Wednesday, June 27, 2012

The Storm

The storm arrives, right over the "Scream" tower
We arrived at the amusement park at 11 a.m. The temperature was around a bazillion degrees (actually, I think it was something like 90, and humid). Four hours later, we descended on the waterpark. Dan and I with the kids waited in a gargantuan line for a really, really fun tube ride. Then finally, at long last, we made it to the pool. Sweet, lovely, cool water.

We'd been swimming for less than a half-hour when I saw the storm clouds gathering. I looked over and saw Ethan having the time of his life. He'd never experienced a wave pool before.

Uh-oh, I thought. This could get ugly.

Within five minutes the sky was darker than dark and the lightning began flashing. Lifeguards ordered everyone out of the water. I'd never had a moment to let Ethan know there might be the slightest chance we'd have to end our pool time a little early. He seemed completely bewildered, and then outraged. The tears began as we splashed our way out of the water. His screaming started not long before the deluge from the skies.

I couldn't blame him. As we stood there under a small shelter while the clouds cried and he burrowed his head into my towel, wailing, I thought of how much I hated to have my own plans disrupted. The sold-out movie. The favorite restaurant that was closed. The vacation that didn't happen.

And sometimes, the paths I wanted my life to take.

This storm was relentless. Instead of blowing by, it ramped up. The wind blew rain in on us. Thunder rattled everything and we're pretty sure lightning struck something nearby. And the rain; the rain. The rain just would not stop.

For awhile, everyone stood there waiting to get on with their day. Ethan got tired of crying. We trained our eyes to the skies, willing them to stop. Our little shelter spot grew very crowded.

The minutes stretched to a half-hour, maybe more. The realization began to dawn that this wasn't going to stop anytime soon. I watched.

I watched Ethan forget his trauma and do this:

I watched a group of teenagers perform some kind of dance out in the downpour.

I watched people make mad dashes through the raindrops, laughing.

Everywhere, there was laughter. Everyone was laughing at the futility of attempting to stay dry. Some were purposely jumping into the puddles and lakes that had quickly formed, sending more spray everywhere.

As the storm raged on I saw that all of us who had been having a perfectly fun day at the amusement park would now be having a memorable one.

What is it about the storms that make us more alive? How is it that the storms are indeed what makes our lives more rich, more textured, more real?

There's always a lot of discussion about how to help people with autism deal with disruptions in their routine; to cope with disappointment and change. I think more than anything it's because that's what the fabric of life is.

If we can drink in the raindrops when we wanted to be swimming in the pool, then we are truly living.

Monday, June 25, 2012

Be Yourself

"Just be yourself. The best, cutest, quietest version of yourself. Definitely wear lip gloss." - The Sweater Song, circa 1992

I will never forget it.

The year was 5th grade, and I had the best teacher in the world at Myron E. Richardson School in Gilberville. Mrs. Paul. Mrs. Paul had a passion for music and language arts, just as I did. Our assignment was to write an essay and submit it to something called the "Happy Pages," which ran with the Sunday comics each week in the Worcester Telegram. I can't remember the exact topic, but it may have been something like What Makes Me Happy.

I wrote a darned good essay. I wrote from the heart. I don't remember now exactly what I wrote, but I remember feeling proud: proud, that is, until each student in the class had the opportunity to read his or her essay aloud. My heart began pounding. I sank lower in my seat. I had to find a way not to read mine. I had to get out of there because my essay was nothing like any of the others. Most of them were writing about Mrs. Paul, about how awesome and nice and friendly she was. In my seat, I began erasing and scribbling furiously. This called for a redo. I just couldn't be different. Dutifully, I began to write. Another thing that makes me happy is my teacher, Mrs. Paul...

Of course, the conclusion to this story is obvious. The day came for the What Makes Me Happy entries to appear in the paper, and not one of us from Mrs. Paul's 5th grade made it to print. Although there were a few winning essays that seemed painfully similar to my first draft, the draft that had ended up crumbled in the trash.

That day, I think, was the first I understood the meaning of regret. That day was the first I had to admit I cared way too much what others thought of me.

These things have a way of passing themselves on, we've noticed. As Anna learns and grows Dan and I can see, despite our outward efforts to encourage her to be herself, to not follow the crowd, to have confidence, to trust in her God-given abilities and unique personality, those tendencies towards insecurity are indeed there.

Anna hates to show up somewhere wearing the wrong thing, or do something that will make her stand out, or to be laughed at. She absolutely, positively freaked out about having to wear a cast for a few weeks last year. She often wants to fit in, go with the flow, not make waves.

This has concerned us, when we think ahead to the teenage years. We have tried not to think too much about that.

Yesterday Anna went to a dance-themed birthday party for a friend who attends a different school and takes numerous dance classes (Anna does not). She didn't know most of the girls there. This friend is a true girly-girl, complete with long gorgeous hair and a flair for fashion I don't even have.

Anna is not a girly girl. Oh, she'll play princess and loves little cute girly-type toys and dolls; she loves when I paint her toenails, but what she most prefers is reading, experimenting, going barefoot, and often, I have to say, playing with water and mud.

It probably doesn't help that she has no sisters, has a mother with no sisters, has a grandmother with a very similar personality who also has no sisters. No one ever taught me much about hair or make-up, for example, and it took me quite awhile to realize I didn't really care that much. I've tried to be open to the fact that Anna may have some of those interests and we can't be totally in the dark. I've offered to do her hair (knowing it would most likely come out disastrously). I've encouraged her to wear skirts and girly things. But like me, she just doesn't care that much. At least when she's being real Anna, at home, banging around with the family.

So there Anna was at this party yesterday, with lots of girls in sequins and sparkles, and the instructor put make-up on all of them.

"She put in on, but I didn't like the way it felt," Anna explained to me that afternoon back at home, her face showing just the slightest traces of lipstick. "It was itchy. I asked them if I could wash it off."

I thought of my girl being there with the other girls, in this age of tweens getting younger and girls getting meaner. The girls in this group ended up being fine, but we all know, you just never know. You never know if the pack mentality's going to kick in and suddenly there is going to be something very wrong with having an opinion.

There she stood, matter-of-fact, having made a different choice. Get the icky make-up off. True to herself. Hours later now, she stood before us, her face beaming. I don't know if she had ever looked prettier.

There are so many times as a parent when you feel as if all you do is speak in platitudes. You wonder if anything is getting through, if your kids are even listening. 

Anna has gotten all A's, scored in the 99th percentile for reading on standardized tests, can sew her own clothes, and is a model big-sister.

But never, ever had we been so proud as that moment when Anna decided it was okay to be Anna.

Thursday, June 21, 2012

Songs and Safety Nets

I've been working on this blog post for what seems like forever.

I was going to write about how the past few weeks have been an eye-opener, in more ways than one.

I was going to write about the meeting with Ethan's teachers, the one in which I made my impassioned plea that the school must provide better for those children on the spectrum who have primarily social/communication challenges, must offer more to meet their individual needs: only to have all of them nodding their heads in agreement. Keep making noise, they told me. The administration listens better when it comes from you.

I was going to write about the realization during our search for new health insurance, which our family will purchase on an individual basis rather than from an employer, that most of the plans out there don't cover those same types of services I'd just been encouraged to fight for. I was going to write about how I've learned that if we had no income, any type of therapy, including the social skills group his re-evaluation concluded he would greatly benefit from, would be covered. But once we pass a certain threshold, we're on on own. Oh, we could pay out of pocket: $400-$500 per session. Per session.

I was going to write about how very easy it is to claim I am "at peace and trusting God," when really I'm trusting in a paycheck, a generous health insurance plan, a healthy 401K, the perfect therapy, the perfect solutions that will tie up life neatly in a little bow.

I was going to write about all of those things and more. But it's dawned on me that in the last several weeks I've been learning lessons that aren't really new at all, the same lessons we learn over and over throughout our lives. I've learned that there are the things we can do, and the things we have no control over. I've been reminded that if I really want to live in such a way that I truly rely on God, maybe having some of the safety nets removed for awhile might not be such a bad thing.

So, in the midst of issues that can't be resolved like a 22-minute sitcom, I'll instead write about a moment.

Yesterday was Ethan's last day of school. As a parent, I still love the last day of school: the burgeoning excitement of a summer story not yet written; the bulletin boards ripped bare and rooms packed up; the tear-filled goodbyes sprinkled with laughter and sweet recollections. Ethan's last day came complete with bubble blowing, dripping popcicles, and songs in a sweaty gym.

I had somehow missed last year's celebration. Normally when the school gathers in the gym for events the music teacher leads everyone in singing songs. No one class goes up and performs. So I wasn't expecting what I saw.

A little backtrack: years ago now, when Ethan was diagnosed, there came a day when I watched all of the children up front at church, singing a song they'd practiced.

Maybe I should have known better. Maybe I should have had more faith or confidence. But immediately I thought: Will Ethan ever be able to do that? He was two at the time. I just didn't know. My only point of reference was Andy. My brother, who had never memorized a song to sing with his class, even with special needs kids. Andy, whose amazing accomplishment (and indeed, it was amazing!) was performing on stage, doing tumbling I remember one year, once he attended residential school and was closer to his teen years.

With Ethan, I just couldn't see it.

Yesterday, after the school said the pledge, the principal invited Ethan's class to perform a song they had practiced. They all marched to the front. Ethan was somewhere between the center and on the side of the line facing us. I strained to see his face. The fans whirred; kindergarteners and preschoolers shifted in their criss-cross applesauce seats on the floor, and parents waited. Then they started in with the first line to a song we've all heard many, many times:

If you're happy and you know it clap your hands...

We sat and watched, Dan and Anna and I, and the grin almost split my face in two. Ethan was up there, and he was singing and he was doing the hand motions with all of his classmates, and best of all, he seemed to be soaking it all in. He seemed to be enjoying himself. He wasn't intimidated by the several hundred people in the gym. He wasn't even distracted by the big fan. He wasn't jittery or refusing to cooperate or wanting to get out of the line and go sit down. He was doing something he seemed meant to do.

I knew that feeling. It was the same feeling I got when I was singing with a group in front of people. It's the feeling you get when you love singing and music so much, and the experience just envelops you in a way that makes you not care about everyone out there, because you just want to sing.

That's what I saw, when I watched Ethan.

That's what we saw yesterday. We didn't have all of the answers to our questions or solutions to our problems. But we knew one thing. When it came to singing, to being up on stage on doing what was once thought impossible, we now knew.

Ethan could do it.

Ethan (second from left) blowing bubbles with his class

(This is typical, shaky, amateurish video and you can't see Ethan (second from the right) until the end. But I still had to add it in here. )

Thursday, June 14, 2012

Birthday Girl

Someone's turning 8 years old in a matter of days...

Three weeks old and smiling!

I could lament about where the time has gone or how eight seems a little too close to 10, and to tween, and to boy crushes rather than Lalaloopsy dolls.

Eight months

I could talk about Anna's spunk; her love of reading; her creativity; her knack for quickly problem-solving, her love for her little brother; her artistic ability.

1 year

And yes, I could note the way she tends to follow her parents' path in the area of athletic ability (I wish I could say that was a good thing), her mom's tendency to be melodramatic, about her fiestiness (read: temper) at times.

Age 2 or 3

The more Anna grows the more I realize she is everything like her parents and nothing like us. Some days, I feel as if she's the standout in the family. 

3 years

What I mean is, she's not quite like the rest of us. She's a little louder, has a bit more of a spark, is a little less laid back, is more bold, more take-charge.

First day of kindergarten, age 5

Then I realize that is just how I was as a kid: the one who had the personality a bit different than the rest of the family. I was the oversensitive one, the melancholy one, the dreamy one up in my room for hours, the one that everyone didn't always quite "get."

And thanks to Anna, now I better understand the way we can still completely love a person without completely understanding them.

A parent's love isn't just about loving someone who is just like us. Isn't that the way God loves us? Firstly and freely. Without conditions. Loving Anna helps me to remember that I too was, truly, loved unequivocally all along.

May 2012

Thank you for the reminder, Anna. Happy Birthday, sweet girl.

Thursday, June 7, 2012

Hey Jesus

Apparently, Ethan has started really paying attention in Sunday school.

This began a few months ago. The whole "Jonah and the Whale" thing fascinated him. So for Easter we got him a little Bible. Most kids who grew up in the church have had one of these little Bibles. You know, with the cartoonish-looking characters and the abbreviated (and often necessarily sanitized) stories?

Ethan picks stories to "read" in his Bible according to their pictures. So Jonah is popular, and the guys in the fiery furnace, and Jesus calming the storm, and the part at the very end that shows a golden shining chair surrounded by rainbows in heaven.

"That's God's chair!" Ethan always announces, since I informed him just what the picture was supposed to be depicting.

The other day we were flipping through the Bible and Ethan was asking me to read various stories. On the very last page of the Bible is a page with just Jesus, drawn in his typical Jesus way (the robe, the sandals, the beard), smiling.

"He's looking at you!" I said to Ethan, knowing what that would mean to him. Ethan will often walk by the giant ads of people in Target or even at the newscaster on TV and say the same thing. "He's looking at me!" He'll be almost shy about it, in a sweetly egocentric way. Yes Ethan, the woman in the huge poster near the beauty products at Target is indeed looking right at you, only you, and urging you to purchase some mascara.

This time though, this time, I knew his assumption was right in its own way. "God always sees me," he's been taught, and so I didn't think it was so bad to say that cartoon Jesus was looking right at him.

I didn't expect what happened next.

"Hey Jesus, you know what?"

Ethan started a conversation.

"Jesus, we went on a trip and we went on a boat and a train. Jesus? Would you like to go on a trip with us?" he asked eagerly.

"Jesus, I did my show upstairs [dancing to the radio in his room]. Jesus, next time you're going to come to my show."

This boy who struggles most mightily in interacting with his peers, who gets speech therapy to learn how to initiate and sustain conversation, was talking as freely and easily with Jesus, as if he'd known him forever.

"Hey Jesus, you know what?"

As he chattered I thought about the scriptures about having a childlike faith, about approaching the kingdom of God like a child.

I thought that this is the way God wishes to talk to all of us.

I thought about the way we change and grow, and not necesarily in a good way. Our conversations with God are stilted...cut off by cynicism and mistrust...or dressed up by pretense.

Yet really, God is most of all just looking for a simple conversation, from a heart that trusts that He does indeed hear and really does care, about all of it.

Even the dance party in Ethan's room at 6:30 a.m.

Hey Jesus, are you still on the cross
or are you feeling better?

Hey Jesus, will you come play with me?
Im ready and willing.

Won't you come...

down, down, down, down to the ground.
To the next to me place
with a smile on my face
and a song in my ear

Around and around and around and around
Around we go

- Jason Upton, with lyrics created with his then young son

Monday, June 4, 2012

Mama Bear Crawls Out of Hiding

Most people who know me know I hate confrontation.

I'm one of those people who gets along with almost everyone. I agonize over words as to not offend and feel nothing short of mortification when I put my foot in my mouth. I think, re-think, overthink, and think some more about what to say and not say, and usually if I have a choice, I won't speak up.

I'm not necessarily proud of all this.

When we entered into this whole wacky autism world, there were a few things I quickly realized. One was that everyone kept throwing around phrases like "you have to be your child's advocate" and "you'd better fight for everything you can get for your child." The world presented to me was that we parents are on one side and the schools are on the other side and you are going to have to claw and bit and scratch for your child's fair share.

I didn't like all of these analogies. I didn't like hearing people talk about being assertive, about fighting for a cause. It scared me, frankly. Not only that, but I also didn't quite understand where some people (namely other parents at a group I was attending) were coming from. Ethan's teachers and therapists seemed to listen to our concerns. We were happy with the amount of therapy he was receiving. They heard our desires about his placement in an intergrated class and worked gradually to get him there. For a long time, I didn't feel like fighting, I just felt grateful.

But our kids change, schools and staff change, and we as parents change, too. People talk about fighting because some of them do indeed have to fight to get basic services. People talk about advocating because really: who else is going to be your child's champion, be your child's voice?

I've learned that being friendly with my son's teachers can be a wonderful thing but also sets up a natural-born people pleaser like me to not want to rock the boat or take the risk of marring the relationship.

I've learned that a school can be doing just fine, but just fine doesn't necessarily mean enough.

I've learned that kids like Ethan very easily fly under the radar. They don't cause a lot of trouble. They might be very smart in certain areas, maybe have made some great strides. That doesn't mean they don't still need support...the right support for their individual needs. That doesn't mean that an explanation like, "Well, that's just an area kids on the spectrum are going to struggle with" should ever be the end-all answer.

Do I dare say it? Is that not similar to what George W. Bush once called "the soft bigotry of low expectations?"

I read this today from Jess at A Diary of a Mom. Speaking of her recent meeting with staff at her daughter's school, about her pushing them to create lofy goals for her daughter (who also has autism)she wrote:

Sometimes, no matter how much we may doubt ourselves in every other aspect of parenting our wondrous kids, there’s a voice that pops up from deep within the Mama Gut that says, “We’re selling my kid short and that’s not OK.”

Summer is approaching. Next year is Ethan's last year (sniff!) before kindergarten, the year, the school has told me, "we're really going to work on the social stuff." Even though he's had social goals for two years, goals that don't seem to be met or worse, discussed in much detail after they have been formulated. Even though his teachers have thrown around flippantly several times comments like, "he'll learn to play and relate better to his peers when they all start getting into video games."

I love Ethan's teachers. I can't communicate loudly enough that I love Ethan's teachers. But when educators look at my son and see a hundred other kids they've seen before, and give me pat answers they've given a hundred other parents, well, despite the good will, mamma bear is going to have to crawl out.

A meeting's scheduled for Thursday. I just wrote a letter and need to press "send."

Now I know what all of those parents were talking about. Now I wonder if I'm becoming on of "those" parents. Now I know "those" parents can't be so wrong in asking for the moon.

As Joyce Meyer says, "I'd rather ask for a lot and get some of it than ask for nothing and get all of it."

Here goes...