Wednesday, December 29, 2010

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.

Thursday, December 23, 2010


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.

Monday, December 20, 2010

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.

Wednesday, December 15, 2010

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.

Sunday, December 12, 2010

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.

Friday, December 10, 2010

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?

Thursday, December 9, 2010

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.

Monday, December 6, 2010

Potato Chips


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.

Saturday, December 4, 2010

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.

Thursday, December 2, 2010

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.