I heard the music before I saw them.
This was Sunday. At church, I had volunteered in the toddler nursery, and after the parents had picked up their kids and I had picked up the clutter, I realized why Dan hadn't come by with the kids to get me. I'd completely forgotten. Today was the first children's choir practice for the Christmas presentation.
I followed the music down the hallway to the fellowship hall. From the doorway I saw them in a half-circle around "Miss M.," a talented music teacher who also happens be the pastor's wife. The rest of the children were Anna's age. There was Anna, reluctant because although she is a wonderful singer, singing is just not completely her "thing." And there, for the first time, stood Ethan.
Two years ago I couldn't fathom him being here. Last year, he was just at the age to start, but wasn't ready.
Ethan held a crumpled sheet with song lyrics on it, although he cannot yet read. Miss M. was asking, "Does anyone know what it means when we say 'singing with accompaniment'?" To my shock, Ethan raised his hand, and then of course had no idea what to answer, as did the rest of the kids. Miss M. graciously answered for him, and he nodded and smiled.
The children were listening, humming along to this song about a long-ago night in Bethlehem:
Lonely hearts strung across the land
They've been waiting long for a healing hand
My heart was there and I felt the chill
When Love came down and the earth stood still
When Love came down and the earth stood still
He's doing this, I couldn't help but thinking. I can't believe he's doing this.
Other parents might have thought of this whole singing thing as cute. Sweet. Maybe, if the family is overbooked, a chore. But for us, this was something else.
Here in this church basement room late on a Sunday morning, my own world was standing still.
I'd watched typical kids up on stage in their Christmas best with a lump in the back of my throat that couldn't be swallowed, wondering if my child could ever do that.
I'd put a mountain-full of dreams for my child up on a shelf...only to realize that maybe they all didn't belong up there after all.
The kids were fumbling their way through the song. "Ethan was really singing, Mamma!" Anna would report later, but I already knew. I had heard him. He was not only singing, he was singing most of the unfamiliar melody correctly, his supersonic hearing picking up on nuances in the notes before the other kids did.
I have no idea how Ethan will do in December up on a big stage with bright, hot lights. But I know this: when we got home that day, Ethan said he wanted to go straight to his room to listen to his music and practice. For 45 minutes I heard him up there singing, learning the words, doing his best to get it right. After awhile I stuck my head in the doorway.
"I am the music teacher," he told me. "And these are the kids listening to the music." He waved his hand towards his bed.
"How many kids are there?" I asked.
"Six hundred!" was his reply.
The music went back on, and I tip-toed down the stairs. Who knows? I could only think. There was something paradoxically freeing about not knowing the answer. Who knows?
There will never be any way to know what the future holds. But the not-knowing can't mean you stop believing.The not-knowing doesn't mean that something good isn't going to happen, that miracles big and small can't happen.
When Love came down and the earth stood still.
Thank you, God.
Thursday, September 27, 2012
Tuesday, September 25, 2012
Running Club
Sunday afternoon we did something rather out of the ordinary for our little family.
We laced up our sneakers, threw on something other than jeans, and headed to the track at Saint Joseph's College.
Yes, we went running.
How did this happen? I have to thank this incredible organization for offering what they call "Running on the Spectrum:" an eight-week running club for kids with autism, their siblings, and their parents. Essentially, everyone meets and warms up, then takes off running for as long as they want on the track. Every time kids do a lap, they get a popsicle stick. At the end, the coaches track everyone's laps (and progress each week), lead everyone in doing stretches, and the kiddos get a small prize.
Upon our arrival, Ethan was immediately whisked into the air by a girl in her tweens who was very eager to make friends. Her mother stood nearby, continually cautioning her to "make sure it's okay with him" and "leave him some space." One boy sat off near a tree with headphones over his ears. Another paced next to his parents anxiously on the nearby pavement, rubbing his sneakers in a patch of sand. Three kids were rolling down the hill in back of us. A boy a little younger than Anna was talking loudly about how excited he was.
I watched the kids rolling down the hill and even though we had signed up for the event due to Ethan, I wished my brother Andy were there. He's 30 years old and never passes up an opportunity to roll down a hill.
We stood waiting for awhile for a few stragglers. I could see the tension in some of the parents' eyes, that look that said This Thing Needs to Start Soon or He's Not Going to Make It. One of the leaders decided to start a game of Duck, Duck, Goose. And while some of the kids were teenagers, and half ran in the wrong direction, and the other half needed five people to tell them they'd been tagged and what to do, somehow, it worked. Everyone laughed. None of the details mattered. This was a safe place.
And that was just the point. Every one of these families technically could have gone to a local track in their own town that sunny, crisp afternoon, or jogged off together in their neighborhood, except, well, probably they couldn't have. Not without complications. Not without the stares or maybe dirty looks. Not without possibly worrying about their child's safety, if he happened to dart off and away, or into the street. Not without a fear of judgment at a meltdown.
On the track, the kids went crazy. Our kids, I mean. Anna did two miles and barely stopped once. Ethan limped along but wanted to keep running. I think he went seven times around, half-running, half-walking. Along the way we saw kids skipping and galloping, jogging and dragging along at a turtle's pace. We saw parents cajoling their kids onto the track; kids sit and decide they were DONE; a girl sandwiched between two parents, one holding each arm, catching the breeze like a broad kite.
We heard laughter. Lots of laughter.
As we finished our laps I couldn't help but think of the irony. Maybe irony isn't the right word. I couldn't help but think that so often people associate autism with running, as in "Watch out -- he's a runner. Keep your eyes on him or he'll be out of your sight down the hallway in a minute." I remembered my brother, always running. He ran out of the nursery in the church one Sunday, up to the very front of the sanctuary, around and back again, with scores of astonished eyes on him. He got the best of a chain lock on the kitchen door another time and darted across our apartment complex in his underwear. In a panic, we rushed after him, praying for no cars.
So many times running and autism are negatively linked -- yet here we were, turning the usual assumptions upside down. Here we were, turning the kids loose in a place where they could run with abandon; run until they could run no more. And they were drinking in every moment.
Every time we attend an autism-specific event I am reminded how minimally our own family, and Ethan, are impacted by autism, in the grand scheme of things. And I am always reminded of my brother. I wonder what it would have been like for him to participate in such events when he was younger...what it would have been like for me, as a sibling. I wonder how much it would have meant to see that we were not alone, that we were in a place where it was okay to just be who we were, all of us. I can't be sad anymore, thinking about what was missing back then. Instead I am incredibly grateful that the next generation is living it differently. They are writing a better story. I am glad to be a small part of it.
We laced up our sneakers, threw on something other than jeans, and headed to the track at Saint Joseph's College.
Yes, we went running.
How did this happen? I have to thank this incredible organization for offering what they call "Running on the Spectrum:" an eight-week running club for kids with autism, their siblings, and their parents. Essentially, everyone meets and warms up, then takes off running for as long as they want on the track. Every time kids do a lap, they get a popsicle stick. At the end, the coaches track everyone's laps (and progress each week), lead everyone in doing stretches, and the kiddos get a small prize.
Upon our arrival, Ethan was immediately whisked into the air by a girl in her tweens who was very eager to make friends. Her mother stood nearby, continually cautioning her to "make sure it's okay with him" and "leave him some space." One boy sat off near a tree with headphones over his ears. Another paced next to his parents anxiously on the nearby pavement, rubbing his sneakers in a patch of sand. Three kids were rolling down the hill in back of us. A boy a little younger than Anna was talking loudly about how excited he was.
I watched the kids rolling down the hill and even though we had signed up for the event due to Ethan, I wished my brother Andy were there. He's 30 years old and never passes up an opportunity to roll down a hill.
We stood waiting for awhile for a few stragglers. I could see the tension in some of the parents' eyes, that look that said This Thing Needs to Start Soon or He's Not Going to Make It. One of the leaders decided to start a game of Duck, Duck, Goose. And while some of the kids were teenagers, and half ran in the wrong direction, and the other half needed five people to tell them they'd been tagged and what to do, somehow, it worked. Everyone laughed. None of the details mattered. This was a safe place.
And that was just the point. Every one of these families technically could have gone to a local track in their own town that sunny, crisp afternoon, or jogged off together in their neighborhood, except, well, probably they couldn't have. Not without complications. Not without the stares or maybe dirty looks. Not without possibly worrying about their child's safety, if he happened to dart off and away, or into the street. Not without a fear of judgment at a meltdown.
On the track, the kids went crazy. Our kids, I mean. Anna did two miles and barely stopped once. Ethan limped along but wanted to keep running. I think he went seven times around, half-running, half-walking. Along the way we saw kids skipping and galloping, jogging and dragging along at a turtle's pace. We saw parents cajoling their kids onto the track; kids sit and decide they were DONE; a girl sandwiched between two parents, one holding each arm, catching the breeze like a broad kite.
We heard laughter. Lots of laughter.
As we finished our laps I couldn't help but think of the irony. Maybe irony isn't the right word. I couldn't help but think that so often people associate autism with running, as in "Watch out -- he's a runner. Keep your eyes on him or he'll be out of your sight down the hallway in a minute." I remembered my brother, always running. He ran out of the nursery in the church one Sunday, up to the very front of the sanctuary, around and back again, with scores of astonished eyes on him. He got the best of a chain lock on the kitchen door another time and darted across our apartment complex in his underwear. In a panic, we rushed after him, praying for no cars.
So many times running and autism are negatively linked -- yet here we were, turning the usual assumptions upside down. Here we were, turning the kids loose in a place where they could run with abandon; run until they could run no more. And they were drinking in every moment.
Every time we attend an autism-specific event I am reminded how minimally our own family, and Ethan, are impacted by autism, in the grand scheme of things. And I am always reminded of my brother. I wonder what it would have been like for him to participate in such events when he was younger...what it would have been like for me, as a sibling. I wonder how much it would have meant to see that we were not alone, that we were in a place where it was okay to just be who we were, all of us. I can't be sad anymore, thinking about what was missing back then. Instead I am incredibly grateful that the next generation is living it differently. They are writing a better story. I am glad to be a small part of it.
Friday, September 21, 2012
Sometimes, They're Just Being Kids
Last year at Ethan's old school, every day at drop-off, I would watch. Mrs. H. was in charge of corralling the kids, of making sure every preschooler and kindergartner got to where they were supposed to be going (without running!). She was a pro. I miss Mrs. H., who is now a para at Ethan's school. I believe she knew the name of every child and possibly every parent in the school.
One thing I always noticed about Mrs. H. is that she enjoyed saying hi to the lines of kindergartners shuffling off the bus and down the hallways. The thing is: most of them didn't answer back. Most of them barely looked her way. In response, she did absolutely nothing. She didn't stop them and say, "Excuse me, Makayla? I said hello. What do we say when people greet us?" She didn't force them to answer. She just smiled as they marched on by.
I've had a couple of eye-opening conversations over the last few days. Both were with speech therapists: one at CCMC, where Ethan is going to be starting up speech and possibly a social skills group again, and the other was with Mrs. D., his speech therapist at school.
Both of them surprised me by commenting that Ethan, save for a few syntax errors, is technically pretty on par for speech for his age. Mind you, I didn't say on par for social interactions, for using speech socially, for verbal reasoning. Just plain, straight-out speech. Still, that surprised me. He's going to start a social group at school two days a week around lunchtime with kids in kindergarten, because that's where he's at (Ethan is technically old enough to be in kindergarten in this state, although he would have been a very young kindergartner).
I thought about how many times I look at Ethan and automatically see the deficits. I assume he's behind in so many areas. I don't see him that often in a setting with other kids, and I'm not too often around other kids his age, so I forget. I hear his stumbling over a word or questions out of left field and sometimes assume so quickly that a kid his age would be past that point. I see the meltdown and just chalk it up to his social immaturity, that another kid his age probably wouldn't be doing that. I watch him play with just one toy and want to just be around me and and completely dismiss the fact that Anna has always been the one to play with one or two toys, and that for many years she hated playing alone and preferred hanging out with me in the kitchen.
This is so wrong.
In the hallways at pick-up time this year at the end of the day, teachers say bye to Ethan. There are about 150 other kids rushing by and the noise and general chaos is pretty overwhelming. He usually doesn't hear or doesn't answer. There's just too much going on. And yet I've found myself growing annoyed, thinking that he's been taking speech for years and darnit, by now he should be able to say hi and bye.
Mrs. D. spoke to that the other day, when we were meeting. Some of her kids on the spectrum, she said, are so stressed by every person, every paraprofessional, every teacher, every therapist, they pass in the hallways expecting and sometimes forcing them to say hi, that they shut down and stress out.
"We expect so much of them," she said. "We expect hellos when we don't even expect them from the typical kids."
Ouch.
I thought of how many times I've gotten in Ethan's face, speaking in "therapy voice." I thought again of the interactions I've seen, the way all kids act like kids, like individuals, typical or not. They don't follow the script of any social skills curriculum. I thought of the way I must remember: my child is not a robot, and he's not a walking diagnosis. My child is just a kid. What a disservice it is if I don't see him as that first.
One thing I always noticed about Mrs. H. is that she enjoyed saying hi to the lines of kindergartners shuffling off the bus and down the hallways. The thing is: most of them didn't answer back. Most of them barely looked her way. In response, she did absolutely nothing. She didn't stop them and say, "Excuse me, Makayla? I said hello. What do we say when people greet us?" She didn't force them to answer. She just smiled as they marched on by.
I've had a couple of eye-opening conversations over the last few days. Both were with speech therapists: one at CCMC, where Ethan is going to be starting up speech and possibly a social skills group again, and the other was with Mrs. D., his speech therapist at school.
Both of them surprised me by commenting that Ethan, save for a few syntax errors, is technically pretty on par for speech for his age. Mind you, I didn't say on par for social interactions, for using speech socially, for verbal reasoning. Just plain, straight-out speech. Still, that surprised me. He's going to start a social group at school two days a week around lunchtime with kids in kindergarten, because that's where he's at (Ethan is technically old enough to be in kindergarten in this state, although he would have been a very young kindergartner).
I thought about how many times I look at Ethan and automatically see the deficits. I assume he's behind in so many areas. I don't see him that often in a setting with other kids, and I'm not too often around other kids his age, so I forget. I hear his stumbling over a word or questions out of left field and sometimes assume so quickly that a kid his age would be past that point. I see the meltdown and just chalk it up to his social immaturity, that another kid his age probably wouldn't be doing that. I watch him play with just one toy and want to just be around me and and completely dismiss the fact that Anna has always been the one to play with one or two toys, and that for many years she hated playing alone and preferred hanging out with me in the kitchen.
This is so wrong.
In the hallways at pick-up time this year at the end of the day, teachers say bye to Ethan. There are about 150 other kids rushing by and the noise and general chaos is pretty overwhelming. He usually doesn't hear or doesn't answer. There's just too much going on. And yet I've found myself growing annoyed, thinking that he's been taking speech for years and darnit, by now he should be able to say hi and bye.
Mrs. D. spoke to that the other day, when we were meeting. Some of her kids on the spectrum, she said, are so stressed by every person, every paraprofessional, every teacher, every therapist, they pass in the hallways expecting and sometimes forcing them to say hi, that they shut down and stress out.
"We expect so much of them," she said. "We expect hellos when we don't even expect them from the typical kids."
Ouch.
I thought of how many times I've gotten in Ethan's face, speaking in "therapy voice." I thought again of the interactions I've seen, the way all kids act like kids, like individuals, typical or not. They don't follow the script of any social skills curriculum. I thought of the way I must remember: my child is not a robot, and he's not a walking diagnosis. My child is just a kid. What a disservice it is if I don't see him as that first.
Monday, September 17, 2012
Journey to Diagnosis: Lessons Learned
We were driving to a speech reevaluation this morning in the same hospital department where Ethan got his autism diagnosis, and that got me thinking. It's been almost exactly three years now. We've come so far, and sometimes those days seem hazy. But how did Ethan end up being diagnosed at just 22 months old (I think the average age for diagnosis is closer to 3 or 4)? I thought I'd talk about our journey. Maybe it will help someone, somewhere.
A disclaimer: this is of course, our path. We all know every child is unique. Every story, every autism, is complex. No two will ever be the same. One child's early symptoms could manifest into absolutely nothing in a different child. But often, there tends to be common themes.
Due to my brother's autism and the fact that I'm a worrisome type to begin with, I was most likely looking for autism signs in Ethan earlier than the average parent. So, I'm going to start at the beginning:
The Earliest Months (Birth-6 months)
Ethan was a sleepy baby. He was a really sleepy baby, but he had developed jaundice at three days old, so we chalked it up to that. Every child with an older sibling is compared to the one(s) before, so naturally we noticed Ethan was less alert, more fussy, and less smiley than his big sister. He did smile, but didn't give me his first really consistent grins until he was about eight weeks. When he around four months old, I took him to have pictures done and noticed the photographer (a new guy with little enthusiasm) had a really hard time getting him to smile. I took him to a different place a week later, however, and the guy got all kinds of smiles out of Ethan. This up and down, sometimes- social, sometimes-not behavior would become a common trend.
Ethan also learned to pick up his head and roll later than Anna (eventually we would realize this was due to low muscle tone), but not outside average parameters.
There was one other thing that jumped out at me. One day I saw a friend with a baby the same age with fruit in a mesh feeder, and the little girl was just gnawing away at the thing, sucking fruit out. I watched and realized that I had never thought to feed Ethan in that way, in part because I didn't think he could figure out how to do it. I couldn't understand why he wouldn't be able to, but I knew he wouldn't. Similarly, a few months later I was amazed to watch a child younger than Ethan pick cheerios out of a container, one by one.This was the kind of fine motor, sequenced skill that parents watch their kids do and don't think anything of...until they realize their child has never tried to, or tries to but can't.
6 to 14 Months
Somewhere between six to eight months, Ethan had a big developmental spurt. He learned to crawl; he got playful with his sister; he was very smiley and giggly, and sometimes seemed to be trying a few words. He seemed like a different kid. Any concerns I had about his development subsided...until he began to reach about a year old. Something was up and I couldn't put a finger on what. He seemed a little less aware and much younger than his sister had at that age. I chalked it up to him being a boy. He had a few words by one year. He would infrequently say Mamma and sometimes Dadda or Anna. I noticed he was just as enthusiastic, however, about saying "light" and "fan." I also didn't realize it at the time, but Ethan wasn't the type to do a lot of talking back at you. If you started talking to him, he would engage, but you had to keep things going, you had to work hard, or you'd lose him. When I look back at video I see that Ethan was very much paying attention, but he wasn't doing anything to continue the interaction. He was waiting for someone else to do all of the work.
15-17 Months
When Ethan was 15 months old, I was working on a freelance video project that involved filming a little girl just a bit younger than he was. When we went to the girl's home, I was immediately caught off guard when she called out "hi!" and seemed genuinely happy to see us. She didn't say much else. It wasn't the words that stuck in my mind...it was her eagerness to engage in some way. Again, I wanted to attribute this to her being a girl and naturally more social. But a few weeks later, I began to notice Ethan didn't seem to show much expression when people arrived or left. And when I left him with my mom one day, went to say goodbye, and he looked right through me as if I wasn't there, that's when I knew. I knew something was wrong. I got on the phone and called our local Birth to 3 early intervention program to schedule an evaluation.
18 Months
Ethan's initial evaluation took place a month later. He was almost exactly 18 months old. The experience, in retrospect, was unacceptable. Basically, two supposed professionals came into our home and asked me questions, then attempted to engage Ethan with their toys. When he wouldn't respond for the most part, they summed up their visit with a checklist that gave him two autism "red flags" and told me he would have had more, but since they based their list not on behavior they observed but on things I confirmed he could do, even if he wasn't showing them, they said it didn't warrant enough for further testing right now. "You'll probably just want to keep an eye on him and maybe have him reevaluated in six months to a year," they told me. Oh yeah, and before they left they also advised that I put away all of his toys with lights and buttons to encourage him to play with other things. Whaaaat???
I wasn't satisfied. At Ethan's 18-month appointment with the pediatrician right around that time, I again expressed my concerns. He gave me the MCHAT (Modified Checklist for Autism in Toddlers) to fill out. Some of the questions threw me. One specifically asked, "Does your child point to things to draw your attention?" Now I know that is a question attempting to decipher if the child has joint attention, or the ability to draw your attention to something or to look at the same thing you are looking at. I checked "yes" because Ethan did point (some children with autism cannot) and he would say things like "Airplane!" and point excitedly. What wasn't clear, however, is that true joint attention is a child pointing, checking in with the adult, then looking back at the object. It's a subtle but important difference. Again, Ethan had a few "red flags" but according to the pediatrican not enough to warrant immediate follow-up.
19-22 Months
I disagreed with our pediatrician, but waited for a little bit, because Ethan again hit one of his amazing phases where suddenly he was more engaged, more social, more chatty. Once again I thought he was on the verge of really exploding developmentally, and maybe everything was in my head. To top it off, everyone in my family, including Dan and my parents, who have raised a child with autism, also thought I was overreacting.
One day that summer we were in the bathroom at Old Sturbridge Village, of all places, and I heard a woman come in and ask a another mom how old her toddler was. He was Ethan's age, almost exactly. "What's your favorite animal, sweetie?" she asked. "A giraffe," he answered. I was floored. Ethan was so far from being able to do that at that point, again the rock dropped in my stomach. Something was wrong. I got on the phone and called a well-known developmental pediatrician in the area who runs a program designed to diagnose kids with autism as soon as possible (the program is actually called ASAP). I was shocked to find out the waiting list for a "quick result" was still eight months. Three times I called, begging to get in earlier. I used my family history as a trump card. Thankfully, that worked. An eight-month wait became two months, and in September 2009, Ethan was diagnosed in about an hour and a half. At the time, he had about 15 words and 5 he used daily. He wasn't yet combining words, and had few play skills beyond pressing buttons. He spent the last half of the appointment lying on the floor, no longer wanting to cooperate. His score on the CARS (Child Autism Rating Scale) was 36, or moderate autism. Above a 37 is considered severe.
Lessons Learned
1. Everyone always says this, but it bears repeating: trust yourself. Don't trust your doctor, don't trust your family, don't even trust the people who evaluate your child if it doesn't sit well with you. You know your child. We moms especially were given the gift of intuition for a reason. Instead of panicking, think, "What's the worst that can happen if I'm wrong, if I'm overreacting?" If a diagnosis is wrong, that will become clear over time. Which leads me to:
2. Some people are afraid of labels. Don't be. Parents don't want to rush to have their child diagnosed, feeling it's a "black mark" that will stay with them forever. These days, however, a diagnosis can be critical to getting your child much-needed services. In particular as the diagnostic criteria for autism spectrum disorders is changing (and in some opinions narrowing), getting an early diagnosis can mean the distance between giving your child a head-start on therapies and having to fight desperately to get anything. Again, what's the worst that can happen? Your child receives therapies he doesn't really need, progresses quickly, and is discharged? Schools don't really want your child to have a label -- kids in the special education system cost them big bucks -- and half the time they're trying to rip labels away prematurely. A label is not going to stick if it's obviously incorrect.
3. My final point harkens back to our quest to find out exactly what was going on with Ethan. If you're concerned that a child has ASD and are searching for symptoms to confirm, look at the big picture, the sum of issues, rather than individual symptoms, the cliche-type issues portrayed on TV shows or in movies. If I was going to diagnosis a child according to Hollywood, Ethan would have been a savant making fantastic algebraic calculations but unable to say hi, obsessively lining up cars, covering his ears and perhaps rocking back and forth, humming. Ethan did none of those things at the time of his diagnosis. He also had never flapped his hands or walked on his toes. His speech delay alone was not enough to make me think autism. Over time, the clearest sign to us was an overall weakness in connecting, communicating and sharing of himself with others, and a desire for objects over human interaction.
How did I know I'd end up writing a treatise here? I guess because it's something I'm passionate about. I say that not because I think we did everything right, but because I'm amazed even now how many times parents' concerns are downplayed by pediatricians and other supposed "experts." I have talked to many people convinced they should just take a "wait and see" approach. I've seen others stressed about their child displaying one autistic symptom and are needlessly fretting he must be on the spectrum. There is still a lot of misinformation and confusion out there.
Getting a diagnosis for your child is undoubtedly painful and can be hard to accept -- but it doesn't have to be the end of the world. Never getting your child the help he needs could be far more devastating.
A disclaimer: this is of course, our path. We all know every child is unique. Every story, every autism, is complex. No two will ever be the same. One child's early symptoms could manifest into absolutely nothing in a different child. But often, there tends to be common themes.
Due to my brother's autism and the fact that I'm a worrisome type to begin with, I was most likely looking for autism signs in Ethan earlier than the average parent. So, I'm going to start at the beginning:
The Earliest Months (Birth-6 months)
Ethan was a sleepy baby. He was a really sleepy baby, but he had developed jaundice at three days old, so we chalked it up to that. Every child with an older sibling is compared to the one(s) before, so naturally we noticed Ethan was less alert, more fussy, and less smiley than his big sister. He did smile, but didn't give me his first really consistent grins until he was about eight weeks. When he around four months old, I took him to have pictures done and noticed the photographer (a new guy with little enthusiasm) had a really hard time getting him to smile. I took him to a different place a week later, however, and the guy got all kinds of smiles out of Ethan. This up and down, sometimes- social, sometimes-not behavior would become a common trend.
Ethan also learned to pick up his head and roll later than Anna (eventually we would realize this was due to low muscle tone), but not outside average parameters.
There was one other thing that jumped out at me. One day I saw a friend with a baby the same age with fruit in a mesh feeder, and the little girl was just gnawing away at the thing, sucking fruit out. I watched and realized that I had never thought to feed Ethan in that way, in part because I didn't think he could figure out how to do it. I couldn't understand why he wouldn't be able to, but I knew he wouldn't. Similarly, a few months later I was amazed to watch a child younger than Ethan pick cheerios out of a container, one by one.This was the kind of fine motor, sequenced skill that parents watch their kids do and don't think anything of...until they realize their child has never tried to, or tries to but can't.
6 to 14 Months
Somewhere between six to eight months, Ethan had a big developmental spurt. He learned to crawl; he got playful with his sister; he was very smiley and giggly, and sometimes seemed to be trying a few words. He seemed like a different kid. Any concerns I had about his development subsided...until he began to reach about a year old. Something was up and I couldn't put a finger on what. He seemed a little less aware and much younger than his sister had at that age. I chalked it up to him being a boy. He had a few words by one year. He would infrequently say Mamma and sometimes Dadda or Anna. I noticed he was just as enthusiastic, however, about saying "light" and "fan." I also didn't realize it at the time, but Ethan wasn't the type to do a lot of talking back at you. If you started talking to him, he would engage, but you had to keep things going, you had to work hard, or you'd lose him. When I look back at video I see that Ethan was very much paying attention, but he wasn't doing anything to continue the interaction. He was waiting for someone else to do all of the work.
15-17 Months
When Ethan was 15 months old, I was working on a freelance video project that involved filming a little girl just a bit younger than he was. When we went to the girl's home, I was immediately caught off guard when she called out "hi!" and seemed genuinely happy to see us. She didn't say much else. It wasn't the words that stuck in my mind...it was her eagerness to engage in some way. Again, I wanted to attribute this to her being a girl and naturally more social. But a few weeks later, I began to notice Ethan didn't seem to show much expression when people arrived or left. And when I left him with my mom one day, went to say goodbye, and he looked right through me as if I wasn't there, that's when I knew. I knew something was wrong. I got on the phone and called our local Birth to 3 early intervention program to schedule an evaluation.
18 Months
Ethan's initial evaluation took place a month later. He was almost exactly 18 months old. The experience, in retrospect, was unacceptable. Basically, two supposed professionals came into our home and asked me questions, then attempted to engage Ethan with their toys. When he wouldn't respond for the most part, they summed up their visit with a checklist that gave him two autism "red flags" and told me he would have had more, but since they based their list not on behavior they observed but on things I confirmed he could do, even if he wasn't showing them, they said it didn't warrant enough for further testing right now. "You'll probably just want to keep an eye on him and maybe have him reevaluated in six months to a year," they told me. Oh yeah, and before they left they also advised that I put away all of his toys with lights and buttons to encourage him to play with other things. Whaaaat???
I wasn't satisfied. At Ethan's 18-month appointment with the pediatrician right around that time, I again expressed my concerns. He gave me the MCHAT (Modified Checklist for Autism in Toddlers) to fill out. Some of the questions threw me. One specifically asked, "Does your child point to things to draw your attention?" Now I know that is a question attempting to decipher if the child has joint attention, or the ability to draw your attention to something or to look at the same thing you are looking at. I checked "yes" because Ethan did point (some children with autism cannot) and he would say things like "Airplane!" and point excitedly. What wasn't clear, however, is that true joint attention is a child pointing, checking in with the adult, then looking back at the object. It's a subtle but important difference. Again, Ethan had a few "red flags" but according to the pediatrican not enough to warrant immediate follow-up.
19-22 Months
I disagreed with our pediatrician, but waited for a little bit, because Ethan again hit one of his amazing phases where suddenly he was more engaged, more social, more chatty. Once again I thought he was on the verge of really exploding developmentally, and maybe everything was in my head. To top it off, everyone in my family, including Dan and my parents, who have raised a child with autism, also thought I was overreacting.
One day that summer we were in the bathroom at Old Sturbridge Village, of all places, and I heard a woman come in and ask a another mom how old her toddler was. He was Ethan's age, almost exactly. "What's your favorite animal, sweetie?" she asked. "A giraffe," he answered. I was floored. Ethan was so far from being able to do that at that point, again the rock dropped in my stomach. Something was wrong. I got on the phone and called a well-known developmental pediatrician in the area who runs a program designed to diagnose kids with autism as soon as possible (the program is actually called ASAP). I was shocked to find out the waiting list for a "quick result" was still eight months. Three times I called, begging to get in earlier. I used my family history as a trump card. Thankfully, that worked. An eight-month wait became two months, and in September 2009, Ethan was diagnosed in about an hour and a half. At the time, he had about 15 words and 5 he used daily. He wasn't yet combining words, and had few play skills beyond pressing buttons. He spent the last half of the appointment lying on the floor, no longer wanting to cooperate. His score on the CARS (Child Autism Rating Scale) was 36, or moderate autism. Above a 37 is considered severe.
Lessons Learned
1. Everyone always says this, but it bears repeating: trust yourself. Don't trust your doctor, don't trust your family, don't even trust the people who evaluate your child if it doesn't sit well with you. You know your child. We moms especially were given the gift of intuition for a reason. Instead of panicking, think, "What's the worst that can happen if I'm wrong, if I'm overreacting?" If a diagnosis is wrong, that will become clear over time. Which leads me to:
2. Some people are afraid of labels. Don't be. Parents don't want to rush to have their child diagnosed, feeling it's a "black mark" that will stay with them forever. These days, however, a diagnosis can be critical to getting your child much-needed services. In particular as the diagnostic criteria for autism spectrum disorders is changing (and in some opinions narrowing), getting an early diagnosis can mean the distance between giving your child a head-start on therapies and having to fight desperately to get anything. Again, what's the worst that can happen? Your child receives therapies he doesn't really need, progresses quickly, and is discharged? Schools don't really want your child to have a label -- kids in the special education system cost them big bucks -- and half the time they're trying to rip labels away prematurely. A label is not going to stick if it's obviously incorrect.
3. My final point harkens back to our quest to find out exactly what was going on with Ethan. If you're concerned that a child has ASD and are searching for symptoms to confirm, look at the big picture, the sum of issues, rather than individual symptoms, the cliche-type issues portrayed on TV shows or in movies. If I was going to diagnosis a child according to Hollywood, Ethan would have been a savant making fantastic algebraic calculations but unable to say hi, obsessively lining up cars, covering his ears and perhaps rocking back and forth, humming. Ethan did none of those things at the time of his diagnosis. He also had never flapped his hands or walked on his toes. His speech delay alone was not enough to make me think autism. Over time, the clearest sign to us was an overall weakness in connecting, communicating and sharing of himself with others, and a desire for objects over human interaction.
How did I know I'd end up writing a treatise here? I guess because it's something I'm passionate about. I say that not because I think we did everything right, but because I'm amazed even now how many times parents' concerns are downplayed by pediatricians and other supposed "experts." I have talked to many people convinced they should just take a "wait and see" approach. I've seen others stressed about their child displaying one autistic symptom and are needlessly fretting he must be on the spectrum. There is still a lot of misinformation and confusion out there.
Getting a diagnosis for your child is undoubtedly painful and can be hard to accept -- but it doesn't have to be the end of the world. Never getting your child the help he needs could be far more devastating.
Sunday, September 16, 2012
Friend?
Last year, we'd arrive at school and some of the kids in Ethan's class would gather in the hallway in little groups, attempting conversation or at least come form of communication. Not Ethan. He wanted to stand firmly next to me and look at the pictures of teachers posted on a bulletin board.
We've been in school two weeks now. He's in the afternoon again with a few familiar faces. One boy (I'll call him B.) was in Ethan's class last year. By the end of the year, they had started to "click," at least in class together, according to his teachers.
This year, Ethan calls him his friend. Ethan has played with his sister, and played with his sister's friends and friends of my friends, but this is the first time he's defined a classmate in these terms.
His first friend.
Earlier in the week when we got out of the car at drop-off time, Ethan spotted B.'s car. He stopped dead on the sidewalk.
"I want to wait for him!" he said. I almost did a double-take. You want to what? This, from the boy who ran ahead to the front door, oblivious of any classmates nearby or anyone calling him, nearly every day of the school year last year so he could hold the door for as many people as possible.
We stopped and waited. I noticed as I always do that B., like most typical kids, does not march up to someone and say, "Hi, how's it going?" looking the other child directly in the eye, the way we well-meaningly attempt to train ASD kids. The communication is more subtle, more unspoken.
This still presents an issue for Ethan, though, because he is just at the stage of wanting to have or be around a friend, never mind able to completely deal with the complexity of how to interact with him. Ethan looked in B.'s general vicinity without really noticing that B. was waiting for him to say something. Then Ethan reached up his hand to make monster claws and growled. B. laughed.
Apparently, this is their playground game. Ethan is the monster and chases B. Over and over, every day. At pick-up time Ethan is covered with sweat and red in the face. He's chatty and satisfied.
The other day after school we went to Target and discovered B. and his mom had gone there directly after school, too. We met up at the toy aisles.
Ethan actually asks for the toy area at Target now. He even, like Anna, prefers his own gender aisles and says things about not wanting to look at the "girly stuff." I find it ironic that he prefers looking at boy toys more than actually playing with them. That could be because Target has all sorts of cool toy displays with lots of buttons and sound effects.
At the toy section, we spotted B. and he called out to Ethan.
"Look! They have wrestling buddy toys here!" B. held some sort of stuffed wrestling character that you could apparently punch and get a recorded response out of. It's the kind of toy that would be perfect for Ethan in his current aggressive phase. I wanted Ethan to realize that, but first I had to get him to actually look at the toy B. was holding.
"I want to find the dinosaur," he said, speaking to me, not even acknowledging B.'s presence. I knew what he meant. He had come to this area to find the display of the dinosaur that morphed into a truck. The dinosaur with lots of buttons; the one that moved and roared.
I knew I had to go into interpreter mode. "Ethan," I said, stooping down low and trying to catch his eye. "He wants to show you his wrestling buddy. Look! It makes sounds!" Ethan gave B. a perfunctory glance and started to dart away.
"Do you want to show him the dinosaur?" I called out in desperation. Suddenly, Ethan could relate to his friend again. "Come here!" he said, looking straight at him. "I want to show you something."
Over in the next aisle, Ethan began working the display. Only he wasn't showing his friend how to do it. He was obsessively pounding, lost in Ethan World again.
"Ethan, take a break from that," B. started saying. "Ethan, take a break."
My heart sank. "Ethe, can you give him a turn?" I begged. He obliged. B. was happy. Another disaster diverted. A few minutes later, they called out enthusiastic goodbyes to each other.
The next day, I figured it was time. I had to say something to B.'s mom. It's taken me forever, but I've learned not to assume other people know about all of the details of our lives. Half the time we think they're watching us or our kids, they're thinking about their own stuff. Even though Ethan and B. have been in school together for over a year, I've never actually mentioned Ethan's diagnosis. Most of the kids in special ed. take the bus. I drop Ethan off. If you don't really watch or pay attention, he can pass for a typical kid.
I didn't feel like sharing our lives' story, but I had to speak up. I wanted to give her a little background, in case B. started complaining about playing a neverending game of chase, or that his friend doesn't know how to calm down and stop karate-chopping him.
"Your son is really good for Ethan," I said. "He has some trouble with the social stuff...he needs a lot of practice. This is the first year he's really talked about having a friend. I'm glad he's patient with the fact that Ethan likes to do the same stuff over and over."
It turns out, B.'s mom said B. is the kind of kid who likes to play the same game over and over, who kind of goes with the flow and goes along with what other kids like to do. Hence, why he and Ethan make such a good pair right now.
It's hard not to think about the days Ethan's monster games get old, when and his friend matures enough to realize Ethan always wants to play the same games and isn't quite relating to him at the same level. If preschool is difficult to navigate socially, what about the elementary years, or (gasp!) middle school?
I honestly don't know how much Ethan likes having a friend vs. having someone to chase. I don't know when he will begin to understand the give and take that comes with having a buddy, that it's not just about doing whatever you want to do, that there's a back and forth to all of this. I suppose some kids (and some adults, typical or not!) never do. We know this will always be a learned rather than inherent skill in him. We'll give him all the practice he can get.
The future is full of question marks. But for now, we can smile.
Ethan has a friend.
We've been in school two weeks now. He's in the afternoon again with a few familiar faces. One boy (I'll call him B.) was in Ethan's class last year. By the end of the year, they had started to "click," at least in class together, according to his teachers.
This year, Ethan calls him his friend. Ethan has played with his sister, and played with his sister's friends and friends of my friends, but this is the first time he's defined a classmate in these terms.
His first friend.
Earlier in the week when we got out of the car at drop-off time, Ethan spotted B.'s car. He stopped dead on the sidewalk.
"I want to wait for him!" he said. I almost did a double-take. You want to what? This, from the boy who ran ahead to the front door, oblivious of any classmates nearby or anyone calling him, nearly every day of the school year last year so he could hold the door for as many people as possible.
We stopped and waited. I noticed as I always do that B., like most typical kids, does not march up to someone and say, "Hi, how's it going?" looking the other child directly in the eye, the way we well-meaningly attempt to train ASD kids. The communication is more subtle, more unspoken.
This still presents an issue for Ethan, though, because he is just at the stage of wanting to have or be around a friend, never mind able to completely deal with the complexity of how to interact with him. Ethan looked in B.'s general vicinity without really noticing that B. was waiting for him to say something. Then Ethan reached up his hand to make monster claws and growled. B. laughed.
Apparently, this is their playground game. Ethan is the monster and chases B. Over and over, every day. At pick-up time Ethan is covered with sweat and red in the face. He's chatty and satisfied.
The other day after school we went to Target and discovered B. and his mom had gone there directly after school, too. We met up at the toy aisles.
Ethan actually asks for the toy area at Target now. He even, like Anna, prefers his own gender aisles and says things about not wanting to look at the "girly stuff." I find it ironic that he prefers looking at boy toys more than actually playing with them. That could be because Target has all sorts of cool toy displays with lots of buttons and sound effects.
At the toy section, we spotted B. and he called out to Ethan.
"Look! They have wrestling buddy toys here!" B. held some sort of stuffed wrestling character that you could apparently punch and get a recorded response out of. It's the kind of toy that would be perfect for Ethan in his current aggressive phase. I wanted Ethan to realize that, but first I had to get him to actually look at the toy B. was holding.
"I want to find the dinosaur," he said, speaking to me, not even acknowledging B.'s presence. I knew what he meant. He had come to this area to find the display of the dinosaur that morphed into a truck. The dinosaur with lots of buttons; the one that moved and roared.
I knew I had to go into interpreter mode. "Ethan," I said, stooping down low and trying to catch his eye. "He wants to show you his wrestling buddy. Look! It makes sounds!" Ethan gave B. a perfunctory glance and started to dart away.
"Do you want to show him the dinosaur?" I called out in desperation. Suddenly, Ethan could relate to his friend again. "Come here!" he said, looking straight at him. "I want to show you something."
Over in the next aisle, Ethan began working the display. Only he wasn't showing his friend how to do it. He was obsessively pounding, lost in Ethan World again.
"Ethan, take a break from that," B. started saying. "Ethan, take a break."
My heart sank. "Ethe, can you give him a turn?" I begged. He obliged. B. was happy. Another disaster diverted. A few minutes later, they called out enthusiastic goodbyes to each other.
The next day, I figured it was time. I had to say something to B.'s mom. It's taken me forever, but I've learned not to assume other people know about all of the details of our lives. Half the time we think they're watching us or our kids, they're thinking about their own stuff. Even though Ethan and B. have been in school together for over a year, I've never actually mentioned Ethan's diagnosis. Most of the kids in special ed. take the bus. I drop Ethan off. If you don't really watch or pay attention, he can pass for a typical kid.
I didn't feel like sharing our lives' story, but I had to speak up. I wanted to give her a little background, in case B. started complaining about playing a neverending game of chase, or that his friend doesn't know how to calm down and stop karate-chopping him.
"Your son is really good for Ethan," I said. "He has some trouble with the social stuff...he needs a lot of practice. This is the first year he's really talked about having a friend. I'm glad he's patient with the fact that Ethan likes to do the same stuff over and over."
It turns out, B.'s mom said B. is the kind of kid who likes to play the same game over and over, who kind of goes with the flow and goes along with what other kids like to do. Hence, why he and Ethan make such a good pair right now.
It's hard not to think about the days Ethan's monster games get old, when and his friend matures enough to realize Ethan always wants to play the same games and isn't quite relating to him at the same level. If preschool is difficult to navigate socially, what about the elementary years, or (gasp!) middle school?
I honestly don't know how much Ethan likes having a friend vs. having someone to chase. I don't know when he will begin to understand the give and take that comes with having a buddy, that it's not just about doing whatever you want to do, that there's a back and forth to all of this. I suppose some kids (and some adults, typical or not!) never do. We know this will always be a learned rather than inherent skill in him. We'll give him all the practice he can get.
The future is full of question marks. But for now, we can smile.
Ethan has a friend.
Tuesday, September 11, 2012
Remembering
The thing that always got me was that they flew right above my little part of the world.
Eleven years ago on a glorious not-quite-summer, almost-fall Tuesday morning, we all know what happened.
I was working for the Marketing/PR department at Baystate Health System. We went into Disaster Mode. They sent me over to the hospital's main campus to take notes, as hospital adminstrators tried to finagle a way Baystate could transfer patients to take in an influx of patients from Connecticut so that we could take in extra patients from New York. As I scribbled in my notebook and watched the TV replay the towers falling again and again, I knew. I think we all knew. They wouldn't need to do that. Who, how many, could have survived that?
A few days, or maybe it was months, later I saw the paths of the two planes that hit the towers. The second one flew just south of my city, as I worked unsuspectingly down below, as we all worked, drinking our coffees or breathing in the fresh September morning.
The first plane, the place where it diverted from its scheduled course, the place where the hijacking was believed to have occurred, was directly over the Quabbin Reservoir, over the town and general area in central Massachusetts where I spent my first 10 years. At the Quabbin, the reservoir created to provide water for the Boston area, we would bring cardboard boxes when I was a kid and slide down the steep grassy hills of the dike, laughing hysterically, racing like sleds on snow. After 9/11, they didn't let anyone down there anymore. Most of the trails were and are still closed off to the general public. They have to be sure to protect the water.
I often think of them, those people who had no idea they were about to be part of a dark moment in our nation's history, looking down on the rolling green hills and rivers and scattered New England towns and cities below, desperate for that unspecting world to know what was going on above. But we went about our day for a few more carefree moments, oblivious.
In a strange, illogical way, this used to make me feel almost guilty. And in a strange, or perhaps not so strange way, this fact that it had started right here, added to that feeling so many of us had after September 11: that we had been violated, that something had been taken from us that we could never get back.
Many experienced a very tangible loss when their friends, their family members died that day. For the rest of us, the loss had everything to do with innocence, with the loss of everything we thought we knew. "Everything is under control," Anna Quindlen wrote in an article I saved. "Of course you know it's a lie. But doesn't it sound a whole lot better than the truth?"
After 9/11 I saw the myriad ways we attempt survive in a world not under our control, in a time when our illusions are stripped away.
What do we do? Try to build the illusion back again. The government ensures us that we are safe, that they are doing everything they can do protect us. We try to believe them.
Or what do we do? Throw up our hands and decide to eat, drink, and be merry, for tomorrow we'll die. Live and let live, because you just don't know, and nothing may matter in the end.
Some of us harden with false bravado, resolving to fight evil at all costs. This may very well be necessary. But we can't be driven by those feelings alone.
And some of us cling to our faith. Some of us ask, as I have, in the words of James in the scriptures, "What good is it?" Do I use my faith as a rabbit's foot in my pocket, something to pull out in times of dire need to get me through? That certainly didn't help some people on 9/11. Bad things happen to good people. Bad things happen sometimes to Christians who quote Bible verses. Or is my faith something that sustains me, something that helps me to simultaneously let go of the illusion of control while still trusting in the end that God works all things together for my good?
September 11, 2001 was a wake-up call in very many ways. For me, as I look up at the blue skies once disrupted by the unthinkable, I still struggle with the tension of longing for the past, for wanting to jump back in to the illusion of control, or choosing the harder way: to see life for what it really is, and to not shrink back, but to keep walking on, living the life God has for me, one trembling, thrilling step at a time.
Eleven years ago on a glorious not-quite-summer, almost-fall Tuesday morning, we all know what happened.
I was working for the Marketing/PR department at Baystate Health System. We went into Disaster Mode. They sent me over to the hospital's main campus to take notes, as hospital adminstrators tried to finagle a way Baystate could transfer patients to take in an influx of patients from Connecticut so that we could take in extra patients from New York. As I scribbled in my notebook and watched the TV replay the towers falling again and again, I knew. I think we all knew. They wouldn't need to do that. Who, how many, could have survived that?
A few days, or maybe it was months, later I saw the paths of the two planes that hit the towers. The second one flew just south of my city, as I worked unsuspectingly down below, as we all worked, drinking our coffees or breathing in the fresh September morning.
The first plane, the place where it diverted from its scheduled course, the place where the hijacking was believed to have occurred, was directly over the Quabbin Reservoir, over the town and general area in central Massachusetts where I spent my first 10 years. At the Quabbin, the reservoir created to provide water for the Boston area, we would bring cardboard boxes when I was a kid and slide down the steep grassy hills of the dike, laughing hysterically, racing like sleds on snow. After 9/11, they didn't let anyone down there anymore. Most of the trails were and are still closed off to the general public. They have to be sure to protect the water.
I often think of them, those people who had no idea they were about to be part of a dark moment in our nation's history, looking down on the rolling green hills and rivers and scattered New England towns and cities below, desperate for that unspecting world to know what was going on above. But we went about our day for a few more carefree moments, oblivious.
In a strange, illogical way, this used to make me feel almost guilty. And in a strange, or perhaps not so strange way, this fact that it had started right here, added to that feeling so many of us had after September 11: that we had been violated, that something had been taken from us that we could never get back.
Many experienced a very tangible loss when their friends, their family members died that day. For the rest of us, the loss had everything to do with innocence, with the loss of everything we thought we knew. "Everything is under control," Anna Quindlen wrote in an article I saved. "Of course you know it's a lie. But doesn't it sound a whole lot better than the truth?"
After 9/11 I saw the myriad ways we attempt survive in a world not under our control, in a time when our illusions are stripped away.
What do we do? Try to build the illusion back again. The government ensures us that we are safe, that they are doing everything they can do protect us. We try to believe them.
Or what do we do? Throw up our hands and decide to eat, drink, and be merry, for tomorrow we'll die. Live and let live, because you just don't know, and nothing may matter in the end.
Some of us harden with false bravado, resolving to fight evil at all costs. This may very well be necessary. But we can't be driven by those feelings alone.
And some of us cling to our faith. Some of us ask, as I have, in the words of James in the scriptures, "What good is it?" Do I use my faith as a rabbit's foot in my pocket, something to pull out in times of dire need to get me through? That certainly didn't help some people on 9/11. Bad things happen to good people. Bad things happen sometimes to Christians who quote Bible verses. Or is my faith something that sustains me, something that helps me to simultaneously let go of the illusion of control while still trusting in the end that God works all things together for my good?
September 11, 2001 was a wake-up call in very many ways. For me, as I look up at the blue skies once disrupted by the unthinkable, I still struggle with the tension of longing for the past, for wanting to jump back in to the illusion of control, or choosing the harder way: to see life for what it really is, and to not shrink back, but to keep walking on, living the life God has for me, one trembling, thrilling step at a time.
But we are not of those who shrink back and are destroyed,
but of those who believe and are saved. - Hebrews 10:39
Monday, September 10, 2012
Male Bonding
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| Ethan playing ball, age 1 1/2 |
So many of my childhood memories with family involve everyone gathered and watching games together. There was my grandmother yelling at the Red Sox on Channel 38 or my first game ever at Fenway, surrounded by my parents and uncles (1986, Sox vs. Jays, we won!). There was the weekend gatherings during the Patriots' 1985 Super Bowl run, culminating with a Super Bowl party at my other grandmother's, complete with a TV in the bathroom (too bad they lost in devastating fashion). There was the constant backdrop of Sox games on the TV or crackling through the radio during cookouts and big family dinners.
And after years of rooting for losing teams, teams that would break our hearts in sickeningly creative ways year after year, there was sheer joy of watching with the people we were closest to while the Patriots and Red Sox finally exorcized their demons and won it all (in 2002 and 2004, respectively).
When Dan and I married, or actually before, I realized something: I was entering into a marriage in which the woman would be the bigger sports fan. Back before we had kids, when I had more time to watch sports, Dan and I would joke that he was the football "widower" on Sundays.
Dan hates sports. I mean, hates sports. He always has. He thinks they're pointless. He once brought a book to read at a Red Sox game. He can usually be found surfing the internet during major sporting events. Either that or he will be sitting and quietly tolerating, rather than relishing, the game. He likes to joke that his favorite day of the year is the one after the All-Star Game: the only day there are no professional sports played.
So Dan is not a sports fan, and that's okay. He didn't share the same kind of family traditions. None of his family are really huge fans. Gatherings didn't revolve around sporting events. There aren't the same kind of memories, of emotions connected to baseball and football.
I never expected Dan to blossom into a sports fanatic. There was something else I didn't expect: that our four-year-old, supposedly not athletic little boy would morph into a really, really big sports fan.
I'm not sure when we first noticed. Maybe it was when he was begging to play baseball and picked up the basic rules of the game in mere minutes. Maybe it was the first creative prayer he ever uttered, last year ("And thank you God for the Patriots that win"). Maybe it was the way he wanted to stay out and watch his great-grandfather hit golf balls for the better part of an hour, or his love for playing catch with Uncle Nate.
"I hate to say this," I said to Dan a few weeks ago with a smile, "but I think Ethan really, really likes sports."
And so yesterday, the kick-off to the Patriots' season, opening day for all of the football fanatics in the land, I witnessed something quite incredible.
There, on the couch, at 1 o'clock, were Dan and Ethan.
Dan was explaining the rules of the game.
Ethan was intently listening. Perhaps not completely understanding, but definitely paying attention.
Before long he knew the difference between a field goal and a touchdown, and that the game was divided into 15-minute quarters. Before long, we were cheering as the Patriots roared ahead of the Titans in the bright Nashville sun.
Dan thought maybe he'd be building model rockets or airplanes with his son. I don't think he ever envisioned making a connection over a bunch of grown men tackling each other.
That's a cool thing about parenthood. That's a cool thing about life. You travel down a path unexpected; you do something you never thought you'd do for someone you love, and you find yourself surprised by joy.
The other night, I heard Dan ask: "Ethan, do you want to go outside and play catch?" Ethan was out the door in a flash. And so they played, as the sun set and the evening grew cool. He's too young this fall, but the spring sports sign-ups will be here before we know it. I wasn't sure, but I think a possibility might become a reality. I think Ethan may be out on the soccer field and baseball diamond, months from now. Those two have a lot of practicing to do.
Thursday, September 6, 2012
China
China
All the way to New York
I can feel the distance getting close...
Tori Amos
China is a popular topic with Ethan these days. No, he's not getting political or even geographical. I'm not even sure when he first heard of China -- mostly likely during all of our Olympic talk, when I took the dusty globe down from a high shelf.
So Ethan has started talking about China, and his ruminations relate to the yin and yang, back and forth fact that, as we have told him, China has the day when we have the night, and China has the night when we have the day.
Ethan sees this as either incredibly awesome or terribly frustrating.
In the morning, as we eat breakfast, a sly smile will form on his face. "In China it's nighttime now," he will say. "All of the kids have to go to bed. It's darkness." Then he looks outside and basks in the sunlight, glows with the power of the light.
The evenings are another story. I will see Ethan glance out at the darkness. He will look back at me, eyes big. "In China it's day now. The kids are having breakfast." His lower lip will start to tremble. "I want it to be daytime here," he'll say, tears threatening.
This China talk has less to do with the country on the other side of the world than with Ethan's sudden leeriness of the dark -- and realization that not all of the world gets the dark at the same time.
Lately he has to make sure his closet door is shut. Tight. He wants his bedroom door wide open after we tuck him in. The other night he woke up and began crying. "What is it?" I asked him blearily.
"The darkness is still here!" he wailed.
The other day I was thrilled to find a picture book in the library about what kindergarten is like for kids in China and kids in America. The book is written both ways, with one country on one side and the other country on the flip side. When I showed it to Ethan, his eyes lit up like I was presenting him with a candy bar.
To Ethan, China has nothing at all to do with rivalling the U.S. as the world's superpower. China represents a place that alternately steals his sunshine and then obligingly turns it back over.
In these days when everything to Ethan is about winning and losing, give and take, up and down, strongest and weakest, China is something worth getting worked up about.
All of this talk about China and time zones and the other side of the world has reawakened an old habit. I used to lie in bed, and when I'd have trouble falling asleep, I'd imagine the world, time zone by time zone, and what people in different places were doing at that very moment. I'd see the Eiffel Tower shrouded in darkness, or the streets of Jerusalem coming to life, or Tokyo sitting down to dinner.
Some days you just have to remember the world is so much bigger than where you are and the moment you are in. I pray Ethan will begin to see this, when he's "cursing" the darkness, forgetting that light will soon be on its way.
Tuesday, September 4, 2012
The Courage to Fail
I don't know if I have anything profound to write.
This may just be one of those whiney, tiresome posts, somewhat akin to my junior high school diary entries, the majority of which seemed to revolve around who I was mad at or what was unfair.
Still, writing is an outlet, so I will write. What I need to say is something everyone already knows and has already heard before:
Parenting is really hard sometimes.
Really hard.
Add a special needs child, a typically developing but emotinally complex child, and a mom who seems to have an extra dose of Always Trying to Do Everything Right, and at times parenthood or motherhood specifically does not feel like some sort of richly rewarding experience, but more like an exercise in futility.
Okay, so here's the thing: in the space of a few weeks, my daughter has started acting like a teenager, while my son has become some sort of, I don't know, ninja (although he does not yet technically know what a ninja is. Then again, neither do I). She is oversensitive about everything (you can brush her arm and she'll yell, "OW! You pinched me!") and he is convinced the only way to relate to anyone is via hitting, kicking, or body slamming them.
As you can imagine, this isn't going over well.
The other morning I decided to count how many seconds until the two of them started fighting. The scenario went something like this:
Anna is sitting on the couch reading a book. Ethan comes downstairs, she sees him and grabs him and says she is "pretending to catch her fish." Ethan sees this as an invitation to fight and starts wrestling with her. Then he jumps on her and she's crying. All of this, in about 12 seconds.
It only happened about 37 other times, throughout the course of the day.
"But it's sibling rivalry! That's good! That's interaction and part of brother-sister relationships!" someone would say. And they would be absolutely right. I do remember that, and am grateful for that. Is it better that they are fighting than completely ignoring each other? I suppose fighting represents that they have some sort of relationship.
I understand all of that. Most of the trouble comes lately from all of the unspoken things, the undertone of their interactions and my stress at not being able to correctly decipher what's going on or how to address the situation.
With Ethan, I'm always thinking:
Is this just a boy thing?
Is he acting out because, as he has told us, "I'm mad that Anna's older?"
Is this an inability to regulate his emotions?
Is this a combination of all three, and when to discipline, and how to discipline?
With Anna, things get even more complicated. Anna has always had a personality that's hard to define, straddling somewhere between extrovert and introvert, the type who holds her feelings in despite us begging for her to be honest, the one who, even when she speaks, we don't know if we're getting the whole story. And now (how can this be?) there are days she seems to already be taking on the attitude of the adolescent, descending into her world of books, oversensitive at the smallest slight from a classmate, dissolving into tears in seconds, at times doubting herself, not sure of her place in the world or with peers.
Seeing Anna reach this stage is bringing me back to my own adolescence (This early? I thought I had more time!), and that's not pretty. Not pretty at all. Top that off with the fact that I too grew up with a brother with special needs, I feel as if I'm on a constant journey to Make Sure Her Feelings Are Expressed, Make Sure She Feels Special, Make Sure Her Childhood is, if not perfect, Pretty Okay).
This is why I tend to dissolve into tears myself sometimes. There's that pressure to make sure I get it right. Don't mess up the kids. Give them the tools they need so they don't grow up like me, crying in the bathroom when I was 23 at my first job, devoid of confidence, unable to control my emotions even though I was supposedly a grownup and in the "real world" now.
I love how parenthood shines a spotlight on all of your flaws. A-ha, here they are! In case you forgot! the condemning gremlins shout as the flood lights expose everything unpretty.
And so, I attempt to discipline. Dan of course does as well, but he doesn't tend to doubt himself so much. If he screws up, he screws up, and he will correct it next time. I'd love to be like that, not overthinking and overanalyzing. Can I say that again? To those who well-meaningly assure, "Just relax and don't be so hard on yourself," I would say please know how much I want to.
I give Ethan time-outs and take away preferred items and yes, sometimes give a spank, although that seems to be counter-intuitive to his whole hitting behavior at the moment. I watch the behavior continue.
I talk to Anna and encourage Anna and try to install confidence and quote Bible verses and reassure and beg her to share her heart and give hugs and delicately remind her that she can't hit Ethan and then be angry he is hitting her. Then I watch the behavior continue.
Someone once told me that studies have shown people are more fulfilled in jobs where they are assigned a task that can be quickly completed and in which they can see immediate results. More open-ended projects tend to be less rewarding.
Is that why parenting feels so difficult sometimes? Is it because it's a lot of planting and not much reaping, for perhaps a very long time?
As I've written and thought, I've realized, as so often happens, how little room I leave for grace. More than that, I've realized how little room I leave for failure.
It's dawning on me that trying to solve every problem is not necessarily the best remedy. Wouldn't I rather teach my children how to deal with stress, how to resolve an issue, or even how to accept gracefully that which cannot be changed, rather than just work to make everything disappear for them? Wouldn't it be better to give them the tools rather than always the answers? Wouldn't it be better to impart an overcoming spirit rather than leave them with complete ignorance or a defeatist attitude whenever they are faced with something unpleasant, unexpected, even undeserved?
Maybe the real question is not whether or not I can be a better parent than I'm already attempting to be, but rather whether or not I have the courage to fail sometimes, and even let my kids fail sometimes.
There is something freeing about throwing up your hands and realizing there is no way to do or solve it all.
There is peace in letting go and then hearing a whisper, in the midst of the stress and unanswered questions, words like the refrain of a song I listened to what seems like eons ago
Everything's gonna be all
Everything's gonna be all right
Everything's gonna be all right now
Everything's gonna be all right
This may just be one of those whiney, tiresome posts, somewhat akin to my junior high school diary entries, the majority of which seemed to revolve around who I was mad at or what was unfair.
Still, writing is an outlet, so I will write. What I need to say is something everyone already knows and has already heard before:
Parenting is really hard sometimes.
Really hard.
Add a special needs child, a typically developing but emotinally complex child, and a mom who seems to have an extra dose of Always Trying to Do Everything Right, and at times parenthood or motherhood specifically does not feel like some sort of richly rewarding experience, but more like an exercise in futility.
Okay, so here's the thing: in the space of a few weeks, my daughter has started acting like a teenager, while my son has become some sort of, I don't know, ninja (although he does not yet technically know what a ninja is. Then again, neither do I). She is oversensitive about everything (you can brush her arm and she'll yell, "OW! You pinched me!") and he is convinced the only way to relate to anyone is via hitting, kicking, or body slamming them.
As you can imagine, this isn't going over well.
The other morning I decided to count how many seconds until the two of them started fighting. The scenario went something like this:
Anna is sitting on the couch reading a book. Ethan comes downstairs, she sees him and grabs him and says she is "pretending to catch her fish." Ethan sees this as an invitation to fight and starts wrestling with her. Then he jumps on her and she's crying. All of this, in about 12 seconds.
It only happened about 37 other times, throughout the course of the day.
"But it's sibling rivalry! That's good! That's interaction and part of brother-sister relationships!" someone would say. And they would be absolutely right. I do remember that, and am grateful for that. Is it better that they are fighting than completely ignoring each other? I suppose fighting represents that they have some sort of relationship.
I understand all of that. Most of the trouble comes lately from all of the unspoken things, the undertone of their interactions and my stress at not being able to correctly decipher what's going on or how to address the situation.
With Ethan, I'm always thinking:
Is this just a boy thing?
Is he acting out because, as he has told us, "I'm mad that Anna's older?"
Is this an inability to regulate his emotions?
Is this a combination of all three, and when to discipline, and how to discipline?
With Anna, things get even more complicated. Anna has always had a personality that's hard to define, straddling somewhere between extrovert and introvert, the type who holds her feelings in despite us begging for her to be honest, the one who, even when she speaks, we don't know if we're getting the whole story. And now (how can this be?) there are days she seems to already be taking on the attitude of the adolescent, descending into her world of books, oversensitive at the smallest slight from a classmate, dissolving into tears in seconds, at times doubting herself, not sure of her place in the world or with peers.
Seeing Anna reach this stage is bringing me back to my own adolescence (This early? I thought I had more time!), and that's not pretty. Not pretty at all. Top that off with the fact that I too grew up with a brother with special needs, I feel as if I'm on a constant journey to Make Sure Her Feelings Are Expressed, Make Sure She Feels Special, Make Sure Her Childhood is, if not perfect, Pretty Okay).
This is why I tend to dissolve into tears myself sometimes. There's that pressure to make sure I get it right. Don't mess up the kids. Give them the tools they need so they don't grow up like me, crying in the bathroom when I was 23 at my first job, devoid of confidence, unable to control my emotions even though I was supposedly a grownup and in the "real world" now.
I love how parenthood shines a spotlight on all of your flaws. A-ha, here they are! In case you forgot! the condemning gremlins shout as the flood lights expose everything unpretty.
And so, I attempt to discipline. Dan of course does as well, but he doesn't tend to doubt himself so much. If he screws up, he screws up, and he will correct it next time. I'd love to be like that, not overthinking and overanalyzing. Can I say that again? To those who well-meaningly assure, "Just relax and don't be so hard on yourself," I would say please know how much I want to.
I give Ethan time-outs and take away preferred items and yes, sometimes give a spank, although that seems to be counter-intuitive to his whole hitting behavior at the moment. I watch the behavior continue.
I talk to Anna and encourage Anna and try to install confidence and quote Bible verses and reassure and beg her to share her heart and give hugs and delicately remind her that she can't hit Ethan and then be angry he is hitting her. Then I watch the behavior continue.
Someone once told me that studies have shown people are more fulfilled in jobs where they are assigned a task that can be quickly completed and in which they can see immediate results. More open-ended projects tend to be less rewarding.
Is that why parenting feels so difficult sometimes? Is it because it's a lot of planting and not much reaping, for perhaps a very long time?
As I've written and thought, I've realized, as so often happens, how little room I leave for grace. More than that, I've realized how little room I leave for failure.
It's dawning on me that trying to solve every problem is not necessarily the best remedy. Wouldn't I rather teach my children how to deal with stress, how to resolve an issue, or even how to accept gracefully that which cannot be changed, rather than just work to make everything disappear for them? Wouldn't it be better to give them the tools rather than always the answers? Wouldn't it be better to impart an overcoming spirit rather than leave them with complete ignorance or a defeatist attitude whenever they are faced with something unpleasant, unexpected, even undeserved?
Maybe the real question is not whether or not I can be a better parent than I'm already attempting to be, but rather whether or not I have the courage to fail sometimes, and even let my kids fail sometimes.
There is something freeing about throwing up your hands and realizing there is no way to do or solve it all.
There is peace in letting go and then hearing a whisper, in the midst of the stress and unanswered questions, words like the refrain of a song I listened to what seems like eons ago
Everything's gonna be all
Everything's gonna be all right
Everything's gonna be all right now
Everything's gonna be all right
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