Wednesday, July 28, 2010

What The Ropes Taught Me

Dan and I have this thing about ropes challenge courses and zip lines. At first glance, you'd think it is so NOT us. We both hate exercise, don't spend as much time outdoors as we should, are unfortunately not that in shape (although we both would like that to change). Yet a few years ago Dan did a course up in New Hampshire and fell in love.

The first one I did was a pure zip line course, up in Charlemont, Mass. last September. It happened to be the day after Ethan was officially diagnosed, and you could say we were both in strange moods. I don't want to say I was in a haze of denial or shock, because I had known what was coming, with Ethan. But I was not myself on that gorgeously clear, bright day. Not myself except on the zip line, flying sometimes 600 feet through the air in the trees, from one platform to the next. In the air I forgot about the booklets at home that I'd just been handed, about the phone calls I needed to make.

The next month was our anniversary and we took on a ropes course up near Lake George. By the end of the day I was sweaty (despite the unseasonably chilly weather), sore, and even bloodied, but felt glorious. There was something about tackling a challenge. While I never made it to highest level course, and practically collapsed after the second-highest level one, I accomplished more than I thought I would. I became adept at hooking and unhooking myself, of attaching myself to the zip lines and letting myself fly. I stood precariously on platforms 50 feet off the ground and waveringly walked a tight rope type lines and wobbly roped bridges. At one point high off the ground I fell onto a very narrow track of two wires and panic started to set in. For a moment I thought they were going to have to come rescue me. "You're okay!" Dan kept encouraging. "Remember, you're hooked in. You can't really fall." I repeated those words over to myself as I struggled to regain my balance and figure out a way to maneuver myself to the next platform. I was shaken, yet exhilarated.

Last weekend we checked out another place just over the western Mass. and Connecticut border in New York. I felt my usual shakiness return -- mostly involving the fear of me doing something completely airheaded, like not hooking myself up correctly, and plunging to an untimely death. But once I got over that and regained my confidence, I was ready to tackle that thing. Every time I do one of these courses I look to the next level, or the level after that, and think about how incredibly impossible it seems. Yet when I turn my attention to the task in front of me, and then the next, and the next, by the time I get to that stage, it's not as bad as I thought. It may be brutal, but not impossible.

At one point we stood on a platform watching someone else on another course gain the confidence to jump onto a trapeze-like swing into a wide rope ladder that they had to grab onto after letting go of the trapeze. "It's all about the illusion of fear," I said to Dan. "That's what these places are all about. There's no real reason to be afraid, because you're always connected." Each person is latched in not once but twice to the wires and can't possibly plunge to the ground, but when you're looking at how far down it is or how difficult it is to balance, it's so easy to forget that.

While I sweat up in the trees on Saturday I realized how similar it was to my walk with God and my walk in life. I thought about how easy it is to become paralzyed by fear when we only look at our circumstances and forget that we have a God that won't ever let us fall. Even in death, he doesn't let us down. I thought about how often we look at obstacles and immediately deem them impossible, not realizing that if we just take one step at a time, no challenge is as daunting as it seems. God never asks us to travel from point A to Z, just A to B, then B to C. And so on. I saw that course as life...full of adventure, pain, stress...moments when we crawl and others where we soar with the wind, unencumbered. We come through changed, battered, weary. Yet when I challenge myself, when I face my fears on the course and do everything I can possibly do and attempt what I think I cannot, when I push myself to the limit and know I've tried my hardest, even if I didn't completely succeed...that is a life well lived. That is the best kind of adventure.

Thursday, July 22, 2010

Celebrating Ethan

Someone sent me the best article the other day. It had run in Ladies Home Journal, and was, I kid you not, an article called "Accepting Ethan," written by a mom who's son has autism. The article hit me and hit me hard. I read it three times. I saved it to read many more. In it the author talks about the search, back in the early days (her son is now 13) to make her son lose his diagnosis. The pushing, the struggles, the drills, the tears. Her son is a teenager now and not "cured," but she's learned that the best thing she's ever done for him was learn to accept him just as he is.

Certain parts of the article jumped out at me. This in particular: I don't ever look back and wish I'd done less when Ethan was younger, but I do wish I'd understood sooner the battle was not an all-or-nothing one. I wish I'd learned earlier to see and celebrate the small victories when they came instead of holding my breath for the bigger ones.


Last night in bed I kept thinking about the article, about how she recounted desperately trying to teach her son the basics of pretend play, immersing him with flash cards to develop language, setting goals and writing lists. And always, when he reached a goal, there was a but. Sure, he can do this, but what about this? Always the next milestone. Always a carrot dangling out in front.

I saw me. I didn't like seeing me.

At about 2:30am I realized I was wide awake. So I got up, went downstairs, and before I knew it, started to cry. Just a few hours before I had peeked in on the kids and thought about how quickly they the moments, the years just zoom by. And as I lay downstairs on the couch in the middle of the night with tears streaming down my face, I was seeing how so much of Ethan's little life had been overshadowed by my fears, by the way I saw first everything he wasn't doing, or did late, or didn't do in the typical way.

The fear was always there, like a whisper. Like a cloud. And so when he wasn't smiling yet, I worried. And when he smiled late, I worried. When he grasped things early, I was happy...not so much because of what he had learned but rather because it assuaged my fears. I took him to the doctor when he was five months old, worried because one foot turned out. I drove away from Target after a photo appointment crying because the guy could not get him to smile. At age one I wondered why he seemed so "out of it" compared to Anna at her first birthday. I celebrated his first words briefly and then fretted because they were all objects rather than people. I kept wondering, thinking, brooding, and all the while, I was missing. Missing adorable baby giggles. Missing the simple pleasure that comes from smelling baby shampoo and lotion on softer than soft baby skin. Missing his perfect smallness.

Then, after getting his diagnosis, the gnawing fear was replaced by a gnawing urge to do something, anything, everything, to try to make him better. Try to fix him without technically thinking the word "fix." Always thinking of the next thing we could try, the next achievement, the next milestone to reach. Always remembering where other kids were in their development and where he should be. And so, instead of the sheer joy that could have come from realizing his vocabulary had blossomed from about 30 words than more than 200 in just a few months, I settled on the fact that he was so good at labeling or requesting but not so great at communicating. And while Ethan has figured out his shapes, knows some letters and numbers, and is starting to learn his colors now, at just 2 1/2, I often shove those achievements aside because he needs to figure out pretend play. He needs to learn how to play with others. Whatever he's accomplishing, it's never quite enough.

At least, that's how I've felt, deep inside. Last night something changed. Last night I sat with regret and felt grateful that I could learn these lessons now, while Ethan is still a little one. After awhile I dried my tears and decided that I could, right there, relive all of the sweet and successful Ethan moments that had previously been overshadowed. So I closed my eyes and saw his gummy grin as he beamed up at me from his bouncer seat at eight weeks old, the day he decided to start really smiling in earnest. I saw his little self lying on the bed, kicking with joy as he grasped at a balloon that had drifted up on the ceiling over his head. I remembered how ticklish and giggly he was at the doctor, and saw him playing with his musical toys and banging his hands to rhythm (with Ethan, it's always been about the music), and the way his entire face lights up when he sees me, and how incredibly quickly he picks up a new skill, and him belting out "Fire truck, fire truck, I wanna ride on a fire truck!"

In my mind I celebrated with Ethan. I celebrated Ethan, without all of the conditions that had always been there. And somewhere in the middle of all that, I drifted off into a sweet and weightless sleep.

Monday, July 19, 2010


We were attempting to get the kids into bed. Ethan was screaming because we had left the town pool ("Pool water! Pool water!") because it was bedtime. The screaming was magnified by about 10 from his usual tantrum because he hadn't napped all day. I was trying to speak calmly rather than lose my temper and yell again, as I had earlier when he would not stop turning the air conditioners and fans on and off. The sheets still weren't on the beds because it had been too hot in our house to run the dryer and make it hotter. Or I had just forgotten. Leftover dinner dishes were still all over downstairs because Dan had rushed off to a meeting and the kids and I to Anna's swimming lesson; which had led to our fun foray in the sprinkler pool after Anna's lesson; which had led to Ethan's blood curling, overtired tantrum on the way home and up the stairs to bed. Anna was begging for a peach as she'd been whining for food, drink, and more play time all day. I snapped at her again and felt guilty, wondering if this is how she'd remember her childhood, with a haggard mom who could have been a lot more joyful.

I somehow whispered to her as I tucked her in, above Ethan's screams, "I'm sorry for snapping at you today. I love you. Sometimes mom just has a loooong day."

Before I could leave the room, she wanted to give me a hug, and another. Ethan's screams became choking sniffles. His eyelids looked so darned heavy. My girl squeezed me tight and said with a grin, "You're the best mamma in the whole world." Then hugged me again. And again.


Saturday, July 17, 2010

Someone Finally Said It

Awhile back I wrote about how two little numbers and discovering what they meant had brought me down into a pit that had lasted several days. The numbers were 3 and 6, or 36, and that was Ethan's score on the CARS (Child Autism Rating Scale) assessment at his initial evaluation by a developmental pediatrician. It was a number I hadn't dared or had been to scared to look up until this winter, when I learned that a 36 was one point away from scoring in the severe category. Mild autism was considered a 30-33.

Since then I've hated CARS and I've hated 36. Thirty-six tries to scream at me about all Ethan may not be able to accomplish, or how far from his "typical" peers he truly is. Since then I've also had numbers of people tell me they don't think Ethan has severe autism, that it's more on the mild side. Sometimes I've thought they were just being kind; other moments I've believed them. There are days when I ask myself why it all matters so much, that I wonder if I've put some sort of conditions in my mind, like maybe things won't be so bad, if he only has autism "a little bit?" And many times I don't think of it at all, because I can't live with the number 36 marching through my mind. I can't be pulled under water by the findings of a literally one-hour encounter Ethan had with a stranger.

There is this thing out there with autism, though, about high functioning vs. low functioning. I'm not even sure what specifically distinguishes the two camps. Does low functioning mean non-verbal? Is a high functioning child one who is mainstreamed in school? Or relatively independent? Is a low functioning person with autism always the steretypical one rocking in the corner, banging his head, locked in another world?

Even though I can't always quite define why it makes a difference, there has always been a part of me that wanted to hear someone say Ethan was high funtioning. I admit it. I craved the words. Most of his therapists just haven't spoken in such terms. Which has made me wonder: was that because they considered Ethan low functioning, but didn't want to say so? When I met with some of his potential preschool teachers in Windsor, from my descriptions of Ethan, one of the women said in reference to something, "Oh yeah, the high functioning kids are often like that." But they haven't met Ethan yet. We go to a play group with a boy who to me is barely on the spectrum. I look at him and think, "Well, THAT'S high functioning," and feel a bit sad, yet again, not exactly knowing why this matters so much.

Well, on Friday Ethan was at his outpatient OT appointment. Every one of his therapists has commented on how smart Ethan is and how quickly he learns and picks up on things. But this time, as we were talking about insurance coverage for future appointments, Diane said, "Well, out of the kids I see on the spectrum Ethan is definitely on the higher functioning side."

There was a part of me that wanted to yell, "Yes! Finally!" There was a part of me that felt a little relief. And there was another part of me that felt all sorts of mixed up, jumbled feelings. They are the same kinds of feelings I have now when I find myself feeling really proud of Anna for how incredibly smart she is (she picked up reading with almost no help and scored in the 80th and 90th percentile on most of her test scores).

Ethan has made me stop and think. His situation makes me question my values and motives, and to want to make them more pure, more true. I know there is nothing wrong with being incredibly proud of both my kids and their accomplishments. But I never used to think about when I might cross a fine line over to murkier waters...when I don't just take their accomplishments but line them up side by side with their peers'; when I go beyond feeling proud to feeling more...important...more valued, or that my kids have more value, because of their accomplishments.

I feel as if I must always ask the question: what if Ethan had scored a 40, or a 50 on the CARS scale? What if I had heard low functioning rather than high functioning murmured politely, discreetly in my presence? What does it really change? What does it really change?

Friday, July 9, 2010

Songs in the Car

Yesterday was just one of those days that put me in one of those moods. The whole week has been unbearably hot and we have no air conditioner downstairs. Ethan's spent a lot of time turning fans and air conditioners on and off. I haven't gotten any kind of household chores done and yesterday spent forever in the car, traffic, humidity, going from appointment to appointment, dropping off Anna and picking her up again, feeling Ethan pull my arm half out of its socket as he tried to run from my grasp in McDonalds, the art studio, the parking lot.

At home as the sweat poured off me I tried to get Ethan to play. Sometimes I feel as if I am always trying to get Ethan to play. Sometimes I listen too closely to the little voice that bubbles over with frustration rather than compassion, wondering why play has to be so hard for him. In those moments the grace falls completely off me and engaging him becomes even harder.

"Do you want to do a puzzle, Ethan?" I asked, as he ran to another fan. "What about a book?" Dan was blissfully playing a video game and Anna was watching. Ethan had been but decided other things were more important. "The sink is done," I told him for what seemed like the millionth time in the bathroom. Then he went looking for the garage door opener.

I just wish he'd dump out his toy box and sit there and play, I thought. Then my frustration boiled over into tears as he went goofing off with the fan again.

"What's wrong?" asked Dan.

"I just want him to play with us!" I wailed. Of course, Ethan does play. When the house isn't sweltering or the TV blaring and lots of activity around, Ethan has an easier time. Often with puzzle-type games or musical toys. Sometimes other toys, although with any of the imaginary play type toys, it's very much repetitive or learned rather than imaginary play. He plays with his therapists. He loves playgrounds. Of course I meant I wish he'd play without all of this work on my part. Play appropriately, whatever that means. Play and learn.

"He does play sometimes," Dan said slowly and softly. "But...that's not Ethan." I am so often amazed at his even-handedness, Dan's willingness to accept what is because, as he said to me later last night, what other choice do we have?

When I'm in a mood, I'm impossible to be around. I knew I needed another one of my drives once the kids went to bed or I'd just sit around the house spewing and thinking toxic things. So out I went into the cool of the evening, asking God to show me something, so mad at everything and especially myself. Mad for not just loving Ethan rather than trying to fix him. Mad for crying in front of Anna, worried I was scarring her permanently. Mad that I was mad rather than accepting the grace available to me. Wondering why sometimes that grace is so hard to find when it's really not supposed to be.

God talks to me in rather strange ways. While vacuuming and gardening, for instance. And when I'm on one of my drives in the car, God speaks through songs on the radio and signs and bumper stickers. Go figure. So there I was, driving past cornfields and tobacco barns, asking God for something. He's not always neat and tidy. Sometimes I ask and hear nothing. But more often than not something happens and I know it's Him, even when I'm flipping through the channels on my XM radio.

On the 90's station, an old song from Oasis, "Wonderwall," came on. I'm a sucker for all of that nineties grungy stuff. The chorus is the type that stays in your mind: Maybe you're gonna be the one that saves me/you're gonna be the one that saves me/you're gonna be the one that saves me...

Over and over I heard those words, and I wondered: who is saving who? Do I think I have to "save" Ethan? Am I living as if it's all up to me, when maybe the tables are actually turned, and he's the one who's supposed to save me from so many ugly parts about myself? Or is this the way I approach God, with a half-hearted, I'll-see-it-when-I-believe-it mindset? Maybe He's strong enough to deliver me from myself. But I'm not sure. Or I'm not ready to completely dive in and abandon myself to Him.

Just as the sun had set and it was really turning from dusk to dark I came across one of my very favorite songs by Jars of Clay, a song that had slipped my mind for awhile. As soon as I heard it, I knew it was for me. With the windows rolled down, I cranked up the music and sang my soul out. These are the words:

Give to the wind your fear
Hope and be undismayed
God hears your sighs and counts your tears
God will lift up, God will lift up, lift up your head

God will lift up your head
God will lift up your head
God will lift up your head
Lift up your head

Leave to His sovereign sway
To choose and to command
Then shall we wandering on His way
Know how wise and how strong
How wise and how strong
How strong is His hand
To life up your head

Through waves and clouds and storms
He gently clears the way
Wait because in His time, so shall this night
Soon end in joy, soon end in joy
Soon end in joy, soon end in joy
Soon end in joy, soon end in joy
Soon end in joy, soon end in joy

God will lift up your head
Soon end in joy

Nothing felt different, nothing had changed. And yet everything had. Today's a new day and no it hasn't been perfect. But I know I just need to keep singing. Keep living. Keep trying. Keep leaning.

Monday, July 5, 2010

Words vs. Communication

So, Ethan has a new speech therapist he's seeing on an outpatient basis, and she's great. She asked a few weeks ago for me to do an inventory of all of Ethan's words. It took me an hour and when I was done, I had a list of almost 250. He has many two word phrases as well and has produced a few three or four-word phrases, too.

I stared at that list and felt a mixture of feelings. One was joy at how much his vocabulary has exploded. Nearly 250 words! This after being at maybe 35 when we started, and no word combinations. I remember asking the therapists if Ethan would talk. I was still worried about that when we started. Now I know my boy can and will talk. He already is more verbal than my brother, who is 28 years old. That is a sobering thought, truly. But it also helps me to see how different Ethan and Andy are and how completely varied autism can be.

And so I marveled at the length of the list and everything he's picked up, and at the same time I felt frustration, mixed with a lightbulb on kind of moment. There it was, all laid out in front of me. Ethan has quintupled his words. But words are NOT communication. Or maybe I mean, they are just one part of communication. He's labeling things, he's using words to get his needs met, for sure. That is wonderful and I'm so grateful! But having words does not make him social and does not mean he particularly likes to share his experiences with the rest of us.

These are things I never would have realized about communication, if I hadn't seen Ethan living this out. It's just like play, and joint attention. The social aspect of our lives and learning is so complex, yet we don't appreciate it, and don't even notice the leaps our neurotypical kids are making effortlessly. Things like imitation...reciprocating back and forth...having the inner desire to want to point out something to your parent or to show off a toy that you love. Anna did these things and I had no inkling really, of what she was actually accomplishing.

And so where do we go from here? I'm not exactly sure, but some of the pieces are falling into place in my mind. I know I want to focus not so much on him learning specifics as making a connection. I know we can't spend all of our time in therapy and need some real life experiences to broaden Ethan's world. I'm grateful it's summertime and Anna is home because she is one of Ethan's greatest teachers without even trying. I know we need to play more because really, play is how kids learn. I am not really a naturally playful person. With Ethan, I get the greatest chance of my life to leap in and approach the world as a child again, to go back to each of those little steps that Anna leaped over and, in time, savor. every. one.

Thursday, July 1, 2010

Tonight on the Green

I had this whole post typed out last night, and at the last minute I hit delete accidentally. Don't we all hate when that happens?? And so I sit here ruminating...hurting a little inside...smiling a lot inside...feeling at peace but restless, too.

I took Ethan to the town green this afternoon just to walk around. He's had this stomach thing going on where he's just not eating much and having messy diapers and I thought I'd push him in the stroller rather than make him walk. We looked for the train, which failed to arrive; watched the geese at the pond on the road to Loomis Chaffee; had water from the fountain splashed on us from the force of a huge wind gust; quickly checked out the Farmer's Market. I love Windsor on days like this and appreciate the small joys of living in a mid-sized town rather than the city, as I did for 18 years.

I hadn't realized tonight was the first summer concert. People began to arrive on the green with their chairs and picnic items. Kids were gathering early for a story session before the concert began. I looked out at the families and felt so many things churning around. The first thing that often hits me is the old stuff. Hardest of all is to see kids Ethan's age or younger doing things he can't or won't do (i.e. sit for a story; hold a bit of a conversation, back and forth, looking at you). When I keep my eyes on the other kids, the tendency is to feel a sadness as the ones even younger catch up and then leap over where he is developmentally. And when I look just at the little families gathering on blankets my tendency is to jump into, "That's what I wanted. A neat tidy little family that can do things together without complications, without stress, unlike the family occasions of my childhood."

That is my tendency, I have to say. That's where my mind wants to go. But tonight. Tonight, past the achy feeling and everything I can't necessarily change, I looked out at the people on the green with different eyes. I saw the man in his forties who seems to be a little slow, who I always see walking around town and talking aloud to no one, and said hi. I wondered about his life as he sat eating and watching the fountain. I saw the little girl with Down syndrome running on the grass as the music began. I watched the mentally challenged folks from the group home arrive with their chairs and sit down to relax and listen to the music. One woman got up with one of the group leaders to get some ice cream, her body bopping in unusual ways, her face full of smiles anticipating her treat. When I forget my feelings and long-held desires and preconceived notions I am better able to see people who I used to see past. Or who I used to pity without thinking I pitied them. I am thankful for this new set of eyes.

They're just green apples, I was thinking, thanks to my friend Amy. She talked about a mentor who had said people with disabilities are more similar to the rest of us than we perceive. It's like the difference between a red apple and a green apple, rather than an apple and an orange. They're people, and they have likes and dislikes and there are things that move them and things that hurt them. The details may be unconventional, that's all. Green apples.

The story reading with the kids was going on at the same time as the sound check. It'd be so nice if I could get Ethan to sit and pay attention for a story time type thing, I started to think in my usual downtrodden way. I looked at the kids on blankets listening to someone try to read a book over the blare of a guitar and then Mamma Bear kicked in. He's not ready for that yet and you don't need to get bothered by that, I told myself. Don't expect a kid who loves music and who has supersonic hearing to sit and listen to a boring book while the music is playing. Get him over to watch!

And so we went right up close to the sound check. "Drum! Drum done!" Ethan was calling. Drums are his favorite and they hadn't really done much of a check for the drums. He sat right there with the speakers blaring and watched the keyboard, guitar and saxophone. He listened intently while the lead singer did the mic check. We walked around a bit and when the concert began we watched them launch into oldies hits that got everyone bopping. Ethan was shivery from the fountain, tired and hungry, and asked to go several times. But when I asked if he wanted to go home and began to get up, he kept glancing back at the stage. "La Bamba" kicked in and he started dancing with his feet while in the stroller, all smiles. Every time a different instrument played, I'd tell him what it was. I tapped out rhythms for him. My boy loves music and rhythms and patterns and sound. He could be a sound engineer someday.

"Find out early what their strengths are and help them develop them," Temple Grandin had said in a video I watched online the other day. Temple Grandin, the most famous person with autism in the world, who still doesn't like to look people in the eye but has distinguished herself in the field of cattle handling, in addition to the field of autism.

And so we sat and listened for a bit, me and my boy who loves the same songs I do, who taps out the same beats at the same moments. He's not potty trained like Stella who's four months younger than he is and no, he's not going to sit still and listen to story time. We can't go to the fireworks yet and I'm not sure about a 4th of July parade. Maybe, if we don't have to wait too long. Maybe can't isn't the right word. Maybe the questions are: Is it the best thing for him at this time? And if the answer is yes, then how can we make it work?