Saturday, March 31, 2012


I've been attending a Bible study for moms lately that's offered at a nearby church every other week. I really enjoy it, as the session is a nice mix between mom talk and spiritual talk.

A few weeks ago the speaker on the DVD message we always watch said something that encouraged me although the statement in itself isn't really that encouraging. She said that studies have found that people working jobs with projects that have a set beginning and clear ending are usually more satisfied than people in more open-ended positions with projects or issues that never really resolve.

This is another reason why, she was saying, we as moms can feel especially drained. There are always more dishes to be done and more toys to be cleaned up. Our kids are very long works in progress. It's not as if we discipline them and - poof! - that issue never comes up again. Parenting can be a very tedious process.

I think a number of the ladies there that day kind of breathed out a sigh of relief with that one. The whole thing made so much sense. Parenting is an 18-year (Oh, who am I kidding? It's a lifetime) job. Of course it can be draining to do and do and do and not always see the results of anything you do for a very long time...or to do and do, only to have it all quickly undone.

The other day we were visiting with relatives we don't see very often and after awhile the kids decided if they had a captive and adoring audience, they were going to milk it for all it was worth. Or, at least Anna decided that, and Ethan followed along. The last 20 minutes of our stay included hitting, throwing of objects, screeching, tattling, and of course, crying.

By the ride home, I was DONE. The kids asked for their XM radio station and I purposely turned the dial to my favorite stations. Sometimes my selfish side very necessarily rises up and I tire of my universe constantly rotating around my children. Sometimes I just want 20 minutes to listen to a song I like. Sometimes I want to know that the words and consequences we speak and give to our children are making a difference.

After the kids had gone to bed, I calmed down a bit. I wandered over to the trays of seeds we have balancing precariously on wobbly TV trays in the dining room. We planted them last week; mostly herbs. I told the kids not to expect anything to sprout up for at least 10 days.

Then I saw. I had to lean over and peer very closely to see them: the first two shoots, popping up above the soil.

One for Anna; one for Ethan.

I remembered again the potential that is always there even when we can't see the work happening.

I remembered how patient God is with me, an imperfect vessel.

I remembered that tomorrow would be another day.

And then I let it go.

"But you are a forgiving God, gracious and compassionate,
slow to anger and abounding in love." -- Nehemiah 9:17

Wednesday, March 28, 2012

Flying Frogs and Progress Reports

Today was swallowed up by reports and evaluations.

This morning we were back in the little room down the street from Connecticut Children's again: this time for a speech re-evaluation to qualify Ethan for a social skills class.

Even Ethan knows the drill at this point. I feel a little bad about that. At one point during the session, he literally picked up the picture he was supposed to be studying, and asked Jen, the speech pathologist, "So? What do YOU think this is?"

He kept turning around, too, giving me little smiles and looking for encouragement. "I'm doing a really good job," he announced several times, fishing for compliments.

This time Jen, the same speech pathologist who helped diagnose him and who saw Ethan for speech two years ago, administered the ADOS test to gauge his "social/pragmatic skills."

She is a wonderful practitioner, and I had just one qualm with one of the tests. She took out this picture book (no words to the story) and began grilling him on what was happening on each of the pages:

I remember seeing this book in the library when I used to work there. It's award-winning, but I thought it was weird. I don't even think I ever flipped through the whole thing, but it's about frogs flying, or something. To quote a review I found online, the book is “Sort of science fiction, sort of National Enquirer, sort of 1940s-style detective story, sort of 1960s-style comic book. Totally fun." Here's just one of the fun-filled pages Ethan was asked to describe:

Why in the world would someone use this whimsical book, so completely disengaged from reality and concrete concepts, to gauge a child with autism's skills at telling a story? I had trouble figuring out the story looking at it as a 20-year-old. It's just bizarre.

That aside, our 1 1/2 hour appointment told us things that I already knew. It's a little frustrating but much more gratifying to hear a professional say them.

Ethan is very smart.
He's come a long way, particularly with language.
He has some big gaps, most of which relate to critical thinking, sequencing (there's that word again) and something called "central coherence" (big picture thinking). It's hard for him to re-tell a story, in the right sequence; to understand why certain things happened, and to recognize the important parts of the story and how it all fits together.

These are issues I'm sure the staff at school is aware of, but they don't work as much on them as I think Ethan needs. I think I understand why. As Jen plainly stated: "The school sees that he knows most of the things a four-year-old needs to know. What we have to understand is that down the road, more and more as school goes on and he gets older, he's going to need to employ his critical thinking skills. It's important to work on that now so we can head off some of those challenges he may have down the road."

AMEN to that one.

And so: he is probably going to start a social skills group in the summer to work on sustaining conversation, play, interaction, all of that. And she recommended speech if he wasn't having other services in the summer, to work on things like understanding how the parts make up a whole, on how the little pieces fit together, on what motivates people and characters in books, about taking another person's perspective. This is big. These are core issues in autism world. I am simultaneously a little tired to always have something to be working on, but happy to have a plan. There is nothing worse than feeling something is missing but not being able to have anyone confirm your suspicions. I'm thankful that many, many of Ethan's teachers and therapists over the past few years have been receptive and proactive. It means so much to be heard -- and in the long run, will mean so much to Ethan, even if now it meant sitting through yet another test.

After school I ran into Ethan's physical therapist, Mrs. B. My heart sank at first. Last week he had acted like a little hellion with her, but today she was all smiles and reported that the Ethan she knew and loved was "back." I asked her something I'd been meaning to ask for awhile: if she thought next year when Ethan was 5 if he'd be able to do T-ball and soccer in town. I know there are challenger leagues for kids with special needs, but I wondered if she thought he could handle the environment with typical kids.

"He's nearly ready now," she said. She loved the idea. She thinks he can do it.

Tonight was the parent-teacher conference. Ethan was "calendar helper" at school today. His progress report looks great; it's the social goals on his IEP that continue to creep slowly but surely towards improvement. The speech therapist called him "Asperger-ish."

All in all, it was an informative, exhausting, rewarding day. I will go to bed remembering the best part, which was the song Ethan made up out of the blue this morning while getting dressed, something along the lines of:

Mom, I love you
I really love you

Nothing can be better than that.

Tuesday, March 27, 2012

Train Table, Revisited

The infamous train table, 2010

"Mom, are we going to put the train tracks back together again?"

Ethan's question a few days ago threw me for a loop. I've written about our foibles with the train table. For the past few months it has sat, untouched, with broken tracks heaped all over the place. After the peeing incident, I'd basically called the thing a loss and was just trying to figure out how to get rid of it.

This afternoon, we were up in his room. Ethan had gotten out of school early. The jumbled tracks stared at me again.

"Eth, do you want to fix the tracks?" I asked gingerly.

"Yeah!" he replied.

I looked at the train table and tried to see through my son's eyes.

"Do you want all this stuff on it?" I asked him, referring to Cranky the Crane, the helicopter landing pad/hospital, the water tower, and various other Island of Sodor accoutrements. I realized I had never asked him. I had just forced on him my idea of what the perfect train table set-up would be.

The extras all went on the floor. I focused on putting together one simple track. Ethan helped. I watched the way he tried to fit the tracks together, understanding the basics but not getting, at first, that you could flip the curving tracks over and they would curve in the opposite direction. I thought about how frustrating and how much more time consuming would be to put tracks together without understanding that.

We had one circular route done, but Ethan wanted more.

"The rest of the tracks are downstairs. Do you want me to get them?" I asked.


I bounced down the stairs, full of light, a bit giddy. He's playing with the trains...he's playing with the trains...

We built more tracks. When we ran into an impossible connection, Ethan wrote it off as a dead end (oh, how he loves dead ends) and started a new way. Two more times I went downstairs to get more tracks. We played like this for a half-hour, until we had to pick up Anna from school.

I have no idea if Ethan is going to play with the train table tomorrow. He may go back to his "human tornado" routine and smash the whole thing to smitherines. He may let what we've built sit there frozen in time for another few months.

But today, we played. And later that day I heard what I described to Dan as "one of the most beautiful sounds in the world" -- the jangling and clanging and bumping and beeping of toys as Ethan dug in the toy box, looking, and pulled out several different toys to play with, one by one.

And just like that, a rather blah, raw, windy day turned into something special.

"With God, all things are possible..." -- Matthew 19:26

Saturday, March 24, 2012

Lessons from Running

So, I've started running.

For those around me, namely my dear friend Suzanne who is coaching me through the process, it's not a pretty sight. I'm not a naturally athletic person at all. The only team sport I ever played was softball in fifth grade (our team's name: The North Atlantic Termites). I breathe through my mouth and get red, sweaty, frizzy-haired and wild-eyed very quickly. My grandfather back in the day was known as "the guy who never missed a day of running for 20 years straight." I apparently inherited few of his genes.

However, about a month ago I decided I needed to get into, if not shape, at least better shape. I just love food too much to not exercise and burn some of it off. Thankfully, we've had some incredibly gorgeous weather around here for February and March, which has made it a lot easier to get motivated. Normally the theme of the day this time of year would be sleet and mud, but instead people have been wearing shorts and the daffodils have been in bloom for a couple of weeks. So Suzanne, who lives in town, and I have headed out to the high school track several times a week, and I have learned quickly what I really already knew:

Running is really, really hard.

Well, not the running part. I suppose it would be the running for any sort of significant distance part. I get stitches in my side. I get itchy. I run out of breath quickly.

Thankfully, I learned right away that you don't start running just running. You walk and then you run a little and then walk some more and then run some more. Every time you try to walk a little less and run a little more. Slowly, your endurance builds.

This morning I decided to go out running for the first time on my own. The fact that I woke up and was actually inspired to do this is a miracle in itself. The fact that I actually did it and enjoyed myself is as well.

As I ran, I couldn't help but thinking that this running thing illustrates a lot about our lives in general. This analogy is certainly nothing new, but I guess in some ways it's new to me. As my sneakers pounded on the pavement the verse kept running through my head: "...Let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us..."

Running is about endurance. Life is about endurance. But how do we endure to accomplish the purpose God has for each of us? Running with the sunrise, I saw that:

1. We have to take it one step at a time, while periodically keeping our "eyes on the prize."
If you're only looking at your destination, you'll be discouraged at how far you have to go. So we need to primarily set our sights on the tasks in front of us (I guess with running, this would be the next landmark rather than the finish line). Our race is really a compilation of many small milestones. However, if we only keep our eyes on our "feet," or present situation, we'll lose our inspiration. We have to glance up every once in awhile and remember what we're aiming for.

2. Sometimes you don't realize how far you've come until you turn around and look back.
I still can't run very far AT ALL. I'll be happy when I can run even a mile straight! This is a bit disheartening, although I've only been running for a couple of weeks. However, today I turned around after I'd ran and couldn't even see the place where I'd started from. The journey looked so much longer and felt so much grander after I'd accomplished it. How often in life do we go through something, and only after we've come out on the other side are we in awe that we were able to do it?

3. You have to have the proper tools.
Everyone talks about having the right running shoes, and I know now that they're right. My cheap sneakers are just not cutting it (thankfully new running shoes from eBay or on their way!). I've got blisters. My feet are taking a pounding. They will still take a pounding once I get the new shoes, but it will provide some relief. I also needed some workout clothes (running with sweatpants that are literally FALLING DOWN is just not the way to go). These things seem so simple yet can make a big difference. And then there's just the fact of knowing the right way to run. You can have the best intentions and start gung-ho only to fail miserably because you didn't, say, stretch enough first or pace yourself, or you tried to do too much too soon.

4. The journey is a lot easier when you're not on your own.
You know, I consider myself an introvert (although not an extreme one), yet even I get bored exercising alone. I tend to count my steps (Ethan would appreciate this) for lack of anything better to do. But when I have someone along, the time passes much more quickly. I'm not just looking at the next marker and wondering how long it will take me to get there. I've realized more and more lately that we can't do life alone. I don't just mean with or without a spouse or kids. I'm saying we need a depth of relationship; all kinds of relationship. We need people we're mentoring and people we're learning from. We need people at the same life stage we can bounce thoughts and ideas off of. We need friends who share our beliefs and who can encourage us. We can't just live in the bubble of home, as is so easy to do, particularly if you are an at-home mom. Even those of us who are quieter and more reserved were meant to share our lives on different levels with different types of people.

I hurt all over.

Back out tomorrow at 6 a.m.

Thursday, March 22, 2012

More Thoughts on Play

Anna immersed in play, at about age 2 1/2

"Moooom? I'm boooored!"

That phrase seems to be some sort of rite of passage, when it comes to both being a parent and being a kid. What parent hasn't heard her child say the words? What parent didn't utter the same words, eons ago?

Anna went through an "I'm bored" phase awhile back, which I viewed as close to ridiculous. The girl has tons of toys and trinkets and books and games and craft supplies oozing out of boxes and bins all over the house. She also has an incredible imagination. After awhile I'd get fed up and tell her, "You're staying out of the kitchen (these issues always seemed to come up around dinnertime) for a half-hour, and you're going to come up with something to do."

After about five minutes of obligatory whining, suddenly it would grow very quiet, and I'd know: Anna was creating. Sure enough, within another few minutes she'd come scampering to the doorway with some sort of house for her My Little Ponies she'd fashioned, or be concocting some kind of food for her stuffed animals using beads and sparkles, or gathering supplies for a camping expedition to take place under blanket tents. (As I write this, incidentally, she is building homes for her Lalaloopsy dolls out of cardboard boxes.)

I always knew Anna could play, she just needed to put some effort into getting started when she was feeling lazy.

I don't think we realize how much goes in to play. I know there are things I never considered until the last few years. Play is more than just coming up with an idea. It's also knowing how to execute the idea. It's breaking the idea into very small parts and carrying them out successfully, in the proper order. Apparently the fancy words to describe this in the developmental pediatrics world would be "motor planning" and "sequencing."

If I insisted Ethan play on his own for 30 minutes (with no electronic devices or puzzles!), this is what might happen. He would first have to come up with an idea. This sometimes does not come easily. But even if he did come up with an idea, to truly play, he would need to add to the idea, to expand the idea. There are various reasons why kids on the spectrum do things like pick up toys and simply drop them or throw them or spin them. This play thing is not as easy as it sounds.

I witnessed this all play out (no pun intended) this afternoon. Since the weather was unseasonably warm water play seemed like a good option. I filled up a bucket for Ethan on the back deck along with various other small bowls, water cans, squirt guns, spray bottles and more and told him to go for it. This is what I saw:

He tried to pick up the huge heavy bucket to dump water into smaller items before realizing he could fill the smaller items with water from the big bucket.

He attempted to squirt the squirt bottle but had it the wrong way and wasn't grasping it right, so he couldn't get it to shoot out any water.

After I gave him a plastic slide from an old bath toy and some toy people to see if he wanted to play "waterslide" (we just got back from a trip to an indoor waterpark), he lay the slide flat on the deck, not knowing how to balance it on anything to tilt it into a position in which a toy person could race down it.

When trying to fill up small cups of water in the small bucket, he didn't realize the best way was to tilt each slightly to the side. Instead he put them in straight down, and didn't push them far enough down for much water to flow over the sides and into the cup. This meant every time he attempted this, he got just a few drops of water in his cup.

He then moved over to the sandbox to make sandcastles. Only he kept forgetting to fill up the bucket all the way or to really pound down the sand, so his castles kept collapsing into chaos as soon as he'd turn over the bucket.

How can I blame the boy for finding solace in buttons and switches? Just writing this makes my head ache. Yet these are exactly the types of challenges many kids with special needs have when they are asked to "go play." I imagine it would be like someone telling me to assemble a chair with no directions. To say I'm not handy is an extreme understatement. I'd first stare at all the pieces and wonder what to do with them. Once I finally figured out a piece or two that went together I'd fumble around with the screwdriver and undoubtedly strip a screw...or get a few parts slip-shoddingly together only to see them fall apart with the slightest bit of pressure. I certainly wouldn't find the whole experience to be very fun.

I'm no expert, but something in me tells me we're going about things the wrong way when we try to "teach" kids play. Ethan's teachers talk a lot about modeling play schemes. They put the cow in the toy barn and have it say moo. Then they hope Ethan will copy and do the same. Okay, he can handle that. But where does that get him when no one is around? He's not generating ideas. He's not problem-solving. He's simply imitating.

That's like someone standing with me while I'm assembling the chair, telling me exactly what to do and how to do it. I might actually put the thing together, but would I know how to put it together? Would I be able to do it on my own, or assemble a different object other than a chair? To me it would seem more worthwhile to first be sure I knew how to properly use the hammer, the screwdriver, the drill. To review how the pieces work and fit together. To understand the why and not just the what. And then with time and practice, I'd begin to understand how to assemble it on my own.

This is why I don't care for teachers exclusively grasping at any old typical four-year-old play skill and offering it up for Ethan to imitate, because he's smart and catches on quickly and because this will help him to fit in socially. We must also be sure to go back and work on those skills that he skipped over or never refined -- skills like exploring...manipulating... testing...discovering...trying and failing and trying again a different way: even if that means dumping water and digging in sand like a two-year-old, when the other four-year-olds are playing superheroes.

I guess that's what home is all about. That's why we're here. Which is why Ethan ended his play today blissfully happy, covered with sand and water, brushing off his hands with satisfaction after finally crafting a sand castle that no one had built for him first.

Tuesday, March 20, 2012

The Hardest Easiest Question

“How old is he?”

It’s a relatively straightforward question, with a not-so-simple answer.

How old is Ethan? Well, he’s four, of course. Four and a quarter, to be exact – except he’s not.

He’s five, as I watch him write all of his letters, and count to 40 and beyond, do simple addition or spell words.

He’s two, when he throws himself on the ground and tantrums when I tell him to come inside, or when I make him peel the banana rather than eat cut up pieces, or when he loses a foot race to the car.

He’s three when he’s in OT, not quite grasping his pencil the right way, when he’s a bit behind in his ability to manipulate and grasp.

He’s five when he beats Angry Birds on Dan’s phone.

He’s two (or younger) when he gravitates toward the baby toys at playgroup, looking for any object with cause and effect, anything he can manipulate easily for instant reward, rather than the toy farm or trucks the other kids are playing with.

He’s three when he plays alongside other kids more often than playing with them, able to tolerate their presence but not that interested in involving them.

He’s two when he starts screaming and hitting the child who won’t give him a turn.

He's five when on a different day and in a different mood he's chasing the same child (of kindergarten age) on the playground or playing hide and seek.

He's four every day, in a class of mostly four-year-olds. Yet in some ways four is less than an age and more of an average.

I think all kids have a little of this. There aren't many who follow those milestone books to a "T." With autism, the developmental extremes are just more, well, extreme.

This is what is hard to convey sometimes, when my son looks five, is four, speaks fairly well, but sometimes throws fits or plays like a toddler. I try to remember this, when I see a child for whom everything is not quite adding up. There is, I know, nearly always a story behind the story.

Sunday, March 18, 2012

Book Stories

I am convinced that the books on a person's shelves can tell you a lot about that person.

I was thinking this the other day, while at my parents' house feeding their cats while they were away. I was wondering how it is that my mom and dad, with whom I share pretty similar spiritual beliefs, could have such vastly different books on their shelves than the ones on my own.

I am a huge book-lover. As a child I was what the teachers would call "a voracious reader." I used to go over my friend Brie's house (she also a bookworm) and we'd spend hours in her room, not speaking, devouring books. I'd check books out the library and read them while walking home. To this day Dan and I love nothing better than spending vacation days in cute bookstores. Anna is quickly following in our footsteps. Who knows? Ethan may not be far behind.

The books on my shelves reflect various stages of my life. There are the "so you want to be a writer" books...the travel collection...the classics I should have read in college that I stocked up on to get to, someday. There are my Red Sox books and photographic essays and yes, my September 11 collection and disaster phase (Night of the Grizzlies, the Worcester tornado, and so on). There are my Oprah's book club novels and other acclaimed current offerings, all of which seem so bleak to me that I have trouble digesting them. There are the Christian fiction books that irritate me due to their hokey-ness and sometimes, to be blunt, just plain bad writing.

Then there are the Christian non-fiction books I've bought in the last five years. These are the ones that give me pause. These are the ones that I hold up to my parents' book collection and have to laugh. My parents have many books by Glen Beck and Bill O'Reilly. They have numerous others on prayer, intercession, spiritual warfare, Israel, and the coming Armageddon. They are strong and sure of their specific path of their Christian walk and they prefer to dwell on battles, good and evil, justice.

My books? Well, here they are, my recent favorites; books I've devoured over the last several years that have had a lasting impact:

There is one notable book missing, and it's one of my favorites (I lent it to someone awhile back). It's called Your God is Too Safe: Rediscovering the Wonder of a God You Can't Control, by Mark Buchanan, a book that was life-changing and in part inspired this blog.

Two of the books that went straight to my heart are Choosing to See by Mary Beth Chapman, about her loss of a child, and Lessons Learned in the Dark by Jennifer Rothschild, about her loss of sight. Sometimes in our darkest moments we actually finally have our eyes opened and see.

The Shack blew my mind with its very unconventional view of God. Donald Miller's books challenge Christians to live and think in a way I'd not been challenged before. Patsy Clairmont talks about her very real struggles with fear and anxiety, something I could relate to whole-heartedly. Soul Survivor -- How My Faith Survived the Church...well, I guess the title says it all. Our Eyes Fixed on Jesus is written by brilliant man who has spoken at our church, Guy Chevreau, and really helped clear up some confusion I had about the lack of balance I feel some Christians have when it comes to satan and demons. And C.S. Lewis, well, is C.S. Lewis. Enough said.

My collection seems to represent more of a quest and of lots of questions, and I don't think that's a bad thing. I think we all have to find God for ourselves or our relationship with Him is flimsy and of little value. I don't think God minds questions but rather encourages them.

I think one theme that unites all the books is that they were written by people who think and feel deeply and who tire of Christian cliches with no meanings behind them, or of Christians who don't act much like Christians. I'd (obviously) highly recommend any of them, but more than that, I'd encourage those out there seeking a deeper relationship with God to seek God for yourself. Don't accept things sight-unseen, search the scriptures and ask God what He's saying to you. Ask for wisdom to walk the right path. And then don't look to the left or right. Just start walking.

I don't know how all of that came from me pondering over books, but there you have it, my sermon for the day. I make light of it but I'm serious. I've spent a lot of time trying to walk other people's spiritual walk, when I needed to set out on a journey of my own.

The books on our shelves tell our very human stories. And I wonder: what stories are your books telling?

Tuesday, March 13, 2012

Mudpies and Sand Castles

Anna and Ethan after water fun, last summer

The summer Ethan was 1 1/2, we were serenaded by a familiar sound most days we'd play outside.

Whaaap. Whaaap. Whaaap. Whaaap.

It was the sound of the sliding screen door on the back deck. Back and forth. Back and forth. This was what entertained Ethan. At that time he didn't possess the natural curiosity you see in most kids. He didn't spend much time dumping, tasting, squeezing, dropping, looking.

Whaaap. Whaaap. Whaaap. Whaaap.

The next year, when he was 2 1/2, I noticed Ethan had developed "routes" in our backyard. In his toddler mind, he appeared to have come up with a schedule that went something like this: Push around the toy lawn mower. Run up the basement storm door. Climb up the swing set. Repeat. When he tired of that, he'd head back to his safe spot, the screen door.

Last summer, it was the trike, the swings and the hose. Ethan still wanted little to do with the sandbox (of course Anna never liked the sandbox either, preferring to dig her little fingers into real dirt). He still sometimes wandered around almost anxious, as if he needed a play routine or schedule or he didn't quite know what to do with himself. Once in a blue moon, he'd head back to the door.

Now the warm weather is beginning to appear once again, and again I watch and plan and think as the kids venture outside. Anna is of course bursting with ideas, many of which involve dirt, leaves, sticks, and water. And Ethan? Well, like Dr. Milanese said, like the beach erosion analogy, again I see his play style continue to ever-so-slowly change and grow. He still has his routines. He still has his set list of things he likes to do. But these past few weeks I've caught him exploring. He's moved from one thing to another not unlike a two-year-old full of ideas. They're immature ideas and he doesn't quite carry them out for long, but I catch him experimenting. I catch him inventing, and I am in awe and filled with gratitude.

He created a game in which he puts a bowling pin on the bottom of the slide and attempts to slide down and knock it over. This seems so simple...yet it's not, when your child primarily only repeats games he's seen in the exact way he saw them.

He told me there was a monster in the garage.

I caught him smashing a brick over and over, trying to break it into pieces.

I chided him for whacking a stick on tree trunks, and he told me he was trying to cut them down.

He's dumping water and watching it sink into the ground, and shouting, "It melted!" to me, trying to understand.

I found him hauling sand in a bucket and dumping it on one of the swings. How could I complain? No one told him to do that. No one else came up with the idea. He just wanted to. When you've spent over two years suggesting play ideas to your sometimes-aimless son, this is big.

And then, then minutes later I caught him with his hands in sticky but firm, dark mud, pounding it into a bucket, then flipping it over to make a sand castle. "Look what I did!" he shouted excitedly. He kept tilting his creation to peer underneath. "What's under there?" he asked. He was totally filthy. But how could I possibly complain?

I now see that I haven't been crazy to keep introducing play ideas to Ethan. As with any child, the results of our efforts are rarely immediate. But the ideas sink down and in time some of them hold fast, waiting to reappear at an opportune time. the seeds soon to take root in that soil Ethan's been playing in, the ones that will settle in and start to sprout long before anyone can see the slightest hint of any change.

Sunday, March 11, 2012

Play Lessons

After having conversation #3 with some of Ethan's teachers in which they recounted nearly verbatim the same statements (He might just never be "into" pretend play. When he's older and playing video games, he'll have an easier time relating to other kids.) I was going to launch into a wordy tirade on how I disagree. But really, I like Ethan's teachers. I don't feel like being vindictive, because really, they just approach autism from a different mindset, from the ABA-driven, play must be taught and kids should be rewarded for playing rather than the Floortime-based, play is emotionally driven and kids will play in their own way, when they are motivated internally.

SO, I decided to share a few things I've learned over the last few years when it comes to making play attractive to Ethan. I should explain if I haven't before that Ethan has never been one of those kids on the spectrum who sits spinning wheels on cars or lining up toys. No. Generally he either prefers the toy is electronic, and then he will play it to his heart's content, or that it's a puzzle or board game, and he will play it to the puzzle or game's logical conclusion. However, if I use a few tips I've learned from a great website that's no longer updated (, playing other types of games with Ethan is successful. We haven't made too much progress on him playing independently this way, but, one thing at a time.

Tip #1: Make the game not to difficult, but not too easy.

Kids with autism tend to have a lower tolerance for frustration than typical kids. But at the same time you want to challenge them, so it's important to find middle ground. For Ethan this might mean, if we're going to do blocks together, something he gets easily frustrated by, we work on something simple rather than elaborate, because he's not that sophisticated at building and wants to quit quickly if the blocks keep tumbling down. But if we're going to do something else, let's say navigate a little obstacle course I've set up in the house, I'm going to make it complicated, because he's become pretty good at following directions and will enjoy the challenge rather than getting frustrated.

Tip #2: Keep the game familiar and slowly introduce unfamiliar elements.

Many kids on the spectrum prefer routine and have trouble coming up with something different than the same games they play over and over. Rather than introduce an entirely new or foreign game, it's a lot easier to take a familiar game and add a bit of a twist. We've done this with board games lately. Ethan could play board games endlessly, and there's nothing inherently wrong with them, except that they're not the best for introducing creativity and pretend play. So lately, we've been playing pretend with the Candy Land characters once the game is over. Maybe one cries because he lost or the other pretends to go for a walk along the board game path. Ethan gets the game he knows and loves with the one unfamiliar element -- making the characters talk and interact, which works so much better than say, me taking out a bunch of Fisher Price people he never plays with. There are countless variations on could do on this theme. Maybe a child wants only to push a train around a track -- build a bridge with blocks to make an obstruction and get the child talking about it. Or maybe you play chase all the time, and you decide to add some pretend play themes to the regular chase game (a monster is chasing you; you're running away from a tornado).

I've found Anna to be the best playmate in the world for Ethan -- and one reason is because she carries out these two tips without even trying to. This child who has an endless flow of creative ideas in her own play never ceases to amaze me when it comes to Ethan. Most of the games she invents with him involve a lot of repetition with a twist thrown in for good measure. A lot seem to include made-up songs with little words but some sort of exciting element.

They were just playing a game at the hotel we stayed at last night. Basically it involved each of them going over to the phone and taking turns pretending to talk to the person of their choice. The simplicity and repetition made it a hit with Ethan. He knew what to do (talk on the phone) and when (take turns with Anna). The only thing that changed was the person they were talking to, and sometimes, what they were pretending to talk about.

I really feel the cliche rings true -- children are the best teachers. Sometimes I think what would happen if you turned a bunch of motivated 6 or 7-year-olds loose with kids in the ABA room at Ethan's school. Who knows, really? Who knows...

One of the themes that seems to run through whatever we do is that if it's familiar, make it more challenging. Up the ante a little bit. But if it's new or if it's an area Ethan really struggles in, you can't make the play simple enough. I'd rather he start from the beginning and move slowly than skip over different developmental play stages just to get him up to what's appropriate for his age. Right now, at least at home, so what if we're working on some kind of play maybe a typical 2-year-old might engage in? What's the rush, really? As I read somewhere, when your child has grown and is 40 years old, did it really matter if he mastered a skill at age 2 or age 8?

This is why I am not ready to throw in the towel and send Ethan off to play video games. All kids can play in some way, shape or form. You will never convince me otherwise.

Wednesday, March 7, 2012

The White Van

All over town, I see the white van.

When I drive with Ethan to the railway station to see if a train is roaring by, I notice the white van parked. The backs of heads inside.

At the library coming out of story time, the van is there once again. The occupants aren't going into the library. They are just sitting there. Waiting.

Sometimes I see them boarding the van in the morning as I'm getting cash out of the ATM. I wonder where they are going. I wonder if they are truly going anywhere.

I've read somewhere that there are several group homes for mentally challenged people in our town. My guess is this van full of people I never clearly see is somehow related.

I know I don't know the whole story. I know I don't see the entire picture. I come across the van every few days for mere minutes. I have no idea what these people do with their time.

I also know that 50 years ago, these people I don't know might not have been sitting in a van, well-fed, clean, and safe, but in the dank corridors of an institution.

I try to picture Ethan 20 years from now, sitting in those cushioned seats. I can't. I don't know my son's future, but I know it is not that.

I see them at the railroad station, parked and waiting. I wonder what they are waiting for? I wonder if they are bored or amused, content or lonely.

I wonder about their stories, their families, those who have loved and who love them.

I wonder.

Sunday, March 4, 2012

The Music Class

Ethan loves music. He's the kind of kid who wakes up first thing in the morning and shouts "Hooray!" because that day is music class at school. For awhile he and another little girl were taking a class with a music therapist, but then the girl had other things to do, and honestly, the class is rather expensive, so we stopped. Since then I've been looking for another opportunity. In the midst of that I got an email about a free 2-week music class offered at a local community center for kids on the spectrum, and jumped at the opportunity.

The other day we walked in right at the stroke of 10am. The first thing I saw was a kid sitting on the floor playing "Temple Run" on his iPad. Ethan plopped down beside him and immediately began to watch.

The next thing I saw was an older girl refusing to enter the room, hands gripping the doorway, while her dad silently pleaded with her. I thought of Ethan and the playgroups, back when he was younger. The scene was achingly familiar. Another woman sat next to me, whispering fiercely to her little boy, who was about Ethan's age and not cooperating. "You WILL sit in the circle," she was saying. Yes, been there, I nodded inwardly.

Everyone got into a circle and the class started. "Miss Emily," another music therapist, was excellent and obviously used to working with kids on the spectrum. She wasn't phased at all by the limited back and forth conversation she was getting from her class participants. I spotted a little boy from Ethan's school and another family I knew from...somewhere. We sang some typical and no-so-typical kid's songs. Some kids got so excited they ran around the room, yelling, flapping their hands. One sweet, enthusiastic boy loved to repeat back whatever Miss Emily said. Many kids needed urging to share their names, even if they were say, 8 or 9.

As we sat and sang, the question presented itself.

Do we belong here?

This used to bother me more, the frustrating fact that when it comes to finding specific ways to get Ethan involved and interacting, he's sometimes a little too on-the-spectrum for a regular activity, but a little too typical for ASD-specific activities.

In a group of typical peers, unless they're trying hard or have adult assistance, there's a chance that Ethan will get lost in the dust. His reaction time is slower when it comes to communication (kids don't want to wait!). He sometimes doesn't know quite what to do or how to follow directions without help. He still often prefers (or gives the impression that he prefers) to be alone.

In an autism group Ethan is comfortable and communicative -- with the adults there. The other kids are obviously not usually making any kind of effort to talk to him. No one is modeling the skills he needs to learn and practice. Sometimes in fact they are making noises or body movements that Ethan finds distracting, a little frightening, or even tries to imitate once he gets home.

What to do? What to do?

I used to think there was only one answer, that it was all or nothing. But as I sat there that rainy Saturday morning, I realized I could also choose to see this as an opportunity. I could, rather than thinking "there's no place where my kid fits" (or even, "there's no place where I fit") I could see all I had before me.

We have the autism groups to spend time in that kind of place where it's okay to just be, where Ethan doesn't have to work so hard, where I can connect with other parents and where no one bats an eye if my kid doesn't say hi or look someone right in the eye.

But thanks to Ethan's milder form of autism, we are also blessed with the chance to expand his world and delve into typical get him around kids who will demonstrate how to play and interact, and where I can be around parents who I might also connect with -- and maybe through our story, help them to understand autism just a little bit better.

There is no one or the other. There is each, with its own blessing and opportunity and chance to make connections and learn and grow. If I really think about it, how can I complain about that?

Friday, March 2, 2012

Facing My Giant (Part 4)

After having kids, I think many moms naturally struggle with two big fears: 1) What if something happens to them? 2) What if something happens to me? I had faced the first-one head on. I felt a strength in me that I think was always there, but that I’d never known I’d had. I knew enough now to understand that, as the scripture says, “In this world you will have trouble, but take heart! I have overcome the world.” (John 16:33).

I had opened up my arms and let go of having complete control over everything that happened to me. But was I trusting? Was I resting? Eh. I was letting go, but was I entrusting my life and my kids and my circumstances to God, to anything, or just letting it all float out into the atmosphere in a Zen-kind of way?

Last month I went to the doctor for every woman’s favorite: the annual gyn exam. Is there anything worse than shivering in a paper gown in a box-size room while waiting to be manhandled? During the breast exam, the doctor suddenly “thought she felt something.” I couldn’t really figure out what she was talking about. That’s not to say I hadn’t come to the appointment battling my usual array of What if she finds this? What if she finds that? Old habits certainly do die hard.

The next thing I knew, I was being scheduled for a mammogram and ultrasound. A whole 10 days later. Plenty of time to think. Plenty of time to not sleep.

And so the patterns were back. I tossed; I turned; I wondered. I felt so tired of being tired. I felt so tired of feeling the fear. I thought I was beating this, I thought miserably. I was, in reality, but of course sometimes we can’t beat something until we face it. I’d already learned that with Ethan.

Our church had a ladies breakfast with a guest speaker last Saturday. She stood up and told us she felt she needed to share that God wanted us to be overcomers; that we have more in us than we think we do; that sometimes we need to not only give God more credit but ourselves more credit. God gives ordinary people the ability to do extraordinary things, she said. Afterward she asked if anyone wanted prayer and at least 15 women went up to her. When it was my turn I told her what was going on and she started praying and then stopped. “Hon,” she said. “It’s all about control. You’ve got to let it go.”

I thought I had. But as I thought and prayed I realized I hadn’t, completely. I had a long list of things I hadn’t let go of: Needing to know why. Having to understand why bad things happen to good people. Thinking my life HAD to go a certain way. Accepting God on my terms only.

This is the problem that goes back to the dawn of it all. Wasn’t the original sin about having to know all the answers, the temptation that led to eating from the Tree of Knowledge? Wasn’t Lucifer’s fall due to thinking he knew better than God?

In the book of Job, horrible things happen. Job cries out to God, and in the end God answers Job’s complaints. He comes through. But He doesn’t answer Job’s questions. He never answers the “why.”

I thought of Lucy again, the woman who died and left her two sons, and of all the wrongs I had held against God. And this time, I thought of another line from my favorite book series, The Chronicles of Narnia. Aslan, the Great Lion, says it often, when asked why something happened to a certain person, or what would have happened if they’d made a different choice. “That is their story,” he says.

I couldn’t keep holding on to Lucy’s story, or anyone else’s story. How could I hold God accountable for things I just didn't know? How could I claim only I knew the best version, the best ending for my own story or anyone else's? It pained me to accept, but my indignation was really nothing more than pride. I would never break free until I let go.

I was living my story. It was not a story free of pain or loss and I was never going to know how it turned out until I got to the end. In my head I kept hearing a song we'd listened to with the kids called “Jump Rope:”

Up Down
Up Down
Up Down
Up Down yeah
Cause it will get hard
Remember life’s like a jump rope

On Sunday, the day before my appointment, I found the song and turned the music up loud and began to dance around the living room with the kids. I looked like an idiot. I laughed. Sometimes, that's the best way to we can do battle – sometimes we just have to dance. Not because we have the solutions. Just because.

The song goes on:

I want to tell you that everything will be okay
That everything will eventually turn itself to gold
So keep pushing through it all
Don't follow, lead the way
Don't lose yourself or your hope
Cause life's like a jump rope

Twenty-four hours later, I was in the doctor’s office. If there were any circumstances under which I would have chosen to have my first-ever mammogram, these would not be it. The lady running the machine meant well. Saying “good luck” to me might not have been her best choice of words. Neither was the moment after as she was going through the films where she was quiet and then asked, “So, so said you didn’t feel anything over there?”

“No,” I answered.


Sitting back in a curtained room, I faced my humanity. Her statement set me preparing for the inevitable. This is it. This is the moment, that moment, the one I’ve always imagined. Someone might be coming to tell me I have cancer. I felt as if water were filling over my ears, like that long ago afternoon in my cousin’s pool. There was not an angelic peace that settled over me. I didn’t have my worries drift off and float away. Instead I felt a gritty resolve. I would do what I needed to do. I would take one step at a time. His grace is sufficient for me. I had no guarantees that I wouldn’t have to walk through the fire. But I was convinced like never before that He’d be there with me.

An ultrasound tech, not a doctor, appeared around the corner. We went in and did that. Then she was calling the doctor in just to double-check. In ten minutes both of them were telling me everything looked fine.

And for the first time in my life, after having a worry eliminated after a time of great stress, I didn’t feel buoyant and manically happy. Thankful, yes, immensely thankful. Sobered, because some woman that day may not have gotten the same news. Does it make any sense to say I felt more alive? I saw life and its inevitabilities for what they are. But I also saw more clearly than I ever had that when the time came, and only when the time came, I would be able to bear what came along. The grace would be imparted to me. I wouldn’t just be opening up and letting go. I would be walking into an embrace.

When I started this blog, I wrote up there on the masthead, “I’m opening up my arms and letting go of a life I can’t control. While the idea can be a little bit scary, I’m willing to hold my breath and take a leap, knowing I will not drown.” I read that now and think back to that day in the pool, and I realize that while that moment in the pool once taught me about not trusting, it also teaches me about faith. I stayed under the water a little too long. Things got uncomfortable. Fear gripped me. Then I burst out of the water, coughing and gasping but still breathing blessed air. I may have been scared and sputtering that day, but he didn’t let me drown. He didn’t let me drown.


So what have I learned? Does this mean I will never struggle with fear and anxiety again? I am not naïve. This was not the final battle but the turning point; the day fear stopped owning me.

I wrote all of this, at the risk of being way too transparent, in the hopes that it might be able to help someone out there who is also tormented with fear. This is only my story. These are only my lessons. But I feel compelled to share them.

Today I now know:

I can choose my thoughts and what I put into my mind -- and should be very watchful about what I put into my mind.

I can’t prevent fear from coming but can prevent myself from dwelling on it.

Fearing something will happen does not somehow magically prevent it from happening.

Being afraid is not a sign of weakness. Taking a step while still feeling afraid is actually a sign of courage.

And also:

I could never conquer fear until I let go of control.
I could never let go of control until I accepted I didn’t have to know every “why” question.
I couldn’t stop asking “why” questions until I realized my own pride.
I couldn’t see my own pride until I accepted the futility of my human efforts, and my absolute smallness in the grand scheme of things.

And last: Never forget to dance.

Facing My Giant (Part 3)

After getting married and having kids, every once in awhile I’d think of my brother’s situation and wonder: What would you do if you had a child with autism? With Anna I was able to keep this fear at bay very quickly. Girls are much less likely to have autism, and from the start she was a very social baby who was usually ahead on her milestones. When I got pregnant again and we decided not to find out what we were having, the little whisper was back. It was an undercurrent that ran through the pregnancy. What if something’s wrong with the baby? What if something’s wrong with the baby? At night I’d wake up in a sweat and beg and plead with God.

Then Ethan was born a few weeks early and had jaundice. He was a very sleepy baby who seemed less alert and less social from the start. The drumbeat pounding of my heart grew louder. On mornings when Anna was in preschool the thoughts would sometime consume me. When Ethan was four months old and the guy at the Target portrait studio couldn’t get him to smile I drove home crying and shaking. A month later I took him to the pediatrician. She couldn’t find anything off, but suggested I see someone for anxiety. No kidding, I thought ruefully.

I spent the next six months scouring the What to Expect milestones and trying to engage Ethan. Some days everything would be fine and other days the fear would creep back. When Ethan was about 15 months old I did a freelance video shoot at a home with a little girl who was several months younger than him. I watched the way she tried to reach out and communicate. She seemed so different than Ethan, and while I told myself it was because she was a girl, something didn’t sit right with me. Some nights I’d go into his room and watch him sleep and silently pray, tears slipping down my cheeks…Please God, please God

One April day when he was 16 months old, I knew. My mom was watching Ethan while I went out somewhere. I went to say goodbye and he just looked at me, or maybe through me. He didn’t care that I was leaving. He showed complete indifference, and I knew.

Ethan had autism.

I got on the highway and drove and began crying so hard I could barely breathe. I don’t know how I could see the road but somehow I drove for awhile and then pulled into a parking lot and called the Christian counselor I’d finally started seeing for my anxiety. A month later, Ethan was evaluated in the home by early intervention. It would take another four months to get an official diagnosis.

As we began Ethan’s therapy appointments and adjusted to a different way of life, two opposing thoughts kept churning around in my mind. One was the familiar Why? Why did the thing I fear come upon me, upon my son? But the other was more freeing: This happened, and we’re still here. We’re making it. This may sound rather silly, but then again, I think it’s not. There was a part of me that somehow had thought that by fearing something, I would actually prevent it from happening. Now I knew that not to be true.

A lot of what drives fear is really about control. People had told me all of my life to let go and let God take care of things, but I didn’t want to do that. I didn’t want to because I didn’t trust God. He allowed bad things to happen. In more recent years, it seemed every time I'd try to do that, something would remind me why I couldn't trust. Remember Lucy, my mind liked to whisper.

Lucy was a woman who’d gone to our church right around 9/11. She had two boys and had drifted far from God but had come back. She was getting her life back on track when she accidentally overdosed on a wrong combination of medications. She died the same day the plane crashed in New York City a few months after Sept. 11. Her boys went back to their father, a man who I’d heard was far from a model parent, and I added that to my list of things wrong with this world and reasons God is not good.

That mantra ran somewhere in the back of my mind, but as we adjusted to Ethan’s diagnosis something peculiar was happening. In the midst of a terrible time as we tried to readjust our vision of the way we thought life would be, I would have these amazing moments of just knowing God was with me. Maybe it would be an autism blogger I’d find online or a therapist who would come our way; an encouragement from a friend or a Bible verse that would just jump off the page as if it’d been written for me alone. I’d always heard these clichés about God carrying people through tough times, but they’d been nothing more than that, words. I hadn’t had the experience. Something inside me started to chip away. A wall was beginning to come down.

As we looked ahead at Ethan’s future, I truly knew that we had no way of knowing what was going to happen or where he’d be in one year, five years, or 20 years. No amount of worry was going to change that. I was going to have to learn to live life knowing some things were out of control. That’s when I started my blog. I knew right away what the title would be. Open Up and Let Go: to open my arms and let go of everything I’d held so close to me, thinking it was mine, when really it was not at all.

To be continued...

Thursday, March 1, 2012

Facing My Giant (Part 2)

If you came here looking for an update on Ethan or autism, I'm sorry to disappoint, but I had to take a little detour. I've been on an interesting journey the last few weeks. It's not one I necessarily would have chosen to write about, but I feel compelled to. Thanks for understanding.

As a teenager I spent a lot of time in my room watching TV movies that usually involved some sort of family tragedy: AIDS; homelessness; cancer. I filled my head again and again, tears streaming down my cheeks as I sat in the dark. I read Stephen King and then wondered why I had sweaty nightmares.

Then the hypochondria started. That’s the funny thing about fear. It takes different forms. Maybe for awhile you worry about the state of the world or someone getting killed in a car accident. Then you feel like you’ve gotten past that but suddenly you’re afraid something is going to happen to you. Sometimes you go through long stretches of not being fearful at all (these usually happened when I was nice and busy with life) and you think, hey, I’ve beaten this thing, only to see it rear its ugly head once again, in time.

Over the next 20 years, the list of conditions I at one point or another was convinced I had is downright laughable. Lyme disease, MS, ALS, brain tumors. Stomach cancer. Lung cancer. Throat cancer. Bone cancer. Any kind of cancer. I would never visit doctors claiming to have any of these ailments. Instead, I’d go in for a much smaller complaint…a sore elbow, an infected cut in the mouth. In my mind, I kept waiting for the other shoe to drop. I kept waiting for the moment when the doctor would come in and put her clipboard down and sadly take my hand in hers and share the devastating news.

When I was 26, married but not yet with kids, the September 11 attacks occurred and suddenly my fear had a new focus. The hypochondria faded as I dwelled on the horror and tragedy and everything in its aftermath…the anthrax scare, the ever-smoldering buildings and missing people, the fear of flying. A typical person would have walked away from the news coverage after awhile. I didn’t realize it then, but I actually had an addiction to upsetting and troublesome things. I couldn’t tear my eyes away. And all the time in the background it fed the soundtrack that played even as I went to church and prayed and acted like a good Christian…

God is not good. I can’t trust Him. Bad things keep happening.

Three years later, Anna was born. You might think I then would have immediately jumped into adding my new daughter to my worry list, but no. An interesting thing happened. I disappeared into a baby bubble. I had two scares – the ultrasound that showed a “shadow” on her heart that turned out to be nothing, and a head injury when she was five months old that had us overnight in the ICU. I told myself I had learned to give my daughter over to God, that she was in His hands. Then I got blessedly busy with being a mom and loving life. I had an adorable baby, a loving husband, a new home. I was living the safe life I’d always dreamed of. The demons faded, until the night we got a phone call from Dan’s parents when Anna was about 18 months old. Dan’s mom had had a recurrence of melanoma. Nearly Stage 4 cancer. I looked online 10 minutes later and saw she had only a 60 percent chance of living 5 more years. That night, I tossed and turned all night.

The fear was back, big time. The bubble had burst. Somehow I had had this idea that I’d left the past behind me and done my dues, and that now I would live some sort of charmed life. I had always been looking for that time when there’d be nothing to worry about. I was beginning to realize that time was never really going to come.

This is the thing: fear is a thief. It robs you of the present; it robs you of joy; it robs you of strength and sometimes it robs you of your sleep and health. For me fear was a whisper that often came when I was in the midst of enjoying something. It visited when I was alone. It tormented in the quiet and dark hours until in time I didn’t remember what it was like to fully rest.

People cope with fear in different ways. Some numb it or bury it. Some people ignore it and act strong (I know several people, for example, who have addressed their fear of doctors by simply refusing to visit them). Some people talk to a professional and try medication. I don’t think this is a place for a debate about anxiety meds, and I do think they can be helpful, particularly for those whose brains are really wired to be fearful. One could say that was certainly me, and I wouldn’t argue. I can only say that I didn’t go the medication route because I always knew deep down I was missing something in this fight against fear. I needed to find it.

Something told me that part of this fight with fear had to everything to do with facing it.

To be continued...