Saturday, December 31, 2011

Confessions of a Helicopter Mom

Someone mentioned a book recently that I want to read: "50 Dangerous Things (you should let your children do)." I checked it out on Amazon and felt a little smug as I read some of the items on the list. Let your kids walk a tightrope. Sleep in the wild. Throw a spear. Play with fire. Ha! I thought. I could do this! I have sometimes prided myself (key word here: pride) in not being one of "those" moms who only feed their kids free-range, organic whatever and who wouldn't dream of, say, letting their kids make mudpies or climb trees or watch TV for a good amount of time while mom gets something done.

Then I thought about this more closely. No, I don't "hover" over my kids, waiting to swoop in and make sure they don't fall off the slide or digest a candy with yellow #5. But when it comes to their hearts, their feelings, their emotions, I most certainly am the Protector-in-Chief.

This sounds so good, in theory. Of course as a parent and in particular a mom I am called to protect their feelings. What kind of mom would want her child's heart broken?

I remember when Anna was about two, maybe less. We were at the rinky-dink play area in the Enfield mall when a boy who was about four and built SOLID marched up to her and for no discernible reason took both arms and shoved her to the ground. Anna looked up at him, stunned. I felt the Mamma Bear instinct rev up in a way I'd never experienced.

"You can't do that," I said sternly, not caring if his parents were nearby. I think I nearly growled at him.

This kind of protectiveness is a good thing, in small doses. Of course we stand up for our kids. Of course we don't want to see them hurt or treated unfairly. But then of course the reality is that they will be hurt and treated unfairly.

I never had this idea I was going to be a perfect mom or make up for any way I might have felt slighted, when I was a kid. But I am naturally one of those sensitive types, always wondering if I may have offended this person when I made a certain comment or that person when I didn't say or do something. In time, and particularly after Ethan got his diagnosis, this ramped up big time. My intentions were good. Aren't they always? The pressure was huge.

I've got to give Ethan as much individual attention as possible. This is how to draw him out of his shell. But Anna can't feel left out. So I've got to make sure I include her. Extra time for him means extra time for her. If I buy him extra toys to inspire him to play of course I can't leave her out. I've got to make special "girl time" for her to make up for the extra attention he gets from therapists. I've got to respond to Ethan immediately when he says something or he'll get discouraged about communicating and regress.

And, in public:
What if Ethan does something and embarrasses Anna? What if he can't handle an event and we have to leave and she's disappointed? What if I just let him go play and he acts weird and a child makes fun of him and both kids get upset? I better stand right in the middle of the play area and try to make Ethan interact and not just look at the elevator. I better make sure I'm around to explain, to apologize, to intervene, to encourage, to make things better.

The truth is, the thought of either of my kids hurting, of feeling neglected or rejected, stabs a knife into my heart.

But, they will.

I was talking to a very wise woman awhile ago who said quite bluntly, "The point of being a parent is not just enabling your kids to be happy. They have to go through difficult things. That's how they form they learn compassion and unselfishness."

And Dan, when I was sharing my worries about Ethan and school as he gets older, as his teachers continue to talk about him needing to be with the typical kids: "Deb, he's going to be made fun of sometimes. It's just going to happen."

Not that we should allow bullying in the name of "making him stronger." But: our kids don't live in bubbles. What kind of disservice am I doing by not showing them how to deal with the painful and uncomfortable, and move beyond it, to forgive and overcome? What kind of message am I sending if they never push themselves, never hurt but still love, never miss out on something but choose to still be thankful?

I watch other parents sometimes. Even Dan, or the grandparents. I watch the free and easy way they let the kids play, or not play. Not hovering making sure everyone gets along. Not being a second playmate all the time. Loving but not always intervening. Not freaking out if Ethan wants to play with a light switch for a moment. I don't blame myself. I just wanted to do the right thing. But I can't always be a play therapist. And I can't always be a supermom.

About six months ago the kids were in a McDonalds play area, clamoring through the tunnels. The place was jammed with children and many of them happened to be screeching. From my spot down below I had no idea where the kids actually were at any given moment. Anna came down the slide and walked up to me, looking indignant.

"This big boy in there kept standing in front of the slide and wouldn't let anyone go by unless they told him how old they were," she reported. "He kept asking Ethan and Ethan wouldn't answer him. So he called him dumb."

Ouch. And there it was, my fears realized. Anna kept going.

"I yelled at him and told him he wasn't dumb. He knew how to answer. And that he is my brother!"

There are moments that hurt but then slowly meld into something else.

"Anna," I told her as we walked to the car. "I'm so proud of you."

Sometimes you have to let them go. You have to trust. You have to accept what is. You have to know they aren't really yours, that Someone else is looking after them. And when you can believe that, you don't have to be quite as perfect anymore.

Sunday, December 25, 2011

Just Believe

Every year for awhile now around Christmas, I've grown a little weary.

Weary of people arguing the merits of "Merry Christmas" vs. "Happy Holidays" and of everyone desperate to create "magic." Weary of news stories on Black Friday fights in stores and parents creating elaborate ruses to convince their kids there truly is a Santa Claus.

And yes -- even weary of sermons highlighting "the true meaning of Christmas" and of hearing the same Bible verses on the Christmas story, and knowing they are more completely and perfectly amazing than just cliche and tradition...yet somehow still not grasping, still not appreciating, their true significance.

On Christmas Eve morning I woke early and looked out at the quiet streets and sky just growing light. I kept all the lights off and sat in the glow from the Christmas tree. Ethan got up next. He sat next to me on the couch and announced, "We need to turn the lights on!"

"Let's just sit and watch for a minute," I urged.

After a moment he realized the lights of the tree were reflected in the window. "A mirror!" he exclaimed. "Not exactly," I answered. "A reflection."

We looked back at the sky and it had burst into light. Pink, orange, and blue. "In China, the sun is setting," I whispered.

Day was coming. I thought about the light splitting the darkness. I thought about that night in Bethlehem. The light of the world came not just to illuminate but with beauty and creativity and majesty.

And here we are, called to reflect the beauty. Not perfect enough to be a mirror image. But still here, in His image. Called to reflect not a tiny flicker of a candle, but an explosion of light and love like the sunrise that was splashed across the sky.

That evening, we went to Christmas Eve services with Dan's parents. In front of us a mom sat with the tiniest of babies. He rested his head on her shoulder, fingers curled, lost in sleep. I watched in awe.

God with us. God chose to take on such a fragile form. He chose to live a life in which he would know and live out our the man playing the guitar in the service who stumbled and lost his way in the music. Like the girl who forgot the words to part of her solo. Like Ethan, who had trouble keeping his voice to a whisper. Like the very old man, hands shaking as he tried to find his place in the scripture he was reading. God looked down at all this imperfection and still loved.

Outside in the chilly night, the sky was brilliant with stars. "Look!" I motioned to the kids, pointing up.

"Count them!" Ethan asked.

"I can't," I replied. I thought of the verse I had read that morning, from Isaiah 40:

To whom will you compare me? Or who is my equal?” says the Holy One. Lift up your eyes and look to the heavens: Who created all these? He who brings out the starry host one by one and calls forth each of them by name. Because of his great power and mighty strength, not one of them is missing.

And as I shivered in the still air I thanked God for helping me see through the sunrise and the stars, through the wrinkled newborn's face, what I sometimes miss in the sermons.

We don't have to make Christmas anything. His story is not a story but the story. I don't have to "feel the Christmas spirit." I don't have to work to make it perfect. My only work is to believe, as the little girl who forgot some of her words sang:

You have everything you need, if you just believe.
If you just believe.
If you just believe.
If you just believe.

Tuesday, December 20, 2011

These Simple, Miraculous Wonders

I missed something, when Anna was very little. I didn't realize it at the time.

The girl was so precocious. Not about everything, mind you. But by age one she had maybe 15 words and by two she was speaking in long sentences. She showed honest-to-goodness, highly imaginative pretend play before 18 months. She was reading by four. Every time we blinked, it seemed, she had learned something new. She learned so quickly that in mere days her new skills would become commonplace. Dan and I would look back and our memories would quickly grow fuzzy. There was often a sense of Hasn't she always known how to do that?

I didn't mean to, but sometimes I missed the wonder of what was happening in front of me.

Awhile back I read an incredible book by Philip Yancey called Soul Survivor. In it he talks about his relationship with Paul Brand, a famous physician well-known for his research and work with people who have leprosy.

Yancey writes:

If anyone has a right to bitterness or despair, it should be someone who works with these unfortunates. Instead, the single characteristic that most impressed me about Paul Brand was his bedrock sense of gratitude. For him, the universe is assuredly a friendly place.

He continues:

How could a good God allow such a blemished world to exist? Brand had responded to my complaints one by one. Disease? Did I know that of the twenty-four thousand species of bacteria, all but a few hundred are healthful, not harmful? Plants could not produce oxygen, nor could animals digest food without the assistance of bacteria. Indeed bacteria constitute half of all living matter. Most agents of disease, he explain, vary from these necessary organisms in only slight mutations.

What about birth defects? He launched into a description of the complex biochemistry involved in producing one healthy child. The great wonder is not that birth defects occur but that millions more do not, he responded. Could a mistake-proof world have been created so that the human genome with its billions of variables would never err in transmission? No scientist could envision such an error-free system in our world of fixed physical laws.

Sometimes, like Brand's experience with his patients, it takes an encounter of a different kind to appreciate the wonder.

Unlike Anna, some (but certainly not all) of Ethan's milestones were longer in coming. Putting words together. Pretend play. Showing interest in peers, or even just showing me something, anything. Forming a mature pincher grasp. I think of the way Anna would pick up her cheerios with her chubby thumb and forefinger from the time she was 9 months old and I never gave it a second thought. I remember the way she was not much older than one when she took her two hands and made them talk and gave them names: Sarah and Fishy. We thought she was cute. We didn't appreciate the miracle of what was going on inside her brain, the millions of connections taking place enabling her to envision her little hands as people and making them converse.

I didn't see, until some of these things were missing or delayed, in Ethan. And as many of them have started to come...sometimes a year or even two years late, I realize I've been given two gifts.

I savor every little thing Ethan accomplishes. He says "Hi" for the first time to someone at Target and my heart floods with joy. He calls to a friend on the playground to come on the slide and I could watch and listen forever at the beauty of his attempt to make a connection.

There is more, though. There is no way I can ever again look past Anna's milestones, either. I better appreciate as a whole the profoundly complex work it is to, well, live the process of growing up.

One way I could describe them is as different views of two flowers about to bloom. Anna is the flower that blooms overnight. You wake in the morning and suddenly it's there in all its glory, a delightful surprise. And Ethan is like watching a similar flower bloom in one of those time-lapse photos or videos. Maybe this flower is missing a few petals; maybe its not completely symmetrical. But seeing the process of blooming in slower motion provides an incredible perspective of an intricate process. A little imperfection can't take away from the miracle. And you know you can't look at other flowers in bloom again without a measure of awe, remembering the experience they went through to get there.

Our lives are made, in these small hours
These little wonders... - Rob Thomas

Monday, December 19, 2011

Unspeakable Joy

I stumbled upon an article recently written by a person with autism. I've read more of her writing since then and it's startlingly frank. She wants to be called autistic rather than the more PC-term "person having autism." She decries the common practice in special education of forcing autistic kids to keep their hands calm; bodies quiet. She is part of the neurodiversity movement, which advocates that people with autism should be allowed to be and express who they are rather than suppress their personalities to gain acceptance in the neurotypical world.

Sometimes all of this is a bit much for me. If a child never learns to keep her hands quiet, for example, how will she ever learn to do school work or focus? And if we don't to some extent teach our children how to make their way in this so-called neurotypical-dominated life, are we not subjecting them to ridicule and abuse? This isn't to
excuse such abuse -- it's just acknowledging the reality that if you, say, let your child make unique noises and body movements whenever she wants to in public, ridicule is going to happen.

But then I read this article called "The Obsessive Joy of Autism." In it the author shares about her sheer joy at doing sudoku puzzles or watching the show
Glee. She writes:

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

As I read I immediately thought of writing this a little over a year ago.

And then I saw my seventh grade self. This was 1987 and I had a new love: Kirk Cameron and the sitcom Growing Pains. Every Tuesday night at 8:30 I would position myself in front of the TV with my tape recorder (our VCR had inconveniently stopped recording around then) and would tape the intro to the show and theme song. During the next 20-something minutes I could not move from the television. I needed to soak in every minute. After I would write a brief synopsis of the episode in my diary and give it a grade as well. Then during the week I would play what I'd recorded while in the privacy of my room. I'd sing the theme song and memorize the script. And when I was doing that, when I heard those opening notes of "Show me that smile again..." I felt such an inexplicable joy. In those moments, indulging my obsession, if you will, I was no longer a nerd with few friends who cried too much and didn't know a thing about fashion or make-up.

When I remembered this, I thought about the traces of autism that rest in many of us. I thought about the times I've listened to a song over and over because a certain chord in a certain spot made me impossibly happy. I thought of the way many times at parades when I see veterans marching and American flags I feel this sense of both pride and sensitivity and nostalgia that I almost always have tears in my eyes without being able to define why. I thought how the simple aroma of basil can transport me to my grandmother's garden and her weathered hands lifting the leaves to my nose and the moment is nearly palpable, I'm almost living it again, and I'm flooded with something that feels absolutely beautiful.

To acknowledge these feelings, and that they may be just an inkling of what someone with autism feels, just a touch of the way their senses are impacted by the seemingly mundane, helps me see.

Ethan went through a hand-flapping phase, awhile back. I remember being taken aback, worried about him regressing, worried about how he might look. I think if he happened to pick up the habit again I might still have those feelings.

But I might have a little more compassion and understanding as well. "It's not that people with autism don't feel anything," someone once said to me. "It's that they feel too much."

More people need to know this. And maybe, in some small way, more people need to be just a little bit more autistic. If they were, maybe life would seem a little more beautiful and not quite as mundane.

Sunday, December 11, 2011

Lessons from the Choir

This weekend Anna sang in the kids' Christmas choir at church. This is her second year doing so, and it basically entails learning two songs and performing them as the first number in the adults' Christmas show, twice on Saturday and twice on Sunday.

Two years ago when the kids got up to sing, Ethan had just gotten his diagnosis. I watched the kids and had to fight the thought that kept coming into my head...Will Ethan ever be able to do that? It felt like one more broken dream added to a large pile. Last year, as we witnessed him practice along with his sister at home, the thought changed to maybe he will. And this year, amazingly, I marveled that he could be ready to do this next year, at age 5.

Of course, there's the whole thing about the distracting bright lights. And standing still on a stage. Waiting in line patiently. Learning to use a quiet voice and learning to at times keep completely silent. Remembering to sing. As I thought over the list, I wondered how we expect any child who is preschool or kindergarten age to get up on stage and perform. Then I remembered that we don't, really.

The first show was at 2 o'clock on Saturday. My friend's son, who is 5, was in tears waiting to go on stage, he was so scared. Then he began to sob. Someone led him away just as the kids were getting on stage. There was feedback from the microphone. One soloist stumbled over her words; another forgot a part and covered her face with her hands.

As I stood in the back in the dark and watched, I thought about how forgiving we are when children perform. There is something beautiful and pure about their unsteady voices. There is an innocence in their mistakes. Something about the imperfection brings out smiles from the adults watching, and warms hearts in a way that I don't think a polished, professional children's choir does.

As I listened, I wondered why I would expect Ethan to be perfect, when there were typical four-year-olds on stage yawning, tugging at their sleeves, and even turning around backwards.

I wondered why we forget that there is beauty in weakness.

There is a story that Jason Upton tells about "working" with his little boy. I know I often talk about him, but that's because I've been profoundly impacted by his music. He tells the story of sitting at a work bench, doing something like hammering or sawing and having his little boy come up and ask if he can help. And of course Jason lets him and of course his help isn't much help at all, but they're spending time together, and they're laughing, and there's something so sweet about the way his son was making an effort, as small and inconsequential as it might have been.

I think that sometimes this is the way God sees us. I think that's what God sees, when those kids are up there belting out songs a little bit out of tune. When we nod and smile and are still touched by the beauty, we are seeing like God. And when we try and don't give up, and when we try and still fail, like the little boy who just couldn't make it onto that big stage, we are loved by God.

It's like the song Jason wrote about his son wanting to be with him:

Everything you do
I wanna do with you
Cause doing things with you it makes me happy

And everything you say
I wanna say it too
Cause even when I say it wrong we just start laughing

Merciful Father I'm learning to trust you love me the way that I am
My simple desire to help you means more to you
than whether I really can

Wednesday, December 7, 2011


The day after Thanksgiving, I
brought the kids to hang out at my parents' house for awhile.

Andy was there. He always comes home from the group home for the major holidays. This can be difficult for my parents. Andy, well...he doesn't like to DO much. TV has never interested him. Or the computer. He loves to be outside but you can't always do that during the winter months in New England. Of course he loves to eat. And he enjoys listening to music, so he spends a lot of time in my parents' finished basement, sitting on the couch under a blanket, listening to CDs.

On this certain day Anna was really longing for some one-on-one attention from the grandparents. I think sometimes she gets jealous of the younger cousins when she was the first one who used to have everyone's undivided attention. So I took Ethan downstairs to visit with Andy.

Here is the thing about Ethan and Andy: they gravitate toward
each other.

Ethan instinctively knows there is something different about Andy and is fascinated by him. And Andy, who isn't big on eye contact or really letting you know he cares about you being there, will often look Ethan straight in the eye and give him a little smile.

Andy was in his usual spot on the couch, with his blanket, listening to Jason Upton. He was making his usual noises, clucking his tongue, hand covering one eye, looking at his other hand. He seemed a little perturbed that we'd invaded his space. Still, I persisted.

"Ethan, do you want to sit next to Uncle Andy?" I asked.

"Yeah," he answered. He sat on the other side of the couch. He looked over at Andy. "Hi Andy," we both said to him.

His eyes lit up and he looked at both of us.

I went over and attempted to give a quick hug, which in his usual fashion Andy pushed me away, but not unkindly. His eyes were still smiling.

Ethan went up and gave him not a hug but more like a gentle tap. Andy smiled and held his gaze for a moment. Then he started running his script, one of the few scripts he has:

"Hamburger. French fries. Diet coke."

He doesn't just say this when he's hungry, my parents have told me. He says it when he's happy, as routine, as comfort, as a way of settling himself.

I've often wondered if people had worked with Andy more, if they had known more about autism back then and if the schools had given him the therapies he truly needed from the start, how much more verbal Andy might be.

"Andy, can you say this?" I asked on a whim. "Ethan, you too. Say 'I love you.'"

"I love you," both of them repeated, earnestly. Ethan thought this was a great game. His words at just-turned-4 are more clear than his uncle's.

"Let's say it again," I said, suddenly the speech therapist. The way Andy focused on me intently inspired me. A part of him is so eager to learn.

"I -" I pointed to myself. "Love -" I pointed to my heart. "You." I pointed to Andy.

Something prompted me to then add: "Now say 'God loves me.'"

"God. Loves. Me." Ethan was grinning from ear to ear. Andy seemed so focused on getting the words right. They said it again. I listened to the words linger in the air, strong and true. God loves me.

In that moment in the basement I thought, I felt, I knew that there are reasons for everything.

And while I don't thank God for giving autism, and I don't credit God for autism, and I don't have all the answers or know all the reasons, in that moment I knew that Ethan's autism could help me do something extraordinarily important.

Ethan could help me remember Andy. Ethan could help me to see Andy.

Sometimes, when a person's level of disability is so great, that can be hard. Sometimes, when I see Andy only through the eyes of my childhood, my sight is obscured by all the wrong things. I grew up viewing Andy primarily as a problem, not a person. Part of that was not me just being selfish or evil but just because it was hard to see the person, hard to see past all of the behaviors -- especially when I was a kid.

The CD player clicked and I watched how they both looked over with such intensity and anticipation, waiting for the next song. They both loved the room with its low ceilings and quiet and nothing but music.

Andy is no different than any of us. But sometimes the gulf seems great. Until I see my son, only lightly touched by autism. He helps bridge the gap. Ethan reminds me to think about what Andy is thinking or feeling and knowing Andy is even when he's not showing us that.

As we sat and the next song washed over us, I knew that despite how it may seem to the cynic, God cares and all things work together for good.

Ethan in part has Andy to thank. I never would have rushed him in to the developmental pediatrician or gotten him the therapies he needed if not for my experience with Andy. And today, now, Ethan's teachers tell me there is a chance that sometime down the road, he could actually be let go from special education (and get help under a 504 plan rather than an IEP).

This awes me.

And Andy? This I know:

God has a purpose for him.
God doesn't want Andy to feel all alone.
God wants him to have people in his life who understand.

Now Andy has Ethan. Ethan, who asks for him when no one else does. Ethan, who understands him better than anyone. Ethan, who can help make a connection.

For all this, how can I not be thankful?

Friday, December 2, 2011

Well, Technically You're Right

Back when Ethan had private-pay OT in addition to Birth to 3, one of the activities "Miss D." would often do with him was work with him on drawing a vertical line. If I remember correctly, apparently kids typically start by learning to draw a vertical line, then a horizontal one, and then a cross.

They would practice that sometimes, drawing both lines, and Miss D. would say over and over, "Down...and across. Down...and across."

Now that Ethan's into his church and bell phase, he's begun to recognize that a cross often symbolizes a church.

"See that?" I've said, pointing to a cross on a church. "That means God," I tell him, wondering what they'll say at school if he announces that.

I thought he was getting it. Apparently not completely. I forget that "a cross" sounds exactly like "across." I forget that he doesn't forget little things like his sessions over a year ago with Miss D.

"There's a cross!" I said the other morning in the car, pointing to a cross on a sign advertising a church down the road. Ethan saw it, too.

"Yes!" he said, looking right at it. "And there's a down!"

Thursday, December 1, 2011

More Questions Than Answers

So, for awhile now I've been taking Ethan to music classes at this great little place that is sort of a mish-mash of services for kids and adults, those with special needs and not. He LOVES music class, and before that about a year ago he had done a little playgroup there with another boy on the spectrum that had gone fairly well.

This place is a little, shall I say...earthy crunchy. In addition to the special needs classes, they've got a chiropractor there. They do acupuncture. And yoga. There's also a naturopathic physician who's always whipping up remedies for people that she places in little brown paper bags.

I watch people come to pick up these bags from my spot in the waiting area and try not to giggle, listening to them talk about roots and herbs. I laugh because I am SO not the earthy type.

I never considered cloth diapering.
I clean my house not with vinegar and lemon juice but with those horrible cleaners chock-full of chemicals.
We eat organic stuff...every once in awhile.
They still give me plastic bags when I shop.
The list could go on and on.

So this place may not be my "thing," except I've enjoyed, or I should say Ethan has enjoyed, the classes they offer. Not only that, but it's the only place I've found in the area that bases what they do on the Floortime approach. What that has meant to me is: classes are based around play and following the child's interests and lead, aiming to motivate the child internally rather than through rewards, as ABA (applied behavioral analysis) does.

The thing is, ABA works great with Ethan, because he's quick and can memorize what's expected of him. To me though, when learning and play is based soley on memorization, it's built on a flimsy foundation. This used to happen to me all the time in math, which has, sadly, always befuddled me. I'd be able to work out the homework problems that were just like the examples provided in the book. But change up the problem a bit, add something new, and I was lost.

Floortime approaches learning as emotion-based. We go to an amusement park, for example, and Ethan is so enamored by the roller coasters that he takes that memory with him at home and is inspired to do roller coaster pretend play. He wants to recreate the experience because it meant something -- rather than an ABA therapist modeling playing with a roller coaster and rewarding Ethan with a sticker for imitating the action.

I've said it before, but I'll reiterate - ABA therapy has its place. I think my brother would have benefited tremendously if he had had more ABA during his early school years. But it's not best for Ethan, so for two years now I've poked around online and found that the only certified Floortime therapists are an hour or more south of here. (Of course!) they want to charge oodles of dollars for a thorough play assessment and evaluation. And I find it hard to justify driving Ethan hours every week for play sessions that are supposed to be relaxed and spontaneous.

All of this leads me back to where I started, the fact that I found this place one town over that, while not being an official Floortime provider, at least operates under the principles of Floortime.

Or so I thought.

A few weeks ago I decided, since Ethan was enjoying his music class so much and I'd been looking for more playmates for him, that maybe he should start another class there. So we came in so that the owner could have a play session with him and assess his play skills.

No one was in the waiting room that day, and I could hear fairly clearly what was going on in the back room.

"Ethan, do you want to play doctor?" Ms. K. asked. Ah, something we've done at home. He's into doctor stuff.

A few minutes later: "Ethan, do you want to shop at my store?" Eh, he doesn't so much like grocery store play.

"Ethan, do you want to check me out?" No answer. "Ethan, do you want to check me out?" He doesn't know what that means. "Ethan?"

Then: "Do you want to come on my pirate ship?" Um, he doesn't quite get pirates yet. He does like to pretend a laundry basket is his canoe, if he's in the right mood.

Finally: "Ethan, we can swing in a minute. If you play on my ship, then we can swing. Ethan?"

Um. Yeah.

A few things were going through my mind. One was that it all sounded awfully familiar. The pleading, cajoling, pushing. Play with Ethan can be tiring. The other was -- for someone who says they practice Floortime, that was NOT Floortime. Floortime would have followed Ethan to the swing and made a game of that. Floortime wouldn't have continued to push a concept he just didn't get...would have simplified...would have done whatever it took to make the connection with the child.

Ms. K. came back with Ethan. "He did pretty well," she said, "considering I pushed him a lot."

Pushed him? This was supposed to be play. This was supposed to be fun. When it comes to playing with a kid on the spectrum, how much pushing is necessary to teach our kids about living in the typical world (where not everyone follows your lead all the time) vs. doing whatever it takes to help them begin to find play as fun?

I asked what she thought Ethan needed, as far as play or playgroups was concerned.

"Well, we could do a playgroup, and I could keep doing certain things, certain play schemes, and he would certainly model them, but I don't know how much fun he'd actually be having," she said. "I'd like to do Brain Gym with him instead."

Brain Gym?

"I think what he needs is to learn how to focus. His brain hasn't made some connections, and that's what makes this difficult for him. I think the Brain Gym exercises could help."

That all sounded relatively reasonable, until I got home and started Googling Brain Gym and realized a lot of people considered it nothing more than pure quackery. Nothing but anecdotal evidence. Like so many treatments in the autism world, just pseudo-science.

So now I'm left wondering --

Do we go back to Ms. K. and learn our brain exercises that supposedly will help Ethan's left and right brain hemispheres connect?

Do I drive down to southern Connecticut to have real Floortime people assess Ethan and tell me what I probably already know?

Or do I do what Dan is always telling me to do: trust my own instincts and that I really do know most of what the "experts" know? Do I just live life and do the best I can?

The choice seems so simple. Yet a part of me feels like those people coming in for their little brown paper bags full of remedies for their heartburn or allergies or headaches. A dash of this and a twist of that. A little tinkering here and there to find that perfect combination, to find that ideal blend that will assuage any lingering guilt that I didn't do enough to help my child.

God, help me to let it go.

Monday, November 28, 2011

Quiet Moments with the Birthday Boy

Today is Ethan's 4th birthday. When I picked him up from school, he announced, "I think I would like to go to the park today!"

So we did.

We marveled at the gnarled trees split down the middle, and mammoth branches still strewn on the ground from the storm.

We admired the buoy in the pond, which Ethan first called a football, and then, after I told him what it was called, said later, "I like that boo!"

We approached the playground, where Ethan announced, "I want to go on that tire swing!" I pushed him until he was dizzy. His eyes sparkled and his grin was huge.

"Watch me go down the pole!" he called a few minutes later, so absolutely proud of himself.

He told me to count while he hid and then proceeded to hide next to a tree right in front of me, in plain sight, with his eyes covered.

Then he told me I had to go on the monkey bars, which I attempted and failed miserably.

In the unseasonably warm November sunshine I could only think about how far we've come. I thought about the tiny newborn, born 15 days early, I held four years ago. Unlike his sister, he had trouble staying awake. He seemed to want to stay in the fetal position, fists clenched. He seemed to have a little trouble swallowing. He failed his hearing test at first.

My boy, starting out in this world with a neurological system that didn't fit him quite right.

But how he's adapted. He's learned so much.

I'm so proud of him.

The morning after Ethan was born, I looked out the hospital window and happened upon a beautiful sunrise. This morning, we had another one...all fiery orange and pink. Then tonight, there was a magnificent sunset as well. People were sending pictures of it to the evening news.

The sky was absolutely glorious, and all I could feel was blessed.

Ethan, a few hours old

Wednesday, November 23, 2011

To Be Real

The idea seemed so good at first.

Ethan started getting "into" trains awhile ago, meaning that whenever we'd be at the library or Barnes & Noble, he'd spend a good deal of time at the Thomas the Train table, pushing trains around the track. When a friend mentioned on Facebook before Christmas last year that she was selling a train table and tons of trains, I thought we should leap at the opportunity.

So I drove out to her house and figured out how to wedge the thing into the back of my car.
I lugged it into the garage and Dan put the pieces back together.
I attempted to pry off the old track glued on there, meeting with limited success.
I spent a great deal of time attempting to fit their assortment of different brands of train tracks into some sort of layout, which was infinitely more difficult due to the scattered tracks of various sizes still glued to the table that I somehow had to incorporate as well.

I spent WAY too much time on that part.

We presented the table to Ethan on Christmas and after the holidays moved the table up to his room, where, lo and behold -- he rarely played with it. He would for a few minutes, or if someone else was playing. But anytime he was left alone in his room, I'd inevitably hear him start smashing the tracks.

So I mustered up some determination and glued the tracks down.
He smashed them again.
So I glued them better.
And he smashed them.
So I decided, with some guidance from Dan, to screw the tracks in to the table. Even on my best day, I'm possibly the least handiest person in the world. Somehow I managed to split a number of tracks in two, but I did eventually get things screwed down.
But somehow Ethan managed to break those tracks off, too.

Some days I'd leave the table a jumbled mass of tracks, washing my hands of the matter. Every once in awhile, Ethan would say, "The tracks are broken," and I'd half-heartedly put most of them back together.

I wondered when exactly along the way all of this had begun to feel like a battle.

Last month all was quiet in Ethan's room on a Saturday morning. Too quiet. I went in there to find he had peed on the train table.

This is not something he does often, peeing on toys or ruining toys or books. Every once in awhile he will, but thankfully Ethan doesn't tend to be destructive. Every time he is, however, feels like a punch in the gut.

Every time he does something like that, I remember being a kid, and Andy and his bathroom incidents all over the house, the clothes and furniture he destroyed -- not out of malice, just out of frustration; confusion; not understanding.

Every time Ethan does something like that, I fight getting a very bitter taste in my mouth.

With Ethan watching, I began to rip up the train tracks, furiously cleaning, tossing things into a garbage bag. That was it. I was waving my white flag. I was admitting surrender.

When I was a kid, for whatever reason, one of my favorite stories was Pinocchio. In the story, a fairy tells Pinocchio the wooden puppet he can become a real boy if he proves himself "brave, truthful, and unselfish." The part I always remember and always loved is the end, when Pinocchio is jumping around for joy, so thrilled and awed to be a real boy.

The more I thought about the train table fiasco, the more I wondered: had the train table been for Ethan, or had I been pushing the whole thing in my own vain efforts to mold Ethan into a "real" boy? A typical kid? Someone who would meet my ideals and expectations?


One of the most painful things about having a child with special needs is really nothing about the child. It's the way the experience turns a spotlight on your insides, your motives, your intentions...and highlights every impurity, every darkly selfish part.

It's okay to grieve. But what if the greatest tragedy was to spend life pining for the wrong dreams; longing for the things that aren't even real, things that don't actually bring us the ultimate fulfillment we're all searching for?

I can't forget something Beth Moore once said, and I'm paraphrasing: God's plan for each of us is not that we're a perfectly happy and content, but that our lives have meaning and purpose.

I DID need to surrender, just not in the way I had thought.

Ethan IS a real boy. Ethan is my boy. He loves music and computer games and trains (when we're not at home), cul-de-sacs and bells. He loves...he shows love...and he shows love unashamedly, without conditions. I am the one who can be hollow inside; not genuine.

Pinocchio finally becomes a boy when he chooses to sacrifice his life for his father. He lives out the fairy's admonishment to be brave, truthful (after some slip-ups!), and unselfish.

To be brave, not filled with fear, in the face of challenging circumstances. Truthful with not just others, but myself. Humble and unselfish, loving people for who they are rather than what they can do for me.

This is what it means to be real.

Friday, November 18, 2011


Wherever you look these days in our little corner of the world, you'll see the tree debris. Piles of brush -- branches that fell during the snowstorm -- lie on the sides of the road, waiting for the town to pick them up. Some branches are still wedged on roofs. Small trees the storm wrestled from the ground lie strewn about in unnatural angles. Some bigger trees have lost their grandeur -- many of their sweeping branches were snapped by the snow into jagged, stubby arms.

I look at some of these trees and wonder if they will survive.

Years ago I went on a trip with my mom to the Southwest. The experience was unforgettable -- I was awed by the beauty. I fell in love with the red rocks, the cactus, the desert landscapes. When we returned home, however, I was surprised to be struck by something as we walked to the car that day in May. We were enveloped by the aroma of green, of new leaves. My mom and I both inhaled deeply, thankful to be home.

That was the first time I think I realized how much we take comfort in our surroundings, in the familiar and sometimes even mundane, without realizing we are doing so.

Long after people had stopped talking about the horror of 9/11, I would often think of the people in Manhattan, trying to navigate life again, trying to navigate the streets again, without the anchor of the twin towers. The towers were how I got my bearings, how I knew where I was, I remember one man saying.

When a severe ice storm hit my mom's hometown several years ago, she had to drive up to north-central Mass. and see the damage. What she saw left her in tears. The trees, the grand trees she remembered from her childhood, had snapped like twigs. Something different was left.

I have been looking in my backyard at the fallout. Thanks to the storm, the light has changed. More sun is able to peek through. I can see more. It's that way all around town. Things that were previously obscured are now in the open, exposed. At times this feels a little peculiar, and a little sad.

Yet there are times we need to be jolted in order to really see. Sometimes it's only when we lose our anchors that we realized we were tethered to something we shouldn't have been. Sometimes we have to let go of things in order for something new to grow.

Some storms come and are out of our control. There is nothing we could have done in our own strength to stop the deluge. But then, even then, we can look beyond the debris and find something of worth left behind. Something we can learn from. Something we may not have ever seen, had the storms chosen to pass us by.

Wednesday, November 16, 2011

Bells are in the Air

So, we've ever-so-slowly started to ease out of Ethan's interest in cul-de-sacs and are now journeying to wonderful world of bells.

It all started on September 11, when at church our pastor spoke for a few minutes in honor of the 10th anniversary while from somewhere a bell started tolling in the background.

Ethan was fascinated. I was actually a little intrigued, wondering if in fact our church did have a bell up in the steeple that I just hadn't known about. At the end of the service Dan broke the news that indeed, the sound was not a real bell but a sound effect blasted through the sanctuary's sound system.

"It's not a real bell, just a sound effect," Ethan says at church every week.

We drive and drive and constantly I am peppered with the same questions.

1. Does that church have a bell?
2. Is it an upstairs bell or a downstairs bell?
3. Can I hear it?

One day during the power outage as we bombed around in the car we were gloriously blessed with the sound of bells ringing from a church in the town of East Granby. I rolled down the windows so both kids could hear. Ethan's smile couldn't have been bigger.

As we sat in the autumn sunshine, waiting at a red light and listening to the tinkle of those bells waft past us, I thought of what a beautiful sound it really was.

In Ireland, my neighbor who grew up there told me yesterday, the bells ring several times a day. The older generation, the Catholics who hear it know at that moment that they are to stop. The men remove their hats. They take a moment to pray.

But here in New England, in an area rife with small villages and town greens and brilliant white old Congregational churches, the bells don't often ring. Even when the bells ring, most of us are too busy to listen. Racing by in our sealed up cars, we don't even hear them.

Once again, Ethan's eyes and ears, his different perspective, have me noticing details I never would have otherwise.

We incorporate bells into play. A typical game these days is building a tower with blocks, placing a bell on top, and then having the Fisher Price people gather below to listen. One morning last week Ethan woke up and began performing a bell concert in his room. From below I heard something like this:

"Ring, ring, ring, ring, RING, RING, RING!!
Ding, ding, ring, ring, dingdingdingdingding, RING!!! RING!!!"

We've promised Ethan in the summer we will go up to Springfield and back to Dan's old church, a beautiful, imposing Methodist structure right on one of the main avenues in the city. Every summer they have a series of concerts in the early evening. People gather and sit on blankets to enjoy refreshments. Children run through the cool grass in their bare feet. Then, as the sun sinks lower in the sky, they listen to the bells play.

Christmas is coming. I'm going to hear "Silver Bells" on my XM radio holiday channel any minute now. Those jingle bells on the one-horse open sleigh are about to start jangling. I have the feeling we'll be visiting many, many Salvation Army bell ringers in front of stores before all is said and done.

Monday, November 14, 2011

Hope in the Unseen

Ethan has been doing great lately. Ethan has been doing fabulously well. The other day his speech therapist sought me out on the school playground just to say how amazed she was at his progress.

"He was pretending to make a screwdriver blast off like a rocket!" she raved. "He's such a model for the other kids in the ABA room on Mondays." Her face was beaming. The other day I watched him trot off with the typical kids in the three-year-old class, no aide in sight. The special ed teacher nearby gave me an amazed glance, as if to say Well, would you look at that?

At home that little imagination is starting to take shape. His ideas are simple and repetitive but HE is generating them. Ethan is the one deciding the retractable tape measure is actually Swiper the Fox's house. Ethan is putting his creatures in a line and pretending they are waiting to go down the big tunnel slide. This is a big deal, people.

And I have absolutely no idea why.

The old saying about autism being a puzzle ain't kidding. If autism wasn't such a mystery, we'd have a cure by now. If any of us knew that all we had to do was A plus B to automatically generate C, we'd obviously we doing just that.

We haven't increased his therapy. In fact, it's decreased. I haven't done the one-on-one play dates I've wanted to plan for him. He hasn't had less technology/screen time to focus on more explorative and imaginative play. During the power outage he lived on a steady diet of DVDs and Angry Birds. He had an unscheduled week off from school in the dark and slipped back into the routine without blinking an eye.

It's hard not to wonder.

A year ago he was having 10-plus hours of therapy a week while making steady but certainly less significant gains.

Many, many others who have children with autism do everything possible to get their kids the most expensive therapy and latest treatments, they move heaven and earth to rearrange their schedules or their family's diet or their jobs, they get down on their hands and knees and they work and they pray and they play with their child and in the end only witness their child make the smallest of gains.

My own brother spent years at a school for children with autism and yet has never learned how or cared to play...never expressed an emotion with words...never said "I love you."


I know I could rest in my laurels and believe it's something I've done, or it's some testament to my faith and belief in Ethan's ability, in God coming through for me. There are so many people out there who believe if you just do enough, just believe enough, just (hold onto the illusion that you are completely in control) then everything will work out the way you want it to.

Or I can take the more difficult path. I can choose to trust when the why questions can't be answered. I can thank God for the gift of my son and the gains he's made, without the guilt of wondering, "Why us and not someone else?" I can choose not to be bitter about those who continue to struggle greatly, about a life that doesn't always have pat or logical answers.

I can believe that God has a plan for every single person with autism, for every person with special needs.

I can do my best as a parent and then throw myself back into the arms of His grace, a place where I don't have to make anything happen. And neither does He -- because He already has. Amazing things are happening in each life touched by autism, and sometimes those things have nothing to do with words spoken, or letters on a paper.

We had a guest speaker at church awhile ago who has a grown son with disabilities. I believe his son is in a wheelchair and is blind. He told a story about being on the beach one day when he saw a group of guys his son's age playing volleyball. He sat there in awe for a moment, watching the strength of their muscles, the way they were laughing and interacting with each other. And then he heard the vilest of voices whisper in his head, "Your son never got to play volleyball with you. You've seen other people healed, but not your son."

He gathered himself, and then he spoke back.

"Oh, I know," he answered. "But I see us playing volleyball. I don't know if it will be next year or 10 years down the road, in this terrestrial realm or in the celestial realm. But there will be a day when my boy and his daddy play volleyball. Maybe we'll have perfect heavenly bodies. Then we won't run, because we'll be able to fly."

I rejoice at Ethan's progress, but my hope cannot be in Ethan's progress. My hope, or my doubt, can't spring from cold, hard facts.

There is something beyond facts. There is Truth. There are miracles everywhere, in this world and in the world to come. If only I can see. If only I can remember.

Look beyond the window there
To the sky above to the open air
Look beyond what you can see
Close your eyes and just believe

The lion roars and the lamb lays down
They live together in a whole new town
They're calling me and they're calling you
From the cold hard facts that we're on our own
To the age old truth that we're not alone

- From the song "Emma (You're Not Alone)," by Jason Upton

Sunday, November 6, 2011

What Happened When the Lights Went Out

Snowstorms where we live in southern New England are by no means uncommon. Just last December a storm left 22-plus inches on the ground. Snow in October, however, is rare. "I want snow! I want snow!" Anna had been shouting for the past month, and every time I reminded her that the most we ever see in October is a quick flurry. The most, that is, until Saturday, October 29, when the snow began in earnest around 1 o'clock here in north-central Connecticut and kept snowing throughout the night. A foot of heavy, wet snow on the branches of trees that had still had many leaves meant trouble. Very big trouble. Just a few hours after the snow had started, the branches, trees, and power lines began tumbling down.

Day 1
Our power went out at dusk while the kids were playing in the wonder of October snow. "Can I eat it?" Ethan was asking with joy. Anna mushed the flakes into snowballs and began lobbing them at me. I looked around and marveled at the world turned white. Our pumpkins and mums on the front steps were quickly disappearing. Next door, I noticed the flicker of a candle in the neighbors' kitchen. Glancing inside our own home, I saw indeed that our lights were gone. This was not so much of a disappointment but rather a piece to add the adventure. We could do this! Two months ago we'd prepped for Hurricane Irene only to be left with a lot of batteries and jugs of water. Our street never lost power never lost power in general. We'd hunker down and camp out and this would quickly blow over.

"Deb, you've got to see this," Dan was calling from the front yard. I rushed over with the kids and saw our small dogwood tree so laden with snow that several branches had already snapped. "Noooo!" shouted Anna. "I love that tree!" We frantically grabbed brooms and tried to brush the snow off the leaves to relieve the pressure. Our efforts were futile. In ten minutes nearly all of the branches on the tree had snapped.

Heading to the backyard, I realized the snapping sound was everywhere. In our backyard... across the the neighbors' yards. By the time 10 more minutes had gone by a small evergreen had come down in a yard two houses down. I heard a crash across the street as a huge oak branch fell in the road. A branch cracked and fell on the other side of our house, not far from where Ethan and I had just been walking. At that point the snow was no longer fun, but for the first time in my entire 36 years living in New England, frightening. We ushered the kids inside and lit candles. We listened to the radio; we saw lightning and heard the rumble of thunder snow. After the kids were in bed, Dan and I stepped outside into the fury. The crackling of limbs was all around us. In the snowy darkness I saw more fall. Transformers exploded again and again, sending an eerie glow in the sky. I heard the whine of sirens in the distance. In bed attempting to fall asleep, I truly wondered for the first time ever if a tree was going to fall on the house.

Day 2
I woke when it was still dark. Downstairs, I lit a candle and stared out the window. We live on a fairly busy street and once in awhile a car drove by. Every time one did the car headlights illuminated a massive branch down across the street. How bad is this? I wondered, waiting impatiently for the sun.

I watched the candle in my hands flicker and dance, watched the way it threw shadows on the walls. Once I got up too quickly and the light snuffed out. I reminded myself how fragile the light is. I thought about how fragile we are. We are blinded sometimes by our invincibility, by the supposed surety of bright lights and buttons and screens, yet there was a beauty in the little candle's quiet dance that I'd never appreciated before.

When daylight came I ventured carefully into the backyard to survey the damage. No trees were down, just very large branches. The kids' climbing tree was most likely going to make it. Wires were down across the street. The snow had transformed us into January overnight.

That day we ventured to Lowes, where of course the generators were gone, and found a charger that would help us run a little electricity off our car's battery. We learned that 800,00 other houses were in the dark as well. A search for gas turned up a few open gas stations within a 10-mile radius. At one, we waited in line for a half-hour (Ethan was quite happy, I must add, that we spent much of that wait parked in front of a street that had both a "No Outlet" and "Dead End" sign). When I finally went in the gas station to buy some bread, I suddenly heard a man shouting, "Here's right there, officer!" and two cops were yelling and handcuffing a man on the ground right in front of me. Apparently he had stolen a car and then waited in the gargantuan line to get gas, where his owner had come by and recognized the car.

Two hours later I went searching for food in Hartford (which had much more electricity) and ended up finding a McDonalds and a gas station open. Waiting to fill up Dan's car took 45 minutes. People were running out of gas in line and making the traffic worse. Almost everyone was filling up both their tanks and gas cans for their generators.

Over in McDonalds was more craziness. Apparently it was one of the few restaurants for miles around opened. I saw other people from our town, including the mom of one of Anna's classmates. Two ladies from Texas and California from a hotel across the street were also in line. They had come to visit family and look at the foliage, which of course was now buried under the snow. The line took another 45 minutes to get through, and in the end they got our order wrong. But as I drove home I thought about about how that was the most conversation I'd ever had while waiting in line around here. Connecticut is not the south or even, say, Maine. People keep to themselves. But now everyone had a story to share.

Day 3
Monday was Halloween, only everything was cancelled, including the Harvest Party at Anna's school. No one was thinking about trick-or-treating, anyway, with branches and power lines all over the sidewalks.

We drove 25 miles north to my parents' house. Their power was out but they had heat and hot water. Their street in Springfield looked worse than ours. The kids and I enjoyed the beauty of bathing and showering and we visited for awhile. Driving down I-91, all I could see was empty store parking lots. All of the towns in our little north-central Connecticut world were still dark.

The house was getting colder. Dan and I talked and decided if the temperature went below 50 degrees, we'd find somewhere else to say. We put on layers and ate chicken off the grill. Anna and Ethan slept bundled up together in Anna's bed.

As I sat shivering under the covers, I kept thinking of the Laura Ingalls Wilder book "The Long Winter." I remembered the morning she had woken up with frost on top of her quilts while a blizzard howled outside. Something about the fact that other people had gone through this long ago brought me comfort, and I slept.

Day 4
Our fireplace, used just once in the seven years we'd been in the house, suddenly became a necessity. We found some logs and got the thing going, although it certainly wasn't going to heat our house or even the entire living room. Still, some heat was better than none.

While Ethan napped in the afternoon, Anna went to play with her friends at the neighbors' house. They had a generator, and when I went to retrieve her, I was enveloped by the heat and lights. They had numerous family and friends over there; someone had driven all the way to Long Island to get the generator and everyone was trying to make the most of it.

Anna was sad to leave the jovial atmosphere. I couldn't blame her. We discovered the homemade sauce and meatballs I'd had in the freezer was going to go bad, so we cooked pasta and sauce on the grill, making many dishes before realizing our kitchen sink was clogged. The pots went in the backyard and were filled with snow. We'd figure that out later.

Day 5
In the middle of the night, I heard whimpering. I went downstairs and found Ethan, half out of his jammies, lying in bed shivering. He'd had a bathroom accident of the worst kind while he was sleeping. Apparently at some point he'd tried to get out of bed and go to the potty but couldn't clean himself up. There was poop everywhere.

My heart broke at the sight of him shivering uncontrollably. In the lantern-light I cleaned him as quickly as possible and got him into fresh clothes. But there was a mess on the floor and Anna's rug is white. I knew I had to clean everything then and there, so at 3:30 in the morning I began scrubbing and crying. Dan came down and threw the poopy things out in the trash. Who knew when we could run a washer again? I scrubbed and shivered and wondered just how Ma Ingalls had done this.

In the morning, Dan said he'd stay home from work to help us (his office in Middletown had somehow never lost power and life was going on as normal there). We left that morning on a quest for firewood, gas, and maybe a heater we could run off the car battery in spurts.

Heading up I-84 towards Massachusetts, we found what the things we were looking for. We drove a little further, into Sturbridge. As I got off an exit, I came across a man in a car with New York plates frantically waving me down and telling me to open my window.

"Where can I find gas around here??!" he was yelling.

"Um, I'm not from here. I just filled up 15 miles down the road," I told him.

"I'm about to run out!!" he shouted and drove away maniacally.

That night in the car Anna and I saw men working on the high tension wires that span the Connecticut River. In Price Chopper, the one supermarket in town with a good working generator, everyone looked a little bit frazzled and a little bit unkempt. "Is this food fresh?" a mom with two young girls asked the pizza guy.

"You would know if it wasn't," I told her, thinking of the Shop & Stop down the road, running on minimal power and smelling of moldy, decaying food. She smiled gratefully.

At home, we had a laundry situation. Thankfully, everyone still had clean underwear, but otherwise we were running very low. I considered washing clothes in the tub but after attempting with one blanket I abandoned the idea. How would they dry, anyway? We decided to go through the least dirty of the clothes and wear them once again. Ma Ingalls would not have been impressed.

Day 6
We had developed a new routine each morning. The kids would wake and we'd eat breakfast around the fireplace and listen to the governor update everyone on power situation on the radio. Then we'd go somewhere, usually to find hot coffee and hot chocolate. Later, the kids would amuse themselves with our portable DVD player or games on Dan's phone.

In the afternoon, the kids played outside with the neighbors' kids in the quickly melting snow. As they laughed, pelting eachother with snowballs, I realized how much kids needed play, especially in times when their schedules are uprooted. Over the past few days Ethan had taken to carrying an old clock radio around and plugging it in in various places, pretending it was his movie theater and asking us to come watch. He would bring it in the car, too, almost like a security blanket. In his own way, he was trying to cope through play as well.

That night driving on another errand with Anna we spotted power trucks on our street and houses lit up a mere mile or so away. When our street turned dark again Anna began to cry. Seeing the houses with light reminded me of the whole other world that was going on without us, the world with power. On the news on my XM radio in the car, no one was talking about this storm. They'd moved on.

I thought about Katrina. Joplin. Even 9/11. When we're not personally impacted, when our lives aren't specifically uprooted or affected, how quickly we forget and move on. Not that we were experiencing that kind of suffering, but even our little taste was a jolting reminder that people going through tragedies and natural disasters are hurting long after the cameras have left.

Of course I wanted our lights back. But as I looked out at the night I realized I'd miss being able to see so many stars.

Day 7
Everything went on exactly as it had the previous six days. I saw more power trucks and felt hope. The temperature kept dipping lower inside.

I realized that not every day has a profound lesson to learn, except perhaps that sometimes the only lesson is to just keep going, keep persevering, when absolutely nothing seems to be changing.

Day 8
I heard the trucks before I saw them. Rushing to the window, I could see them working far down the street. The sun had been up barely an hour and already the neighborhood was buzzing with chainsaws as everyone attempted to clear their debris.

By lunchtime the trucks were closer. I could see they were from a company named Pike from Savannah, Georgia, one of countless crews from states around the country who had come to help. I could hear their slow, southern drawl echoing over the intercom as the guys communicated about what to do next.

We dragged our brush to the curb. The kids filled leaf bags. We watched Pike inch closer. By 2pm they were outside our door. I wanted to hug them. I wanted to offer them warm cookies and hot drinks, except I had none. Our neighbor, after learning one of the guys collected souvenirs from every state he visited to help, gave them an old Connecticut license plate.

A man with a salt and pepper beard and sunglasses gave Ethan a little wave as he watched them work. Another man chatted with the boy next door about school and tossed him a bottled water. For some reason, that made me want to cry. I asked the man if a small branch resting on one of our wires would be a problem, and he promptly got a long pole out of the truck and poked it down for us. "There ya go, ma'am," he said. "Now that won't give you any trouble."

"Thank you soooo much," I answered, wishing I could convey how much I truly meant the words.

Our online notification was that power would be back on by 6pm. We went to dinner hoping to return to lights, but our street was still dark. We drove the next town over, which was also dark. Online via Dan's phone, they were now telling us power would be restored the next day, that they had run into more problems.

We considered bringing the kids up to Dan's parents house, since they were away in Maine. I began to wonder for the first time when we'd wake up and real life would begin again. I kept thinking of the verse that talks about God enabling us to do anything with His strength. "It's like having a jar of medicine with you," I said, trying to explain to Anna using a not-so-good analogy. "Sometimes you don't need as much. But there are days when you really need a lot of God's strength to get through. This is one of those times."

We drove home, defeated. Yet as we drove we noticed the lights were on closer and closer to our house. The intersection right nearby that had been dark for a week was working, and as we pulled into our driveway, for whatever reason, we saw the lights on in our house that had been on when the snowstorm first hit.

And then there was great rejoicing.

Today as I write there are still thousands of people without power in Connecticut. I pray that they too will soon return to life as we usually know it. But there are some things I still want to hold onto. I want to remember to say hi and chat with people I don't know just a little more often. I want to remember to appreciate the smell of clean clothes from the dryer or clean skin from a hot shower. I want to remember that we are not as invincible as we've convinced ourselves we are. I want to relish the silence sometimes. I want to sit in the dark and be still and just listen, and watch the tiny flame on my candle dance. I want to never forget my true source and provision. As we sang in that old hymn in church yesterday:

"Be thou my vision, O Lord of my heart,
naught be all else to me, save that thou art;
Thou my best thought by day or by night,
Waking or sleeping, thy presence my light."

Wednesday, October 26, 2011

The Art of Casting

The other day we attended Ethan's annual IEP meeting. This was our second and so many things had changed.

I no longer viewed the principal as the "ice princess" but rather as a woman with a strong personality who truly has our kids' best interests at heart.

The faces around the room were much more familiar, and they were all saying good things about my son.

Instead of politely arguing about placement in the ABA classroom, we were talking about Ethan's full integration in the regular pre-K class...his switching from a dedicated one-on-one to sharing an aide...the way he's a "role model" for some of the other kids with autism.

I went home feeling vastly relieved and grateful. Honestly, I was walking on the clouds for a little while. And then I decided to zero in on the one area in which he most struggles and has always struggled, the same area in which nearly every person on the spectrum struggles: social interaction and play.

Don't get me wrong. I didn't sink into a pity party or depression after an overwhelmingly positive review with his teachers and therapists. I wasn't shocked to hear he had NEVER initiated play with a classmate, that he struggles to stick with play activities, that he has to be encouraged and prompted. These things were expected. These things couldn't really take away from everything good about the meeting --

Except they did. Because within eight hours the hamster wheel was spinning in my head. If he's made so much improvement in other areas, if he's at or above age level academically, if his physical therapist is blown away by his progress over the summer, if he's shown so much improvement in his other therapies, then there must be a way to find exactly how to help him interact. To initiate. To overcome the obstacles he has in play.

I got on the internet. I posted on a few forums. I pondered social skills groups vs. gymnastics vs. play groups at home vs. consulting with a Floortime expert who could really tell me what to do. I questioned again whether it was better for Ethan to struggle with typical peers who would be better models or do an autism-specific group where he'd be more comfortable but possibly not get the interaction he needs. I thought and mulled and talked everything over with Dan who, as he usually does, summed it all up in his matter-of-fact kind of way:

"Deb. This is something he's always going to struggle with. That's what autism is."

I half-heard him. I knew he was right but didn't want to let go of my really deep thoughts.

In the morning, I was listening to a Christian speaker talk about the way we try to reason our way through everything. We forget about casting our cares to the One who can hold them all, to the one who holds all of the answers.

"There are times we have to look at a situation is realize, 'It is what it is,'" she said. "You can't always change it, but God gives you the ability to go through it."

On the way to do laundry in the basement, I plopped myself down for a moment on the dusty stairs. I put my head in my hands and felt myself wrestle with the burden of getting everything just right. I wondered why autism had to be such a mystery for so many families. I wondered how any of us could be thankful for having to admit we don't have all the answers.

Then I decided, once more, stop scouring the internet. To maybe just try a class and (gasp!) stop if it wasn't a right fit for Ethan. To let go of the analyzing. Again. To remember I'm not racing against time; that God has all the time in the world.

Twenty minutes later I was at school picking up Ethan.

"You'll never guess what Ethan did today!" announced one of his teachers joyfully. "He initiated play with one of his friends."

He asked a boy if he wanted to play with blocks. For the first.time.ever.

I know things don't always happen this way. I know we don't always get an immediate sign when we make a decision. But today, I felt as if Someone was up there giving me a wink.

I can't say much about the art of casting my care. I certainly don't have this down pat. But what I do know is that it is indeed a lot like fishing with a line. You end up casting again and again and again. And it's only when you leave that hook still in the water, rather than reeling it back to you, that you find what you were looking for.

Monday, October 24, 2011

Hide and Seek

The kids and are outside on an unseasonably warm afternoon. The sky is awash with cotton candy clouds and the towering maple in our front yard had turned golden. While the air is warm, the wind keeps whipping everything around, churning leaves into the air around us. The sweet, earthy scent of the dying leaves wafts by as the kids and I play hide and seek, and the game and the air and the leaves awakene a deliciously wonderful memory.

I have talked about growing up in Gilbertville, the town with more bars than stores. I've at times referenced certain parts of growing up that were difficult and painful (as with most people). But that's not the whole story.

Some parts of my childhood were absolutely perfect.

I grew up in the eighties, when packs of kids still roamed around small-town neighborhoods, when kids didn't do "play dates" but just went out in the backyard or to the friend across the street's backyard and played for hours. We built forts. We rode bikes without helmets down dirt paths. We found an old creepy rusted car in the woods. We played house under the cluster of crab apple trees and created elaborate lands for our Matchbox cars and Star Wars figurines that wound through our driveways...over stone walls...around flower gardens.

We were kids. We played.

We loved to play Hide and Seek. A big group of us would gather up in my grandmother's driveway, which was at the end of our dead end street. There would be heated arguments about who had to be "It" first, usually decided by (anyone remember this?) everyone putting their fists in the circle while someone started:

Bubble gum, bubble gum in a dish, how many pieces do you wish?

Then we'd hide. We'd hide in the garage and in the woods and behind the lilac bushes and behind the neighbors' cars and up in trees and under the steps. We'd hide while the sun was setting, praying our parents wouldn't call us in before we were found. We'd hide, chests heaving with anticipation, trying to quiet our breaths, and hear a scream and the pounding of footsteps as someone was discovered and tried to make a mad dash to home base or whatever we called it before they were tagged. We hid and in that moment there was nothing but our breath and pounding heart and the straining of our ears to hear if Someone was coming to get us.

We were absolutely, completely present in the moment. We weren't thinking about what happened at school that day or what would happen tomorrow. And when whoever was It jumped out from somewhere and spotted us and we had that feeling of our stomach jumping into our throat as we tried to get away, we ran and we laughed and we laughed and we ran and everything in that crazy moment was completely wonderful.

This is how I want to play today, decades later. This is how I want to live. Sometimes days go by, and they weren't even horrible days, yet I realize I barely laughed. Sometimes I catch myself saying "Hurry up," again and again to the kids, as if all we are ever doing is rushing to get somewhere. Sometimes when I work on the Floortime stuff with Ethan every fiber of my being just doesn't want to wants to read a magazine or do the bills or go online or wipe crumbs off the table. Sometimes even when I am playing I am thinking of what the teacher said or the doctor's appointment to schedule or what to make for dinner.

But then something taps on my shoulder and gently reminds me. The wind whips my hair into my mouth and Ethan announces he's going to count. I race up the hill and behind a tree and remember every good thing there is about being a kid, and that we shouldn't pack those things away.

Maybe, in fact, we need those things now more than ever.

Monday, October 17, 2011

Why I Say Something

I come across this discussion often in "autism world," which for me right now usually is online rather than with other parents I know (still working on that): Parents often debate whether or not they should immediately disclose that their child has autism, i.e. when they're at a public place like a park or library. A common argument is often No, because I shouldn't have to apologize/explain/make excuses for my child.

I get this. I get that we should not walk around immediately taking everyone else's opinion into account and feeling as if we have to divulge our child's "issues" with strangers in order to be socially acceptable. I get that sometimes we just don't want to get into the discussion, that sometimes people just need to deal with it and accept our kids at face value.

So far for me, though, that approach just doesn't work. Ethan is a kid who can just "blend in" if he's having a quick encounter with someone at the store or playing on the playground. But any time we're doing something that involves a bit more conversation; play time; one-on-one with another person or adult, like the hairdresser or the mom and her son at the Barnes & Noble train table or the play group at the library, I find myself getting into the autism discussion. In the process, I've realized two things:

1) People need to see what autism looks like and are often surprised at what autism looks like. They need to broaden their picture of what autism is, so they don't just think "Rain Main" or someone flapping their hands or banging their head on the floor. They need (and I need) to see as many autisms as possible to truly understand that saying about there being "No one autism."

2) Everyone seems to have an autism or special needs story. And once I open up about Ethan, their story inevitably comes pouring out.

When Ethan and I are out and about, and he's around other kids and I disclose that he's on the spectrum to other moms, I inevitably get one of two reactions. Either they say, "Really? I wouldn't have known" or they kind of nod and smile as if to acknowledge, "Oh! I knew something was off but that helps explain it better."

If my son is having a meltdown about something relatively inconsequential, am I sharing his background because I just don't want people to think he's a brat? Is it self-preservation? Perhaps, but I'm also helping them understand and see in the flesh that transitions are hard for people with ASD, or that they sometimes have fixations on things we might not understand. If my son is announcing, "That other kid needs to go away!" while he's playing at the train table, do I explain about autism because I don't want the other mom to think he's rude or that I blithely allow him to pronounce rude statements that might hurt another child's feelings? I suppose...but I also can take the moment to explain that he gets anxious around other kids and actually wants to play, but needs some time to warm up to the idea.

Our interactions leave people knowing just a little bit more about autism than they did before. That has to be a good thing.

As for the stories. I've been amazed at the stories. I tell the hairdresser about my son and suddenly she's telling me about her son, who is hearing impaired. I ask the librarian for some research info for Ethan's IEP and then learn her own child has Asperger's. There was the mom in Barnes & Noble who shared about her son's feeding issues and how she worried about him being small for his age...the mom in McDonalds who shared about her sister and nephew with special needs...the mom at the park and mom at the party who have brothers with autism.

Everyone has a story. Somehow, when I open my mouth and decide to share a bit of ours, they feel free to do the same. In the process, I'm reminded that there are so many of us out there facing challenges, that there are a million stories behind the quick smiles and surface conversations we exchange.

This is why I say something.

Friday, October 14, 2011

She Couldn't Have Known

She couldn't have known, after our ten-second exchange, that her comment would leave me with tears welling in my eyes. Good tears. Happy tears.

There's no way this mom of one of Ethan's preschool classmates could have known.

As I've mentioned before, Ethan is in a blended pre-K class of three-year-olds, some typical, some with autism, some with other special needs. He's actually surprisingly good about filling me in on little tidbits about his day. I'll hear about how he went to the gym. I'll hear about snack or the songs they sang. What's harder to decipher is how much he actually relates to his classmates.

Some days he'll say he doesn't want to go to school because they're "scary." Other times he'll mention knocking down blocks with a certain kid, or playing trains with another child. When we walk in each morning, though, he freezes when we see the other kids waiting in the hallway with their teacher. He doesn't exactly greet them with a smile and a hello. "Hi Ethan!" one boy I'll call B. called to him the other morning. Ethan just looked and stared.

Which is why I was so surprised this morning when that same little boy's mother walked by Ethan and I as we were approaching the school entrance.

"I have to tell you," she said in a rush. "My son was in there crying because he was sad thinking Ethan wasn't going to be at school today."

Then she was off to her car and I was off to drop off Ethan. He still didn't look his teacher in the eye or say hello. But all I could think about was this: for the first time, someone other than family or his therapists missed Ethan; was asking for Ethan; wanted Ethan's company. Yeah, it was a three-year-old, and maybe he was just cranky.

But maybe, just maybe, another child considered Ethan...a friend.

That's why for a moment my eyes clouded with tears, that quickly transformed into a smile as I drove away in the rain.

Wednesday, October 12, 2011

Notes from the Land of Cul-de-Sacs

Not long ago I read a story about a woman who was a teenager on 9/11, the day the planes hit the Twin Towers. Her dad worked in one of the towers and the entire family thought he was there that morning when in fact he had overslept. She talked about her relief, joy and guilt after learning he was alive, and reflecting on the years that followed she said something like, "It's not like we never fought again. As time went by I found that I still got mad at him sometimes over little things."

This comforts me. Her words soothe me because, although I am most definitely overwhelmed with gratitude at Ethan's progress and that he can talk and converse with me, and how I feel I can never take the little things for granted, there are times I just have had enough. I need a time out from the repetition, the interruptions, the obsessions. And while I am well aware and my heart hurts for those parents of children who are non-verbal, I think this is okay. I think it's all right to be human.

That being said, this is a sample conversation from a typical car ride, with me at the wheel and Anna and Ethan in the back seat:

Anna: So then my teacher told us to-
Ethan: Mom, what does that sign say?
Anna: -we had to do our writing journals-
Ethan: Mom, what does it SAY??
Me: Speed Limit 35, Ethan
Anna: so I wrote about butterflies and
Ethan: What does THAT sign say?
Anna: how pretty they are and then
Ethan: Mooom? Does it say "No outlet?"
Anna: MOM!! He keeps interrupting me!!
Me: Ethan, it says "Children Ahead."
Anna: So then I was writing-
Ethan: How do you spell "Children?"
Anna: MOOOM!!

I sometimes feel as if I am a two-headed creature, carrying on conversations out of both sides of my mouth.

When I'm alone with Ethan, on the way to and from school, right now it's all about the signs and cul-de-sacs.

We talk about the signs leading up to the school. "No parking!" Ethan announces. If a car is in the spot, he yells, "They broke the rules!" He laments the missing F on the "Fire Lane" sign. He wants to touch the signs. He wants me to read the "Turn Cell Phones Off" sign at the school's front entrance. Or spell it. Or both.

Going home, he looks judiciously for yellow "No outlet" signs posted on top of the green street signs. "There's one!" he yells with joy. "Can we go down there?"

I am (proud?) to say we have now explored nearly all of the dead ends on our side of town. We've driven down streets I never would have considered exploring. None of them are all that interesting, but that's beside the point. We've determined together that Ethan likes cul-de-sacs but not dead-ends (which he calls "scary"). And before you say "Cul-de-sacs ARE dead ends," please note that in our world, cul-de-sacs are fun merry-go-rounds we can turn around in, while dead ends just stop abruptly.

All of this cul-de-sac talk actually had me pondering why, in Massachusetts (where I grew up) the street signs read "Dead End," while in Connecticut they say "No Outlet," as if they are trying to sound more civilized and less blunt here. Yes, these are the things you think about when you are winding around a cul-de-sac while your child yells "Wheeeee!" I also remembered that I actually grew up on a dead end street. Not a cul-de-sac, mind you. This was working class Gilbertville, Mass. My dead end concluded at the trash cans for my grandmother's apartment building just up the street from our own.

See, I started writing this grumpily, but now I'm smiling. Perhaps it's because the kids are in bed and all street conversation has ceased for the night. Or maybe because hey, at least we're conversing about something. Ethan IS letting me into his world. If we could just crack it open a little wider, that'd be great. If we could do a little more relating and a little less spelling, that'd be nice, too. But then again, this IS how he is relating. So for now I'll go with the flow, and when I need to, the Excederin, at the end of an especially long day of sign identification, spelling bee training, and dead end exploring.