Wednesday, June 21, 2017

In His Eyes

My sweet Alien Cat was not pleased that her camp group was not where she expected them to be.

I saw it in his eyes. It was just a flash, a fleeting moment, but I recognized it and it kicked me in the gut.

Today is “Mummies and Monsters Day” at Stella’s camp. Stella is not a fan of mummies nor monsters, but being the incredibly creative person she is, she whipped up a “Cat Alien” costume that is killer. (That girl’s obsession with cats began from before she could talk and has persisted consistently for nine years.)

We arrived, a bit harried. We were running later than this chronically-early-anxiety-ridden-mom would have liked, thanks to the fact that Stella wouldn’t put down her book at breakfast to get dressed and sunscreened-up until we’d gotten angry at her. (The only thing she loves as much as cats are books.)

It was bright, loud, and crowded. And to top it all off, Stella’s group wasn’t in their usual spot.

I started to panic. I know this kid like the palm of my hand, and even long before her autism spectrum disorder diagnosis earlier this year, I was aware of the problems a cocktail of situations like this could cause.

Stella doesn’t do well in the very bright sun, even with her sunglasses on.

Stella tends to freeze in a large crowds.

Stella has trouble staying calm when there are loud noises.

Stella likes routine and predictability, and her group being moved was not in the plan.

She didn’t have a tantrum, which was good. She’s been going to therapy to help her control her emotions when things don’t go according to her plan. But she looked worried. And she did that thing she does when she worries: she started to crawl into herself, to hunch over and make herself small.

I assured her it would be OK – that I’d help her find her group, but my heart ached for her. I looked around, desperate to find a recognizable counsellor or kid. I asked Stella, “Honey, don’t you see anyone you know?” But she wasn’t looking at anything but the ground, and she was close to tears. 

“No, Mommy! They’re not where they’re supposed to be.”

That’s when he approached. He looked confused, but kind. “Hey there! I’m Stella’s counselor. We’re meeting on the basketball court today.”

Stella shuffled past him, not looking back at me, not realizing I was trying to plant a kiss on her head. In her little Cat Alien outfit, complete with pointy ears and Ugg-style boots in the summer heat, she slumped to the basketball court like a kid going to the guillotine.

And he looked at her like she was different. As fast as it was, as innocent as he is, I know he did. And I know he did because I used to do the same thing.

I’ve taught in public schools for almost 15 years, and I’ve worked with kids all over the spectrum, kids with various learning disabilities, kids with mental, physical, and/or emotional conditions. I pride myself on making accommodations that ensure that each child feels supported, loved, valued, and successful in school.

But when I gave birth to Stella, I had to confront the fact that – as much as I loved and worked for my kids who weren’t neurotypical – I always saw them as different. I hate to type these words, I hate the shame they bring, but the truth is, I didn’t always see these kids as quite as “real” as the rest of us.

When that little boy stood too close to me and talked too loudly, I thought, “He has autism.” When that girl clasped her hands over her ears and ran out of the bathroom at the sound of the hand dryer, I thought, “She has autism.” When that student’s IEP stated that I needed to quietly restate directions to him and break longer assignments into short, manageable bits, I thought, “He has autism.” Sure, I had a positive attitude about helping them. Sure, I cared about them every bit as much as my other kids. But I was so hung up on thinking of them as autistic that I forgot to remember that they were also real people – with real thoughts and real emotions.

Stella has autism. But I forget she has it 1,000 times a day. When we laugh our heads off at something her little brother does. When she crawls into my lap – despite the fact that she’s obscenely tall for her age – and snuggles with me. When she plays with our neighbors’ kids in the backyard. When we sit together on the couch and read our books. When she swam into the fiercest waves on our vacation, refusing to be afraid of their strength. When she cries, worried that adorable kiwi birds will go extinct. When she paints an incredible picture or writes an astounding poem or quips a ridiculously sophisticated joke that leaves her father and me in stitches.

That counselor didn’t see any of that when he looked at Stella this morning. He saw a kid in a strange get-up act anti-social and disoriented because her group was 20 feet from their usual spot.

But I wish he could. Because underneath that quirkiness is a very real kid, with a very real heart and a real but incredible brain who just handles things a little differently than some of us. She is not defined by her autism diagnosis; her diagnosis just helps us know how to speak her language and value those differences.


Maybe someday he’ll get here, too. I hope he does. The view is beautiful.

*****

I'm thrilled and honored that this piece was chosen for the wonderful parenting site, Scary Mommy. Take a minute to check it over there, and follow them on Facebook!

Monday, June 19, 2017

This Time Last Year

I'm really good at hiding my misery for a picture.

My brain has a built-in Timehop. I can't help but think about where I was this time of year last year, or five years ago, or when I was nine. For example...

This time four years ago, I was seven months pregnant with Sam, entering into that phase of pregnancy that makes me want to crawl under a rock and die.

This time 12 years ago, I was starving myself to fit into my wedding dress, not suffering any cold feet. (Nope, none at all.)

This time 14 years ago, I was nearing the end of my first year of teaching, wondering if I would ever survive in this career.

This time 19 years ago, I had just moved to New York City, wondering if I'd made a colossal mistake.

But lately I keep thinking about this time of year exactly one year ago. Because I can barely believe how things have changed.

Things were bad at this point last year. Very, very bad. It was around this time of year that I had my very early yet horrible miscarriage. Despite the fact that I've always encouraged other women to speak out about such events, to stop burying them as if they're shameful, I found that I didn't want say a word. I felt embarrassed. We hadn't planned on another baby, and we kept talking about how we felt "done" at two. It was so early that I didn't ever realize I was pregnant until it was already over, so I didn't feel like I had a right to mourn.

Because I didn't make space for myself, my anxiety got really bad. I felt like nobody cared about me, which dredged up all kinds of memories of my childhood -- when I lived in family that revolved around a dangerous narcissist. I really didn't matter in his eyes, and while my dad is dead and I've long since left that dynamic, I found myself feeling like that eight year old child who accidentally peed in the car because her father refused to stop for her, terrified that he'd beat her for ruining the upholstery.

Dave and I were in a horrible place. Not too many people knew about this, but our marriage was very shaky last year. We'd set up a lot of communication patterns that had hit their expiration date, and we didn't know what to do. We are each other's first major relationship, and we both come from divorced homes that contained multitudes of dysfunction. Although we didn't physically hurt each other or cheat on each other, we both did things that made the other feel like he or she wasn't important, wasn't valued, wasn't loved. And neither of us was sure we were willing to change.

We went on a vacation that should have been fun, but it was pretty troubled. We drove down to lovely Destin, Florida. Sam was two, and not very good at car rides. He spent much of his time taking his shoes off and flinging them at Stella, who screamed bloody murder in return. When we stopped the car,  he clung to my body like a spider monkey. He'd pull on and pinch me, sticking elbows and knees into all kinds of crevices of my body as he tried (unsuccessfully) to reenter my womb. It was hot and sticky and I was so touched out that I proclaimed (more than a few times) my desire to go to a desert island for at least a month.

Stella hadn't been diagnosed with autism spectrum disorder yet, but this trip was the catalyst for her evaluation. She had an incredibly hard time adapting to change. For example, if she had her heart set on chicken tenders for lunch but the menu only had chicken nuggets, she'd fly into a tantrum. She threw fits about the heat, about the walking, about not getting ice cream every time we passed a stand. But most of all, she was miserable about the sleeping situation.

We'd (foolishly) reserved just one room with two beds. It was much smaller than we'd anticipated. Stella has a hard time sleeping in general, due to her sensory issues. She needs a pitch black room, a white noise machine, and no other living soul within a 50 mile radius. We finally decided to give her one of the beds, even though there was no room for a pack and play, meaning Dave, Sam, and I shared a full-size bed. I was elbowed and kicked in the head an average of 150 times per night.

Sam woke at least once per night, crying due to his disorientation and discomfort. Hearing Sam cry made Stella SCREAM. Scream like she was being accosted. It was so hard to get her to calm down, and we were afraid the cops would show up.

My anxiety multiplies like Gremlins without sleep, so I was an irritable mess. And remember how I'd fallen back into childhood patterns? Well, that meant that I stopped speaking up about the things I wanted to do on this trip. This trip that I'd single-handedly planned and worked for, suddenly I was just going along, letting Dave and the kids do the things they wanted to do, not taking time for myself and my vacation goals.

And then, on the last day, I sobbed, upset that I hadn't gone zip-lining, that I hadn't eaten at that restaurant that I'd read about, nor had I consumed enough cliched, overpriced, umbrella-laden rum beverages. Dave was perplexed. He didn't know I'd wanted these things. And I was hurt, because I felt like he'd never taken the time to find out what I did want.

When we returned, I played the martyr once more by not putting the kids in camp. I felt that Mom-Guilt that society heaps on us for ever wanting time away from our children, but I also felt financial guilt (camp ain't cheap). So, instead of working on my book or doing yoga or going to museums on my own - all activities that would have fed my soul and made me feel better - I became a stay-at-home-mom, a role that I was not cut out for. Kudos to my friends who make this look easy; it is hands-down the world's toughest job to me.

We'd either lounge around and watch too much TV, or I'd battle tears and arguments to take the kids to the park or zoo or pool. Dave was working on freelance projects, so I couldn't feel like I could ask him to take the kids, even though that would have helped tremendously.

In short, last summer sucked.

But, thank God, things are 180 degrees from there this summer. Dave and I spent a ton of time working on our marriage, seriously looking at our own mistakes and formulating a new path. Stella got evaluated, and now receives services for her ASD that help her adapt to new situations well. Sam is three, which is a different kind of crazy than two, but he is a much better traveler (and less clingy). I went to therapy regularly to work on my anxiety. And I've given up competitive parenting for good, content with the knowledge that I'll never win the "Most Dedicated Mom" award, seeing as both my kids are in camp today while I do housework and work on my book.

We just got back from an incredible trip to the Outer Banks, a blog entry unto itself, and the whole time I kept thinking, "Thank God this isn't last year anymore."

So, the next time I feel trapped by my circumstances or my obligations or even my own mind, I want to remember how, with some tenacity and optimism and patience and profound VERY BIG LOVE, things can always get better.

I didn't have to fake anything here. This is what bliss looks like.