Tuesday, May 31, 2011

Holes and Elevators

I read an article awhile back about how being a mom actually makes you smarter. I absolutely concur. In fact, I'd add that being a stay at home mom must up one's IQ at least a few more points. Never mind those worries about "staying home is going to turn my mind to mush." I've used just as much brain power and creativity to come up with new ideas on the 5th snow day in the house than I did when I was crafting communications plans over at the hospital.

Add autism into the mix, and creativity when it comes to teaching and keeping things fun in the home becomes a MUST.

The thing with Ethan is that he is darned smart. This is not just a proud mamma raving here; his teachers told me back when he started school that he learns more quickly than any child they'd had in the autism program for quite some time. He's smart but lacks motivation and focus. I read somewhere that people with autism have an extremely difficult time doing something that they don't want to do. You know the way we have to tear ourselves away from a good book to do something like cook dinner? Or watch a movie someone else wants to watch but we're not interested in? We suck it up and do it. With autism, the brain and will resist more mightily.

The way this plays out for us often is that Ethan will attempt something for a moment, realize he's not interested and motivated, and bam! He's done and on to something else. What to do? I used to wonder...I STILL wonder, but now have a few more tools in my toolbox.

In Anna's class they often talk about "connecting thoughts." They read a story, for example, and then the kids tell about a connection they have to it; maybe something similar to the plot that happened in their own life. With Ethan I realized connections were huge. Or more than that, familiarity. His beloved ABA therapist Jessica first mentioned this, when I asked her how help him be at least minimally interested in the animals in the barn at the park.

"Why not sing Old McDonald?" she suggested. Of course. Ethan loves music, he loves the song, and it relates to the topic at hand. Singing Old McDonald brings something familiar and desirable into a new and (in his eyes) not that interesting experience. We tried that next time and voila! Progress.

And so I am always looking for connections. At the bird sanctuary the other day we sang Ethan's favorite rooster song once we saw the roosters. This made him smile and bought us more time there so Anna could enjoy the birds without us whisking by everything in a blur.

When Ethan turned three I thought we should think of ways to motivate him to start working on dressing himself. For awhile he wanted nothing to do with it. One day an idea popped into my head -- holes! Ethan loves holes. I can't tell you why, but they hold a special place in his heart. I wondered if introducing dressing as an opportunity to "look for the holes" might make the whole concept more attractive. "See the big hole?" I asked, opening a t-shirt for him. "These are the little holes," I added, pointing to the sleeves. Ethan was sold. A month later, he can dress himself with some help now. Every morning he goes through his shirt and pants, looking in the holes and asking, "Is THIS the big hole?" at each one. It's a little game now.

Ethan also has an affinity for elevators. At first I was just using them as a reward (i.e. "if you're good in the store at the mall we can ride on the elevator"). But then I wondered if there was another way to maximize the elevator's allure. First we tried Bristle Blocks. I thought building an elevator might interest Ethan a little more in the blocks. We met with some success. Ethan loved watching ME build an elevator, and he did help me build one, too, before smashing it. Recently I thought of our chalkboard. Ethan hates writing but really needs to keep practicing at it. His hands are weak and it's something he continually struggles with in OT. I can almost never get Ethan to write on our chalkboard, but last week I asked him to watch me drawing the elevator going up, up, up, and then down, down, down. That was all it took to get him over there. He grasped the piece of chalk and in his own clumsy way, which is improving, starting making lines up and down. Then I asked him to do a merry-go-round (another favorite), so we could do circles. He loved it! I was so happy to see him happy doing something he normally dislikes.

We are hoping to (finally!) plant our vegetable garden next week. I am thinking a certain someone just might be interested in dropping seeds in the "holes." It's worth a shot, anyway.

P.S. I know I'm not the only out there wracking my brain to come up with creative ideas to help my kids. Other moms of young kids reading this, I'd love to hear some of your inspirations!

Sunday, May 29, 2011

Breathing Grace

We all have these days as moms; as parents; as humans. You know what I mean? The days that start out so earnestly. For me, it usually means I took the time to flip through the pages of my Bible; have a little chat with God. I often (knowing all too well what lies ahead) plead that I don't just pray and believe a bunch of empty words in the quiet of the morning, but remember them throughout the stress of the day -- that I actually apply what I learn. I'm not so foolish as to not ask for God's strength, to try to do it all on my own.

Yet STILL. Failure occurs.

Yesterday was not a disaster. I decided to keep the kids away from the backyard for the bulk of the day since Dan is working hard to finish our deck. We went to the park. We went to McDonalds, including the play area. We did errands. Throughout it all I felt my stress level begin to rise. Never mind the usual challenge of two young kids and the strong wills that come with them; autism sometimes complicates things.

Throughout the day, I tried to plan everything out in my head. The running conversation up there went something like this: Okay we'll go to the playground first and then the bird sanctuary. Then we need to promise something else fun or Ethan won't do the bird sanctuary. How do I slow him down so that I can still enjoy the birds with Anna even though he's so bored by animals? How do I get him away from the water fountain? We can't do snack first because we need to save that for the garden, since I know he'll be bored by the garden, and Anna will want to see the garden. But we better save some of the drink because they want to do another playground. How can I get him to listen to me at Sears? Should I still let him go to McDonalds when he ignored me and played with the door when I told him not to? Should I just let him play with the door? How can I let him play with the door to the play area at McDonalds when people keep going in and out? He's trying to force it closed and he's going to get hurt. How can I encourage him back into the tunnels and away from this tantrum because I told him to leave the door alone?

And on and on I went. As my thoughts danced away, I felt the pressure cooker boiling. Steam began to escape from the cracks. I became more snappish. Sometimes I yelled. By the end of the day, despite all of the fun things we did and the blast the kids had with the hose in the backyard when all was said and done, all I could think of was how I rushed from one thing to another, my mind rushed from one thing to another, and I bubbled over and nagged and snipped and snapped all throughout the day. And worse was wondering if that's all my family would remember of the day, too.

"You're being too hard on yourself," Dan cautioned gently, after the kids were in bed. More than that, I think, I was being too hard on life, working so intensely to mold the day into something perfect.

Working is the key word there. So much of life with autism involves working, planning, organizing, thinking ahead, analyzing, reflecting on how to do it better, make it better, change things around. Sometimes though I can get lost in the work and forget about living -- forget to breathe in grace.

This morning Ethan woke up singing his ABCs. Anna ran in and they cuddled and tickled and ran around together, and then she helped him get dressed. Neither of them looked at me in judgment. Neither of them remembered my failures.

Thank God His mercies truly are new every morning. Today I get another chance. Not to be perfect. But to live remembering that I have been endowed with a grace that never stops flowing.

Friday, May 27, 2011

Mrs. Shirl

I noticed her almost from day one, when I'd go to pick up Ethan from school: the older (maybe fifties or sixties) black woman with the big smile and sunny personality. She always arrives a few minutes before me to pick up her granddaughter from kindergarten, while Ethan is waiting in the same entryway with his aide.

She loves to talk. She loves to make friends with kids and adults alike. And she loves Ethan.

Apparently at first Ethan was very shy about her overtures. He wouldn't really look at her, even. Then one day she announced, "He smiled at me today!" as I walked past her coming out of the school while I was walking in. Awhile after that, "He actually gave me a hug!" she reported.

About a month ago, she had a question for me as I got out of my car and she was about to drive away in hers. "Can I bring a little present for your son on the last day of school?" she asked. I was a bit taken aback. "Uh, sure," I could only answer.

The next week as we walked out of the school, I saw Ethan stretching out his hand and waving towards her up ahead of us. "Uh...hi! Hi!" he called. She turned around and said something like, "There's my boy!" Her smile was huge.

"He doesn't know what to call you!" I yelled to her.

"He can call me Mrs. Shirl!" she called back.

The other day I picked up Ethan a little early from school and actually met him in PT near the gym. As we were walking down the hall back to the school entrance, he suddenly forgot everything, because he spotted his friend in the distance.

"There's Mrs. Shirl!" he exclaimed. He began jogging down the hall to her, his eyes bright. He had to get his hug.

Every time I think of Mrs. Shirl, I have to smile. In my mind's eye I see her fondness for my son; the loving way she chides her granddaughter; her hand motions as she directs me to the nearest free parking spot when I pull up to the school.

Every time I think of Mrs. Shirl, I'm reminded of the way the smallest gestures can make the biggest difference. I think back to when I was 13 and dreadfully awkward, and the woman from church, Denise, who only spoke to me really once, but in that one sentence whispered in my ear, "You are so beautiful."

I think of how I can be a Mrs. Shirl, a Denise -- how I can turn someone's day around or life around. There are times I can be so buried in my own "stuff" that I forget to look and listen to the world around me. Sometimes I need to extract myself from my cloud to be a light.

Like Mrs. Shirl every day at Roger Wolcott school, spilling over with something that's most definitely infectious, in the best possible way.

Monday, May 23, 2011

Sunday Morning

We were sitting near the back. As usual second service on Sunday morning was packed. On this day, as they do once every year, the kids had taken over the service. Some were greeters. Others took the offering. A few were up on the stage singing during the worship time (along with the band, who were all teens/young adults). We all sat waiting for each of the classes to come out, the elementary and preschool-age kids, to share their part.

But first, Brenda had something to say. Brenda, the special education teacher who is the leader of the special needs ministry our church is launching. She played a video. She shared facts. She talked about autism specifically. And that less than 10 percent of churches have any kind of special needs ministry. She talked about families who feel so alone; who desperately need support. She encouraged people to be tolerant, understanding, compassionate. She urged people to volunteer, if they felt God was prompting them to do so.

She spoke of that verse from Matthew: Whoever welcomes a little child likes this in my name welcomes me.

As she spoke I noticed people around me wiping their eyes. I wondered what they were thinking. Did they have family members or friends with special needs? Or even a child? Our church is so big -- there are so many people I don't know; so many stories I don't know. Or were the tears something else? A little whisper from God. A little urging. A few more eyes opening; hearts opening.

"Every week for two years," one of the Sunday school teachers was telling me the other day, referring to another mom in the church with a special needs child. "Every Sunday she'd ask, 'How's the special needs ministry coming along?'"

I've written of this before here. And here we were. It was really happening. For once I had (almost) no tears because I was so proud. My heart felt full.

How fitting that they introduced the special needs ministry on the day that was all about the children. How vital that this group not be forgotten. God has not forgotten.
So many people need this. It's a work in progress, but it's coming alive. I can't wait to spread the word.

Thursday, May 19, 2011

Elvis Sightings

I was reading a blog awhile ago by a woman who has a daughter with pretty severe autism. In one post she mentioned the concept of Elvis sightings: these brief, incredibly almost unbelievable moments in which her daughter would blow her mind by doing something this mom didn't know she was capable of doing. In her case, I think it was saying a few words clearly. And then - poof! - the moment was gone, the words were gone, and did not reappear that day, or the next, or the next month, or even the next year.

Elvis sightings can leave you wondering if you only imagined what you saw or heard. They leave you bewildered and hopeful at the same time.

Apparently Elvis sightings are pretty common with autism. I remember we would have them once in awhile with Andy. The big one was undoubtedly when Andy started singing "Happy Birthday" out of blue when he was nine years old after being non-verbal his entire life. The moment came and went, just like that -- but that was our first glimpse that he was capable of more speech then he had been producing.

We've had a couple of Elvis sightings with Ethan, too. The first one was at the beginning of 2010, when he was a little over two and barely putting two words together. During Christmas we had put out this manger that is quite possibly one of the cheesiest bits of decor we have in our home. Let's just say that a well-meaning relative found it for us at the Goodwill. This manger is complete with a plastic lit up star and a garbly version of the "Hallelujah Chorus" that plays again and again. We called the manger "Jesus," for Ethan, and he absolutely loved it. Once the holiday were done and he noticed "Jesus" was gone, one day he up and out of the blue said, "Where Jesus go?" When I told him he ran over to the basement, opened the door and called out, "Jesus! Jesus! Jesus is in the basement!" I laughed so hard I cried.

Today, a year and a half later, those exclaimations would be amusing, but not a big deal. He knows how to ask questions and speak in long sentences now -- but after his "Elvis" moment, Ethan went back to speaking two-word phrases for the next eight months or so, then 3 and 4-word sentences, and it's only in the past few months his sentences have grown longer. Yet I knew he could do it. The ability was in there, somewhere.

Fast forward to the present. Ethan is 3 1/2. He's pretty good at answering "who," "what" and "where" questions now. "Why" is the tricky one. I've been thinking he doesn't quite get it yet. Usually if I ask, "Why are you sad?" He'll just repeat, "Yeah? Why?" in a sad voice. But today I happened to be walking by him in the kitchen, and he was looking at his electronic Thomas toothbrush that hasn't worked in quite awhile. There happened to be some double A batteries out on the kitchen counter.

"I know why toothbrush broke. It need new batteries!" I heard him say, mostly to himself. He seemed quite impressed with his discovery. To Ethan, the way to fix anything is new batteries, or a new cord ("Gas station is broke!" he yelled the other day when we passed a closed one in town. "Need new batteries!").

I stood there very still for a moment, amazed at this problem-solving. Voila. A "why" question asked and answered by Ethan himself, no less. We may not hear another one for quite awhile. But it's in there. It's in there.

Wednesday, May 18, 2011

A Chuck E Cheese Moment

Sunday morning, circa 1985
We pull up to church, and my heart sinks. I hate being here. It's church but it's the most unfriendly place we visit all week. The people stare. My brother is three and has autism. They don't get it. We go inside and I hear their polite hellos. During "coffee hour" I hide in the bathroom, as most of the girls my age don't attempt to be friendly. Later, after a worship time, I head outside to watch my brother. He can't handle Sunday school, and I don't want to be in Sunday school with those girls, so I volunteer to be out there. I feel safe but alone. And still, I feel their stares, even when no one is looking.

9th grade Social Studies, 1989
I sit in the front of the class with my big glasses and big hair and make-up that is all wrong. I'm too smart and too much of a crybaby and my only good friend and I got in a huge fight two months before. In this class, I am completely alone. I hear the whispers behind me. Sometimes they are not even whispering about me, but other times they are, so I just assume. Arlene, a particularly vocal one, yells out this day while our teacher is out of the room. "You know who I hate?" She points over at me. "HER. She's so ugly. I hate her so much."

May, 2011
Anna has a mild break in her arm and it is encased in a cute purple cast. "I CAN'T go to school!" she wails before bedtime. "They'll laugh at me! I look different and weird. I don't like that!"

Today Ethan and I ended up at Chuck E Cheese after his school was cancelled last-minute due to a power outage. I got a boatload of tokens and he attempted ski-ball, the merry-go-round, and a million other annoying little rides they have in there. He was having a blast. He's been asking about Chuck E Cheese for awhile. As he ran from ride to ride and game to game, I noticed something.

He was really excited. And he was flapping his hands.

Ethan has never been much of a visual stimmer, doing a lot of the typical outward things people might attribute to a person with autism. He doesn't usually rock, or flap, or make unusual noises. But lately, I've noticed more of this hand flapping. And there at Chuck E Cheese, as we played alongside other typical things, it was all I could notice.

First, there was the fear. What does this mean? I wondered. Is he regressing? Between these and the doors and the tantrums lately, is he sliding backward? What's going on inside his brain?

Then, there was the other fear. The fear that's gripped me all of my life, that I can see already has tried to grip my little girl. In fancy Biblical terms, we would call this The Fear of Man. In my head it's always had it's own voice that whispers, "What will everyone think?"

The voice was birthed when I was a kid. It got louder over time and grew deafening by the time I was in junior high. We all have a dose of it. But if we don't have a good sense of who we are, and who we are in Christ, it never truly goes away.

Today in Chuck E Cheese I saw that I had been hiding behind the fact that Ethan has no visual or obvious symptoms of autism. I took some secret pleasure in being able to skirt in and out of places, and people wouldn't stare and wouldn't know, and we could just sweep this all under the rug, and I could breathe a sigh of relief because this unseen monster, The Opinions of Everyone Else, would be kept at bay.

I can't do this anymore God, I thought and prayed right there near the tunnel slide. This is not how I'm meant to live. How do I do this? I begged. How do I not let this bother me when it's strangled me my entire life, when I'm scared and just want to believe Ethan will be okay and that you CAN heal him...but never want to feel as if you HAVE to heal him, or else He isn't enough, and you aren't enough?

At that very moment I suddenly keyed in to the song that was playing on the annoying non-stop TVs they have on either side of the stage. It was some furried creatures singing a song I had blocked out of my mind along with most of the other bleeps and blips of the games. But now I heard these little critters singing loud and clear:

Don't give up. Don't give up.
Just keep on trying, keep on trying.

Suddenly right then and there I felt this cloak lift off of me. I felt simultaneously lighter and stronger. I heard Beth Moore's voice from the Bible study video I'd watched the day before, quoting the 23rd Psalm and how the literal translation of the valley of the shadow was really as if David was writing that God would be there, walking with us even in "the shadowiest of the shadows."

Even if Ethan regressed.

Even if prayers went unanswered.

Even if people stared.

There is a power that comes on you when you choose, when you truly decide that God is good and loving. And loves YOU. No matter how circumstances appear. In that same video Beth Moore said really that's all that matters. Yet those two beliefs have never come easily to me. When they don't, everything else is skewed and skewed badly.

It was time to go. We headed towards the exit, walking past the moms and other kids. Ethan was still flapping a little, but this time I saw him and no one else. I saw a little boy who couldn't help what he was doing, and who I loved desperately.

Has anyone in history ever been able to claim they left Chuck E Cheese a changed person? Or a changed for the better person? Now I'm laughing. This is something I plan on doing more of.

"There is no fear in love. But perfect love casts out fear..." 1 John 4:18

Monday, May 16, 2011

I Need...

"I NEED the doors!" Ethan was wailing loudly. Again.

We were at my in-laws' house Saturday, spending time also with my sister and brother-in-law, niece and two nephews, one of whom is only six weeks old and darned cute. My father-in-law had a bounce house set up, a water table on the deck, and a swing the kids could sit on, but Ethan couldn't seem to find the focus to stay on any of them for very long. He needed to play with the sliding doors on the deck.

Back when we were doing Birth to 3, one of the first things they taught Ethan when we were working on short phrases was "I want __." Milk. Cheerios. Swing. Whatever. I find it curious that Ethan has upped the ante a bit here. Never mind this "I want" thing. He needs it.

I was going to write this long post about my frustration with Ethan's re-invigorated interest in doors and windows (not so much because he's into them again, but because of what it represents -- he's off. Something is askew, sensory-wise, and he's out of focus and a little stressed and scattered right now and I don't know what triggered it or exactly how help him). I was going to, but honestly, I'm tired, and truthfully, sometimes I need to take a break from dissecting life (my old blog, I just remembered, was called Life Dissected).

So I will just say this. No, I haven't figured out why he is back to the doors and drawers and windows rather than toys, or how to get him out of the habit, or if I should let him do it and try to stop him, or redirect him. But in spite of all that, my boy spoke a 10-word sentence to me the other day. He went up to a kid on the playground and said, "Hi? What's your name?" He asked me to crawl into the tunnel and play with him. He knows how to spell his name and his sister's name.

In those Birth to 3 days, whenever Ethan couldn't do something and was getting frustrated, he would fiddle and fiddle with it, and grunt and cry, but he'd just about never try to get anyone's attention. He'd just keep working at it, and sometimes just give up and maybe throw it aside or cry. I remember Jessica would work with him, prompting. "Ethan? Say 'I need...'" hoping he'd say "help." And then just "I...." and would wait for him to fill it in. Eventually he would, but after a year of therapy, he'd still rarely ask completely unprompted.

Such a simple thing. How quickly I forget.

Now he's shouting it from the rooftops. "I need my window opened!" when we get in the car and it's too hot. "I need my shoe on!" when his shoe falls off. And, of course, "I NEED the doors!"

I don't know why he needs them. I wish he didn't. But I'm happy he can tell me.

Friday, May 13, 2011


Mother’s Day.

We were with my parents, which doesn’t happen nearly as often as in the past. Everyone is so busy now. We’re all off at different churches and living in different towns. But on this day, we hung out, and decided to go to a really good nearby Thai restaurant.

The meal wasn’t the most relaxing we’ve ever had (Ethan has been in a hyper phase as of late) but we made it through. Providence was seeing that the person sitting closest to us was a para-professional from Ethan’s school and her significant other. I felt the relief bubble over. No snide looks would be coming our way if Ethan didn’t feel like sitting calmly.

Which he didn’t. We made it through with lots of drinks and a lollipop reward, but there was much crawling under the table and trying to lie down in the booth and almost spilling his drink about 10 times, and the two or three trips to the bathroom. Sometimes of late when he pulls these annoying behaviors or more forceful tantrums than he used to I have no way of knowing how much is just Ethan being a kid, or him living out his 2's as a three-year-old, or if autism is exacerbating any of it. And often Dan and I aren't quite sure how to discipline. Nothing really seems to work, or maybe we're just not consistent? Lately, I've just wanted to throw my arms up in the air.

"What would you do?" I asked my mom. I'm always asking, searching, questioning myself and if I could be doing it better. Don't we all, as moms?

"You're doing a fine job," she reassured me. "Don't be so hard on yourself."

After we decided to go out for ice cream at this little seasonal place attached to a farm. As we sat outside on benches eating our cones, Ethan decided he didn't want to sit still. He preferred to inch himself away from us ever-so-slowly once he'd finished his shake, and run around the parking lot, or try to sneak in the back door of the ice cream "shack."

"You see what I mean?" I asked my mom. "I never know when to let it go, or make him sit, or whether I'm overreacting or not reacting enough." I was kind of rambling on, but I could tell my mom wasn't completely listening. She was watching Ethan, and then turned back to me, her eyes welling up.

"Don't you see?" she said. "Don't you see, he's going to be okay?"

Rain was coming. You could smell the showers in the spring air. Other families were out in their Sunday best that afternoon, crunching across the gravel, laughing, breathing in the afternoon and time with family.

"He's going to be all right," she said. "I don't mean fine like a typical kid. But he'll be okay."

It's interesting, having a mom who like me has a son with autism, albeit a much more severe form of autism. I knew my mother was not promising me a life free of heartache. I knew she was not guaranteeing Ethan would overcome every aspect of his autism. But her own experiences with Andy have helped her see Ethan with a different set of eyes.

When I see my son who is frazzled and hyper of late, bursting with tantrums and more inflexible than I've ever witnessed, she sees the grandson who decided he wanted to be potty trained and who goes to bed peacefully, without destroying his room.

When I see my boy who keeps repeating things and cannot yet answer "Why" questions, she remembers her own boy who did not utter more than a word or two until he was 9 years old.

When I see my child who has trouble playing with toys could easily become addicted to playing computer games, she sees her son who still cannot use a computer...or write his name on his own...or recognize letters: and he is 29 years old.

Sometimes I see the problems, the worries, the stresses. My mom looks at Ethan and sees potential. I think in that moment she was not trying to invalidate all of my concerns. She was just quietly asking me to take a little step back, and see.

The cool drops pelted our foreheads just as we were climbing into the car. We drove home as gray twilight began to take over, but the downpour never came.

Monday, May 9, 2011

Living Our Best Story

Ethan has this new habit that cracks me up. I think it's from the Thomas the Train books and DVDs. Sometimes he doesn't live the day or describe something to me as much as he narrates it, kind of like the narrator on the DVDs, the one that switches voice to match each engine ("I am the fastest engine in Sodor!" said Gordon. "No you're not!" exclaimed Thomas.)

It started that way, playing with trains. Ethan will play almost anything IF I play with him. Left alone to his table, he smashes things and then walks away. It's the weirdest thing. So we were playing one day and I noticed he was narrating. "The bridge is broken!" I'd say in a certain train's voice, and he'd fill in, "Said Toby." "We must fix the railroad!" I would shout, and Ethan would add, "Said Sir Topham Hatt."

This method works quite well for Ethan, who has always had a habit of repeating the words someone spoke rather than telling me exactly what happened. If he wants to go back to Grammie's house, for example, he won't ask, "Can we go back to Grammie's soon?" Instead he'll say, "We'll go back to Grammie's soon," repeating my exact words and reassuring tone. Or when he's recalling something that happened, he won't tell me: he'll repeat the critical moment. "Nate! Don't throw your lunch box!" he said loudly the other day, and I will bet you $100 Nate in his preschool class did indeed throw his lunch box and that was how Mrs. Vincenti corrected him.

Now, with the new narration thing going, it's '"Nate! Don't throw your lunch box!' said Mrs. Vincenti." Or he'll say, '"Don't open the windows!' said Mamma."

I find this all quite funny, because I have always been one of those people who felt as if I was living in a novel or a movie. Meaning, I'd kind of narrate to myself. There'd be a big scene, like the school dance in which I really wanted to dance with Jamie and he didn't ask me and I sat alone on the bleachers listening to Tiffany sing some depressing song (really dating myself here), and I suddenly would feel as if the cameras were panning out and I could almost hear the narrator commenting on the pathetic sight below.

I don't know, maybe I was reading too many young adult novels at the time, but the thing is I've carried that habit with me. I remember writing a poem after 9/11, my last explosion of poetry until recently, and specifically I wrote about how I felt as if I was outside of myself, watching this happen to all of us, watching the way we as Americans reacted, and feeling as if I was viewing scenes from a movie.

About a year ago I came across a book by Donald Miller called "A Million Miles in a Thousand Years." Donald Miller is what I'd call an atypical Christian author. He probably would make some Christians angry, particularly those who are more fundamentalist-leaning. I love his stuff, even if I don't always agree with him.

In the book he talked about being in the process of having a movie filmed based on his life. Only, when they got into the real nuts and bolts of writing the story, the guys working on it realized it needed more. His life was found lacking, needing some "sprucing up," some more excitement to the plot. This was a profound revelation to him. He began to wonder how many of us are living our best life.

Sometimes what we think is the good life is really, in fact, not so much. "People don't pay to go see a movie about someone who saved up for years to buy a Volvo, and then finally got it," he writes. No, people want to see movies about courage and risk, conflict and resolution, about someone who faced adversity and overcame it. We crave that when it's the movies...but our own lives are often so hollow; lacking depth; focused on obtaining comfort.

Live your best story, Miller writes.

When Ethan starts up with his narration of daily events, I'm reminded that I am living a story. Sometimes I need to remember it's not a sentimental flick like those made-for-TV movies I used to watch when I was a teenager. It's really God's story. I want to do Him justice. Reflect His love. That is the best story.

Thursday, May 5, 2011

In the Name of God

I'll call her "Jane."

Back at my old church, which Dan and I left 10 years ago for myriad reasons, we knew Jane and other members of her family. Jane was in her fifties, unmarried, rather socially awkward, mostly because she came across as very lonely and needy sometimes; someone who would hug too hard, breathe too much on you, quote too many scriptures in a well-intended but over-the-top way.

I had a soft spot for her. I could see the way people shied away from her, and I understood. Sometimes she was just too much. Once we left that church, I kept in touch with Jane a bit via letters and cards, and over time I forgot how...intense she could be. How very eager to spout a spiritual reason or solution for even the smallest of issues -- that is, until she found me on Facebook.

The other day on Facebook I posted a picture of Andy holding Ethan when he was a baby. And right away Jane asked if that was my son. She of course knew Andy back in the day, since my entire family had gone to that church. I told her yes and briefly mentioned Ethan also had autism, albeit a milder form. I then said he was doing well and in preschool and went on to talk about Anna, too.

I shouldn't have been surprised at the response I got from Jane, mostly in capital letters, of course. She mentioned how sorry she was about Ethan having autism. And then: WE NEED TO PRAY AND BIND THE SPIRIT THAT'S BEHIND THIS...AND BREAK ITS STRONGHOLD AT THE ROOT. IN THE POWER AND NAME OF JESUS! AMEN AND AMEN!

I have to say this. I am a Christian and I do believe in satan. I believe there is evil in this world and that things like cancer and yes, autism do not originate from God. I believe in prayer. I believe we need to take a stand against evil...and that comes in the form of the world, our own sin, and satan.


Well, first off, and I know I sound nit-picky here. It has been a long week that has included Ethan getting stitches and Anna getting a cast on her arm, not enough sleep, and too much whining and overall bratty behavior in our house. So maybe I'm even more thin-skinned than usual.

The whole "I'm sorry" thing. It's weird...when close friends, or especially someone else who has a child with autism, tell me they're sorry about Ethan's diagnosis, that's one thing. When it's others, I can't explain it, but something just seems off. I didn't lose my son. He didn't die. So are they saying, "I'm sorry you didn't get the child you wanted or expected?" Maybe. Or maybe they are acknowledging, "I'm sorry this is going to be hard for you." I don't know, but what I hear when it comes from someone I'm not close to is, "I'm sorry your son is who he is." And when I read that and at the same time looked over at my big brown-eyed son who was giving me a huge smile while playing some goofy game with his sister, it was hard to feel sorry at that moment. Something about feeling sorry felt so wrong.

I've mentioned before: to me it's easier to say you are sorry for something like a person's cancer diagnosis than an autism diagnosis. Cancer is this foreign thing that's intruded, invaded a body, while autism is something that's sort of ever-present and woven throughout one's entire make-up. There are "good" and "bad" autism traits, and extracting some would leave the person entirely different than who they are.

But really it's this whole "stronghold" thing and autism that gets me. I realize there is some spiritual component to the bad things that happen in this world. But Jane's words seemed to skirt close to the concept of saying autism has a spiritual root.

This brings to mind all sorts of things: stories I've heard about people insisting on "casting the demon of autism" out of people; teachings on curses being carried down, which to me deepened my feeling that my family was under some sort of crushing curse; a long-ago church's claim that Andy's autism was punishment for my parents not "following God's will."

Autism in charismatic circles in sometimes viewed in ways you would not believe.

I've had to struggle a lot with this in the years, reconciling autism with my beliefs about God, healing, sin, satan, and God's perfect vs. permissive will. When I hear someone talking about how autism is a stronghold that's attacking my family, I find comfort in the simple words of a Christian counselor. I'd gone to her to talk about all of this, to get input on how to live out my faith when I'd seen so much Christian flakiness while still trying to trust in a God who wasn't always safe, but always good.

"There's this little voice that wants to tell me this happened to Ethan because I'm cursed, because my family's cursed," I told her. You would think this too, if you'd heard talk about generational curses and God punishing people who were out of His will, for a good portion of your life.

"It's not a curse, it's genetics," she said simply.

The whole vaccine debate aside here, those were words I desperately needed to hear. Sometimes in the Christian world, we just need some facts. Not everything needs to be bound and loosed. We live in a dark and fallen world, and because of that, things happen.

God always could heal but sometimes chooses not to, and it's not always because someone didn't have enough faith, or someone was not obedient. Sometimes He has other plans. And sometimes, maybe that miracle is still on its way.

This is what I would say to Jane, if I could. If I thought she would listen. If I thought she would hear me.

Monday, May 2, 2011

The Best Kind of Admonishment

We were in the ER, and all was good.

Ethan had survived two nurses, a resident and a doctor poking at the cut above his eye that was just big enough to require several stitches. He seemed to be thoroughly enjoying himself, chomping on Goldfish crackers and gazing at all of the equipment in the room. He later would go into hysterics for five minutes while the doctor actually put the stitches in, but overall, he enjoyed his adventure that got him out of going to bed on time by, when all was said and done, about four hours.

On the television mounted on the wall above us, NBC News was telling us Osama Bin Laden was dead. I'd given up thinking I would ever hear those words.

When a woman came in with a computer to officially register us, Ethan listened with acute interest as I answered all the questions he is learning about in school. Address. Phone number. Birth date. When she was gone, Ethan didn't like the silence.

"Mom? TALK!" he commanded, in the most serious of tones.

He did this to me again at lunch today, when we were silently munching for a few moments.

Mom, talk. I don't feel like hanging out in my own little world right now. I want you there with me.

By all means, little guy. You can push me around with those words anytime.