Thursday, March 5, 2015

A View from the Middle

I'm just sitting here wondering if the two sides of the autism camp are ever going to get along.

I know this is a hot-button issue. And I know most of you are aware of what I'm referring to -- the great rift, the Us vs. Them that's developed in recent years over those who see autism as a tragedy to be cured and those who feel as if people on the spectrum are fine, thank you, just the way they are.

This is such a hard one for me, because I see both sides. I've lived both sides. I truly believe you can make arguments either way, and I see the way espousing aspects of either point of view could end up hurting people with autism (or autistic people, as some prefer).

Here's the thing: there are times I tire of Autism Speaks' rhetoric and yeah, I'll say it, fear-mongering. The worst of it all is that I get the sense they feel the best way to get attention, the way to get funding, the way to make an impact, is to paint autism with the most cruel, dramatic brush as possible. To trot out scary stats and make the most of them. To me Autism Speaks...it's time to listen, (one of their "taglines"), really means, "we're going to tell you what autism is, so listen to our frightful picture and help us do something to eradicate this thing."

I'm no expert on this for sure, but my understanding is the vast majority of Autism Speaks' research goes not towards the people already here needing help and better options, but on research into the root causes and early detection and treatment -- this includes the possibility of prenatal testing.

This scares me more than any of their statistics. This scares me, because I think of the burden they portray autism to be, and about that running through an expectant mother's mind as she goes for prenatal autism testing at some point who-knows when in the future. I think of that, and then I think of my incredibly awesome joy of a son, the one who has an actual, definite autism diagnosis. The one who has looked at me and told me how much he loves me. The one who loves numbers and repeating scripts from commercials and music and playing with his sisters and sports and all things on a screen.

My son is not something to eradicate.

And yet there are parts, there are some areas of the autism spectrum that are truly horrific. When you have a person who lives paralyzed and anxious because of the assault on their senses and their different way of taking the world in...a person completely nonverbal or close to it who has no good way to communicate their needs and as a result acts out in all sorts of destructive ways to express their frustration...a person who regularly participates in self-injurious behaviors -- how is that something we can just open our arms to and accept as being okay?

Again, I feel pretty unqualified to even be writing about this because there are so many things I don't know, and so much I haven't researched. But, as someone who grew up with the most severely autistic individual I've ever met, and who parents a son with a form of autism the average person on the street cannot even see -- I find myself at times growing frustrated with both sides.

I guess looking back over it all I would say two things:

We have to do more about services for teens and adults with autism, particularly in the areas of assimilating in college, and finding employment and living arrangements. Several years ago my mom was with me at an Autism Speaks Walk (I've since given these up) and she kept looking around at the informational booths and shaking her head. "Where are all of the services for older people? These are all for kids," she commented. It's as if the pervading mindset is (or maybe it's just human nature) that we'll throw everything possible at these kids to help them now. Only, autism is not something that just "clears up." As much as we want help for today, we HAVE to think about tomorrow, because tomorrow will surely come for today's kids on the spectrum. And there's so much more we could be doing.

The other is, and here I agree with well-known autism blogger Jess Wilson at A Diary of a Mom (which is not always the case). Autism Speaks can't have it both ways. You can't quote alarming statistics and paint devastating scenarios using numbers that include a vast number of people who are getting by just fine, who are different but happy, who in the past may not have even received an autism diagnosis, who just have a different way of perceiving the world and need understanding. There is a very real group of people like my brother. They desperately need help and yes, I dare to say I don't open my arms and accept this type of autism as just fine. I love my brother, but I don't think this is his best kind of life.

But we can't paint with such a broad brush. There are people out there still not vaccinating because they are terrified that autism is exploding in our country. We can't forget this is a spectrum that can't be put into a neat little box, and probably can't be addressed in the typical way we'd fight say, cancer or work to find a cure for cystic fibrosis.

And the more I listen, the more I realize the arguments about autism and what to do about it run as broadly as the spectrum itself. And so we must approach them in the same way...with understanding, with patience, and with the openness to being inventive, creative, and thoughtful about not just today, but about how today's actions will impact tomorrow.

Tuesday, March 3, 2015

Philosophy Lessons from a 13-Month-Old

So among Chloe's favorite things to do these days are learn how to crawl up the stairs and attempt to build block towers.

The stair thing, well, it's a catch-22. I want her to know how to do it, but then again I don't really want her climbing. We won't even talk about the day I was really sick and suddenly heard Ethan upstairs with her. Apparently when I'd zoned out he'd sat at the top and coaxed her up the stairs. "See? She can do it!" he announced proudly, while I nearly passed out thinking about what could have happened.

So I allow her to climb the stairs sometimes, always right behind her, to get more practice in case we have one of these "incidents" at another point. And she'll start out eagerly and then push herself to keep going. Sometimes she stops in the middle and looks around as if she's thinking, "Wow. I'm kind of getting up high." And then she plods on. The funny thing? She always stops at the second to the last step. And she starts to cry. She'll try to climb but something stops her. The last step looks different...or maybe it's that there's not as much to hold on to.

I watched her hang back when she had the World of Upstairs just inches away, and wondered how often we all do that. How many times do we get so close to making a change, to taking a risk, to doing what we've always told ourselves we would do, and something stops us? Sometimes we've even done the most difficult part of the journey. But something about taking that last step, something about the reality of it all overwhelms us, and we stay in the Land of In-Between.

As for blocks, Chloe's not been the type to enjoy knocking them down that much. Both Anna and Ethan used to do this gleefully, whereas I get the sense she doesn't really like wrecking things. She will almost politely knock towers over, but in the last week or so Chloe has decided she wants to build them. And so she's earnestly grabbed some of the oodles of colored wooden blocks we have lying around, and she gets the second block into position -- and then, nine times out of 10, she runs into a little snag.

"Chloe, you have to learn how to let the block go," I heard myself saying, and then thought, Who knew? You don't think about all of the steps that go into building something -- even an object as simple as a tower of a few blocks. And you can have the materials, you can have the desire and intent, you can get them into the right position...but you also have to open your pudgy little fist and let the block go.

Chloe kept trying to do this. She'd get the block in place and start to let go but at the last minute snatch it back. Then move it over. Then push it to the floor. Or take just long enough to let go that everything lost its balance and the tower was no more. A few times she'd get it -- then sometimes she'd go right away and grab the block back.

Sometimes we think we have to have our hands into everything, when really the best thing we can do is open them up wide and step back. Sometimes we can be our own worst enemy. Sometimes we can have the best intentions but need help with the execution. And sometimes we've done everything we were supposed to do -- and the worst option is to go grab it all back and upset the natural order of things.

Who knew, indeed. Sometimes the best way to complete something is to let go of it.

Friday, February 27, 2015

Who They Are...Not What We Want

The morning had just about done me in. Again.

You non-morning people, I don't know how you manage. I consider myself someone who jumps out of bed bright-eyed and bushy-tailed by 6am or before, yet still, still, mornings seem to slam us around here.

Somebody's mad that they don't have the right clothes to wear.

Somebody's upset about breakfast.

Somebody forgot to do their homework...doesn't want to go to school...is taking 43 minutes to get dressed.

Yesterday, I managed to break off my passenger side mirror on our trash can while pulling into the driveway. Don't ask.

Usually I return home after dropping first Anna, then Ethan off at school, and the kitchen looks like a bomb hit. And this is with me trying to clean as I go!

This morning the issues of the day were that I needed to drop off books at the library before they opened, so they wouldn't be overdue, and Ethan needed to do reading for school he'd forgotten to do the night before, in the car.

All he had to do was take out the book and read. Only first his gloves were on, so he had to take them off. Then a song that he liked came on the radio. Then he couldn't find his glove. Never mind there was no way he could have lost it in the last four minutes in the car, he HAD to find it before he could read.

And then we were already almost to school, and I threw my hands up in the air (well, not literally, as I was driving) and said "Forget it! Forget reading!" Darned Common Core, making little first graders read every night. In first grade, I read my first sentence. Ethan was reading biographies, for goodness' sake. Whether or not he was truly understanding was another thing.

Then it was off to drop off library books (We had them all! We had them all!) and off to a meeting for my mom's group (MOPS).

I wasn't feeling particularly defeated but the morning hadn't been sparkling, either. In retrospect, I think it was the nagging that bothered me most...having to do it...trying to bite my tongue...giving up and getting louder and louder the closer we became to being late. Is this what I wanted to be remembered for...a constant, nagging, droning, Charlie Brown teacheresque voice in the background?

At the meeting they put on a video. This guy was talking about loving your kids, about loving people extravagantly. He was telling all of these stories. He told about, after 9/11, talking to his kids about the world and how they wanted to write to a bunch of different world leaders and ask them to talk. And he let them. He didn't blow off the idea. Only, somehow, a bunch of these leaders wrote back. And somehow (this guy obviously had the means the way most of us don't), he took the kids out of school and took them to some of these countries, and they met and dined with actual presidents.

This wasn't the whole point. The theme of the video ended up being: we need to spend more time telling people who they are, what we see in them, what they're doing right, and less time telling them what we want them to do.

It's so easy to see everyone, particularly our spouse and kids, as projects we need to work on. We think -- if only we could just shape them into this mold that I've got ready over here, instead of letting God do that.

Yes, there's a time for discipline and instruction and structure and all of that good stuff.

But then there's a time for celebrating. My kid can read! Maybe he forgot to read last night, but he can read and read well, when there was a time I wondered when in the world he would talk. And my daughter may have her emotional moments...and she puts them to darned good use up on the stage.

Maybe I can't fly them around the world and do something crazy exotic, but I could laugh with them. Maybe I could say yes to something I'm always nixing. Maybe I could stop saying "be careful" and instead come out with, "I trust you."

Maybe I could just take the smallest of breaks from all the do's and don'ts and remember to tell the people in my life how awesome they are right now. Works in progress. As we all are.

I left that meeting not feeling the weight of trying to be a better mom but inspired. It's time to make some memories, even if they don't involve a trek to Bulgaria. It's time to love extravagantly.

Monday, February 23, 2015

Rest

So, I have this goal to read the entire Bible (I never have) and was slogging through this part in Leviticus about feasts and laws. There was a lot to it, but what jumped out at me was that every seven years the Israelites were supposed to let the land rest. They weren't supposed to harvest it. And every 50 years, basically all debts were cancelled and it was a big party. And then, of course, not far from that section is the commandment to keep the Sabbath.

I sat and chewed on that. We are commanded to rest. We are commanded to rest. That's not a suggestion.

This point has really hit home over the past 10 days or so, which, without mincing words, was fantastically crummy. Never mind that we are mired in the coldest February ever and the snow is so deep the kids can no longer go out to play. But then everybody got sick, and then I got sick again, and everyone was home for the better part of a week with nowhere to go, and people wouldn't stop whining, and I felt too sick to try to pick up so the house became a disaster, and the list goes on and on.

Both older kids, when they came down with a stomach bug, plunged into this period of deep, deep sleep where you could almost see their little bodies work to rejuvenate themselves. They woke up vastly improved.

I, on the other hand, caught a secondary virus, and I'm pretty sure it has something to do with never getting enough sleep.

But this isn't just about sleep. This is about rest. This is about being still.

This is, I feel, a chronic problem in our society. I am wondering how to get past it.

I don't think our bodies were meant to flit about the way they do. Have you noticed how jittery most of us are? We need our "fixes." We need our coffees and a jolt as we see how many Facebook notifications we have. We need to see something, read something, hear something. We need feedback or to spout an opinion.

What happens when it's silent? Do we feel empty? Do we feel we have to fill it? Do we know how to stop? Do we know how to stop our minds?

I know I don't.

I wonder sometimes, what it would be like to live in a time when you rose and went to bed with the sun. When on Sundays, nothing was open and you went to church; had a meal; visited with friends. When there were no screens to stare at. When we weren't bombarded by stimulation at every turn.

There's a reason we are commanded to rest. We aren't meant to live like this. At least not to the extent that we are these days.

So what can we do?

Every person is different, I know there are some who aren't as affected, who have an easier time resting and being calm and just thinking about one thing at a time.

I am not one of those people.

I don't have many answers yet, but I know there are habits I can practice, that I need to practice.

Like focusing on one task at a time.

Like being fully present when one of my kids is talking.

Like not checking online all the time to see what's up.

Like not having to have the radio on in the car when I'm alone.

Like going to bed at a reasonable hour rather than staying up and staring at something I didn't even want to watch on TV.

Like actually taking in the world around me rather than just blowing past it all, talking on the phone, flipping dials on the radio, and admonishing the kids to stop bickering.

The other day Ethan and I were in the car, and even though he was just getting a haircut I was so gloriously happy to be out of the house and to see the sun shining. As I rounded a corner, the sun hit the ice on a group of maple trees spread along the shores of the Connecticut River. The perfect angle made them all glitter like diamonds.

When we slow down, when we rest and become less harried, I wonder -- just how many treasures will we uncover?

Sunday, February 15, 2015

Shining Happy People

I woke up on Valentine's morning thinking it would be nice if the family went out to breakfast together, and Dan agreed.

We don't spend a ton of money these days on "leisure-type activities," and Dan's free time is limited, and with our kids at wildly varying ages and stages, few things work as well for us to do as a family as going out to eat. But sometimes just getting there is an adventure in itself.

As expected, when I told Ethan we were going out for breakfast, he met the news with a less than enthusiastic response.

"But WHY?" he asked. "We don't usually do that."

Anna was still sleepy and grumbly about being woken up. Chloe fussed about having her coat shoved on.

Outside the temperature was about 5 degrees with a wind chill below zero. Lovely.

We decided on either IHOP, Friendly's or Denny's. Of course, everyone had different ideas about where we should go. To stop Ethan from nagging me, I told him it was "daddy's decision." Dan chose Denny's.

"Ugh, why there?" Anna sighed. "That place is awful."

I had to concur on that; at least based on our last experience. We'd waited to be seated for 20 minutes. Half of that time we spent listening to a man complain to the hostess about how terrible his meatballs had been. I was thinking, Why come to Denny's and order meatballs? but I digress. They sat us directly under a vent blasting cold air and we then waited an exorbitant amount of time to be served meals that were sub-par at best. Except Ethan's pizza. Ethan LOVED his pizza, which his why he had spent a good deal of time afterward waxing poetic about the joys of Denny's and how it was his favorite restaurant.

We pulled into the Denny's parking lot, which seemed unnaturally crowded. All of these people really want to eat HERE? I wondered.

Dan went inside to check out the crowd situation and came back shaking his head. "It's a madhouse in there."

We attempted to pull out of the parking lot and turn left, only we weren't allowed to, and ended up having to drive the wrong direction until we could find a place to turn around.

"Noooo! I wanted to go to Dennys!" Ethan started sobbing. "They are my favorite restaurant!!"

"I'm huuuungry!" Anna wailed.

"Shush, you're not two years old," I admonished.

"We could go to Taco Bell. They have breakfast now," Dan said jokingly. Only Taco Bell is Ethan's second favorite restaurant -- and it was just down the road.

"Yes!" Ethan cried. "Let's go to Taco Bell."

"We are NOT going to Taco Bell. I wanted a nice, sit down, relaxing place for breakfast." I'd already had to concede this last time we went out as a family and the only place not crazy busy was a Chipotle's wannabe that way overcharged us. I'd spent half the time continuously getting up to get more napkins, straws, salsa, spoons, and the like while Chloe threw her food all over the floor.

We finally found a place to turn around and then spotted a Friendly's. It was right near the Taco Bell.

"Let's go to Friendly's," I said. "Unless it's too busy."

"Noooo!" Ethan wailed. "Taco Bell is right there. It's daddy's decision."

"Ethan, we're going to Friendly's!" Anna exclaimed.

"Unless it's too busy," I chimed in.

Friendly's was not too busy. We found a spot and I had to wake a sleeping Chloe to get her out of the car seat. She cried, disoriented, as the huge hood on her coat completely covered her eyes. Ethan was crying in the parking lot, too. "I don't want Friendly's! I wanted to try Taco Bell. I love Taco Bell."

Another family walked by us. They too had two older kids and a littler one, close in age to Chloe. They seemed so peaceful.

Why couldn't we be like that? I wondered for a moment. Shining happy people holding hands?

We'd reached the doors now and Ethan was leaning over a snowbank, attempting to stifle his sobs, still muttering about Denny's and Taco Bell. Through clenched teeth I handed out some threats about no screen time and being thankful that he even got to go out to eat. I realize he doesn't like his routines changed and it's hard for him to deal with disappointment, but this was getting ridiculous.

Then inside Friendly's we were seated and everything changed. We sat Chloe in her highchair and she started grinning winning smiles. Anna happily took out her Pokémon cards and spread them out on the table. Dan and Ethan began talking about the football stuff on the kid's activity mat.

A little old lady walked in right about then, and looked at us with one of those Awww, aren't they so sweet? smiles. I gave her a small grin back. If only you knew, though, I wanted to reply. If only you knew.

And that's when I knew that there were no shining-happy-people-holding-hands families. Or there were, but they weren't without the same types of moments. Who knew what had been going on with that other family in the car, or that morning at home? We all have our stories. And some of them are pretty ugly.

One of the worst things we can ever do is believe that we're alone; that we're exceptionally dysfunctional. We're just human.

And now we were ready to eat food that would take too long to come. Chloe would turn heads with her red-faced pushing sounds as she was filling a diaper (sorry, TMI). They'd forget Ethan's jelly and my hot water for tea. The pancakes would be dry and Ethan would eye his hot chocolate with a huge dollop of whipped cream like a kid in a candy store. Chloe would create a swath of food destruction under her highchair. I would try but not completely succeed in picking it up.

And we would have a gloriously imperfect time of it.

Wednesday, February 11, 2015

Odd vs. Even

"Is seven an odd number?" Ethan asked not long after his seventh birthday in November. I wondered if they'd been talking about that in school. I told him yes, and I told him Anna was 10, and that was an even number.

"I'm on odd's team now," he announced, as if we were talking t-ball or something.

"That's right," I concurred.

After that, I caught him counting the letters in words. A lot. The boy was super happy to learn Chloe was on his "team," and Anna was not (age and letters in the name, that's a double-even!). Mom was on his team and so was dad. And one of our cats. He was teasing Anna about this, that she was so outnumbered, and since Anna and Ethan pick fights with each other about everything, she actually started to get cranky about this...

...until she started creatively adding letters to things to bring them from the odd to the even side. And so, for example, Timothy, our cat, if you called him by his middle name, too (yes, we give our cats middle names, why do you ask?) was actually Timothy Jones, and that was 12 letters, and so really he was on even's side.

A number of odd vs. even arguments have ensued. Ethan got to taunt Anna because XM radio was an odd number of letters. But then Anna yelled back that June, her birthday and favorite month, fell into the even category.

Normally, I'd be supremely annoyed by another one of these "let's find the craziest thing in the world to get mad at each other about" kind of sibling arguments, but in this case, I'm taking it a little more in stride. The way I look at it: they're counting and spelling while they're fighting. That's got to be good for something.

Yesterday both of them had dentist appointments, one right after the other.

"Can I go first this time?" Ethan asked. I complied; it was indeed his turn. He looked completely happy, and I figured this was a typical yay-I-got-to-go-before-my-sister victory moment.

The next day, he fessed up.

"You know why I wanted to go first yesterday?"

"Why is that?"

"Because 1 is an odd number, and odd is on my team."

Ahhh, why didn't I think of that?

Now, if only we can avoid him barreling over everyone in his path at school to be first because it's "his team," we should be okay.

I think I need to use this theory on him when it's time for everyone to take baths, or maybe get shots. I need to hurry. Only nine months to go until he switches teams.

Thursday, February 5, 2015

Grace in Hand

I looked at Anna's bare ears as we were heading out to the car one evening to go somewhere. "Where have all of your earrings been?" I asked, fully knowing the answer.

"Well, I kind of can't find them," she said sadly.

"Again?!" I exclaimed as we climbed into the car. The evening was frigid. Again. And dark. "You lost every single one of your earrings...again!" I demanded.

"I didn't MEAN to," she insisted, sad and frustrated.

I started into my diatribe. I told her we weren't going to get her earrings if she was going to lose them all. That she had to learn how to be more responsible. That maybe we should just let the holes in her ears close up until she could learn to be more responsible. That she HAD to take better care of things.

She didn't say much from the darkness in the back, but about halfway through I began to get a picture in my mind. It was of the sorry state of my own jewelry. I thought of how many lonely earrings were sitting in a box, waiting for their mates to be found. I thought of all of the pairs missing backs. I thought of the broken ones and the pair I'd worn once before losing one.

I knew, even as I continued lecturing, that I was really speaking to me.

Looking out at bleak January, I wondered how many times, really, did I lose my temper with my kids because they were painfully exposing my own shortcomings? I wondered how I could ever explain that sometimes I was angry because I felt I had failed?

How could I explain that really, I was wondering how I could teach my daughter to be responsible when I didn't know how to responsibly care for my own things?

The next morning, I was still thinking about the earrings. And as I thought, I heard something distinctly in my head.

Give her a pair of your earrings.

"Seriously?" was my first response. The girl had lost every pair she'd ever owned, and as I'd realized so painfully the night before, I had the same problem. My earrings were in short supply.

Give her a pair of your earrings.

This was crazy. Foolish. And how was that teaching her a lesson? Wasn't I "enabling" her irresponsibility?

None of the arguments held any weight against the insisting voice: Give her the earrings. And I knew just the pair. The ones they'd given out at the first day of my mom's group. The dangly little feathers.

And so before Anna headed to school, I told her I had something for her. Then I placed the earrings in her hands. Her eyes lit up. Before I could say anything, I knew I wasn't supposed to say anything. I wasn't supposed to add, "Now don't lose them," or some other "condition" on the gift. I needed to just give.

She put on the earrings and was on her way, and I knew.

I knew this wasn't for her. I knew there would be other days for life lessons and talks about being responsible. I knew that today, that every day, I needed to know. I needed to know what it was like receive mercy so I could properly extend it. This was not about cutting slack and allowing excuses to do the wrong thing. It was about learning to stop the club from smashing down on my head the moment I make a mistake.

Before I could teach her how to not lose her earrings, I had to teach her what it meant to give and receive on those days when its undeserved.

All that, from a tiny pair of feathery earrings.

Grace she can hold in the palm of her hand.