We were pulling out of the driveway the other morning and the neighbor across the street pulled out at the same time. I waited for her to go first but she flashed her lights to tell me to go ahead. I pulled out and gave her a little way and a whispered "thanks."
"Why did you do that?" Ethan asked.
"I had to give her the 'Courtesy Wave.' Do you know what that is?"
"What?"
"It's when someone in another car does something nice when you're driving, like letting you go first, and you give them a little wave to say thank you."
Since we were talking about manners indirectly anyway, I decided to seize the moment. "Sometimes it's nice to let people go ahead of you. That's called preferring others. It's like when you choose not to barge ahead of me on the stairs but let me go first."
"You like when I do that?"
"Yeah. But you know, there's one time when you don't need to let people get in front of you. Do you know when that is?"
"When?" Ethan asked, looking out the window.
"When you're waiting in a big line, like at an amusement park." One of my pet peeves. I can't stand people cutting in line. Especially if I've been waiting a while.
"If that happens, you can tell them, 'Excuse me, I've been waiting here. You need to go to the end of the line.'"
Well, not exactly, I started thinking as I was driving. What about when people have been waiting ahead of you but hold a place for other members of their family? This grows increasingly more irritating depending on how many family members they have. If it's one other person, fine. But when six other people suddenly jump ahead of you, that's annoying.
Suddenly my mind was no longer on the highway but on a visit to the Air & Space Museum in Washington, D.C. I don't remember exactly what happened anymore but I do remember it was one of the few times I was miffed enough to actually speak up and say something, and the person turned on me in a rage, which made me wonder if speaking up had even been worth it (I hate making people mad. It makes me feel sick to my stomach.).
I thought about that nervous dance I always do in my mind when people are cutting...do I bite my tongue? It's such a "gray area." Speak up in that line at Six Flags and come off as obnoxious. Don't say anything and teenagers might let half the friends in their high school cut in front of you while we all stand sweltering on a mid-summer day. Where do you draw the line? I thought about the tension...the fears about how I am perceived and about making a social faux pas.
The more I think about it, the more I'm amazed at how many subtle social rules there really are. It's rather mind-blowing, actually. At the same time, I wonder how freeing it might be to actually not be worrying about social rules all of the time. Like Ethan.
But this is the society in which we live: chock-full of the smallest of social nuances, where one small slip can have big implications. Where even we typical people can't always figure out the gray areas.
For right now, I'm sticking to teaching Ethan about the "Courtesy Wave." At least I'm getting that one right. And better we focus on that than any other kind of hand gestures he might see anyone do on the highway when tempers are short. Yikes. Let's not even go there.
Saturday, March 28, 2015
Monday, March 23, 2015
Waiting for Marshmallows
There's a great scene from the show Parenthood from several years back where Max, the boy with Asperger's, goes on a camping trip with his grandpa, Zeke. Max's parents are very nervous about this -- it's his first camping trip; they're not sure how he'll do with a different routine; they don't know if he'll cooperate and participate in typical "camping" activities...so they come up with a bunch of advice for Zeke. Zeke throws all of their advice out the window, wanting to make his own rules. Hours later Zeke calls the parents in a panic because Max wants to come home. He admits he let Max do everything he wanted -- look for insects and eat marshmallows -- first and now he doesn't want to do anything.
"You gave him his paycheck before he did his work...you have to do it the other way around," Max's dad tries to explain. (Watch a little here at 32:16).
These days, when we are visiting with relatives, iPads and Kindles tend to be Ethan's "marshmallows." And while he is much different (and less rigid by far) than the character on the show, I often feel as if we are living out that scene.
I totally get why Ethan needs to have special screen time when we are visiting with family. It's a treat; it's a fun thing to do at the grandparents'. It's an outlet, because we're somewhere different and he can't do his usual stuff. It's a way to ease anxiety. It's something to do when a bunch of grownups are sitting around talking. It's a way to occupy himself if he's got too much pent up energy but has no real appropriate way to get it out (especially with this long winter we've had).
But the question of when and how long to let him spend with the screen is what tends to trip us up. To me, it all comes back to the never-ending quest to balance respecting Ethan's differences while giving him tools to get by in real life.
We could hand him an iPad the moment he walks in the door. He'll be thrilled. He'll also disappear for hours. He'll miss out on any interaction with family...sometimes family he sees only a few times a year. And the longer he plays, the harder it is to tear him away. Meltdowns ensue.
We could force him to hang out and tell him screen time is not for family gatherings. His stress and boredom would boil over, especially if it's not outdoor weather. This boy who struggles with just finding just any old thing to play with or to do would be fairly miserable...or else end up wrestling or doing something else that would get grown-ups snapping at him.
What we've found is really like that Parenthood episode: we need to know the appropriate time to "take out the marshmallows." And in some ways, I don't like it. I feel guilty dangling a reward in front of my son. It's only when I remind myself that he truly is wired differently that I feel a little more at peace.
If you don't take out the proverbial marshmallows at all, Ethan would be profoundly disappointed. He lives for his screen time. It makes him immensely happy. He often tells me he's thinking about various games or music from games or scenes from a game. But take out the marshmallows too early, and we've lost him. Ethan has to know that he can't walk into someone's house and demand an iPad. How often in life, the older we grow, do any of us get instant gratification? We have to learn how to sit with that feeling of needing to wait...of working to get the reward...of getting our chores done so we can relax.
How often do any of us get to the stuff we're supposed to do if we start binge watching TV shows at the beginning of our day off? Or go get the ice cream cone before we do the yard work? Human nature just doesn't work that way. And for people on the spectrum, who already have an incredibly difficult time motivating themselves to think about anything they're not really interested in doing, it's even more so.
Of course, the other caveat is that we can't just tell him, "No screen time. You can have it later." I've learned that saying "later," "in a while," "soon," or any of those other vague descriptors tend to backfire with Ethan. Two minutes later I'll hear, "Now? What about now? Is it time yet?"
And so, the best plan we've been able to work out, when everything falls into place just right (which I have to say, is rarely) is that we talk to Ethan beforehand. We tell him he can't just walk in to a family gathering and demand a screen. I'll tell him he can play at a specific time, if he's acting properly. I'll tell him he has to put the screen down when it's time to eat or do something like open birthday presents, or he doesn't get it back. I'll tell him he has to put the screen down to say goodbye. And I'll attempt (this usually goes the least swimmingly) to suggest ideas about other things he could do while he's waiting for his screen time.
What usually happens is that when all is said and done, after some bumps in the road when he gets too rowdy or makes messes because he's really bored, he does end up finding something to do and even having fun playing after a while. He has the ability to interact -- we wouldn't insist on it if he didn't. But I can't tell you how many times I've asked him the favorite part of his day, after a family gathering, and he'll stop and think and be very quiet for a moment and then answer, quite confidently, "Screen time."
Ahh, Ethan. You make me want to pull my hair out sometimes. But you know I love you fiercely. Even more than a screen, buddy. Even more than a screen.
"You gave him his paycheck before he did his work...you have to do it the other way around," Max's dad tries to explain. (Watch a little here at 32:16).
These days, when we are visiting with relatives, iPads and Kindles tend to be Ethan's "marshmallows." And while he is much different (and less rigid by far) than the character on the show, I often feel as if we are living out that scene.
I totally get why Ethan needs to have special screen time when we are visiting with family. It's a treat; it's a fun thing to do at the grandparents'. It's an outlet, because we're somewhere different and he can't do his usual stuff. It's a way to ease anxiety. It's something to do when a bunch of grownups are sitting around talking. It's a way to occupy himself if he's got too much pent up energy but has no real appropriate way to get it out (especially with this long winter we've had).
But the question of when and how long to let him spend with the screen is what tends to trip us up. To me, it all comes back to the never-ending quest to balance respecting Ethan's differences while giving him tools to get by in real life.
We could hand him an iPad the moment he walks in the door. He'll be thrilled. He'll also disappear for hours. He'll miss out on any interaction with family...sometimes family he sees only a few times a year. And the longer he plays, the harder it is to tear him away. Meltdowns ensue.
We could force him to hang out and tell him screen time is not for family gatherings. His stress and boredom would boil over, especially if it's not outdoor weather. This boy who struggles with just finding just any old thing to play with or to do would be fairly miserable...or else end up wrestling or doing something else that would get grown-ups snapping at him.
What we've found is really like that Parenthood episode: we need to know the appropriate time to "take out the marshmallows." And in some ways, I don't like it. I feel guilty dangling a reward in front of my son. It's only when I remind myself that he truly is wired differently that I feel a little more at peace.
If you don't take out the proverbial marshmallows at all, Ethan would be profoundly disappointed. He lives for his screen time. It makes him immensely happy. He often tells me he's thinking about various games or music from games or scenes from a game. But take out the marshmallows too early, and we've lost him. Ethan has to know that he can't walk into someone's house and demand an iPad. How often in life, the older we grow, do any of us get instant gratification? We have to learn how to sit with that feeling of needing to wait...of working to get the reward...of getting our chores done so we can relax.
How often do any of us get to the stuff we're supposed to do if we start binge watching TV shows at the beginning of our day off? Or go get the ice cream cone before we do the yard work? Human nature just doesn't work that way. And for people on the spectrum, who already have an incredibly difficult time motivating themselves to think about anything they're not really interested in doing, it's even more so.
Of course, the other caveat is that we can't just tell him, "No screen time. You can have it later." I've learned that saying "later," "in a while," "soon," or any of those other vague descriptors tend to backfire with Ethan. Two minutes later I'll hear, "Now? What about now? Is it time yet?"
And so, the best plan we've been able to work out, when everything falls into place just right (which I have to say, is rarely) is that we talk to Ethan beforehand. We tell him he can't just walk in to a family gathering and demand a screen. I'll tell him he can play at a specific time, if he's acting properly. I'll tell him he has to put the screen down when it's time to eat or do something like open birthday presents, or he doesn't get it back. I'll tell him he has to put the screen down to say goodbye. And I'll attempt (this usually goes the least swimmingly) to suggest ideas about other things he could do while he's waiting for his screen time.
What usually happens is that when all is said and done, after some bumps in the road when he gets too rowdy or makes messes because he's really bored, he does end up finding something to do and even having fun playing after a while. He has the ability to interact -- we wouldn't insist on it if he didn't. But I can't tell you how many times I've asked him the favorite part of his day, after a family gathering, and he'll stop and think and be very quiet for a moment and then answer, quite confidently, "Screen time."
Ahh, Ethan. You make me want to pull my hair out sometimes. But you know I love you fiercely. Even more than a screen, buddy. Even more than a screen.
Wednesday, March 18, 2015
Saturday Drive
"Kids, we're going on an adventure today!" It was a Saturday. In March. Around these parts, this time of year, I get desperate to find something different to do when we've been cooped up inside for so long.
"Are we going somewhere for a long time in the car?" either Anna or Ethan asked.
"Well, yes," I said quickly. "But we're going to see something COOL!"
"But I want to play WiiU," whined one. You can guess which.
"I don't like long car rides," whined the other.
Sometimes I just don't get my kids. I know, they're their own little people. But I still don't understand how they could be my flesh and blood and not like mystery car rides.
When I was a kid, we didn't have much money, and a lot of Saturdays we spent just driving, looking for something we hadn't seen before, on the back roads of Massachusetts or sometimes even Connecticut, New York, New Hampshire or Vermont. That's the beauty of New England. It doesn't take you long to get somewhere completely different (hello, beach or mountains!). To this day, I get a little giddy about driving somewhere I've never been before, about checking out little towns or going a different way to get somewhere or finding a scenic road or vista or just getting off the darned highway I drive up and down every day.
We loaded into the car and it took about five minutes for someone to get too hot and ask to open the windows. Then there was the arguing about whether a certain song on the radio should be turned up loud or not.
"Where are we going?" I kept hearing from the back as we made our way through the towns...West Hartford...Avon...Canton...New Hartford. At one point we were supposedly on a scenic road that didn't seem very scenic, but hey, this is Connecticut, not the Pacific Coast Highway.
Once we passed Torrington, which to me is a big, sad kind of old mill town, I began to feel more relaxed. We left traffic lights behind and kept climbing and zooming down hills.
"Roller coaster roads! This is like Maine!" Ethan called out.
I admired the contrast of red barns against white snow. The Litchfield Hills (Connecticut's sorry little "mountains") spread all around us. Evidence of spring was nowhere in sight. But that didn't matter. These were new roads, new towns. This wasn't another walk down the aisles of Target or the shopping madness in Manchester or the same old drives to school and back.
Goshen...Cornwall...Kent. We pulled into the driveway of a state park. From the road we saw it.
"A frozen waterfall!" Anna exclaimed. "Can we go see it?"
"That's why we're here."
So we tumbled out of the car...and immediately realized how much colder and windier it had gotten in the last hour, and how we all really needed boots and mittens (at least Chloe had them on). Nevertheless, we made our way across the little covered bridge and down the path towards the water. Chloe insisted on walking, which meant our pace was veeerrry slllooow. And she kept falling.
We looked out at what is normally a cascading waterfall. Most of it was frozen but near the bottom we could see water bubbling under the ice, and the water at the bottom was flowing. The stream wound its way through the park we were in and out into the woods to our right. All around us were snow-covered hills and soaring maples that had their own beauty, standing stark against the gray sky.
I spent about 90 seconds enjoying it all; breathing in the crisp air; watching the family who had just come out of the woods above us, whooshing by us on sleds.
Then the wheels came off the bus. Or okay, they came loose. Chloe kept losing her mittens and almost lost a shoe. Ethan roared ahead of us and got way too close to a slippery area near the bottom of the waterfall. I started yelling for him to stop and so did Anna. Then she approached him and they started fighting and shoving each other and one or both of them tumbled into the snow (I can't remember). All of this was in full view of at least five other park visitors who were probably members of the, shall we say, dignified, town of Kent (Dan and I had been here once, in the summer -- it's the kind of place that has quaint inns and antique shops and pricey tiny clothing stores and lots of New York license plates. It has a Martha's Vineyard sort of feel). I wondered if they'd seen my falling apart Saturn SUV and wondered what kind of riff-raff had wandered into town.
Ethan took off across a field in search of a bathroom (of course they were locked) and I kept yelling at him to not get too close to the stream. Anna began shivering uncontrollably since, as a tween, it's illegal to zip up her coat. Chloe cried because she wanted to walk even though most of her was quickly growing wet and cold.
About 20 minutes after we'd arrived, we were back in the car. I felt as if I'd just completed some sort of marathon...breathless, numb, exhilarated, and wondering if I was crazy. We had to drive home now. Had this really been a good idea?
"I like this place," Ethan announced. "I wish we could stay longer."
"I'm glad we came here," Anna said.
"Yeah. Thank you for taking us here, mama," Ethan added.
And so, even though the ride home involved crying, whining kids, a frantic search for a gas station after realizing I was low on fuel, and too much sugar at Dunkin' Donuts to stop the wails of children who were convinced they were going to starve, I knew: it had all been worth it.
"Are we going somewhere for a long time in the car?" either Anna or Ethan asked.
"Well, yes," I said quickly. "But we're going to see something COOL!"
"But I want to play WiiU," whined one. You can guess which.
"I don't like long car rides," whined the other.
Sometimes I just don't get my kids. I know, they're their own little people. But I still don't understand how they could be my flesh and blood and not like mystery car rides.
When I was a kid, we didn't have much money, and a lot of Saturdays we spent just driving, looking for something we hadn't seen before, on the back roads of Massachusetts or sometimes even Connecticut, New York, New Hampshire or Vermont. That's the beauty of New England. It doesn't take you long to get somewhere completely different (hello, beach or mountains!). To this day, I get a little giddy about driving somewhere I've never been before, about checking out little towns or going a different way to get somewhere or finding a scenic road or vista or just getting off the darned highway I drive up and down every day.
We loaded into the car and it took about five minutes for someone to get too hot and ask to open the windows. Then there was the arguing about whether a certain song on the radio should be turned up loud or not.
"Where are we going?" I kept hearing from the back as we made our way through the towns...West Hartford...Avon...Canton...New Hartford. At one point we were supposedly on a scenic road that didn't seem very scenic, but hey, this is Connecticut, not the Pacific Coast Highway.
Once we passed Torrington, which to me is a big, sad kind of old mill town, I began to feel more relaxed. We left traffic lights behind and kept climbing and zooming down hills.
"Roller coaster roads! This is like Maine!" Ethan called out.
I admired the contrast of red barns against white snow. The Litchfield Hills (Connecticut's sorry little "mountains") spread all around us. Evidence of spring was nowhere in sight. But that didn't matter. These were new roads, new towns. This wasn't another walk down the aisles of Target or the shopping madness in Manchester or the same old drives to school and back.
Goshen...Cornwall...Kent. We pulled into the driveway of a state park. From the road we saw it.
"A frozen waterfall!" Anna exclaimed. "Can we go see it?"
"That's why we're here."
So we tumbled out of the car...and immediately realized how much colder and windier it had gotten in the last hour, and how we all really needed boots and mittens (at least Chloe had them on). Nevertheless, we made our way across the little covered bridge and down the path towards the water. Chloe insisted on walking, which meant our pace was veeerrry slllooow. And she kept falling.
We looked out at what is normally a cascading waterfall. Most of it was frozen but near the bottom we could see water bubbling under the ice, and the water at the bottom was flowing. The stream wound its way through the park we were in and out into the woods to our right. All around us were snow-covered hills and soaring maples that had their own beauty, standing stark against the gray sky.
I spent about 90 seconds enjoying it all; breathing in the crisp air; watching the family who had just come out of the woods above us, whooshing by us on sleds.
Then the wheels came off the bus. Or okay, they came loose. Chloe kept losing her mittens and almost lost a shoe. Ethan roared ahead of us and got way too close to a slippery area near the bottom of the waterfall. I started yelling for him to stop and so did Anna. Then she approached him and they started fighting and shoving each other and one or both of them tumbled into the snow (I can't remember). All of this was in full view of at least five other park visitors who were probably members of the, shall we say, dignified, town of Kent (Dan and I had been here once, in the summer -- it's the kind of place that has quaint inns and antique shops and pricey tiny clothing stores and lots of New York license plates. It has a Martha's Vineyard sort of feel). I wondered if they'd seen my falling apart Saturn SUV and wondered what kind of riff-raff had wandered into town. Ethan took off across a field in search of a bathroom (of course they were locked) and I kept yelling at him to not get too close to the stream. Anna began shivering uncontrollably since, as a tween, it's illegal to zip up her coat. Chloe cried because she wanted to walk even though most of her was quickly growing wet and cold.
About 20 minutes after we'd arrived, we were back in the car. I felt as if I'd just completed some sort of marathon...breathless, numb, exhilarated, and wondering if I was crazy. We had to drive home now. Had this really been a good idea?
"I like this place," Ethan announced. "I wish we could stay longer."
"I'm glad we came here," Anna said.
"Yeah. Thank you for taking us here, mama," Ethan added.
And so, even though the ride home involved crying, whining kids, a frantic search for a gas station after realizing I was low on fuel, and too much sugar at Dunkin' Donuts to stop the wails of children who were convinced they were going to starve, I knew: it had all been worth it.
Friday, March 13, 2015
Reflections on (Gulp!) Middle Age
I remember clearly being in the last years of elementary school before the kids "graduated" on to the junior high/high school in our town. Every once in a while on of the sixth graders from the year before would come back for a visit and would wow us with stories of having a locker and switching classes. I would look at them in awe and reverence, even though these kids were just a year or two older than I. Wow. Lockers. And then I'd feel secretly scared of the unknown, wondering how I would handle something so new and different.
Then I'd get to the age of switching classes and teachers and after a few days it would be no big deal, and I'd be looking to people getting their driver's licenses and feeling secretly nervous and full of wonderment about ever making it to that age.
A few months ago, I turned 40, and I'm not going to lie: lately I've been looking at people's Facebook photos, at all of us Gen-Xers who graduated high school in the eighties and nineties, and I think, "Who are all of these middle-aged people?" Only I know my photos look the same. And then I remind myself again, "That's right. You ARE middle-aged now."
And then I sink into a depression for a few minutes, because, well, that does kind of stink. I look back and think, "THAT was 40 years?" Or 35 or so, that I can remember. Then I wonder what I really did with it all. And I think about what I could do differently so as to not waste the rest. Like not playing so much Trivia Crack. Or holding on to resentment and unforgiveness or being afraid to do the things I really long to do.
But I digress. As I've looked at these pictures of all of us sprouting gray hair and crows' eyes, and swallowed and acknowledged yes, in 10 years I'll be 50, I've realized a few things. A disclaimer here: most of them are so completely obvious that they probably aren't an epiphany to anyone else. What can I say? I'm blonde. Or I just wasn't thinking before. Somehow, until very recently, I hadn't really understood the following about aging:
1. Everyone you know ages with you. Yeah, I know. Duh. But I'm serious. Your group, your family, your friends you've always had, your cousins, the people you hung out with in the neighborhood, whatever...they're aging with you. It's not like you look in the mirror yet everyone else is frozen in time. It's not like you feel so old while everyone else is still young. No. Your whole group, your generation, your clique, whatever, is doing this thing, too. This gives me a sense of "we're all in this together." We can commiserate or share wisdom we've learned. I don't know why, but for most of my life I imagined growing older all by myself.
2. The older you get, the older "old" is. I clearly remember writing in a journal in 9th grade English that 40 was old. I have to smile at how that number has slowly edged up over the years. I'm pretty sure when I'm 70 old will be 90 or 100. Of course, on the flip side what I considered "young" has grown older as well. These days I feel as if 20-year-olds are practically "kids." Yet I felt so old when I was 20, so mature!
3. Like those kids back when I was in elementary school, there will always be people just a little bit ahead of you. Learning from them, hearing about their experiences, makes the new things coming a little less scary. For some reason I always thought I'd be doing new things almost in a vacuum. I'd be the only one filling out college applications or getting married or having a baby. That's what made the whole thing so daunting. But over the years I've been so grateful for those on the journey just ahead of me who help give me a glimpse, answer questions, and prepare me for what's to come.
4. Lastly, I'm starting to think, I'm beginning to embrace, that your body can do one thing, while inside you never feel "old." There are days I wonder how I can possibly be "grown up" when I feel I have so much to learn or still feel so much like a kid inside. I'm guessing you can be 80 and yet have days when internally you are a 17-year-old or just turning 30. There are days you can still hurt like a child. There are days maybe you wish to play like a child. The older I grow, the more I accept old people as people, not just "old." This is horrible to say, but I think I used to see the hunched-over person who was maybe forgetful or not completely coherent, and slow, and somehow forget there was still a person in there.
There is still a person who loved and played and ran and teased and got into trouble. There is still a person who thinks and cares and hurts and maybe sometimes feels like a much younger version of themself and is frustrated by a body and mind that don't always cooperate.
Now that I'm middle-aged, I better understand that my body may indeed age, but I will retain that inner part of me who will always be me, the true me, the eternal, essential part.
They may have circles under them, but I'm glad my eyes have been opened.
Then I'd get to the age of switching classes and teachers and after a few days it would be no big deal, and I'd be looking to people getting their driver's licenses and feeling secretly nervous and full of wonderment about ever making it to that age.
A few months ago, I turned 40, and I'm not going to lie: lately I've been looking at people's Facebook photos, at all of us Gen-Xers who graduated high school in the eighties and nineties, and I think, "Who are all of these middle-aged people?" Only I know my photos look the same. And then I remind myself again, "That's right. You ARE middle-aged now."
And then I sink into a depression for a few minutes, because, well, that does kind of stink. I look back and think, "THAT was 40 years?" Or 35 or so, that I can remember. Then I wonder what I really did with it all. And I think about what I could do differently so as to not waste the rest. Like not playing so much Trivia Crack. Or holding on to resentment and unforgiveness or being afraid to do the things I really long to do.
But I digress. As I've looked at these pictures of all of us sprouting gray hair and crows' eyes, and swallowed and acknowledged yes, in 10 years I'll be 50, I've realized a few things. A disclaimer here: most of them are so completely obvious that they probably aren't an epiphany to anyone else. What can I say? I'm blonde. Or I just wasn't thinking before. Somehow, until very recently, I hadn't really understood the following about aging:
1. Everyone you know ages with you. Yeah, I know. Duh. But I'm serious. Your group, your family, your friends you've always had, your cousins, the people you hung out with in the neighborhood, whatever...they're aging with you. It's not like you look in the mirror yet everyone else is frozen in time. It's not like you feel so old while everyone else is still young. No. Your whole group, your generation, your clique, whatever, is doing this thing, too. This gives me a sense of "we're all in this together." We can commiserate or share wisdom we've learned. I don't know why, but for most of my life I imagined growing older all by myself.
2. The older you get, the older "old" is. I clearly remember writing in a journal in 9th grade English that 40 was old. I have to smile at how that number has slowly edged up over the years. I'm pretty sure when I'm 70 old will be 90 or 100. Of course, on the flip side what I considered "young" has grown older as well. These days I feel as if 20-year-olds are practically "kids." Yet I felt so old when I was 20, so mature!
3. Like those kids back when I was in elementary school, there will always be people just a little bit ahead of you. Learning from them, hearing about their experiences, makes the new things coming a little less scary. For some reason I always thought I'd be doing new things almost in a vacuum. I'd be the only one filling out college applications or getting married or having a baby. That's what made the whole thing so daunting. But over the years I've been so grateful for those on the journey just ahead of me who help give me a glimpse, answer questions, and prepare me for what's to come.
4. Lastly, I'm starting to think, I'm beginning to embrace, that your body can do one thing, while inside you never feel "old." There are days I wonder how I can possibly be "grown up" when I feel I have so much to learn or still feel so much like a kid inside. I'm guessing you can be 80 and yet have days when internally you are a 17-year-old or just turning 30. There are days you can still hurt like a child. There are days maybe you wish to play like a child. The older I grow, the more I accept old people as people, not just "old." This is horrible to say, but I think I used to see the hunched-over person who was maybe forgetful or not completely coherent, and slow, and somehow forget there was still a person in there.
There is still a person who loved and played and ran and teased and got into trouble. There is still a person who thinks and cares and hurts and maybe sometimes feels like a much younger version of themself and is frustrated by a body and mind that don't always cooperate.
Now that I'm middle-aged, I better understand that my body may indeed age, but I will retain that inner part of me who will always be me, the true me, the eternal, essential part.
They may have circles under them, but I'm glad my eyes have been opened.
Monday, March 9, 2015
Thoughts About Thinking
One of the coolest things about Ethan's version of autism is that he is able to articulate, to some extent, what he's thinking. And while no two people on the spectrum are alike, I still feel as if he helps give me a peek into not only his own mind, but how other people with autism think.
I often chat with Ethan in the car on the way to school, although this is also the time we are most likely to argue about him not wanting to chat. Maybe argue isn't the right word. Let's just say we heatedly discuss the fact that I may be asking him questions while he acts as if I'm not there.
"Mama, I can't listen to you right now!" he exclaimed from the back seat recently. "I'm thinking about something."
"What are you thinking about?"
"I can't tell you. It's embarrassing."
"Hey, I promise I won't make fun of what you're thinking. Please tell me."
"Okaaaaay. I'm trying to figure out if 'M' really IS the middle letter in the alphabet!"
A-ha. So that's why he had been murmuring numbers.
I sometimes try to gently force conversation with Ethan because I figure it's part of real life. As much as he wants to, he can't always stay in his head. I think I have a glimpse of what he's feeling. It's like when I'm in a car full of people and I just want to stare out the window and think...only I keep getting pulled into conversation. Sometimes I'm happy to chat. But there are times I just want to be kind of melancholy and introspective and reflective and watch things. And it actually feels tiring to converse. And I do wonder -- is this how he feels most of the time?
The other day I really wanted to know about something going on at school. Now I forget, but the point is that I was grilling Ethan, and I was rambling on about something as well, and at one point he announced, "I'm not barely listening to you at all!"
Oh.
"Why not?" I asked.
"Because I don't want to think about that. I want to think about computer stuff."
"What computer stuff?"
"Lexia (a phonics-type computer game from school). I'm thinking about the levels."
And so, yes. I'd talked for five minutes and he'd been thinking about the Serengeti level, and the South Pole level, and the Australia level, and so on. He's intensely focused on this game right now because he's trying to catch up to another girl in the class who seems to be the super reader of all readers and is always ahead in everything.
So Ethan spends a lot of time in his head, understandably, and we in his family get that. What concerns me at times is other kids. Maybe not now, but down the road.
I was in school with Ethan one morning and when we walked down the hallway to his classroom, where all the kids were sprawled out on the floor, taking stuff out of their backpacks to put into their lockers, I was amazed. Kids were calling out to him left and right. At least four kids tried to get his attention and they were all talking to him at once. He appeared, at least in that moment, to be more popular and more outgoing than I ever was in first grade.
Here's the thing: the hallway was so loud, so overwhelming, such an assault on the senses (I felt a little stressed myself), that he barely could respond to anyone. Not only that, but I'm pretty sure his mind was still back at the pancake breakfast we'd just had in the cafeteria and the raffle prize he'd won. It was only when most of the kids left, and he only needed to respond to one person at a time, that he was able to do so.
I've seen this happen multiple times -- he's walking and kids call out to him, and he completely ignores them. Sometimes it's because he feels shy. Often, though, it's because he's not there, in the moment. He's somewhere else. And since his mind has the ability to completely engage on one thing alone, he doesn't even hear.
Right now, the other kids shrug it off. But I can see how this will be perceived as rude in the not too distant future.
And so recently I attempted chatting with Ethan about this. We were, of course, in the car again.
"So Ethe. Do you think maybe when you walk into school today, you could remind yourself to stop thinking so much and focus on your friends saying hi? Because I think they might start to get their feelings hurt if you never answer them." I felt kind of guilty saying this. Was I asking him to be something he's not? But then again, someday if he wants a job or to make a way for himself in the world he has to be able to do this. But he is just seven.
There was no reply from the back.
"What do you think? You think maybe you could try that? I know it's hard. But I think it would be good to try to focus on what people are saying if you can."
Nothing. Cue the crickets chirping ("Bueller? Bueller?").
Finally, an exasperated voice: "Mama, I'm not listening right now! I don't want to talk because I'm thinking about something."
Sigh.
I'll end this with a gentle reminder to not just everyone out there, but to myself as well -- the people you come across with autism are most likely not ignoring you. They are just intensely focused on something else. This may at times be a drawback -- but I think it also has the potential to be one of their truest gifts.
I often chat with Ethan in the car on the way to school, although this is also the time we are most likely to argue about him not wanting to chat. Maybe argue isn't the right word. Let's just say we heatedly discuss the fact that I may be asking him questions while he acts as if I'm not there.
"Mama, I can't listen to you right now!" he exclaimed from the back seat recently. "I'm thinking about something."
"What are you thinking about?"
"I can't tell you. It's embarrassing."
"Hey, I promise I won't make fun of what you're thinking. Please tell me."
"Okaaaaay. I'm trying to figure out if 'M' really IS the middle letter in the alphabet!"
A-ha. So that's why he had been murmuring numbers.
I sometimes try to gently force conversation with Ethan because I figure it's part of real life. As much as he wants to, he can't always stay in his head. I think I have a glimpse of what he's feeling. It's like when I'm in a car full of people and I just want to stare out the window and think...only I keep getting pulled into conversation. Sometimes I'm happy to chat. But there are times I just want to be kind of melancholy and introspective and reflective and watch things. And it actually feels tiring to converse. And I do wonder -- is this how he feels most of the time?
The other day I really wanted to know about something going on at school. Now I forget, but the point is that I was grilling Ethan, and I was rambling on about something as well, and at one point he announced, "I'm not barely listening to you at all!"
Oh.
"Why not?" I asked.
"Because I don't want to think about that. I want to think about computer stuff."
"What computer stuff?"
"Lexia (a phonics-type computer game from school). I'm thinking about the levels."
And so, yes. I'd talked for five minutes and he'd been thinking about the Serengeti level, and the South Pole level, and the Australia level, and so on. He's intensely focused on this game right now because he's trying to catch up to another girl in the class who seems to be the super reader of all readers and is always ahead in everything.
So Ethan spends a lot of time in his head, understandably, and we in his family get that. What concerns me at times is other kids. Maybe not now, but down the road.
I was in school with Ethan one morning and when we walked down the hallway to his classroom, where all the kids were sprawled out on the floor, taking stuff out of their backpacks to put into their lockers, I was amazed. Kids were calling out to him left and right. At least four kids tried to get his attention and they were all talking to him at once. He appeared, at least in that moment, to be more popular and more outgoing than I ever was in first grade.
Here's the thing: the hallway was so loud, so overwhelming, such an assault on the senses (I felt a little stressed myself), that he barely could respond to anyone. Not only that, but I'm pretty sure his mind was still back at the pancake breakfast we'd just had in the cafeteria and the raffle prize he'd won. It was only when most of the kids left, and he only needed to respond to one person at a time, that he was able to do so.
I've seen this happen multiple times -- he's walking and kids call out to him, and he completely ignores them. Sometimes it's because he feels shy. Often, though, it's because he's not there, in the moment. He's somewhere else. And since his mind has the ability to completely engage on one thing alone, he doesn't even hear.
Right now, the other kids shrug it off. But I can see how this will be perceived as rude in the not too distant future.
And so recently I attempted chatting with Ethan about this. We were, of course, in the car again.
"So Ethe. Do you think maybe when you walk into school today, you could remind yourself to stop thinking so much and focus on your friends saying hi? Because I think they might start to get their feelings hurt if you never answer them." I felt kind of guilty saying this. Was I asking him to be something he's not? But then again, someday if he wants a job or to make a way for himself in the world he has to be able to do this. But he is just seven.
There was no reply from the back.
"What do you think? You think maybe you could try that? I know it's hard. But I think it would be good to try to focus on what people are saying if you can."
Nothing. Cue the crickets chirping ("Bueller? Bueller?").
Finally, an exasperated voice: "Mama, I'm not listening right now! I don't want to talk because I'm thinking about something."
Sigh.
I'll end this with a gentle reminder to not just everyone out there, but to myself as well -- the people you come across with autism are most likely not ignoring you. They are just intensely focused on something else. This may at times be a drawback -- but I think it also has the potential to be one of their truest gifts.
Thursday, March 5, 2015
A View from the Middle
I'm just sitting here wondering if the two sides of the autism camp are ever going to get along.
I know this is a hot-button issue. And I know most of you are aware of what I'm referring to -- the great rift, the Us vs. Them that's developed in recent years over those who see autism as a tragedy to be cured and those who feel as if people on the spectrum are fine, thank you, just the way they are.
This is such a hard one for me, because I see both sides. I've lived both sides. I truly believe you can make arguments either way, and I see the way espousing aspects of either point of view could end up hurting people with autism (or autistic people, as some prefer).
Here's the thing: there are times I tire of Autism Speaks' rhetoric and yeah, I'll say it, fear-mongering. The worst of it all is that I get the sense they feel the best way to get attention, the way to get funding, the way to make an impact, is to paint autism with the most cruel, dramatic brush as possible. To trot out scary stats and make the most of them. To me Autism Speaks...it's time to listen, (one of their "taglines"), really means, "we're going to tell you what autism is, so listen to our frightful picture and help us do something to eradicate this thing."
I'm no expert on this for sure, but my understanding is the vast majority of Autism Speaks' research goes not towards the people already here needing help and better options, but on research into the root causes and early detection and treatment -- this includes the possibility of prenatal testing.
This scares me more than any of their statistics. This scares me, because I think of the burden they portray autism to be, and about that running through an expectant mother's mind as she goes for prenatal autism testing at some point who-knows when in the future. I think of that, and then I think of my incredibly awesome joy of a son, the one who has an actual, definite autism diagnosis. The one who has looked at me and told me how much he loves me. The one who loves numbers and repeating scripts from commercials and music and playing with his sisters and sports and all things on a screen.
My son is not something to eradicate.
And yet there are parts, there are some areas of the autism spectrum that are truly horrific. When you have a person who lives paralyzed and anxious because of the assault on their senses and their different way of taking the world in...a person completely nonverbal or close to it who has no good way to communicate their needs and as a result acts out in all sorts of destructive ways to express their frustration...a person who regularly participates in self-injurious behaviors -- how is that something we can just open our arms to and accept as being okay?
Again, I feel pretty unqualified to even be writing about this because there are so many things I don't know, and so much I haven't researched. But, as someone who grew up with the most severely autistic individual I've ever met, and who parents a son with a form of autism the average person on the street cannot even see -- I find myself at times growing frustrated with both sides.
I guess looking back over it all I would say two things:
We have to do more about services for teens and adults with autism, particularly in the areas of assimilating in college, and finding employment and living arrangements. Several years ago my mom was with me at an Autism Speaks Walk (I've since given these up) and she kept looking around at the informational booths and shaking her head. "Where are all of the services for older people? These are all for kids," she commented. It's as if the pervading mindset is (or maybe it's just human nature) that we'll throw everything possible at these kids to help them now. Only, autism is not something that just "clears up." As much as we want help for today, we HAVE to think about tomorrow, because tomorrow will surely come for today's kids on the spectrum. And there's so much more we could be doing.
The other is, and here I agree with well-known autism blogger Jess Wilson at A Diary of a Mom (which is not always the case). Autism Speaks can't have it both ways. You can't quote alarming statistics and paint devastating scenarios using numbers that include a vast number of people who are getting by just fine, who are different but happy, who in the past may not have even received an autism diagnosis, who just have a different way of perceiving the world and need understanding. There is a very real group of people like my brother. They desperately need help and yes, I dare to say I don't open my arms and accept this type of autism as just fine. I love my brother, but I don't think this is his best kind of life.
But we can't paint with such a broad brush. There are people out there still not vaccinating because they are terrified that autism is exploding in our country. We can't forget this is a spectrum that can't be put into a neat little box, and probably can't be addressed in the typical way we'd fight say, cancer or work to find a cure for cystic fibrosis.
And the more I listen, the more I realize the arguments about autism and what to do about it run as broadly as the spectrum itself. And so we must approach them in the same way...with understanding, with patience, and with the openness to being inventive, creative, and thoughtful about not just today, but about how today's actions will impact tomorrow.
I know this is a hot-button issue. And I know most of you are aware of what I'm referring to -- the great rift, the Us vs. Them that's developed in recent years over those who see autism as a tragedy to be cured and those who feel as if people on the spectrum are fine, thank you, just the way they are.
This is such a hard one for me, because I see both sides. I've lived both sides. I truly believe you can make arguments either way, and I see the way espousing aspects of either point of view could end up hurting people with autism (or autistic people, as some prefer).
Here's the thing: there are times I tire of Autism Speaks' rhetoric and yeah, I'll say it, fear-mongering. The worst of it all is that I get the sense they feel the best way to get attention, the way to get funding, the way to make an impact, is to paint autism with the most cruel, dramatic brush as possible. To trot out scary stats and make the most of them. To me Autism Speaks...it's time to listen, (one of their "taglines"), really means, "we're going to tell you what autism is, so listen to our frightful picture and help us do something to eradicate this thing."
I'm no expert on this for sure, but my understanding is the vast majority of Autism Speaks' research goes not towards the people already here needing help and better options, but on research into the root causes and early detection and treatment -- this includes the possibility of prenatal testing.
This scares me more than any of their statistics. This scares me, because I think of the burden they portray autism to be, and about that running through an expectant mother's mind as she goes for prenatal autism testing at some point who-knows when in the future. I think of that, and then I think of my incredibly awesome joy of a son, the one who has an actual, definite autism diagnosis. The one who has looked at me and told me how much he loves me. The one who loves numbers and repeating scripts from commercials and music and playing with his sisters and sports and all things on a screen.
My son is not something to eradicate.
And yet there are parts, there are some areas of the autism spectrum that are truly horrific. When you have a person who lives paralyzed and anxious because of the assault on their senses and their different way of taking the world in...a person completely nonverbal or close to it who has no good way to communicate their needs and as a result acts out in all sorts of destructive ways to express their frustration...a person who regularly participates in self-injurious behaviors -- how is that something we can just open our arms to and accept as being okay?
Again, I feel pretty unqualified to even be writing about this because there are so many things I don't know, and so much I haven't researched. But, as someone who grew up with the most severely autistic individual I've ever met, and who parents a son with a form of autism the average person on the street cannot even see -- I find myself at times growing frustrated with both sides.
I guess looking back over it all I would say two things:
We have to do more about services for teens and adults with autism, particularly in the areas of assimilating in college, and finding employment and living arrangements. Several years ago my mom was with me at an Autism Speaks Walk (I've since given these up) and she kept looking around at the informational booths and shaking her head. "Where are all of the services for older people? These are all for kids," she commented. It's as if the pervading mindset is (or maybe it's just human nature) that we'll throw everything possible at these kids to help them now. Only, autism is not something that just "clears up." As much as we want help for today, we HAVE to think about tomorrow, because tomorrow will surely come for today's kids on the spectrum. And there's so much more we could be doing.
The other is, and here I agree with well-known autism blogger Jess Wilson at A Diary of a Mom (which is not always the case). Autism Speaks can't have it both ways. You can't quote alarming statistics and paint devastating scenarios using numbers that include a vast number of people who are getting by just fine, who are different but happy, who in the past may not have even received an autism diagnosis, who just have a different way of perceiving the world and need understanding. There is a very real group of people like my brother. They desperately need help and yes, I dare to say I don't open my arms and accept this type of autism as just fine. I love my brother, but I don't think this is his best kind of life.
But we can't paint with such a broad brush. There are people out there still not vaccinating because they are terrified that autism is exploding in our country. We can't forget this is a spectrum that can't be put into a neat little box, and probably can't be addressed in the typical way we'd fight say, cancer or work to find a cure for cystic fibrosis.
And the more I listen, the more I realize the arguments about autism and what to do about it run as broadly as the spectrum itself. And so we must approach them in the same way...with understanding, with patience, and with the openness to being inventive, creative, and thoughtful about not just today, but about how today's actions will impact tomorrow.
Tuesday, March 3, 2015
Philosophy Lessons from a 13-Month-Old
So among Chloe's favorite things to do these days are learn how to crawl up the stairs and attempt to build block towers.
The stair thing, well, it's a catch-22. I want her to know how to do it, but then again I don't really want her climbing. We won't even talk about the day I was really sick and suddenly heard Ethan upstairs with her. Apparently when I'd zoned out he'd sat at the top and coaxed her up the stairs. "See? She can do it!" he announced proudly, while I nearly passed out thinking about what could have happened.
So I allow her to climb the stairs sometimes, always right behind her, to get more practice in case we have one of these "incidents" at another point. And she'll start out eagerly and then push herself to keep going. Sometimes she stops in the middle and looks around as if she's thinking, "Wow. I'm kind of getting up high." And then she plods on. The funny thing? She always stops at the second to the last step. And she starts to cry. She'll try to climb but something stops her. The last step looks different...or maybe it's that there's not as much to hold on to.
I watched her hang back when she had the World of Upstairs just inches away, and wondered how often we all do that. How many times do we get so close to making a change, to taking a risk, to doing what we've always told ourselves we would do, and something stops us? Sometimes we've even done the most difficult part of the journey. But something about taking that last step, something about the reality of it all overwhelms us, and we stay in the Land of In-Between.
As for blocks, Chloe's not been the type to enjoy knocking them down that much. Both Anna and Ethan used to do this gleefully, whereas I get the sense she doesn't really like wrecking things. She will almost politely knock towers over, but in the last week or so Chloe has decided she wants to build them. And so she's earnestly grabbed some of the oodles of colored wooden blocks we have lying around, and she gets the second block into position -- and then, nine times out of 10, she runs into a little snag.
"Chloe, you have to learn how to let the block go," I heard myself saying, and then thought, Who knew? You don't think about all of the steps that go into building something -- even an object as simple as a tower of a few blocks. And you can have the materials, you can have the desire and intent, you can get them into the right position...but you also have to open your pudgy little fist and let the block go.
Chloe kept trying to do this. She'd get the block in place and start to let go but at the last minute snatch it back. Then move it over. Then push it to the floor. Or take just long enough to let go that everything lost its balance and the tower was no more. A few times she'd get it -- then sometimes she'd go right away and grab the block back.
Sometimes we think we have to have our hands into everything, when really the best thing we can do is open them up wide and step back. Sometimes we can be our own worst enemy. Sometimes we can have the best intentions but need help with the execution. And sometimes we've done everything we were supposed to do -- and the worst option is to go grab it all back and upset the natural order of things.
Who knew, indeed. Sometimes the best way to complete something is to let go of it.
The stair thing, well, it's a catch-22. I want her to know how to do it, but then again I don't really want her climbing. We won't even talk about the day I was really sick and suddenly heard Ethan upstairs with her. Apparently when I'd zoned out he'd sat at the top and coaxed her up the stairs. "See? She can do it!" he announced proudly, while I nearly passed out thinking about what could have happened.
So I allow her to climb the stairs sometimes, always right behind her, to get more practice in case we have one of these "incidents" at another point. And she'll start out eagerly and then push herself to keep going. Sometimes she stops in the middle and looks around as if she's thinking, "Wow. I'm kind of getting up high." And then she plods on. The funny thing? She always stops at the second to the last step. And she starts to cry. She'll try to climb but something stops her. The last step looks different...or maybe it's that there's not as much to hold on to.
I watched her hang back when she had the World of Upstairs just inches away, and wondered how often we all do that. How many times do we get so close to making a change, to taking a risk, to doing what we've always told ourselves we would do, and something stops us? Sometimes we've even done the most difficult part of the journey. But something about taking that last step, something about the reality of it all overwhelms us, and we stay in the Land of In-Between.
As for blocks, Chloe's not been the type to enjoy knocking them down that much. Both Anna and Ethan used to do this gleefully, whereas I get the sense she doesn't really like wrecking things. She will almost politely knock towers over, but in the last week or so Chloe has decided she wants to build them. And so she's earnestly grabbed some of the oodles of colored wooden blocks we have lying around, and she gets the second block into position -- and then, nine times out of 10, she runs into a little snag.
"Chloe, you have to learn how to let the block go," I heard myself saying, and then thought, Who knew? You don't think about all of the steps that go into building something -- even an object as simple as a tower of a few blocks. And you can have the materials, you can have the desire and intent, you can get them into the right position...but you also have to open your pudgy little fist and let the block go.
Chloe kept trying to do this. She'd get the block in place and start to let go but at the last minute snatch it back. Then move it over. Then push it to the floor. Or take just long enough to let go that everything lost its balance and the tower was no more. A few times she'd get it -- then sometimes she'd go right away and grab the block back.
Sometimes we think we have to have our hands into everything, when really the best thing we can do is open them up wide and step back. Sometimes we can be our own worst enemy. Sometimes we can have the best intentions but need help with the execution. And sometimes we've done everything we were supposed to do -- and the worst option is to go grab it all back and upset the natural order of things.
Who knew, indeed. Sometimes the best way to complete something is to let go of it.
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