. It is endlessly amusing to me. A couple weeks ago, Lily was home sick with a cold. Toby wrote this note:

Or, to translate: "Dear Lily, you were [absent yesterday]. But [Carson Wentz] got [injured]. Love, Toby"

To reiterate: Statement of fact about Lily's absence. Presumed smack-talking about injured Eagles quarterback written, on purpose I believe, in burgundy. 

Jovie using her new headphones to listen to the "Trolls Holiday" soundtrack and singing "Celebrate" at the top of her lungs because she doesn't think anybody can hear her. It's on Facebook. You can watch if we're friends. It's amazing and everything I love about her.

Snacks unwrapping presents. He gets so, so excited about getting a present. So excited. It's the best ever.

And the cat getting into everything. Bounding among the boxes under the tree. Diving into the trash bag filled with wrapping paper. Hiding out in the "stall" Lily's toy horse came in.

So many micro-level moments whittling away at my macro-level worries.

Brad and Jovie woke up this morning with pink eye. We were supposed to have my sister's family over for dinner– something I'd been really looking forward to, hoping to re-create some of the noise and hub-bub we experienced as kids. But the doctor told Brad over the phone that it was highly contagious and that we should probably cancel our plans. So we did. Begrudgingly.

It was a quiet day. The girls played with all of their toys over and over again. Brad and I worked on the aforementioned puzzle. I took another nap then got to work on dinner. Roast beef, mashed potatoes and green beans. Reminiscent of what we would've eaten at mom and dad's. 

Despite the fact that we wouldn't have any guests, Brad set the table in the dining room– we used the china and the drinking glasses we received as wedding presents (my favorite dishes and glasses because they feature dragonflies) and a festive red table cloth. It was just the four of us– a small fraction of the number of people who would gather at my parent's. The girls liked the pomp and circumstance though. Especially the opportunity to say "cheers" and clink glasses. They didn't care too much for the roast beef (as I probably didn't when I was 5). 

I took a few bites of my food and looked up at Brad, kinda weepy again. "What's wrong?" He asked. 

"I always want my cooking to taste like what my mom made growing up. And I always feel like it falls short. But this tastes like home. It tastes like she made it."

So I guess Mom was here in a way- even though she and Dad live out in Colorado. In spirit ... or in roast beef and mashed potatoes, rather. And the small versions of me were here, too. Dancing around to "Trolls" music and brushing their new horse's hair. And Brad even wore plaid most of the day, which is Dad's signature print, though you'll be relieved to know the comparisons end there because ... WTF? That was going to a weird place.

My point being, it can be tough not to feel sad on Christmas. It just weighs so much. But sometimes you can turn that sad into a happy-sad and even a happy-happy. Sometimes it goes back to being just sad-sad. And all of those things, I think are OK. So wherever you fell on the spectrum of the day, you're not alone. 

Your mom might still be lurking in your kitchen if you just dust your self off and keep your eyes open.

Merry Christmas.

Saturday, December 9, 2017

The day you realize God's work is actually just human work

Photo courtesy of Annika Leigh/Flickr
Artwork by Emma, who has Down Syndrome.

I have a story to share (don't I always?). 

It's about a moment I'm not proud of. Actually, looking back, I'm kind of mortified by it.

I was a senior in high school. My friends and I had just spent the perfect day in D.C. wandering the mall admiring cherry blossoms. On the train ride home I was in an especially goofy mood. Sitting with my friends, I started talking to a water bottle I was carrying. Why did I start talking to a water bottle? I don't know, it was 18 years ago. I've always been a strange person. 

As I recall, one of my friends dared me to continue talking to my water bottle for the whole ride home. They all got up and moved a few rows back so I was sitting by myself.

Well, I suppose, not myself. I had the company of the aforementioned water bottle. Which I continued talking to, even as strangers sat by me (then promptly got up and moved). I vaguely remember the dialogue involved me planning a wedding for myself to the water bottle.

I know, I know.

Here's where it gets uncomfortable.

My friends were sitting behind me, whispering among themselves and laughing. Periodically they'd throw bits of paper at me. 

There was a woman nearby who glared at my friends. 

She looked at me and asked, "Do you know those girls?"

I lied and said no.

She told me not to worry about the girls. That they were being mean and that I was special.

"My teachers tell me that, too," I told her. 

I know. I know. Asshole. I was an asshole. One of the biggest kinds of assholes. 

The woman chatted with me for a bit then moved on. My friends stopped throwing whatever it was they were throwing at me. 

I kept praying that the woman would get off the train so that I could go back to being ... myself. But she rode all the way back to Vienna, which was our stop too. I waited on the train as she and my friends left. Then I got off and kept my distance until I was sure the woman was out of sight. At that point I reunited with my friends. They couldn't believe I'd taken the joke so far. I couldn't believe it got out of hand.

And what was the joke even? Looking back, I'm not sure. A seemingly normal teenager pretending to be someone with special needs, someone who could've been construed as mentally ill or mentally disabled isn't much of a joke. It's not all that funny. I know this now. I knew it at the time, too. The situation unraveled in front of me and I didn't have the courage to back up and own my own assholery.

I'm sharing this story today because so often when I tell people I sub a lot in special ed, I often get this look from people. Like they're impressed. Sometimes they'll say something along the lines of, "I could never do that." One person commented to me that special ed teachers were doing "God's work." There's this sense that there are people who are "called for special ed" and then the rest of the world. That the people who teach special ed or who work with people with special needs were somehow born with more patience and more compassion than everyone else.

With all due respect to the wonderful special ed teachers I've worked with, this is kind of bullshit. For evidence, I will refer you to my opening anecdote. Clearly, I wasn't someone born with some natural affinity for helping the mentally disabled. I wasn't born with endless reserves of compassion, kindness or sensitivity to other people's feelings.   

I'm just the same old bumbling human we all are. 

I know I'm just a substitute teacher. That's different than pursuing a career in special education. But even the special ed teachers I've worked say they sort of fell into their careers by chance. One started out as a sub like I did. Another studied psychology in college and decided to try out teaching after a stint working in a psychiatric care facility. An adaptive PE teacher I was talking to recently said she'd studied nutrition but decided to teach after a stint working with Special Olympians.

The common factor for all these teachers is just exposure. As in, at some point in their lives or careers they happened to have spent time with individuals with special needs (whether by choice or by accident). 

I'm not sure I would've said, "yes" to subbing in special ed if it weren't for the fact that for seven years, I happened to live across the street from someone who was born with multiple intellectual disabilities.

Christie, one of my neighbors in York, has a big smile and an infectious laugh. She always loved seeing Snacks and has a standing date with Pat Sajak to watch "The Wheel" every night at 7. Her nails are usually painted and she likes to accessorize with bracelets or a Minnie Mouse watch. 

When the girls were little, I used to spend hours on slow summer afternoons chatting about life with Christie's mom, Georgia. We'd bond over the isolation of stay-at-home motherhood- though my dependent children were just babies and her dependent child was just a couple years younger than me. 

I was so touched by Georgia's relationship with Christie– she once told me, "Sometimes I don't know where she ends and I begin"– but I could also see how much Chritie's future weighed on Georgia's mind. She and her husband, Scott are in their 60s. Georgia has had various health problems in the past several years. I know she loses sleep over the question of what would happen to Christie when they were unable to care for her anymore. 

To be honest, it took a long time for me to feel comfortable around Christie. Maybe comfortable isn't the right word. I think I just didn't know how to interact with her. I didn't know what she'd understand and I was fearful of making her nervous. I didn't want to do or say the wrong thing. So, for a long time, I just didn't do or say anything.  

But over time I began to realize you interact with Christie the same way you interact with any person, you know? You say, "Hello." You ask about her day. You find your commonalities. I just learned to talk louder (because she was hard of hearing). I learned to listen harder (to make sure I understood her). And I learned that even a short conversation could be a meaningful conversation. 

Christie is a busy lady– she goes bowling, goes out to eat, she goes to a day program where she learns life skills and does art and has "club" in the evening where she meets up with friends. And, of course, she had "The Wheel." When we became friends, she'd greet me with a smile and a hug, but if she had some place she'd rather be or something she'd rather be doing, she didn't waste time chatting.  

It was enough for her just to be seen, to be acknowledged, to be appreciated. And these are skills we're born with as humans, right? Our instincts are toward companionship, toward community. 

We're born to seek connections with other people. 

The thing is. when someone seems so drastically different than us, we get caught up in this idea that we won't know how to connect with them. But what Christie has taught me– and the kids at school have taught me– is that you don't need special training, you don't need divine powers, you just need to be human and you need to see them as human and then you go from there. You meet them where they are.

It doesn't take a saint to help a student with Downs Syndrome count by fives or help a student with Autism learn how to have a basic conversation. It just takes a willingness to see humanity in all its amazing beautiful shapes and forms.

And the ability to take a deep breath and maintain a sense of humor and a sense of groundedness when you're around someone who might randomly grab your arm, or who periodically jumps out of his chair and runs down the hallway, or who'd much rather spend an entire day discussing dragon mythology than learning basic social skills. Or someone who doesn't speak a whole lot, except to repeat the lyrics to "Hey Jude" or "Yesterday" or "We Can Work it Out" over and over. Or someone who bounces up to you and tell you he's going to eat your brains. Or someone who can't stop herself from swearing loudly in the middle of their English class. 

I see bits and pieces of myself and people I love in all of these students. So I can't help but like them, even as they baffle me and sometimes annoy me even. Because they're human and I'm human and none of us are perfect.

A couple years ago I co-wrote a story with my friend Ashley for the York Daily Record about how adults with special needs in Pennsylvania and their families are often left in limbo waiting for critical services. The parents I interviewed were in their 60s and 70s (one was in her 80s). They'd been caring for their special needs children for decades and just wanted to ensure they would be in good hands when they could no longer provide for their children. In Pennsylvania, and I imagine in most states, the resources devoted to individuals with physical and/or intellectual disabilities are stretched thin. The burden of caring for people who cannot care for themselves often rests on the shoulders of willing family members, paid caregivers, overwhelmed state agencies and nonprofit organizations. 

The Philadelphia Inquirer is running an in-depth series related to the story Ashley and I wrote title "Falling Off the Cliff." This excerpt caught my eye:

"Parents of adults with I/DD followed Christina's case closely, and they called to share their own horror stories about caregiver abuse and agency incompetence. About political and public indifference to the needs of those with I/DD. About the lack of compassion and resources for elderly parents who have become too old and frail to care for their aging, impaired children. About the sudden elimination of educational options when a disabled child turns 21, a descent so dramatic and universal that parents call it "falling off the cliff." 
Their stories could fill a book. But each would only nick the surface of a crisis that is barreling toward us like a tsunami: We will soon have more intellectually and developmentally disabled adults living in this country than at any other time in our history. 
Advances in medical care have allowed kids born with Down syndrome, for example, to live twice as long as they did just 20 years ago. And the explosion in the number of  children with autism -- one in 68 children are now diagnosed -- means we'll soon have a vast population of adults in need of services like those Christina's family had hoped would keep her safe. 
Add these numbers to those of children born with the two other most common roots of intellectual disability -- Fragile X syndrome and fetal alcohol spectrum disorder -- and we have a looming social, economic, and moral crisis. What will we do about, with, and for these vulnerable adults and the families who struggle to care for them? And how much are we willing to pay for it?"

That adaptive gym teacher I mentioned earlier told me she was out the other night talking with some guys at a bar. One of them asked what she did and when she told him, his response that was like the garbage collector of teachers– just working with all the rejects. The teacher swiftly corrected him without the use of expletives or physical violence, which I think, under the circumstances, was pretty admirable. Because really? REALLY?! Comparing a whole person to trash? Comparing somebody's child to refuse? How is this still the world we live in?

I wanted to write about this today because the story of people who are often overlooked and marginalized is our story. It's a story we all need to take ownership of. It's a story we all have to play a role in. Not just the parents of these children. Not just their overworked teachers and instructional assistants and therapists and caseworkers. Not just the nonprofits who are gracious enough to extend services. No, all of us. We all need to be willing to look past our obvious differences and search for our obvious commonalities. 

That's not to say that everyone needs to pursue a career in special education or occupational therapy or social work. I think we can start to make a difference just by acknowledging these families in our communities and being friendly. I get the sense that having a child or a sibling in this population can feel so isolating. So help them feel less isolated, you know. Say hi. Start a conversation. Get to know them. Just offer your time. Then go from there. 

You'll grow as a person. You'll find grace and gratitude. You'll deepen your wells of compassion and empathy. You will form relationships with people who will make you laugh and invite you to see the world from a new perspective and who will love you despite your many flaws.

You will learn that despite what might initially seem like massive differences, that there are still universal truths we all hold. 

The middle schoolers I hang out with have taught me so many useful things. Like:

  • Mondays are always tough no matter who you ever.
  • It's never not a good time to dance.
  • Beatles forever!
  • If you're having a rough day, sometimes all it takes is looking at a picture of Shawn Mendes (look him up, I had to) to cheer you up. You could sub out Shawn Mendes with your celebrity crush. But I know at least one student who would think that is unwise.
  • Making farting noises on your arm is never not funny if you're the one making the farting noise. If you're the rest of the class, it's the worst.
  • The best moment of the week might just be sitting in your teacher's pickup truck at the end of the day.
  • When learning about invertebrates, SpongeBob SquarePants is a surprisingly useful reference (Patrick the starfish! Gary the snail! Mr. Krabs! Squidward!)
  • It doesn't matter whether they're a seventh grader in a contained classroom (kids who need additional learning supports) or a seventh grader in mainstream classroom (kids who don't) they're all generally spazzy, obnoxious, prone to inappropriate outbursts, excitable and kind of ridiculous in the best ways possible. 
We're all just muddling through here. The best we can. Hoping to find small joys where we can.

My point in all this mess is that you don't have to wait for some sign from the universe or some call from the great beyond to start seeing people as people. I doubt the parents of these special needs kids felt they were suited for the job of raising their child with Down Syndrome or Autism or other intellectual developmental disorders when their kids were born. They were probably terrified, as any of us would be, in the face of the unknown. But it's not as if they have a choice. So they adapt. They educate themselves. They open their hearts wider than they thought they could go.

I think we can all do the same. We're always at our best when we serve those on the fringes. Those who are marginalized. And maybe serve isn't the right word– because that somehow implies a one-sided transaction. It's not. To coin a phrase from Stewie, we are all "richer for the experience."

Just go out and be kind. Even if you were the person who 18 years ago impersonated a person with intellectual disabilities on a Metro, for instance. Be like the woman on the train who stood up for the asshole (even though she didn't know that person was an asshole). 

We're all called to love. So go forth and love.