Friday, October 29, 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.

Thursday, October 28, 2010

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.

Friday, October 22, 2010


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

Thursday, October 14, 2010

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.

Sunday, October 10, 2010

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 ( 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.

Monday, October 4, 2010

Making a Connection

So, Ethan's been going for outpatient speech for about three months now. I thought it would be a good idea since he really experienced a language explosion awhile back and Birth to 3 technically only allows for an hour hour of speech a week. I thought it would be a good idea, but now I'm not so sure. Ironically, Ethan's outpatient speech appointment is usually the place and time he uses the least amount of language.

Way back at the beginning of Ethan's therapies, I talked about going back and forth between which kind of therapy to sign him up for, ABA (the structured, standard type of ASD therapy) vs. Floortime (the play-based, less proven, let-the-child-take-the-lead mindset). In the end we chose ABA, but a kinder, gentler, more intuitive program that still lets the child be a child, and I've never regretted the decision. Most of the people Ethan sees subscribe to this method. Most, but not all.

Picture this: old school ABA would be a child sitting at a table or in chair, looking at flashcards, doing repetitive tasks that are reinforced with some sort of treat. I am not denying that there are children who need this type of therapy. But I also know it's not right for Ethan.

Ethan's outpatient speech therapist, Jen, is a lovely woman who is open to new ideas and is kind and friendly. She's great at what she does. What she has is a fountain of knowledge about how kids with autism are "supposed" to receive speech therapy. And so when Ethan goes into the room, he sits in a chair for a half-hour. She uses PECS (a picture communication system) to talk about everything we're going to do, because kids with ASD like to know what's coming and PECS is often a useful way of demonstrating that. Even saying hello and goodbye is on the picture schedule. Every word is slowly enunciated. Every action is meticulously planned. Last week it was showing him how to use three different types of toy foods on the pretend stove. Everything is rote and when he's in there and not acting passive aggressive (his behavior of choice at this appointment) I can almost see the gears turning in his head. He's not learning, he's just deciding to repeat exactly what they're telling him to do because he wants them to stop bugging him. The joy has gone out of it.

Again, some kids need this and some kids will only learn by this type of method. But I know Ethan is capable of more. I know because I've seen it. The challenge is, sometimes I know some tinkering is in order but I'm not sure what. I thought getting him out of the chair would work, so I asked them to be a bit more casual and let him play on the floor. In other situations this works, but now I think he's SO nervous coming to this appointment, and feels SO much pressure, all he does is play with the puzzle-piece mat beneath him and try to connect the pieces over and over.

I can understand how he feels. I imagine walking into a room and having someone say in a sing-songy voice, "Hello Deb. What would you like to do today? Let's look at our pictures. First we're going to say hello. Hello Deb!" (Ethan usually looks at the "Hello" PECS picture on his schedule and says "Bye-Bye" because he wants out of there). I imagine the person speaking slowly, almost soothingly and hypnotically, "Would-you-like-to-play-with-dollhouse-or-toy-food?" "Which-one?" Then waiting. Then not getting an answer so saying "Okay. I choose food." Then having someone tell me I can only choose a certain three foods and then must put them in a certain pot and then in a certain place in the stove that's functioning as the pretend oven and then making a ding! sound when it's done, and then do the same thing in the same way with another type of food, and then another, because that meets the objective of learning to play flexibly in three different ways.

Ethan's not having much of this, because he's not feeling it. He's not making a connection. "I wish," said his main therapist, Jessica, when I told her about some of this, "that she would just throw some of the things out of the window about how you should do speech with a kid with autism and just talk to him. Just say hi. You don't need a picture for that."

Which is why I could just hug Jessica. Which is why I'm so grateful we've had her around for almost a year now (but will - sniff! - soon say goodbye when Ethan turns three).

This morning Ethan had an appointment at home with Theresa and Amber, who are great. Out of all of his therapists, I'd say Theresa is the most strict with the classic ABA stuff, though, and sometimes it causes Ethan to tense up. At first he didn't want to leave his keyboard, which is typical. Usually once he decides he's ready to start, though, he'll plunge into his routine. We do pictures but it's not so much for communicating...they aren't the offical PECS pics, just photos of toys around the house. It gives him an idea of what's coming and gives him some choices.

"What do you want to play?" asked Theresa, and Ethan went over to his trains and began taking them out. He had a gleam in his eye. He likes his trains, and yeah, he usually plays with them the same way, but he loves them. They make him happy.

"Wait, we have to put more pictures on your schedule," said Theresa. "What are we going to do next?"

"Trains!" cried Ethan. He was setting up the tracks, motivated.

"What else do you want to do, Ethan?" asked Theresa. "We have to fill up your schedule. Do you want to do Potato Head, or Etch a Sketch?" This is a conversation we might have on any given day, but something today was different.

Theresa took the box of train stuff away from Ethan until he answered her question. His eyes filled with tears and he began crying in earnest. "Move please, move please!" he asked her, wanting the trains back.

"Remember, I have a two-year-old, too. I'm used to these tantrums," she said to me as I stood watching from the other room.

I couldn't answer at first because there were tears in my eyes and a catch in my throat that I was trying to swallow. I don't think this is just a tantrum, is what was racing through my mind. My boy just wants to play with trains like any other kid. He doesn't want to have to go through a schedule. Maybe that's good and he enjoys that on another day but today he just wants to live in the moment and play with his trains and not plan everything out and have to talk about what he's going to do before he does it. He just. wants. to. play.

I murmured a few words about him wanting to enjoy his trains and Amber got my point. She took the laminated board and all of his pictures, turned them upside down, and raked them into a little pile out of sight. "You know what? Let's forget about the schedule this morning," she said.

And so we did. And Ethan played with trains, and his gear toy, and his puzzles and more puzzles. There were no more tantrums. There was lots of spontaneous conversation and best of all, smiles. Fun. Excitement.

The best kind of learning and relating is accompanied by an emotional connection. That goes for all of us. That goes for all of life. How many times do we talk about how difficult it is to do something 'if our heart's not in it?' That goes for God, too, for things of a spiritual nature. I think about this all of the time. God is not the demanding God insisting I check off my checklist of good Christian deeds to earn the favor. God is the parent longing for us to make the connection, longing to see His children play rather than strive and stress, and make good choices because they want to, not because they have to.