Open Ears

Anna and I took a little trip to New York City yesterday for some "girl time." This was her first trip to the city and even her first on a train. I wondered how it would go, post-blizzard in the city and coupled with the fact that Anna tends to whine about the cold. I needn't have worried. My girl held up well. I found it rather amusing that she found a huge flock of pigeons on the sidewalk in Times Square just as enthralling as Times Square itself -- there were all sorts of idiosyncracies like that about the day. She didn't mind the crowds in the stores but was happiest standing watching the skaters at Rockefeller Center. Out of all of the extravagance at Toys R Us, she most wanted to buy a little $4 "Squirmel" toy that squiggles when you pull its string. She made note of statues on buildings that I never would have seen but didn't seem that impressed by skyscrapers. It was a good, unpredictable, flurry of fun and busy-ness kind of day.

On the way there I thought I should at least try to talk a little bit about why we were getting away, besides, of course, that it was just a fun thing to do.

"You know Anna," I began, "I really wanted to take some time with just you because I think it's important that you have my undivided attention sometimes." No sound from the backseat. "I know sometimes we have to give Ethan extra attention, and that must be hard for you." Still nothing. "I just want you to know how much we love you and that you are special, too. This is your day...anything you want to talk about, any questions you have, go right ahead."

I let the silence hang there. I think I heard an "Mmm-hmm," or something of that nature. Then. "Mom -- how long until we get to the train station?"

So much for our deep discussion on life as the older sibling of a brother with special needs. I suppose it wasn't the time, or the place. This is what I don't get about Anna -- she doesn't talk about how she feels, most of the time, about anything. And I don't know what's going on in there. I honestly cannot tell if she's holding things in, or doing just fine, or if she's too young, or if she's just not as sensitive as I was as a child.

That's the thing I always have in mind -- my childhood. Sometimes I wonder if I try too hard, overanalyze too much, thinking of the way I grew up and how I just didn't voice everything that was swirling around in there, everything I felt about Andy's situation. So with Anna, I try to leave those doors wide open. Talk to me, sweetie. Please let it out, I'm always thinking. So far, I'm not hearing much.

A part of me wonders if maybe this is because Ethan isn't all that different, particularly to a six-year-old. He talks to her. He plays with her at times. He's not standing naked in a corner, moaning unintelligble sounds. Maybe Anna just doesn't see all of the differences between Ethan and other kids. Or maybe she just doesn't see them yet.

Maybe this is a path we're not ready to walk down. But I want to do everything I can to be ready. And so I spent the day yesterday with open ears, even if Anna didn't give me an earful. Except to exult about the catacombs of Grand Central Station, the My Little Pony car on the Ferris Wheel in Toys R Us and the zillion colors of M&Ms at M&M World in Times Square. And of course, those pigeons.

Anthony

Ethan's class had a party the other day. Not a Christmas party, mind you, as this is a public school, but some kind of "festive gathering with cocoa."

Ethan didn't understand why I had picked him up from school at 11:30 only to come back with him for the party at 1pm. The room was crowded and full of parents. Some of the kids were making ornaments or decorating cookies. After awhile Mrs. Mullin gathered the kids on the rug, then got up and put her arm around a little boy a bit older than Ethan, who was holding a cane.

"Everyone," she said, "this is Anthony. I talked to him a little while ago and he said it was okay to tell you all that he's blind. He can't see anything. But even though he can't see, Anthony has other special talents, and he wants to share one of them with you."

Some of the aides were pushing a large keyboard into the room. Anthony sat down in front of it and you could sense he was at home. The room filled with expectancy, and he began to play "Jingle Bells." All of the little and big voices that could joined in:

Dashing through the snow
In a one-horse open sleigh
O'er the fields we go
Laughing all the way

Ethan sat mesmerized, watching Anthony, who played not in a savant, blow-your-mind way, but as a child who loved music and who had practiced and who was very good. Anthony sat rocking like Stevie Wonder as he pounded the keys, and I wondered if was the blindness or his autism or whether he was just feeling, soaking in the music with every part of him.

As Anthony played he was no longer the boy I'd noticed sitting hunched at a table, leaning over a musical toy, face almost pressed against it, trying to hone in on the sounds from the toy to escape the sounds of chaos in the packed room.

He was sharing his gift.

And although it had been a hectic week and hectic day and Ethan seemed stressed and I was starting to feel holiday fatigue, as we belted out "Jingle Bells" while Anthony played, everything was absolutely perfect.

A V-8 moment

This morning I was lying in bed thinking over the weekend and literally had a V-8 moment. If I had been awake enough to slap myself in the forehead, I probably would have.

I had been thinking over Saturday, when we celebrated Christmas with Dan's family. Christmases with Dan's parents are always fun and sweet but also very hectic due to the fact that we celebrate in a pretty small space. Their ranch home may have felt downright spacious back when Dan and I were first dating and even when Anna came along it wasn't bad, but now that there are four kids ripping thing apart and toys everywhere, it's a little hectic. I can only imagine how it will be when we throw Denise and Mark's baby #3 into the mix in April.

Christmas had left me feeling a bit frustrated and discouraged. There's nothing like the holidays to bring out all of the quirks in those with ASD. Ethan kept running to the basement to comment on the washer and dryer. Then he wanted grampa to flip him over and over. He managed to focus on opening a present with help but couldn't find the focus to play with anything or even really play with his cousins. He didn't want to eat. He was literally running routes, like a football game...the bathroom (but not going)...Grampa for a flip...the basement for more comments on the washer and dryer...over to the computer to try to turn on the firetruck song.

Driving home that night, I felt exhausted. I didn't really think of how Ethan probably felt. The change in routine. The unspoken social expectations (you will open a present, acknowledge it with excitement, play with it later). The junk food and noise.

Instead I felt wistful, and then I felt guilty for feeling wistful. Sometimes I think the best gift I could give to Ethan is to stop expecting him, even if it's only subconsciously sometimes, to act like everyone else.

This morning I lay there in bed and my V-8 moment came when I realized I didn't even try to give him a break from it all. A sensory break, that is. That could have been what part of the basement obsession was all about. At one point he cried when we took him back upstairs. Duh. The basement is quiet. Calm. Free of clutter. He probably saw it as a safe haven. I could have spent a little time down there. We could have gone into one of the rooms down there and played a little game, and even invited the cousins down to play. Duh.

There are so many times with parenting when we just have to check our "selves" at the door, don't we? All I was thinking about was MY wants, MY needs, MY expectations. I think our kids can sense that, sometimes.

That reminds me of one of Ethan's presents, which he barely acknowledged. He got a lego toy with a firetruck/fire station. It's for ages 4 to 7. Ethan doesn't care for blocks except to build towers or bridges, and he certainly wouldn't understand the directions to build this thing. Pretend play is hard for him. Dan put the toy together Saturday night and I sat there looking at it trying to picture Ethan playing with it appropriately. This happens often. Recently my mom asked if I wanted to give away the toy food in Ethan's play kitchen to his cousins, thinking he probably wasn't going to really enjoy playing with it.

Part of me gets discouraged, but I keep hearing this voice whisper, "He's not playing with it...yet. Give him time." Yes, there are certain toys that he'll probably never enjoy, but I almost have to see my son in a couple of ways. Academically and with his gross motor/active-type play skills, he's basically three years old. But socially, creatively, he's closer to 18 months or two years old. And that's okay. So for now we will play with the firetruck lego toy by singing the firetruck song and opening the garage door and letting the truck go in and out. He got that. He liked that, for a few minutes.

I'm not going to force him, but I'm not going to give up on him, either. And I HAVE to remember what he's struggling with first, before I think of what I want him to do or not do. Why I am still telling myself this, so long after his diagnosis, I'm not sure. But I think it has a lot to do with acceptance.

Love you, little guy.

Never the Same Way Twice

I had heard the horror stories. I'd heard about the child with autism who would eat only off a certain plate or drink from a certain cup (never mind the boy who would only, and I mean ONLY, eat pretzels and soda). I'd heard about the mom who always had to drive a certain way to school or risk a tantrum and lots of stories about kids who, while being not very verbal, could recognize brands and logos a mile away and would NOT let you buy this type of macaroni and cheese or that type of juice.

I'd heard it all, so from the beginning I've tried to always subtly "bump" Ethan out of his little routines. He has this thing, for example, about shutting his own door when he gets out of the car. Not an issue, one would think, but I can always feel when it's becoming an issue. Usually that's right around the time he starts shoving me aside and saying, "Ethan close it!" Just a dose of little ego, one might think? Yes and no. Would a typical kid, when denied the opportunity, then cry for five minutes or even ten? Maybe, but probably not. I just seem to have this "sensor" that goes up when I can feel he's getting obsessed, and then I know: time to change it up.

"Mommy's closing it this time, buddy," I told him yesterday when we got home from school. I could see his face crinking up into the pre-sob pose. Once I shut it, the tears and wailing began. I picked him up as a fumbled with the key to get into the house. "It's okay, Eth," I whispered in his ear, rubbing his back. "Sometimes mommy just has to do things that are going to help you. I know it's hard."

In a flash, suddenly my son was ME. I could see distinctly the way I whine and sob and lament because things are different, because I'm being stretched, because it's not comfortable anymore (just see my "Hello and Goodbye," "Painting Pictures of Egypt" post).

It reminds me of one of my favorite moments in the Narnia books -- in Prince Caspian, to be exact. Lucy has finally reunited with Aslan, the great lion. The last time she'd seen him, he'd swooped in and attacked their enemies and everyone essentially lived happily ever...for awhile. When she first sees Aslan again and finds out this time he is expecting more of her, they have this exchange:

"Oh dear, oh dear," said Lucy. "And I was so pleased at finding you again. And I thought you'd let me stay. And I thought you'd come roaring in and frighten all the enemies away -- like last time. And now everything is going to be horrid."

"It is hard for you, little one," said Aslan. "But things never happen the same way twice."

This is what it means to grow. And the next time I dare to lose too much of my temper with Ethan, when he is reluctant to budge from familiar territory, this is what I must remember. He's not the only one who has trouble at times with inflexibility and changes in routine.

"Aslan, you're bigger," Lucy says to the Lion, just a bit earlier in the story.

"That is because you are older, little one," he answers.

"Not because you are?"

"I am not. But every year you grow you will find me bigger."

And the more we learn, the more that is expected us. We can hear it said a million times, we can know it, but that doesn't make living it any easier. There's no doubt about it, whether your 3 or (gulp!) almost 36 -- stretching hurts.

Through the Valleys

Yesterday was a good day.

I could write about breakfast, when for the first time ever Ethan showed an interest in my cooking and wanting to help crack an egg and stir pancake batter. Or the trip to the Christmas tree farm where the kids wandered through the "forest," pointing out Charlie Brown-type trees, tripping over the dead brown grasses, jumping off freshly cut stumps. There the way Ethan curled in daddy's lap, cuddling and commenting as Dan played the "Angry Birds" game on his phone and the excited exlamations when the lights went on the tree: "Chris-chris lights!" There was my sweet girl in her polka-dotted dress and red bow in her hair singing "Away in a Manager" angelically in front of hundreds of people and getting it just right, and even the way she kept stepping out of her slightly-too-big sparkly shoes on her way up to and off of the stage. There was Ethan sitting through the entire Christmas show at church, albeit not perfectly, but content to sit on Grampy's lap and his comment after each song, "More song coming soon." There was Grampy, Dan's dad, bouncing Ethan on his knees and helping him wave his arms to the music, like a conductor, working to keep him engaged and happy so that I wouldn't have to take Ethan out into the foyer and miss any of the show. There was all of it wrapped into one big bundle of joy that left me climbing into bed thinking really, I don't need anything else for Christmas.

The day also left me remembering. I remembered last year, the day we got our tree. I should say, the day Anna and I got our tree because we'd tried earlier but the usual places weren't opened and it started raining a pelting, cold, miserable rain. Both the weather and my emotions were raw. Autism was still new. This was our first Christmas with it officially in our family. Ethan kept tantruming that day, something he rarely did, then or now. We had given up on the tree before lunch and in the car he kept crying, and crying, and crying. We picked up Chinese food and he was crying. We got home with it and he was crying. I went upstairs to change his diaper and he was crying and I was crying. God, get me through this, I kept praying over and over again. I'm about to break down. Get me through this. Something about the expectations of the holiday, the Hallmark commercials and kids sitting on Santa's lap in the mall and all of it, something made autism more real and more ugly and made everything more difficult to bear. The movies are saying we have to be happy. The commercials are saying it all has to be perfect.

And so that day Anna and I had gone out later while Ethan was napping and found some roadside place on Route 5 where the guy quickly threw the tree up on top of the car for us in the drilling sleet that was turning to snow. Huge, flat flakes filled the area. I rested in the beauty of it. I clung to the moment and also later when Ethan woke up and looked and called out "Snow!" That, at a time when he only had about 25 words.

Last year; this year. I was remembering both and thinking of peaks and valleys, both in my own life and in others close to me. There are numbers of people in my life right now who are hurting. They are facing the burden of financial challenges, serious health issues, prayers that have yet to be answered. They are traveling through valleys, and I think that becomes especially dificult this time of year when we are bombarded with this image of how things are "supposed" to be. Even if that reality technically only exists in the mind of some Hollywood producer.

We all have our times in the valleys. A year ago was mine and it will not be the last. In the past I would have taken a rather defeatist view of all of this, a "it's hard to enjoy now when something bad is eventually going to happen and rip it all away." But this is what you learn in the valleys, if you trust God. That poem, "Footprints," is not a cliche. He will carry you. And you will only realize it in that place. And when that happens, you don't have to fear the valleys quite so much anymore.

I am praying for all of those who are treading difficult paths this year, that their journey leads them somewhere more beautiful than they ever would have encountered, had they not had to pass through that way.

Love Repetition

So suddenly Ethan is into repeating certain things. Again and again and again. Thankfully it's not all of the time. His main topics are the water, the basement, and Christmas decorations.

Anna is one of those people who hates routines and sameness (except for oatmeal every morning), so it drives her crazy, especially in the car when Ethan starts yelling at every house we pass. "Christmas tree! Christmas lights!" Actually, what it comes out as is "Chris-x-tree! Chris-x-lights!" and sounds darned cute. Or it does the first 20 times.

For some reason in the bathroom he has to continually comment on the water and the faucets. I think it has something to do with the fact that the water temperature can be kind of confusing. The cold side is cold and the hot side is hot, except the hot side starts out cold and then gets warm and then hot. I can see he's trying to work it out in his brain. "That's cold! That's hot!" "Mamma, that's cold?" he asks/announces multiple times.

And the basement, that scary place (even to me) where he can hear the rumblings and whirrings of the washer, dryer, and furnace (which he calls heater). Now that's it's winter the heat will turn on but of course we don't feel it for awhile...sometimes until he accidentally bumps up against the radiator and is surprised by the heat. "Washer on! Dryer on! Heater on!" he'll announce, again and again. He'll want to open the door and check and listen. He'll see a basket of clothes and hate it sitting there in the middle of the floor. "Put in washer," he'll tell me. Sometimes the clothes are clean, but that's kind of hard for him to realize, especially if I have some of Dan's work shirts just kind of draped over the top. One time I caught him having the time of his life, throwing clean clothes from a basket down the stairs, thinking they were dirty.

Most of the time I find the repetitions mildly annoying. I wonder what causes them and wonder if it's ramped up because he's a little anxious about school or because he's gaining language or just, well, because. I usually try to count my blessings that it's not a more serious problem and ignore it as much as possible.

The other day I found myself really annoyed, though. My brain was tired of listening to him talk about the sink. I just wanted him to be done with that conversation. I wanted, for a second, for Ethan to learn something new without all of the distortions of autism....the repetition, the lack of creativity, the parts that are just "off."

A few minutes later I got in the car and came across a song on the Christian XM station. I have to say I don't listen to it that often because honestly, I get tired of some of the cheesy stuff that's on there. Yet so many times I've flipped to something that I needed to hear:

Who will love me for me
Not for what I have done or what I will become
Who will love me for me
Cause no one has shown me what love really means -- "Love Me," JJ Heller

"Not for what I have done or what I will become." That line ran through my head. Now that's the kind of repetition, the kind of constant reminder we all need. True love is loving someone not for what they have done or haven't done or what they will accomplish.

Is that the way we are loving? Do we know, do we really take in, that that is the way God loves us?

A Song Too Beautiful

Two seemingly insignificant, brief conversations got me thinking. Isn't that always the way?

1. My mom recently, while talking about Andy and how he was doing home visiting for Thanksgiving, said: "It's not that people with autism don't feel anything. That is the misconception. It's actually that they feel TOO much."

2. My dad, commenting on the Patriots' slaughtering of the Jets on Monday Night Football, said, "I was so hyped up I didn't get to sleep until 12:45 a.m., and then I got up at 5 a.m. and started listening to New York sports radio online."

I knew exactly what my dad meant, that sense of getting "hyped up." It reminded me of when the Red Sox beat the Yankees in the ALCS in 2004. At the end of the broadcast they played that famous old song "At Last" by Etta James. When I tried to sleep that night, that song kept running through my head, along with flashes from the game. I felt as if I was in overdrive and woke up at 5am with the song still going in my head.

This happens to everyone from time to time. For me, I think it happens more than the average person. Sometimes, and this is very hard to describe, I feel as if I'm not living my life but living a movie, and in particular a movie with a soundtrack. Any moment that is filled with any kind of emotion becomes a snapshot in my mind, and because I'm a musical person, if there was music on in that moment I'm more likely to capture it and feel it and sense the fullness of the moment in greater detail. And so, even now nine years later for example I hear the song "Trouble" by Coldplay and I don't just hear a song but suddenly have a perfect flashback to a dreary fall afternoon in 2001, watching rain slide down the window panes, feeling the fear of anthrax scares and crashing planes, the weight of the world after everything changed on 9/11. Or I hear "Sweet Caroline" and it's me standing with 30,000 people on a muggy summer evening at Fenway, laughing, belting it out at the top of my lungs, seeing the vivid green of the grass and the scoreboard lit up by the lights, the swirl of people sloshing beer and vendors calling and sticky concrete floor beneath me and the way the whole place thunders when everyone cheers at a hit.

I don't just remember things, I FEEL things. I re-experience them. And sometimes the feeling is so great, I almost don't know what to do with that. That's how I felt that last day with Birth to 3, outside in the backyard, tasting great joy and sadness simultaneously.

It makes me wonder what it would be like if my entire life were nothing but "movie scene" moments. What if every day was spent like the surreal feeling of my wedding day or the birth of my kids; the moments, the emotions so great that I almost felt as if I were in a fog? Would I not soon feel fatigued by it all? Would I not, after awhile, not know how to act anymore, how to handle it all? Would I not eventually shut down because there's only so much time we can live with our emotions and senses in "overdrive?"

There is so much about autism related to processing the senses and regulating emotions. Temple Grandin has talked about how certain places are just a nightmare for her and others with autism. She mentioned Wal-Mart for example, the way the screech over the loudspeaker would be like nails on a chalkboard for a typical person, the lights above blinding, the activity so much, so busy, so varied, it sends her mind spinning. I've noticed with Ethan, if he is denied something he wants to do and feels upset, or gets to a new place and is nervous, he'll launch into repetitiveness. He doesn't know what to do with his feelings sometimes.

I could be way off on this, but I can't help thinking of myself and my dad, awake at night, rehashing the big game, reliving incredible moments. Could that be one of the myriad issues related to autism and night waking? In those quiet hours, their minds are still thinking it all over...processing...feeling...breaking down everything that was so overwhelming in the flurried activity of daytime. Maybe there are songs and phrases and moments just running through their heads, keeping their minds active, the way I kept hearing "At Last" in my head as I tossed and turned after the Red Sox won.

Life is like a song, Etta James sings in "At Last." I think, for people with autism, the song is just too beautiful, too rich, too complex sometimes.

Potato Chips

Sigh.

Today when I went to get Ethan from school, I could tell his teacher, Mrs. Mullin, was stressed. There in the hustle and bustle of the hallway, as I tried to hug Ethan hello and hold onto him so he wouldn't go outside, while other kids and parents rushed by, she proceeded in about 2 minutes to tell me 1) She wants to get Ethan evaluated for physical therapy because of the way he's tripping a lot in class and one foot turns out (which we knew about) and 2) She has to have surgery and will be out of school for most of January.

Sigh. Just when I thought things were calming down and getting on track.

There are positives, I suppose, about the therapy. I've noticed since Ethan was very little that one foot turned out. His doctor basically said wait it out but that there isn't that much that can be done for it. It actually has more to do with the way one of his leg bones turns out rather than his foot. Ethan doesn't fall that much at home, I didn't think. I suppose the fact that the school is making note of this and wants to get him therapy is a good thing. They're paying attention to the little details. But...I can't help but think, "More therapy for my little guy? Will it be just a temporary thing or go on and on and on? How long will he need speech and OT? And is it a good thing if he continues to have it because at least it means he's not just slipping through the cracks?

These are things I might have had long drawn out conversations about with Birth to 3, had they still been here. But instead I'm having rushed conversations in a hallway with a teacher I wish I knew better, except -- eek! -- Christmas vacation is coming, and then she's out for a month.

About her being gone: first of all, I hope she's okay and it's something relatively benign. And I DO feel bad for her. I can see how much she loves the kids and of course knows that out of all of the kids out there, the ones who are going to have the hardest time with their teacher being away for a month are kids on the autism spectrum. Kids used to routine and familiarity, who take time to warm up to new people, kids who she knows intimately. Besides Ethan she has two new kids coming in this week alone. These things just happen, and it's unfortunate.

If I can stop being so sentimental and become more rational (this is when talking to Dan is extremely helpful, he who has been jokingly called "Mr. Spock) I can tell myself that Ethan is actually a fairly adaptable kid. He doesn't get thrown off by changes in routine or new people nearly as much as some kids on the spectrum. He will be okay. His therapists haven't been here for almost two weeks now and his world isn't crashing down on him.

But...still. This is preschool. This is a big transition, and this is Mrs. Mullin, who he already looks for every morning when we walk up to the front door. And what's a little frustrating is that I don't know how much to explain to him sometimes, or how much he understands. I'm thinking of telling him after Christmas that Mrs. Mullin went on a long trip, but she'll be back. He doesn't seem to have much of a concept of time. We're still working on holidays/seasons, and helping him to realize that different things happen each year and each month. Telling him Mrs. Mullin's going to be out sick for a month is going to mean nothing.

Again though, he's a happy-go-lucky kid, for the most part. Several times last week when he would have had therapy appointments he's stood on the stairs and announced, "Jessica gone! Go to school now." He wasn't crying. He wasn't upset. He was just kind of repeating what I had told him and trying to work it all out. I was the one who started gushing, "Yes she's gone, but she's love you very much, and maybe you can visit with her sometime," blah, blah, blah, while he moved onto something else.

I have this sentimentality gene that at times I'd like to lend to someone else. I believe I inherited it from my grandmother, who my mom said once cried secretly for a few days because she thought my mom hadn't invited her to her tupperware party. Once when I was about six my dad left me a little baggie of chips for my lunch before I woke up, with a note that said, "Have a good day at school today! Love, Dad." When I found out school was canceled due to a snow day and I wouldn't be able to eat the chips my dad had left for my lunch, I cried. Yes. Cried. He'd wanted me to have them for school. And school was canceled but he hadn't known that. I just felt bad his intentions had been thwarted. To this day Dan and I joke about the story. If either of us feel bad about, say, someone throwing a party and no one showing up, we'll say "Oh no -- potato chips!"

Having the potato chips mentality is not going to serve me well, these days. I can't afford sentimentality right now, as I learn how to be confident in myself and my boy without people constantly around to reassure me. I need to put a little more armor around my emotions, or what am I going to do when Ethan's older, if someone makes fun of him or if he's having a hard time? If he really does struggle with saying goodbye to different teachers or people in his life? Someone's got to be the strong one, and it shouldn't be him.

But for now, I don't even need to go that far. He will be okay. Some physical therapy isn't going to ruin him and may very well help him. And he'll learn to deal with a change of staff for awhile in his classroom. It won't be the last time. It most certainly will not.

What's in my Toolbox

Ethan started preschool on Monday, and he's doing really well. Amazingly well. Not that I wasn't believing in him, but I am almost overwhelmed by his adjustment. I keep thinking there has to be a moment when the honeymoon's over and he realizes he has to go back to this place and work and interact, day in and day out, and that's when we'll encounter some resistance, but right now still he WANTS to go back. "Go to school any minute!" is his mantra, and he says it morning, afternoon and night.

In this first week I've learned that his teachers WILL be true to their word. They've already had him eating snack in the other classroom, the integrated room, and yesterday he did story time in there. His teacher confided in me that she wished she could "clone" him, and that the way things are going he won't be in her class for long. She's an awesome teacher, though, and now I almost don't want Ethan to lose her. No matter. They'll let him fly when he's ready. They've also been receptive to my idea about someone bringing him to the playgroup he and I used to attend on Thursday mornings, and already they are telling me of course what I already know: he needs to work on social interaction with other kids. They actually want to work to help he and another boy in his class to interact better with each other, and then bring them to the playgroup to work on those skills with other kids.

The biggest adjustment to having Ethan in preschool, besides my free time and sense of weirdness that my kids are in school now, is the limited interaction I have with his teachers. Basically, it's a minute in the morning and later when I go to pick him up, and a few notes scribbled in his communication notebook. I do have his teacher's email address. She's very open and willing to talk. There just isn't the time. This is school, there are schedules, there are multiple children. I have to get used to not having the luxury of people around for hour or more blocks of time who can answer any of my questions, at length.

Yet for the most part I'm not THAT distressed about this, and after thinking about it I'm realizing that while I don't know everything Ethan is doing every moment at school, and I may not know right off the bat how to deal with a specific issue, I've been left with some great tools thanks to Birth to 3. If I had to sum up "Everything I Needed to Know to Help Ethan I Learned in Birth to 3," it would go something like this:

1. Picture schedules (or verbal schedules) for the day are our friend.

2. First/Then ("first color, then you can go outside") has been a lifesaver in getting Ethan to try new things, and to focus.

3. Pair an undesirable activity with a desirable one (kind of like, "a spoonful of sugar helps the medicine go down").

4. If HE picks an activity (i.e. doing a puzzle), be more strict about him following through, rather than if I picked the activity. If he says he's done, have him pick it up before jumping to something else.

5. Give warnings before an impending transition ("two more times down the slide, then we're going home"). Actually, this one is particulary helpful for all kids.

6. If he's losing interest, try making sure there is a set end to the activity ("let's throw the ball 5 more times, then we're done").

7. If he's not really listening or looking at me, try getting down to his level. Speak slowly. And wait for eye contact.

8. Do NOT get really hyped up about an undesirable behavior. This only reinforces the behavior. Catch the good behavior and be sure to reward with lots of praise or other rewards when appropriate.

9. Play to Ethan's interests to help him learn and to get him through difficult situations. For him, music is a big thing, so I've made up many songs about daily life to help him learn, and we also sing quietly in stressful situations (i.e. waiting in a restaurant for a long time) to help pass the time.

10. Trust my instincts. No matter how qualified someone is to care for my child, I still know my son best. I am his greatest teacher.

The situations may change, the challenges may vary over time, his teachers and therapists may come and go, but I am his constant. And I'm grateful to have the foundation, the tools, to help Ethan each day.

Two Decembers

December 2009
Ethan's on the slide in the backyard. The air is raw; we're going to attempt getting our tree later. Once he reaches the top of the slide, I stand below him and practice once again.

"Okay Ethan. Here we go. Ready...set...." I wait for him. Nothing for a moment. "G-" I prompt.

"Gee!" he yells. Almost. He practically tumbles down the slide in his new winter jacket, a size too big. Again, he runs to climb up the ladder.

"Yea!" I cheer him on. "Let's do it again. Ready, set...." I wait. And wait. I know he can do it. I've told his speech therapist he can do it, because I've heard it, even if no one else has yet.

Eyes shining, smiling, he says it. "GO!"

*****
December 2010
December has not quite felt like December yet. The sun is out and we're grasping another moment of fresh air before the inevitable storms hit, at some point.

"Let's go down the slide!" I call to Ethan.

"Mommy go up ladder?" he asks.

"Sure, I'll go the ladder."

"Ethan up wall."

"Okay, I'll race you!" I scramble to the top.

"Ethan turn!" he shouts and positions himself at the top, then pushes himself down. He stands at the bottom, watching me. "Mommy down slide, too," he says.

"I'm coming, I'm coming," I answer, and squeeze my big body down the little slide.

"Now mommy up wall," he tells me, and of course I oblige, hoping I make it up the rickety slope.

"Yea! Mommy's coming!" Ethan calls, laughing as he climbs the ladder.

*****
"Will he ever talk?" I had half-wailed to Jessica, at the beginning. Inside I knew the answer, I knew that he would, but I wanted someone to answer definitively, absolutely, positively. Of course, she couldn't do that.

Sometimes we have no choice. Sometimes we just have to trust. Hope. And wait.

Hello and Goodbye

Transition -- a passage from one state, change, subject or place to another: change

Ethan's in school now. He was whisked off by his teacher yesterday almost before I had a chance to say goodbye. I am happy; excited for him. I'm looking forward to having some time to do things I've been meaning to do for, well, three years. I have a goal to take in more work on freelance projects, get reconnected with some people, start offering my input on the special needs ministry we're starting at church. I'm ready to go, but I'm still saying goodbye.

I've joked before that saying goodbye has always been such a miserable thing for me. I once had a crush on this guy who joined the Coast Guard. I spent the summer of 1989 writing letters to him that I knew I would never send. Whenever managers would get transfered from my job at McDonalds (McDonalds!) I would get all weepy and melancholy. When I left Baystate I had the song by Green Day running in my head for weeks (Another turning point a fork stuck in the road/time grabs you by the wrist, directs you where to go...). When Dan left for college you'd think he'd gone to study abroad rather at UMass. And when I had Ethan I mourned the loss of time I had with Anna, the change, the different-ness of it all. I'm the queen of turning change into a made-for-TV movie, like the Hallmark film on the other night, but this time it's different.

I'm saying goodbye to a whole way of life, and it's making me feel, well, old. Both of my kids are in school now. My days with very little children, with wailing, spitting-up, gummy-grinned, drooly babies and toddlers are done. This isn't so bad in itself...but there aren't many friends I know who are not in quite the same place. Most of them are a few years younger. Their kids are still at home and they're on their last baby. Or they don't have kids or their kids are older, but we're not close anymore. I hear this little voice saying sometimes, "Do you know what you're doing with your life?"

The voice attempts to scare me, but I don't go that route. I have Ethan to thank. I was thinking the other day of a Max Lucado book that I've never read. I love the title, though: "The Cure for the Common Life." This is yet another gift my son has given me. Sometimes I think where I would be if he were a typical kid, and I almost want to shudder. Maybe that sounds horrible. I don't want him to have autism and I don't want him to experience the many hurts that are out there in this world. But Ethan...well, he helped me stop seeing autism as something to run from. He helped open my eyes in a way I wish I had long ago. Without Ethan, I can see myself playing some sort of suburban game, cushioned from the realities of life, doing everything in my power to create my perfect world rather than longing to bring help and healing to this hurting world. I think of all the people I've met, lives I've discovered, the rich moments that have filled up my heart in the past year or so. Life somehow seems more real, if that makes any sense. I'm not playing games anymore. I'm not seeing through such clouded eyes anymore. I feel a sense of purpose that's more deep and fulfilling than the things I once dreamed of.

It's just...the purpose hasn't fully taken shape yet. And I still feel raw from the goodbyes, the change, the drawing close to age 36, the chapters in my life that have ended and doors that have closed. I keep taking looks back, even while I'm stepping forward. It reminds me of one of my favorite old songs by Sara Groves, "Painting Pictures of Egypt," which has been dancing in my mind often recently. I will end with this:

I don't want to leave here

I don't want to stay

It feels like pinching to me either way

And the places I long for the most are the places where I've been

They are calling after me like a long lost friend

It's not about losing faith

It's not about trust

It's all about comfortable when you move so much

The place I was wasn't perfect but I had found a way to live

No it wasn't milk or honey but then neither is this

I've been paining pictures of Egypt

But leaving out what it lacks

Cause the future feels so hard and I want to go back

But the places that used to fit me cannot hold the things I've learned

Those roads were closed off to me while my back was turned

The past is so tangible

I know it by heart

Familiar things are never easy to discard

I was dying for some freedom but now I hesitate to go

I am caught between the promise and the things I know

I've been painting pictures of Egypt

But leaving out what it lacks

Cause the future feels so hard and I want to go back

But the places that used to fit me cannot hold the things I've learned

Those roads were closed off to me while my back was turned

If it comes too quick I may not appreciate it

Is that the reason behind all this time and sand?

If it comes too quick I may not recognize it

Is that the reason behind all this time and sand?

Seasons

Ethan woke up from his nap early yesterday afternoon. That morning we had said our goodbyes to Jessica and Birth to 3. Somehow the house felt empty. I looked outside and saw the sun and the wind whipping the trees and told the kids to get their coats, we were going outside to play while there was still daylight.

The maple in our backyard, always the last holdout each fall, was finally almost bare. I looked past the swingset, up the hill and into the wind that was wrestling the last of the leaves to the ground and a picture flashed in my mind. I saw Jessica and I standing in this same spot almost exactly a year before, feet crunching in the leaves, watching Ethan push his wagon up the hill. We had been talking about something, I guess about Ethan and the way he played outside, and suddenly I started crying. My heart felt broken as I described how tired I was of chasing Ethan out there, that he thought it was a big game to run around the house -- and how I kept remembering the days Anna and I would play back there when she was small, how she had had my undivided attention and now with everything happening I felt I had let her down. I had failed her, and I wondered: would it ever get better?

That was a year ago, I thought. Was that possible?

"Okay guys!" I shouted. "It's freezing out here. Let's play chase to warm up. One, two, three, come catch me!"

I took off across the yard, and there was Anna shrieking behind me and Ethan behind her. They followed me up the hill and under the tree now free of leaves, Anna's magical fairyland tree in the summer, under which the lily of the valleys grow in the spring. My kids caught me and gave me hugs, Ethan unceremoniously wiping his dripping nose on me in the process.

"Now catch ME!" Anna screamed, and was off, and so was I, and Ethan, yes Ethan was following us and not just pushing his lawnmower around or trying to disappear around the house.

We sat on the swings, trying to catch our breath, rubbing our hands together in the cold, knowing we'd need to go in soon. "Push higher mom!" Ethan commanded. Anna wanted to make up another game about her bratty imaginary enemies. "Can we play Prune Girls?" she pleaded.

It's been a year, I kept thinking. Fall, winter, spring, summer, and fall again. In my mind's eye I saw water fights with the hose and taking the sleds down the hill in perfect glittering snow and breezy summer afternoons under the shade of the maple, swinging and looking up at the big blue sky. I saw the faces of every person that had been a part of our lives and a part of our family in the past year, helping us begin this journey with Ethan and autism. That was all? I almosted wanted to ask. They're really gone now?

Anna grabbed a piece of sidewalk chalk and began drawing all over the patio. "Do you want to draw too?" I asked Ethan, and joy of joys, he took a piece of chalk and started coloring...and coloring...and coloring. More than five minutes of coloring, for a boy who typically views it as a necessary evil. Anna was drawing a baby with the word "goo" coming out of her mouth. Then she got mad when Ethan scribbled over the baby's face, and I probably should have been more stern with Ethan but was so glad to just see him enjoying the chalk for the first time ever. But I did give Anna more time to draw another baby even though we needed to get inside, if that counts for anything.

Somehow in that moment I truly felt as if my heart would burst, just splatter right there on the patio. A year had gone by. My son still had autism but the little boy with the big grin chasing his sister and his mom around the backyard was not the same person. Neither was I. A year had gone by in a blink and there was no denying my children were marching past the sweet years of childhood at a startling pace. I wanted to stop time and somehow simultaneously push them to fly. I wanted to hold on to this way of life I'd grown comfortable with yet let it all go and see what would happen next. If it's possible to feel profoundly grateful, sad, and joyful in a single moment, well, I was.

You can do this, a voice whispered as I ushered the kids inside. I was reminded of my time at Baystate, creating videos about babies born way too early, whose parents watched over them for months in the NICU and grew to know and love the staff there like a second family. When it was time for their little one to finally go home, parents would always tell me, a part of them didn't want to go. A part of them was afraid to leave everything they'd known behind and take their child out of that protective bubble. But in the end their joy always overran the trepidation.

Darkness was coming. Thanksgiving was coming. I wanted to wrap my kids in my arms and squeeze them in the kind of hug that makes it difficult to breathe. I wanted to thank everyone I'd already thanked. I wanted to dance, but it was Anna who needed to get to ballet class, literally. While we drove we looked for Christmas lights; those bright spots in the darkness, hinting of beautiful things to come.

"There is a time for everything, and a season for every activity under heaven." -- Ecclesisastes 3:1

On Giving Thanks

I used to hate November. I disliked the dreariness, the heavy feeling of darkness so early in the evenings, the trees stripped bare. November and March left a bad taste in my mouth, but at least March had the promise of spring.

About 15 years ago, however, I realized how much I really love Thanksgiving. I have to say it's my favorite holiday. Thanksgiving has nothing to do with the expectations, the gifts that someone didn't like, the family Christmas gathering that wasn't exactly (or even close) to the Hallmark commercial. Thanksgiving was about well, thankfulness, first and foremost. Imagine that: the beauty of a day set aside to reflect and be grateful. Over time I've embraced everything about Thanksgiving with open arms -- the long walks we used to take in Forest Park before the meal, the hokeyness of the Macy's parade, the deliciousness of green bean casserole. Thanksgiving makes me smile.

How fitting it is that my little boy was born this time of year. He wasn't supposed to be. Ethan was due on December 13, just a few days before my birthday. "ANOTHER Christmas baby?" I had groaned (Dan's birthday is Dec. 22). But no, Ethan was a Thanksgiving baby. Thanksgiving was early the year he was born, but at some point his birthday will be on actual Thanksgiving.

My water broke with Ethan in the parking lot of Barnes & Noble. The November morning was partly cloudy and unseasonably warm. By the afternoon Dan and I were heading to Saint Frances, while my mom played with Anna in the leaves outside.

Dan and I argued about whether to name the baby Ethan or Jacob, if we had a boy (we were playing the guessing game, this time). Both names were so popular but it was all we could agree on. I liked Ethan ("firm, strong, steadfast," said the definition in the Baby Names book). In my room we watched reruns for hours, waiting for labor to hit. Day turned to night. November 27 turned to November 28, and then in the wee hours of the morning, we heard those words: "It's a...boy!" Ethan Daniel.

He was such a tiny, hunched little thing. He was so, so sleepy. Was it being 15 days early, or the jaundice, or something, anything to do with his eventual autism? He seemed so helpless, even more so than Anna at birth, if that makes any sense.

I didn't fall asleep until about 2 or 3am the night he was born, and woke up before sunrise. I remember getting up and looking out the window over the mostly sleeping city of Hartford. The sky was growing pink. A flock of birds soared overhead. There was a beauty in the stark silouhettes of maples, in the neighborhoods coming to life. November was beautiful. Somehow, for the first time I saw the beauty in the still and emptiness.

Thanksgiving is coming, Ethan's birthday is coming, and I am thankful. I am thankful for my little boy, for all of my family. I can't say I'm thankful for autism, but I am thankful for all it's brought me: an appreciation for the small things. An outright joy at every milestone reached. A newfound peserverance. A firsthand witness of God's provision. An ongoing lesson in unconditional love. And yes, even the revelation of ugly things within that needed and need to go. November can be beautiful, if we choose to see it that way. There are so many treasures we see when the leaves are gone, when summer is just a wisp of memory.

Thanksgiving is tomorrow. Ethan's birthday is in four days, and I'm giving thanks. I'm celebrating.

Inheritance

In the spring, I did a Beth Moore Bible study at church called "The Inheritance." One of the major themes of the study was that our life experiences are part of our inheritance from God, just as much a part as our talents, our physical possessions and so on. We can picture them as a field, and the question is, what will we do with it? While not everything that happens to us originated from God, it can all be redeemed. Do we have the courage to face those things, to overcome evil with good? Will we take the field we've been given, even the rocky, thorny parts, and allow it to be transformed into something beautiful and fruitful?

After the study I felt compelled to write our pastor a letter. This might not seem like a big deal, but to me it was. We go to a big church. I don't really know the pastors and the few interactions I've had with them have been quite formal. And to be honest, I have a hard time completely trusting and opening up my heart to pastors, after some bad church experiences. But there I went, gushing things out to the pastor, having no idea how he would take it. I thanked him for his ministry, and in particular for preaching about healing when he has struggled himself with a chronic health issue for years. I told him how much it had blessed me, to see his wife working during the service with a special needs child, due to my past history with pastors long ago who were insensitive to my brother's autism. And then I went all out and referenced Beth Moore's study and how I felt a part of my inheritance, of allowing God to redeem past experiences, would be help to help be a part of a special needs ministry at our church. He had just told us in a sermon a few weeks before, if we wanted to start a ministry, go for it! Don't just wait for the pastor. So I sent the letter, and then I heard nothing.

I thought about next steps. I thought about who to talk to and all of the chains of command. I spoke with a few people connected to the higher ups and heard little snippets of this and that. I wondered if the whole thing was just going to die. I knew there had been other families who had been hoping, praying for something to happen at the church for much longer than I had. Other people had the same passion and desire, other people had asked, and something was percolating, but it was hard to tell just what.

I saw the pastors at the church picnic but couldn't bring myself to bring it up. I wondered if he'd even gotten the letter, and why I had written so much, and if I wasn't just foolish. Sometimes I can be too transparent. Worse than that, I was struggling to believe the best, to not walk around with an attitude, to keep the faith. When you've had at least three pastors and churches let you down, this is harder than it sounds.

So I put it aside, or opened up those arms and let it go, at least for awhile, as I focused on Ethan and the whole preschool transition process. And then the other day I received an email from a woman at church who teaches children with autism as part of her "day job. Part of it read:

I’d like to invite you to an informational meeting regarding the beginnings of a special needs ministry at our church. As many of you know, this need has been ‘in the works’ for some time now. During this meeting I plan to listen to your hearts and ideas and share with you my vision and plans. I know that some of you have had to be very patient but I believe that the time is now and God’s blessing is on it. I’ve been able to discuss this with Pastor Dave Mullin and Pastor Dave Waite and they have extended their blessing and recognize the need.

I read the words and wanted to dance for joy, but I needed to get to my MOPS meeting. As I put Ethan in the car and started driving, I realized I was crying. Everytime I tried to stop, I kept crying. I have always been a crier, but there haven't been too many times in life that I haven't been able to stop happy crying.

I couldn't help it. As I drove down 291 in the November sunshine, I cried while so many pictures flashed in front of me. I saw my 1o-year-old self, outside Pioneer Valley up on the hill near the woods, watching Andy alone while the service went on inside. I saw Joy Church and Andy running out of the nursery and flipping off the lights on the congregation, and little hunched over sweet Grace wanting to help Andy but not being able to handle him, as time went by, and big-hearted Dennis who used to offer to help out, at New Life. I thought of Betty in the nursery at CLG, telling me about the soft spot she had for Ethan and the boy with autism she used to watch 20 years ago, who still writes her letters.

In my mind's eye I saw the wearied faces of parents of special needs kids, the woman who told me she has never left her son because he is completely non-verbal and she doesn't trust anyone to watch him, another one with four kids on the spectrum. I thought of people at the autism support group with their resigned kind of humor and acceptance and people I have never met who don't go to church or have left church because there was nothing there for their kids, especially understanding and compassion...these precious people who so desperately need a break, a revival of their spirits, and their children who so desperately need someone to see them for who they truly are.

I thought all of this, and I cried, because I was thinking with all of my heart that yes, this is what Jesus would do. This He would make a priority. And I was accepting that others do care. Others have a heart for these kids and their families. And that made my heart heal in many places.

A Good Day in First Grade

Ah, to be six again. Anna came home from school yesterday bouncing all over the place because of all of the incredible things that had happened. They are as follows:

-- Won 10 free tokens to Chuck E Cheeses for being one of the students to remain very quiet during seatwork time
-- Was chosen to be custodian's helper this week, which meant she got to go back with Mr. B to a secret room with a door marked "No Children Allowed" to get some trash bags
-- Her team this week, the "Waterfalls," won first place (70 points!) and she got to pick a prize from the prize box
-- Made it to the highest level ever on Space Out, a math game in the library.

I'll say it again: Ahhh, to be six once again.

Dr. Milanese, Take 2

A year (and six weeks) later, and everything was different. Even the location, as the developmental pediatrics department had moved from inside CCMC to a building down the street.

At 9am Dr. Milanese and Jen, the speech pathologist, came to get us, and brought us to a room much like last year with the same spread of toys laid out. For a moment, Ethan didn't want to go in and when we did get in he clung to me. Then, he saw the same Sesame Street toy from last year on the table and began playing with it. From there, I was delightfully bombarded by the improvements he's made, one after another.

Last year: would only play with the Sesame Street toy. In fact, mostly he wanted to play with one button on the Sesame Street toy. He may have briefly looked at something else Jen introduced for a moment, but then it was back to the toy. When we took the toy away, he lay on the floor and cried.

This year: Gravited to that prefered toy first, but was quickly distracted when Jen asked him to look at something else. He was looking at her, smiling, laughing, requesting.

Last year: Ignored every toy she had layed out in the corner of the room to entice him.

This year: Ethan quickly found the truck and pushed it around, rolled around and threw several of the little balls, and played with the Jack in the Box type toy.

Last year: Ethan didn't look at either of them at all and used a couple of words to request something from me.

This year: While eye contact is still an issue, it was much improved and he used many words and short sentences/phrases to request and comment.

Last year: If we got to the imitation portion of the assessment, I either don't remember it or it didn't go well.

This year: He imitated bouncing a toy frog, pushing a car and making a car noise, and pushing a wooden block as if it were a car.

Last year: I KNOW we didn't get to pretend play.

This year: He pretended to take a drink, and helped Jen put "birthday candles" on a cake for the baby doll, blow them out, and give baby a piece of cake. He even pretended to wipe up when Jen asked him to because the "baby spilled her juice." And he kind of pretended to put the baby to sleep, before he decided he was done with all of that.

I sat there through all of this, marveling and wondering. I marveled at all of the building blocks to child development and how the pieces fit together. I marveled at how far Ethan has come and wondered just what it was that made the biggest difference: Just time and maturity? All of the therapy? God's divine hand? An interplay of the three?

I said as much to Dr. Milanese, in relation to the "sensory diet" she had recommended in her original report. She had thought it would greatly benefit Ethan, and we certainly tried different things. Nothing really worked. Certain techniques provided maybe a little bit of help, but there was no holy grail.

"I keep wondering what exactly it is that's helped him improve in some areas," I told her. In my mind I was referring especially to his affinity for opening and closing doors and flipping light switches, particularly at other people's houses. "I just wonder if it was something we did or if his brain just needed to make some new connections or it was just time." Dr. Milanese acknowledge that was the nature of autism and in particular the sensory issues -- they can make recommendations but they don't work for every child and they even can work differently at different times.

At the end of the appointment they mentioned how different he seemed from last time and the many strides he's made. While I didn't expect them to tell me his autism diagnosis had magically fallen off of him, they did say he's less symptomatic of autism.

I wrote about that after on Facebook and then started thinking. If someone had cancer and the doctor had told them the chemo was shrinking it, they'd report it and it'd be a wonderful thing. But autism is woven into a person. It's part of their complete makeup. Maybe I'm overanalyzing here, but I hated to think I sounded as if we were just trying to wipe it off of him. It's not what I meant.

I'm at the point now where the big thing to me is not the diagnosis. I know there are parents out there who out of the pain and desperation do everything in their power to see if they can help their child lose that diagnosis before the so-called "critical" age of 5 or 6. I've kind of given all of that part over to God. There are some amazing things about autism, and there are good things about autism, for both Ethan and for all of us. For me, when I wrote about the "symptoms," it's more the relating part. That's what has always been hardest for me, with autism in general. It's seeing someone who acts like they don't care or want to relate to you, and believing that actually they do but just don't know how. We've spent a lot of time in the past year encouraging Ethan to engage, not run in the other room and play the keyboard while we're all in the other room playing, for example. Maybe if I knew he was a natural introvert who really just wanted to do that, it'd be different. But what has gotten to me is that the more we encourage him gently, and the more he progresses, we see that he WANTS to be with us. When he's prodded just a little bit, a big grin spreads across his face and he runs to us. He follows Anna all over the place now. He spends much less time alone when it's just our family (bigger gatherings still stress him).

So to me, that was the joy I was feeling. Not that he had less autism per se, but that he was coming out of his shell. He wasn't stressed and miserable in the room but actually a little playful. His little personality is coming out more and more and we see he actually kind of likes attention, kind of likes people and really longs for someone to draw him out. Certain barriers that had prevented him from relating are beginning to melt away.

I don't know what this means for the future. But I deeply appreciate being able to relate to my son, and that other people are beginning to see what's in there.

Two Dreams

Last night I couldn't sleep for awhile. Right before morning I began to drift off, and as often happens during those pre-dawn hours I plunged into several very vivid dreams.

In the first, I was walking with a group of friends. Most were Soup Group friends that I've gotten to know over the past few years...Lyssa, Christine, Suzanne, Sheila, Kelly. My friend Jen from my teenage years was there, too. In recent years in both real life and the dream Jen has drfited away and become a different person, and I've yearned for the way things used to be. In the dream as we walked I began to fall behind. I felt as if I were dragging and it was my heart rather than my legs that were heavy. I felt weighted down with sadness, wanting to connect with them, feeling as if they weren't ignoring me but just preoccupied and having fun in conversation. All of my sadness about Ethan and feeling alone made me start crying as I walked. Tears were streaming down my face as I looked down at my feet, wondering why I was wearing sandals when it was cold. My friend Jen was the closest and I began wishing she would see me, come back to me, and reach out to me. I was crying so hard I couldn't see. Then I felt a hand on my shoulder, but it wasn't Jen. It was Kelly. Kelly looked at me with these compassionate eyes, Kelly who had lost a baby daughter in a horrible way, and we made a connection. Next thing I knew she was ushering my ahead to join the others. I forgot all about the fact that my oldest friend had ignored me. It was time to move ahead from that and join people who did care about me.

I woke up not crying for real but breathing in that way as if I had been sobbing, in the dream.

In the next dream Dan and I lived in this apartment in Cannon Circle, next to my parents who still lived in the apartment where we'd lived when I was younger. There was a neighborhood right nearby though and we had been considering buying a certain house. We looked into it and things just didn't seem right, but suddenly we found out the house next to it, which was even better suited to us, was for sale. In this whirlwind over a couple of hours we looked around inside the house and talked to the owners and learned they were ready to start the selling process right then and there. I found myself so overwhelmed, in a good way but just thinking it was happening so fast and maybe I wasn't quite sure if we were doing the right thing. Suddenly my parents were there and Al and Debbie, friends of ours from the church we used to attend. "It's scary but so worth it when you go an take the plunge!" Debbie was saying. Al and Debbie have adopted three children from Africa. In the dream she was showing me a school picture of one of her adopted boys. He was beautiful. "I'm so proud of him," she was saying.

My parents were encouraging us, too. My mom knew I was struggling. I don't know what I said to her, but the last thing she said to me in the dream, which I think was in reference to sending Andy off to Higashi school was, "That's what dad and I did. We had to say goodbye first."

We had to say goodbye first. I woke up with a start. A good kind of jolt. Suddenly I understood everything that had happened Monday a little better. These kind and qualified teachers were offering us more services than I'd hoped for. They were saying they believed in my son and his potential. But I was so overwhelmed, mostly because I hadn't said goodbye yet.

Not goodbye to Ethan's potential. Not goodbye to a good future. But goodbye to the exact way he was going to get there. I hadn't completely adopted new expectations. With all of this you can think you're doing so well, until (not unlike a child with ASD) the situation changes and it's all new and well, there can be adjustment problems. If as a parent you haven't said goodbye first. If you haven't said goodbye to the cocoon of birth to 3 where you can pretend your son just needs a little extra help and then he's going to catch up. Goodbye to the idea of fixing him to make him tyical. Is it saying goodbye to some dreams? Maybe. But I don't think we need to let go of every single one all at once. As Dan has said, "Let him show us how far he can go." Is it saying goodbye to expectations? Again, I say emphatically NO. But I have to let go of him being just like everyone else. (Just like I have to let go of ME being just like everyone else). I have to release him from that and see how he soars. I have to adopt this new way of thinking and seeing my son. A way that still for sure fills my heart with pride and love.

Suddenly, I can't wait for Ethan to start school.

Stream of Consciousness at the IEP meeting

We've waited forever for this and here we are. Am I nervous? I don't feel nervous so much as relived that we are finally sitting in this room stuffy with dry heat and getting on with the whole thing. There's Patty the school psychologist and Diane the special ed. teacher and Rita who does speech. There's the ice princess...I mean, the principal.

Okay, this is going well. They "get" him. They understand that he's a quick learner, that he just picked up potty training over the course of a few days, that he flies through things and doesn't need flashcards and trials and programs. Everything they're saying is so accurate, it's wild because these people spent a mere half-hour with him on two occasions.

Okay, it's hard to hear about my son's deficits. Even if it is prettied up with the fancy language of test scores and assessments. I looked in the back of the book so I know what it means to only score a Level 1 on the VB-MAPP in some areas. I know what a CARS score means. Ugh. Medical diagnosis. I hate these terms. I hate being clinical even if we have to for a bit.

Oh, this is good. More speech and OT than I thought. Yes! We don't have to fight. Even a speech consult in class in addition to the pull-out. They recognize exactly what his deficits in language are. I won't have to figure out how to put on my OT hat at home because he scores to well to qualify for any through school.

They what? Ugh, okay I wasn't ready to hear that. They want him to start in the autism room. They don't want to do the integrated classroom yet. They want him to work toward it. What do you want to say about this? How do you really feel about this? What does Dan think? I can feel him next to me but not see his expression. Jessica is at the end of the table and there's no need to look at her anyway. She's representing Birth to 3 and can't say a thing.

What do I do? How do I feel? Say something. Talk about the gains his made, even in the past month. Talk about how peer interaction is so important and how he can learn from his peers, how having him in that kind of environment is so important.

Okay good. No emotions here, just facts. The principal is talking down to me, but it's not in a personal way, just seems like her standard lines she throws out at all parents. Blah, blah, blah. You don't know who you're talking to, lady.

What do I do? What do I say? My head wants to argue more, to put my foot down and fight for the integrated classroom, but something in my heart is stopping me. There is truth to what they're saying. His weakest areas have always been the areas that are most important for school...receptive language, listening in a group, following directions, sitting still and focusing. But I know interaction with peers is important too. What do I do when we're both right? What about least restrictive environment? What about what Amy said, what about what Amber said?

But they are telling me he'll move quickly through their program, that they're not sitting him at a table and doing flashcards. No discrete trials for him. They know this. He can do free play with the other class first thing in the morning. We will talk about further expanding that. How do I get that into the IEP? Where is the IEP? Are they going to give me something to sign today? Something I'm NOT signing yet?

Do I say more? Do I give in? What is my heart truly telling me? My heart says to give this a chance but it means trusting teachers who seem to mean well. I must separate the teachers from ice princess. They seem to understand my son. The principal sees us as a number, a block on her schedule.

I have to trust now. We can ammend things. I have the right to re-assess, to call another meeting. Can I trust? I don't want to fail my son.

We're getting up and walking down to see the rooms. There's the 3's class where I eventually want Ethan to be. No kids in there now...so cute, a typical preschool room. Now across the hall to the autism classroom. A few kids in there who require full day. Got to remember that. It looks like a preschool room but a little more stark. One kid is making noises. Another kid seems more like Ethan. They say last year he started in this room and this year he's integrated in the morning and comes there in the afternoon. Could he be Ethan next year? Please God. Oh God, I don't want to cry. I'm geting teary. Okay we've known this for a year but my son is going into special ed. Oh God I'm horrible because I didn't think he'd end up with "those" kids. Oh God these kids have moms and dads who adore them just as I adore Ethan and my son is no better than them. They are all precious. They are all your children, God. I need the ugly parts of me changed.

But still I just thought maybe a tiny piece of me that he could go in the integrated room and everything would just be okay, that it's not so bad. Reality is here and even if he goes in there he has challenges and he is different and oh my God this is just the beginning and will I be strong enough to do this.

Do not cry, even though I'm starting to feel like I'm underwater. No Diane I don't have any more questions because I can't think right now. I hope I did the right thing and I hope they are true to their word and I hope...I hope...I hope I can keep going with a positive attitude and believe this is just the beginning and Ethan is going to make great gains. They all think this. I do too but still the weight is there...did you do the right thing? All the whispers are there about least restrictive environment and me being his advocate and what if...what if any one of a million bad possibilities?

Okay said my goodbyes and I wait to start crying until I'm in the car with Dan and he tells me it's okay, all the reassuring things, and he means them, and he's so level-headed and I'm so incredibly grateful because I am not. I wipe my eyes and breathe and begin to tell myself we can do this. I can do this. We have a path. We have chosen a certain way and my job now is to make sure the path is headed in the right direction. Our decisions may not have been perfect but God is bigger than that. This mamma will be ready to fight. And if I need to, God will be fighting battles for me and with me.

Everything's gonna be all right...Everything's gonna be all right...

Everything's gonna be all right.

November 1, 2010

Sleep-time Capers

One Saturday last year right around Halloween we heard a pitter patter of feet above us just after we put Ethan down for a nap. Quickly we realized we had discovered how to get out of his crib. The next few days were hellish as Ethan decided what an exciting time it was to jump out of bed and run around, no matter how many times we put him back in there. Then we quickly discovered a glorious invention called the crib tent, which was well worth every cent of the $60 it cost at Baby Depot. Peace returned to us once again.

Fast forward to this summer, when we realized Ethan was not only outgrowing the crib but had broken a slab (never mind this crib was one of the recalled drop-downs). We knew it had to go, so off we went to buy a toddler bed at Babies R Us. What to do about Ethan's escape tactics was one of the first questions on my mind, but then my brilliant engineering-minded husband somehow finagled a way to get the crib tent over the toddler bed. Success! Yes, Ethan didn't have all that much room, but seemed to genuinely like his "cocoon." Our sleep situation remained lovely...two hour naps in the afternoon, bedtime at 8/8:30ish, up at 6:30, although not technically until I went in to wake both of them up (Anna and Ethan have always shared a room) at 7am.

But alas, we knew it wouldn't last. We knew he would outgrow the tent, we knew it'd break down sooner or later and we'd have to face his shenanigans head on. That time has come. And it ain't pretty.

I'm not sure what is so enticing to Ethan about having freedom in his bed, but I know lots of kids, typical or not-so-much so, have this issue. Basically, we put him in bed after doing our usual routine, and no matter how droopy-eyed tired he is, boing! It's like a switch goes on and the moment we leave the room, he's out of bed. And he won't stay in bed unless someone is physically a few feet away, making sure he doesn't get out. The excitement gets him all excited and keeps him (and us) up for hours.

Everyone has an opinion on this. The "Supernanny" theory is just put him back in bed, again and again, not saying a word. Friends have suggested putting a gate on the door and ignoring him. I've heard about sticker charts, social stories, other types of rewards or taking toys away. Someone said spanking. Or just sitting nearby and rubbing his back. Or a weighted blanket.

I look at all of this and think, "I Just. Don't. Know." And in some ways, I know it's a cop-out, meaning, "I don't really want to try." Because let's be honest, being consistent is difficult, and we also want presto-instant results, and life rarely works that way.

From the beginning, Ethan's bedtime capers have brought out all sorts of ugly things in me. First, memories of being a child, when I shared a room with Andy. I don't remember what his sleep time troubles were, but I remember my parents' frustration with him, yelling at him to go to sleep, not knowing what else to do. Then there is the rage that rises up within me when I'm putting Ethan back in bed for the 50th time. I begin to realize how a parent could snap and harm a child. I hate the clenching of my teeth. I hate thinking if I DO spank him, it would be not out of a parent doing a discipline that needs to be carried out but rather a loss of control on my part. I hate the tears of frustration that spring up when I've only been at it for a half-hour. Can't you be a little more perservering without just breaking down?" I scold myself. I hate second-guessing myself and I hate the pity parties. I've held too many of them over the years.

Last night after bedtime shenanigans that resulted in Ethan not going to bed until 10:30 and Anna falling asleep in our bed, Ethan woke up at 4am. Sometimes I think people assume I overreact about his sleep schedule getting off but there it was, like clockwork: two nights of not getting enough sleep and he was starting with early morning wake-ups again. I end up dealing with these kind of wake-ups because Dan sleeps through just about anything. So I went in there and lay on the floor beside his bed and began to think.

I decided to think about 30 things I was thankful for. Why 30, I don't know...I think it was what a guest speaker at church had recommended during a sermon awhile back. And so while Ethan tried to slither his way off the bed, and I continually put him back on, I started. I'm thankful we have beds. Shelter over our heads. Family and friends. Information and support online. Therapists to answer my questions. A full stomach.

At one point I thought Ethan had fallen asleep. I got up and snuck out of the room only to hear his feet on the floor. It was 5am. Back to his room. I got thinking again, about how much worse it could be. I'm thankful Ethan has been doing so great with toilet training. I'm thankful he doesn't smear poop. And for the most part he's ended that taking off the diaper/jammies habit.

I slipped back into bed about 5:15, still thinking as I drifted off. I'm thankful for God's word. For church and Bible study. For teachers like Joyce Meyer ("don't make decisions based on feelings") was her message the other day.

This is not a story about positive thinking and how everything magically changed. I woke up at 6:45 and was exhausted. I lost my temper because Anna stained her clothes again and ended up in tears in the car. Ethan still woke up early and got right out of bed without waiting for me to get him, the pie in the sky goal. I asked his OT for bedtime advice and got no good answer.

Life and our challenges are not about "magic sprinkles" and finding the perfect formula to make it all change. The cliche stands: sometimes the only way out is through. Sometimes we "go through" more admirably than others. Sometimes we just keep on keeping on. Sometimes we're going to make the wrong decision. Through that I suppose we learn more and grow more than we would if we had gotten it right the first time. Sometimes we fail miserably but have to shake the dust off and keep going.

I keep thinking about the verse again, the one about running the race. No, it ain't always pretty. That doesn't mean we don't keep going, though.

God is God

The other day someone sent me a link to an article about a study that found a possible link between autism and jaundice in newborns (and a link between autism and being born in the cold weather months, October-March).

As I was reading I was immediately thrown back to the hazy blur of Ethan's newborn days. He was born November 28 and came home on a frigid November 30. By the next day, I had noticed the yellow in his eyes and we brought him in to be checked. His numbers were just barely under the line to be readmitted to the hospital to go under the lights. Instead they wanted us to bring him the following day, a Sunday, to Saint Frances Hospital to have his levels checked again.

I remember being exhausted and disoriented. My parents took Anna and we headed back to the hospital where Ethan had been born four days earlier. Watching them prick his foot to take blood and listening to his blood curling screams was miserable, for all of us. Again, we learned, his levels were high but not quite high enough to be readmitted. We'd have to keep getting him checked, so the next day I bundled up two kids in an ice storm to go to the doctor's office. I was trying to hold a baby carrier in one hand and Anna in the other and we were all slipping everywhere. In my fatigued delirium I remember thinking, "Is this my life now? Where did my other life go?"

After that for a week I was supposed to undress Ethan and put him in front of the windows to catch the sunlight. The heat was cranked up as this tiny, yellowed thing sat in front of windows on unfortunately mostly cloudy December days. He was so, so sleepy. He was different than Anna. For awhile those first few months I thought it was due to the jaundice, which he did of course recover from. When I read the article I thought about it all again and realized well, maybe in an indirect way, his "different-ness" WAS due to the jaundice, if we're talking about it leading to autism.

Thinking about this began to lead me down a path I didn't want to go. I was changing my clothes to head out for the autism support group, remembering the stress of those first days and thinking all of the things that are pointless to think, the "If only" and "What if?, "Was there something I could have done differently?," and of course, the eternal "Why?"

In the midst of this Ethan came upstairs with a picture he had created with my help at his playgroup. His new thing is trying to show everyone his pictures. He doesn't quite get the complete concept, but the lightbulb is going off and it's so darned cute. He tends to like to show the same pictures over and over, only the ones he does at playgroup, but every time he gets smiles and praise from everyone. His face was lit up with a huge grin, and I just wanted to eat him up. Then he went downstairs, found another painting he did at playgroup, and brought it upstairs to show me. Everything I'd been thinking kind of slinked away. I love my boy so much.

In the car I turned on the radio to the Christian XM station and a song by Steven Curtis Chapman was on. He and his wife are no stranger to "why" questions. A few years ago his adopted daughter was accidentally run over and killed by his teenage son. I just read an incredible book by Chapman's wife Mary Beth about the experience.

The song, called "God is God," begins:

And the pain falls like a curtain
On the things I once called certain
And I have to say the words I fear the most
I just don't know

And the questions without answers
Come to paraylze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must

On this truth that my life has been formed by the dust
God is God and I am not
I can only see part of the picture He's painting
God is God and I am man
So I'll never understand it all
For only God is God

As I listened to the words, I could hear, I could feel the tension in them. The tugging of my soul, of all of our souls, when we face a choice to keep questioning, to continue to hold God accountable for perceived wrongs, or to let go and trust Him. There is something so troubling yet necessary about irresolution. "We live in the tension of creation," Jason Upton sings in one of his songs. We live between the now and the not yet. Sometimes we get a glimpse of what is to come in the form of miracles. Sometimes we wait with no clear answers. And that's where our souls strive because everything in our human nature MUST come up with an explanation.

Or maybe a better word would be, control. Saying we don't understand releases us from control, from explaining it all away with answers that in the end, are just as unsatisfying as the not knowing. Knowing is not everything. Just go back to the Garden of Eden.

"Where did my life go?" I thought blearily during Ethan's first days, feeling that tension of losing control, like many parents of newborns. The funny thing is, somewhere along the way we decide, "I've got this. I can handle this now." Unless life throws us a curveball and the way we wanted it all to go is disturbed.

When heartache strikes and we are faced with questions without answers, do we come to the place where we can say God is God and we are not? Do we acknolwedge that we cannot see the way He sees? Despite the answers and explanations our minds and souls crave, there is sweetness found on that difficult path. I am only now getting just a taste.

Alive

I've always enjoyed the story told in the movie/book "Alive," about the members of an Uruguyan rugby team whose plan crashes on a flight over the Andes in 1972. The survivors were stranded at 13,000 feet. Of those who survived, some succumbed to their injuries. Others died in an avalanche days later. They learned from the radio that the search for them had been called off. Starving, they resorted to eating flesh off the bodies of their friends. Finally, two of the strongest men decided to hike down, somehow, and find help.

A horrific story indeed, and the macabre part of me in the past would always dwell on the gory details. But as I was watching a documentary on the experience the other night, the lightbulb went off. This is a survival story! There is so much more to it than the tragedy.

The men who went hiking down the mountain had to first climb up a practically sheer wall of rock, the whole time climbing without gear or proper clothing and with the misconception that they were on the edge of the Andes and just over that peak would be the beautiful green Chilean countryside down below. They did not realize that their plane had crashed in the middle of the Andes, and so when they reached the top of that peak, after three grueling days, all they saw, as far as they could see, were mountains, more mountains, the glare white of impossible snow-capped peaks. They sank to the ground in despair. But then they got up again and kept walking. Said one of them in retrospect, "The only reason we went forward is because we knew we couldn't go backward. We felt we would die out there, but we knew we had to at least die trying."

They hiked nearly 40 miles in 10 days. They didn't die trying, even though every step felt like it. The men encountered a rancher and were rescued, 72 days after crashing in the Andes.

As I was watching I kept staring at the jagged peaks, the solitude, the awful beauty, the impossibility. How many of us have had those moments where we think we are past something, have accomplished something, are close to our goal, only to suddenly reach the top and realize the journey will be so much more difficult, heartbreakingly difficult? How many times have we pushed forward only because we know we can't go back? There are moments that all we can do is put one foot in front of the other and know we are moving even if it doesn't feel as if we're making any kind of dent in the distance.

At the end of the ordeal, in retrospect one of the men said, "Life is so much more simple than I thought." The journey was complex, but life was simple. Life is simple. "Life is love," he said. "There are so many things I thought were important that were not."

Words to remember, as we journey through this life. What we value, what we treasure, what we hold close to us, can make all the difference in the trip.

Set your minds on things above, not on earthly things. - Colossians 3:2

An Anna Break

This blog ends up being mostly about Ethan and our adventures in autism, but I don't mean for Anna to get left out in the cold. It's time for an Anna break.

Every day Anna gets off the bus and the first thing I'm reminded of is the little girl in the Norman Rockwell painting who's sitting outside the principal's office. Anna's got three teeth missing, and as she steps off the school bus she's usually got her jacket slung over one arm and her backpack half open trailing behind her, with things falling out of it. Her shirt is untucked, her clothes are somewhat dirty from the playground, and usually her knee socks are rolled down to her ankles or her tights have a hole in them. She's almost always smiling.

"My team won!" she announces many days. This is the highlight of first grade so far; which of the three teams won for that day and got to pick something from the prize box. If her team lost, she's usually passionately upset for a few minutes, but in true Anna fashion, gets over it. Or gets lost in doing a craft, which helps her get over it.

My daughter is an optimist. I love this because I am not. I fully appreciate her sunny disposition. I learn from it. I marvel at what it must be like to always see the glass as half full, and then realize that while that may not come naturally, I can still choose to live and think that way, with practice.

The other day we were raking leaves while she and Ethan were taking breaks to jump in them, and in the middle of it all, she exclaimed, "Mamma, I just realized something!"

"What?" I asked expectantly.

"Work can be fun!" It was as if she'd discovered a treasure. And really, she had. To me, one of the secrets to fully enjoying life is to find joy and pleasure in hard work.

The other day she came home with some cheap iCarly electronic thing from the prize box. It had an electronic face that kept changing expression....happy faces, silly faces, sleepy faces, sad faces. "Look what I won!!' she kept saying. "I'm so happy!"

After receiving proper congratulations from me, she stopped to think a moment. "You know what?" she said. "We could use this to teach Ethan about emotions!"

Ack, my girl. I just love her to pieces. She is truly a gift.

Finding Joy in Shadows

I came across a video online the other day of a young woman with Asperger's who was addressing the question often posed to her: would you take away your condition, if you had the ability? Her answer, told eloquently, was no, because that would be taking away all of her. Her Asperger's is an intrinsic part of who she is, of her makeup. Taking that away would be like leaving her...well, as a completely different person, not herself.

I know there's this movement out there, the "aspies" and "auties" vs. the "neurotypicals," rife with lots of emotion and the claim that there isn't so much anything wrong with people on the spectrum as there is with the neurotypicals who help set the guidelines as to what is normal and acceptable societal behavior. And then there are those who consider autism a disease to be cured.

In this argument I fall somewhere in the middle. There is no doubt that everything about autism is not inherently good. When autism becomes dehibilitating, destructive, violent -- how can that be celebrated?

And yet...and yet, I think I understand what the girl with Asperger's is saying. I think I have an inkling. Autism is not like cancer. A cancer you cut out and remove. What you learn from it may be a blessing, but there is nothing physicially, intrinsically good about cancer. It must be destroyed.

Autism, in its milder variations, is more like a perspective; a different way of taking in the world. It's something that weaves its way through the mind, through the emotions, through the senses. In some ways that means the world almost "explodes" around them, and people with ASD are left to figure out how to process the information coming in and overwhelming them. They do this in ways that are difficult to understand. But maybe we should try to understand.

There is that famous scene from the film "American Beauty" that always sticks in my mind (http://youtube.com/watch?v=xu8_8TJC9E8). I found the film as a whole to be rather dark and disturbing, but I've always loved the part when they're watching filmed images of a plastic bag, as it gets tossed back and forth by the wind on a late autum day, dancing a beautiful, graceful dance in the air, on the ground, in the air again. "That day," says the teenage character in the movie, about filming the bag, "I realized that there is this entire life behind things."

Ethan loves shadows. He loves lights, fans, and storm drains. He loves the way the light from the hall casts a long shadow across the door in his bedroom, and the way that shadow moves as the door moves. He loves the satisfying plop that comes from the sound of a rock dropping into the water at the bottom of the storm drain. He loves the hum of a ceiling fan high above him. He loves to point out the sun as it pops in and out of clouds. He treasures finding tunnels and loves places where he can make his voice echo. "Echo! Echo!" he calls as we walk into Target every week. His voice bounces off the cement ceiling at the entrance and he smiles.

We can call these things weird and quirky, we can get annoyed by them at times, and that's okay. But I've found I can also choose to notice something: the joy Ethan finds in the mundane. The little, amazing details about this world that we pass right over on our rush to do something more interesting.

The other afternoon after days of rain the sun came out. Ethan woke up after his nap and found it there. He was especially overjoyed because Ethan knows when the sun comes out it brings back the shadows to our living room. It's a little hard to explain, but our living room has windows angled in such a way, some facing a main road, some facing the sun at that time of day, so that in the late afternoon every car that goes by throws a patch of light that then moves across the ceiling as the car moves.

"Shadows!" Ethan cried as he walked downstairs and looked at the living room ceiling. On the cloudy days, this afternoon show disappears. Ethan's whole face was lit up by a grin. He stopped there on the stairs and waited for another round of cars to go by. I stopped with him. We watched the light move. Sometimes just a quick line as a car sped by. Other times, "Shadows stop?" Ethan pointed out. The light moved and then stopped. It must have had something to do with the traffic stopping (we live not far from a traffic light). This line, this swath of light stopped on the ceiling above the fireplace for a few minutes, then moved on and disappeared.

We stood there watching. And this time I saw, I really saw the brilliance of yellow leaves on the maple in front of the house. I saw the way the sun streams through the window in our entryway in a brilliant way at just this time on fall afternoons. I appreciated the warmth and color that light brings after days of gray. We've lived for nearly seven years in this house, and I've complained plenty of times about the traffic in the aftneroons, but never noticed the way the cars create the dance of light and shadows.

Autism is more than having knack for noticing detail. Autism can also mean a way of discovering the simple beauties all around us. Autism can show us how to find joy in shadows and to see what is right in front of us in a different way. Amazing things happen, I think, when we choose to see differently.