Creativity is a funny thing. When you're trying really hard to create one thing, your brain likes to take a side road into other projects and ideas. Lately I've been working on my first novel, which is drafted but is in the midst of a major revision. I've been trying to get the ideas going for that revision, but what starts happening? Ideas popping up for non-fiction writing.
So here I am, back at this blog after four years. Four! It's hard to believe Blogger kept it around. And it's hard to believe the lights will still come on in my head. That's the beauty of personal non-fiction, though--you're always living it.
It has been a long time since I felt ready to talk about the things that our family is going through. (Puberty, for one. Yikes!) I plan to write posts on gaslighting, child care, violence, self-care, humor, and more. We'll be headed to Yosemite National Park in a little over a week--maybe I'll live-blog the journey. Yes, I'm ambitious.
For all of you out there who have tuned into my ramblings, thank you. I hope I can reward your patience.
Friday, June 3, 2016
Tuesday, October 30, 2012
A dream discarded
When I graduated from my BA program, my dream was to become a book editor. There was at least one problem with that dream, however--I really did not want to live in New York City. No offense intended to New Yorkers: your city is an amazing place. However, being a book editor in New York, I discovered, generally means being poor in New York, and being poor in New York has enough disadvantages that for me they outweighed the attractions of that fair city.
If you want to be a book editor and you don't want to live in New York City, you need to be prepared for the fact that you are not alone. On the rare occasion when an editor job opens up for a university or local publisher, the applicants will be myriad. So that dream of mine died on the vine, and I moved on.
As my life and my career rolled on, I didn't think about my would-be career that often. I edited a few books in my roles of newspaper section editor, grad student, and freelancer. It's great work, and I am grateful when I have the opportunity to do it.
I suppose, though, that I should be grateful that I did not have my "dream job" as a book editor when I got my son's autism diagnosis, because I probably would have lost it. The demands of caring for my children would have taken precedence over a demanding career. Instead, I've been able to keep my career because I work for an exceptionally flexible company. And every once in a while I get to edit a book for them.
I am reminded of this today because I had a little misunderstanding last week, and I thought I had an opportunity, through my current employer, to work for a publisher on a regular basis. Looking back, I suspect that my mind may have filled in some blanks from a bad connection with things it wanted to hear. It turned out that the opportunity was different--good editing work, but not book editing.
This experience has made me reflect on hopes and dreams. If you have a child with a disability, you know the pain of having to discard the dreams you had for that child. I don't mean that as an insult to our children in any way--they are wonderful, enlightening people who have fascinating futures. Dreams are one of parents' indulgences. They are luxuries fed by the tremendous potential that children represent. Parents of kids with special needs discover quickly that those indulgences are unfair to their children and that acceptance is the generous alternative.
Still, we are all dreamers. We dream about what we want to be when we grow up. We dream about finding the perfect love. And more often than not, we all get disappointed.
I have given up on dreams. It sounds so sad and cruel to say. But most of the time I don't think about this reality with anger, just acceptance.
Instead, I leave myself open to serendipity.
While dreams rarely come true, that doesn't mean the world is not full of magic. It's full of magic that we don't expect--the moment during an October afternoon when a brilliant blue sky breaks through gravid gray and white clouds, and the sun lights up the red and yellow leaves.
We had a moment like that a few weeks ago. It was fall break, and the kids, especially our son, were grouchy from being cooped up at home. We went for a walk to one of my favorite parks--one of its trails leads up onto the mountainside where it connects with the Bonneville Shoreline Trail. My husband chased my daughter, who had decided to run ahead, and I walked with my son. We caught up with them at a bench underneath an enormous scrub oak tree. The ground was littered with shiny brown acorns, which my daughter was collecting in her hands. The four of us sat on the bench, looking out at the splendid view, surrounded by the peace of the mountains. It was magical.
In the place in my heart where dreams once grew, I collect memories like this. And I wait to gather new ones.
If you want to be a book editor and you don't want to live in New York City, you need to be prepared for the fact that you are not alone. On the rare occasion when an editor job opens up for a university or local publisher, the applicants will be myriad. So that dream of mine died on the vine, and I moved on.
As my life and my career rolled on, I didn't think about my would-be career that often. I edited a few books in my roles of newspaper section editor, grad student, and freelancer. It's great work, and I am grateful when I have the opportunity to do it.
I suppose, though, that I should be grateful that I did not have my "dream job" as a book editor when I got my son's autism diagnosis, because I probably would have lost it. The demands of caring for my children would have taken precedence over a demanding career. Instead, I've been able to keep my career because I work for an exceptionally flexible company. And every once in a while I get to edit a book for them.
I am reminded of this today because I had a little misunderstanding last week, and I thought I had an opportunity, through my current employer, to work for a publisher on a regular basis. Looking back, I suspect that my mind may have filled in some blanks from a bad connection with things it wanted to hear. It turned out that the opportunity was different--good editing work, but not book editing.
This experience has made me reflect on hopes and dreams. If you have a child with a disability, you know the pain of having to discard the dreams you had for that child. I don't mean that as an insult to our children in any way--they are wonderful, enlightening people who have fascinating futures. Dreams are one of parents' indulgences. They are luxuries fed by the tremendous potential that children represent. Parents of kids with special needs discover quickly that those indulgences are unfair to their children and that acceptance is the generous alternative.
Still, we are all dreamers. We dream about what we want to be when we grow up. We dream about finding the perfect love. And more often than not, we all get disappointed.
I have given up on dreams. It sounds so sad and cruel to say. But most of the time I don't think about this reality with anger, just acceptance.
Instead, I leave myself open to serendipity.
While dreams rarely come true, that doesn't mean the world is not full of magic. It's full of magic that we don't expect--the moment during an October afternoon when a brilliant blue sky breaks through gravid gray and white clouds, and the sun lights up the red and yellow leaves.
We had a moment like that a few weeks ago. It was fall break, and the kids, especially our son, were grouchy from being cooped up at home. We went for a walk to one of my favorite parks--one of its trails leads up onto the mountainside where it connects with the Bonneville Shoreline Trail. My husband chased my daughter, who had decided to run ahead, and I walked with my son. We caught up with them at a bench underneath an enormous scrub oak tree. The ground was littered with shiny brown acorns, which my daughter was collecting in her hands. The four of us sat on the bench, looking out at the splendid view, surrounded by the peace of the mountains. It was magical.
In the place in my heart where dreams once grew, I collect memories like this. And I wait to gather new ones.
Tuesday, October 9, 2012
Dear Mr. Stubbs (an open letter)
Dear Mr. Stubbs:
As I write this letter at 10 PM, my son is screaming. He's making wordless, tortured sounds like a wounded animal. We don't know what is wrong—he can't tell us—but we believe that he's disoriented because of the medication he takes in order to go to sleep. That's our best guess because this happens fairly often. The medication makes him fall asleep consistently, but some nights seem to be very hard on him.
I'm writing to you tonight because my husband Mike has mentioned that you and he don't see eye to eye on certain things, which is understandable, but he mentioned that you called him "selfish." Mike has many flaws along with many wonderful qualities; selfishness is not one of his flaws. Indeed, he is an extremely generous, selfless person. I would like help you, his supervisor, see what I see.
I understand that you have to make hundreds of decisions every day. While the decisions you make about scheduling and workloads often impact me directly, I understand that you have to make the best decisions based on many factors, and my family's health and happiness is only one of them.
Still, I want you to understand that when Mike advocates for his day to end as soon as he can make it end, he isn't just advocating for himself. He's advocating for me, because it's very difficult for one adult to cook and serve a meal to two non-verbal children, one of whom hates to sit down for a meal. He's advocating for his son, who gets anxious when his father gets home late, even though the only way he can express his anxiety is with screaming or hitting. He's advocating for his daughter, who adores playing with her father, and who sometimes gets sidelined when her brother's needs take too much of one parent's attention.
My son has stopped screaming now. It's 10:15 PM and it's finally quiet. We'll be heading to bed soon so that Mike can be up and ready to give his best to his job, as he does every day, before he comes home to give what's left to his family.
I don't expect this letter to change your decisions as a supervisor, but I hope that it will help you understand why you sometimes get pushback from Mike. He's not being selfish—he's just trying to give his family what we need.
As I write this letter at 10 PM, my son is screaming. He's making wordless, tortured sounds like a wounded animal. We don't know what is wrong—he can't tell us—but we believe that he's disoriented because of the medication he takes in order to go to sleep. That's our best guess because this happens fairly often. The medication makes him fall asleep consistently, but some nights seem to be very hard on him.
I'm writing to you tonight because my husband Mike has mentioned that you and he don't see eye to eye on certain things, which is understandable, but he mentioned that you called him "selfish." Mike has many flaws along with many wonderful qualities; selfishness is not one of his flaws. Indeed, he is an extremely generous, selfless person. I would like help you, his supervisor, see what I see.
I understand that you have to make hundreds of decisions every day. While the decisions you make about scheduling and workloads often impact me directly, I understand that you have to make the best decisions based on many factors, and my family's health and happiness is only one of them.
Still, I want you to understand that when Mike advocates for his day to end as soon as he can make it end, he isn't just advocating for himself. He's advocating for me, because it's very difficult for one adult to cook and serve a meal to two non-verbal children, one of whom hates to sit down for a meal. He's advocating for his son, who gets anxious when his father gets home late, even though the only way he can express his anxiety is with screaming or hitting. He's advocating for his daughter, who adores playing with her father, and who sometimes gets sidelined when her brother's needs take too much of one parent's attention.
My son has stopped screaming now. It's 10:15 PM and it's finally quiet. We'll be heading to bed soon so that Mike can be up and ready to give his best to his job, as he does every day, before he comes home to give what's left to his family.
I don't expect this letter to change your decisions as a supervisor, but I hope that it will help you understand why you sometimes get pushback from Mike. He's not being selfish—he's just trying to give his family what we need.
Thursday, July 21, 2011
How dare they?
This article, Dressing down for GQ - BostonHerald.com, contains the details about a highly offensive language in a web article posted at GQ.com. I went to see the article itself,here, and discovered that they had changed the offensive text, but there's no note and certainly no apology.
As one woman quoted in the Boston Herald put it, "How dare they?" How dare they say that someone with Down Syndrome is "ruined"? The rest of the GQ article is snarky, but no where else did they sink to the level of insulting people with intellectual disabilities. Of course, I must consider that they may have whitewashed other parts of the article as well.
As one woman quoted in the Boston Herald put it, "How dare they?" How dare they say that someone with Down Syndrome is "ruined"? The rest of the GQ article is snarky, but no where else did they sink to the level of insulting people with intellectual disabilities. Of course, I must consider that they may have whitewashed other parts of the article as well.
Wednesday, July 6, 2011
Lost Wanderer
Today I had one of the experiences every parent dreads--a lost child. I am beyond grateful that we found him safe and sound in less than 30 minutes.
Wilder is a wanderer. He would gladly roam on his own with no strings, minders, leashes, fences, or other restrictions, but because he lacks danger sense and doesn't have the verbal ability to say where he is going and when he will return, we can never give him that kind of freedom. Until he develops those essential skills, we keep his movements under constant limitation.
This morning we we waking up from a restless night spent at the MGM Grand in Las Vegas, Nevada. Each child had awakened at some point during the night, but we had managed to get each back to sleep. We had discovered that we needed to keep the deadbolt locked in the room because Wilder could slip out the door if it wasn't locked. So when I went out to get coffee, Red Bull, and milk, Mike locked the door behind me.
When I got back, I knocked at the door and Mike let me in. I passed Mike the Red Bull, poured milk for the kids, and sat down, waiting for my coffee to cool. I noticed that Wilder finished his milk; I noticed the Cassie was still working on hers. Neither of us noticed that we hadn't locked the door behind me.
I let my attention drift to the cartoon on the TV. I did not hear Wilder open the door and I did not hear the door close. I think three minutes passed before I noticed that I hadn't seen Wilder bouncing through the room. "Where's Wilder?" I said to Mike. After the ten seconds it took us to determine that the door wasn't locked and he wasn't in the bathroom or closet, Mike said, "He's out." We got our keys, leaving Cassie watching cartoons, and split up to search our hall.
The panic didn't hit me until I had searched down the hall as far as the vending machine. Past experience with hotels and motels had told me Wilder was attracted to vending and ice machines, and I thought he would head there. When I saw that the hall was empty, and I couldn't see him down the other hallways that led off the central hub, I realized that my son was out of my sight, and I had no idea which way he had gone.
I started hyperventalating as I approached our room. "I can't find him," I gasped to Mike. "You go call security," he said, still calm. "I'll keep looking." I called the security desk and explained the situation. I went to the door, propped it open with a chair, and sat down.
Within about two minutes two security personnel were at the door to talk to me. One of them left to check the stairwell.
About two minutes later, Mike came back. We explained that Wilder would not answer to his name, and the security officer who was still at our door relayed that information to the rest of her team.
About three minutes after that, she got a message, which she relayed to us: "We've got him. On camera, heading to the central core [the middle of the floor where the hallways meet and the elevators are located]." The security team was still searching, but they had made visual contact.
Two more minutes went by, and then the security officer got another message. She didn't stay to explain it to us, she just left.
To get my mind off what was going on, Mike told me to get Cassie and myself ready, so I started on that task. While Cassie and I were in the bathroom, the security officer came back and spoke to Mike, then they both left.
I think five more minutes passed. I'm not sure. Then I heard Mike's voice and Wilder's voice in the hallway, and I ran out to check. They were both coming up the hall. I had managed to not cry until that point, but as I ran the thirty feet to Wilder I started to sob. I hugged him, and when I pulled back to look at him, he gave me a goofy, befuddled grin, puzzled about why I was so upset.
Mike explained that the security officer had taken him up to the fifth floor, where the security team had caught up to Wilder. There was a team of five officers around him, one of them holding his hand, but he was totally unfazed. Apparently he had explored floors 10, 4, and 5, in that order, by calling the elevator and pressing the buttons for the floors he wanted to visit.
I have no thoughtful analysis to offer for this incident. All I can offer is a heartfelt thank you to the security staff at the MGM Grand.
Wilder is a wanderer. He would gladly roam on his own with no strings, minders, leashes, fences, or other restrictions, but because he lacks danger sense and doesn't have the verbal ability to say where he is going and when he will return, we can never give him that kind of freedom. Until he develops those essential skills, we keep his movements under constant limitation.
This morning we we waking up from a restless night spent at the MGM Grand in Las Vegas, Nevada. Each child had awakened at some point during the night, but we had managed to get each back to sleep. We had discovered that we needed to keep the deadbolt locked in the room because Wilder could slip out the door if it wasn't locked. So when I went out to get coffee, Red Bull, and milk, Mike locked the door behind me.
When I got back, I knocked at the door and Mike let me in. I passed Mike the Red Bull, poured milk for the kids, and sat down, waiting for my coffee to cool. I noticed that Wilder finished his milk; I noticed the Cassie was still working on hers. Neither of us noticed that we hadn't locked the door behind me.
I let my attention drift to the cartoon on the TV. I did not hear Wilder open the door and I did not hear the door close. I think three minutes passed before I noticed that I hadn't seen Wilder bouncing through the room. "Where's Wilder?" I said to Mike. After the ten seconds it took us to determine that the door wasn't locked and he wasn't in the bathroom or closet, Mike said, "He's out." We got our keys, leaving Cassie watching cartoons, and split up to search our hall.
The panic didn't hit me until I had searched down the hall as far as the vending machine. Past experience with hotels and motels had told me Wilder was attracted to vending and ice machines, and I thought he would head there. When I saw that the hall was empty, and I couldn't see him down the other hallways that led off the central hub, I realized that my son was out of my sight, and I had no idea which way he had gone.
I started hyperventalating as I approached our room. "I can't find him," I gasped to Mike. "You go call security," he said, still calm. "I'll keep looking." I called the security desk and explained the situation. I went to the door, propped it open with a chair, and sat down.
Within about two minutes two security personnel were at the door to talk to me. One of them left to check the stairwell.
About two minutes later, Mike came back. We explained that Wilder would not answer to his name, and the security officer who was still at our door relayed that information to the rest of her team.
About three minutes after that, she got a message, which she relayed to us: "We've got him. On camera, heading to the central core [the middle of the floor where the hallways meet and the elevators are located]." The security team was still searching, but they had made visual contact.
Two more minutes went by, and then the security officer got another message. She didn't stay to explain it to us, she just left.
To get my mind off what was going on, Mike told me to get Cassie and myself ready, so I started on that task. While Cassie and I were in the bathroom, the security officer came back and spoke to Mike, then they both left.
I think five more minutes passed. I'm not sure. Then I heard Mike's voice and Wilder's voice in the hallway, and I ran out to check. They were both coming up the hall. I had managed to not cry until that point, but as I ran the thirty feet to Wilder I started to sob. I hugged him, and when I pulled back to look at him, he gave me a goofy, befuddled grin, puzzled about why I was so upset.
Mike explained that the security officer had taken him up to the fifth floor, where the security team had caught up to Wilder. There was a team of five officers around him, one of them holding his hand, but he was totally unfazed. Apparently he had explored floors 10, 4, and 5, in that order, by calling the elevator and pressing the buttons for the floors he wanted to visit.
I have no thoughtful analysis to offer for this incident. All I can offer is a heartfelt thank you to the security staff at the MGM Grand.
Thursday, April 28, 2011
The ones who can't tell
[Spoiler alert]
I just finished reading The Girl with the Dragon Tattoo by Stieg Larsson. I won't go into detail; the spoiler I'm going to share is that the protagonist, a middle-aged male writer, makes the mental observation about the title character, "Asperger's syndrome...or something like that. A talent for seeing patterns and understanding abstract reasoning where other people perceive only white noise." He reaches this conclusion after discovering that the girl, Lisbeth, has an eidetic memory and can almost immediately figure out any mechanical or technical system. A person with a lot of knowledge about ASDs can see a lot of typically ASD characteristics in Lisbeth's character, although she has other characteristics that contradict ASD symptoms. But since she's a fictional character, it's not really worth splitting hairs.
The thing on my mind this morning is another defining element of Lisbeth's character: she is the victim of horrific sexual abuse propogated by men in positions of direct legal power over her. And she does not report the crimes these men commit. Any humane reader will be disturbed by the situations, and the scenes in the book are brutal.
But I am additionally disturbed by the novel because I worry about my children, who cannot speak for themselves, falling prey to people like that, and the older they get, the more I worry. Even though I have total confidence in the people caring for them now, I won't always be able to control things. This local story, which was uncovered recently, really got under my skin, and I've been worrying more ever since I read it.
I wish I had an upbeat note with which to end this post, but I don't.
I just finished reading The Girl with the Dragon Tattoo by Stieg Larsson. I won't go into detail; the spoiler I'm going to share is that the protagonist, a middle-aged male writer, makes the mental observation about the title character, "Asperger's syndrome...or something like that. A talent for seeing patterns and understanding abstract reasoning where other people perceive only white noise." He reaches this conclusion after discovering that the girl, Lisbeth, has an eidetic memory and can almost immediately figure out any mechanical or technical system. A person with a lot of knowledge about ASDs can see a lot of typically ASD characteristics in Lisbeth's character, although she has other characteristics that contradict ASD symptoms. But since she's a fictional character, it's not really worth splitting hairs.
The thing on my mind this morning is another defining element of Lisbeth's character: she is the victim of horrific sexual abuse propogated by men in positions of direct legal power over her. And she does not report the crimes these men commit. Any humane reader will be disturbed by the situations, and the scenes in the book are brutal.
But I am additionally disturbed by the novel because I worry about my children, who cannot speak for themselves, falling prey to people like that, and the older they get, the more I worry. Even though I have total confidence in the people caring for them now, I won't always be able to control things. This local story, which was uncovered recently, really got under my skin, and I've been worrying more ever since I read it.
I wish I had an upbeat note with which to end this post, but I don't.
Friday, April 22, 2011
Life is funny
A few hours ago I had one of the worst experiences of my life, hands down. It's a nice day out today, so the kids were playing outside, and H. was taking his pull-up off as often as he could. Having gone through this before, I knew that eventually I would come outside to find him without pants and with feces all over his butt because he had defecated in his pull-up and then taken it off. And soon enough that's exactly what happened.
Usually, after I find the poop-filled discarded diaper, I lay H. down and clean off his butt with wipes, or attempt to clean him off while he is standing. And even when he's feeling silly and giggly, he allows me to clean him up.
Not today.
Today we had a knock-down drag-out wrestling match to get him to lay down in the grass so that I could clean his butt. I tried to sit on his torso to keep him still, a tactic I have used before, but today he wrenched himself loose several times. Eventually--and I don't know how else to put it--I had to attack him, throw him to the ground, and straddle him so that I could do something I do every day. Wipe shit off his ass.
Of course, he was terrified and screaming by the time we were finished. I told him, "I'm sorry that I scared you. And I'm sorry that I pushed you down and sat on you." After a pause, I said. "But I'm not sorry that I cleaned your bottom." He was OK after a few minutes and let me help him into a clean pull-up.
I went inside and changed my pants, because I was pretty sure I had gotten crap on them. I washed up, took some deep breaths, and decided we would run some errands that involved a lot of driving and not a lot of getting in and out of the car.
Once we got home, all of us were feeling a lot more calm. As I sat on the deck watching the kids, I thought to myself, "I would say I feel exhausted, but I feel like I have exhausted exhausted." Then I remembered the conversation Mike and I had last night after another insane dinner. "We handle this incredibly well," he said, and I agreed.
Just then I looked down at my foot, and I noticed this:
Yes, that's a big smear of shit on my ankle. I'd been walking around with it for hours. And that proves my point. It's also proves that life is funny.
Usually, after I find the poop-filled discarded diaper, I lay H. down and clean off his butt with wipes, or attempt to clean him off while he is standing. And even when he's feeling silly and giggly, he allows me to clean him up.
Not today.
Today we had a knock-down drag-out wrestling match to get him to lay down in the grass so that I could clean his butt. I tried to sit on his torso to keep him still, a tactic I have used before, but today he wrenched himself loose several times. Eventually--and I don't know how else to put it--I had to attack him, throw him to the ground, and straddle him so that I could do something I do every day. Wipe shit off his ass.
Of course, he was terrified and screaming by the time we were finished. I told him, "I'm sorry that I scared you. And I'm sorry that I pushed you down and sat on you." After a pause, I said. "But I'm not sorry that I cleaned your bottom." He was OK after a few minutes and let me help him into a clean pull-up.
I went inside and changed my pants, because I was pretty sure I had gotten crap on them. I washed up, took some deep breaths, and decided we would run some errands that involved a lot of driving and not a lot of getting in and out of the car.
Once we got home, all of us were feeling a lot more calm. As I sat on the deck watching the kids, I thought to myself, "I would say I feel exhausted, but I feel like I have exhausted exhausted." Then I remembered the conversation Mike and I had last night after another insane dinner. "We handle this incredibly well," he said, and I agreed.
Just then I looked down at my foot, and I noticed this:
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