I will keep this one short and sweet to give just a glimpse into Rowen's life of trains.
We took Rowen to a train show Sunday and I think it was as close to Heaven as it gets for him. Like a magnet, he got sucked into a particular model train set-up and followed it 'round and 'round in awe. He was in good company- dozens of other little boys as well as gray-haired men all with a twinkle in their eye knowing they were home sweet home.
It was a long time coming for Rowen, as he had it marked on his calendar in advance to count down the days. It was also a difficult road getting there, as Brenner tried taking him on his own the day before only to have Rowen throw up on the floor just as they entered the pearly gates. And then again in a bush outside. Poor Rowen. And poor, poor Brenner. I guess the second time was the charm, because Rowen was in much better spirits to see his beloved trains the next day.
Here is a song that reminds me of Rowen and his insatiable love for trains. It's a nod to the kid inside every one of us- boy, girl, gray-haired or not. I love how this captures Rowen's heart in a moment of childlike wonder. Maybe take a moment to relax and enjoy. It often takes a kid to bring us back, but we always know it's there. Thank goodness it never goes away. Rowen has taught me that.
Tuesday, January 22, 2013
Tuesday, January 15, 2013
I'm So Dizzy My Head is Spinnin'
I'm feeling the urge to cry, so maybe I will do a little blogging therapy. My head is spinning. It's spinning at mach speed of a thousand different Rowens and the same amount of possibilities of a cure.
We weaned him off Strattera (an ADHD medicine) not 2 days ago and I already see the effects. We took him off because it wasn't quite the right drug for all his needs, but heck if it didn't help more than I thought it did for his hyperactivity.
I really wish it was easier than that though. Take drug=better. Don't take drug=not better. If only A+B equaled C. Where is algebra when I really need it? Forget second period 9th grade, I need it now!
A week before we started weaning the drug, Rowen stopped going to sleep at night. Boy if I didn't feel like I was human again when he'd just lay down and go to sleep every night for awhile there. What a friggin' concept. Now he lays down and days I thought were long past are back for an encore. So glad to see you again, she said with bitter sarcasm. He takes at least 2 hours to go to sleep again. How in the heck does this happen? He was fine for a few months and now we are back. Mind you, this started happening all before we weaned him from the drug.
I have to laugh at the inventories I have to fill out at the OSU study he's in. They ask me to rate Rowen on a myriad of things every time I'm there, and darned if Rowen doesn't change every second of every day to know what the heck box to check off.
Does he act as if driven by a motor? Um, do you mean last Thursday or 4:00 today? Is he more active than usual? Um, again, not sure there's a usual. In fact, darn sure there's not. Sorry, can't help you.
I've watched Rowen quite a bit today, and he absolutely cannot stand, sit, or otherwise do anything without moving, fidgeting, or plain old running into everything he can. He's been more irritable, harsh, and, well, autistic. I haven't seen him cover his ears at noise in awhile and that has come back too. His social backwardness is even more painful to watch. He says he wants to kill himself with tears in his eyes, and I know he's suffering like no child should. I look back on the past few months with nostalgia now, even though at the time it was still as difficult as it could get- or so I thought.
If you are prone to judgement, you may not want to read further, because I may have something that will set you off. I wish Rowen had some other disease. If I was really wishing of course, I'd wish him healthy. But if I had to pick, it would not be autism. It would be something we could actually take a go at. I wish he had some disease that we knew how to manage, but that's not the case. Or if it has to be autism, I wish we lived 50 years in the future when I hope there would be more answers than guesses. I want to pulverize that friggin' autism puzzle piece in the ground, soak it with lighter fluid, and watch it burn. And when the embers die down and all that's left is ash, I hope there are answers.
Someone tell me how to help my boy. Somebody. Anybody. Because I don't think anyone really knows right now. In fact, I know so. Everyone is guessing and some people are blindly hitting a mark that may hold promise, while others are still suffering. Autism sucks. It sucks, sucks, sucks.
Whew, I need something chocolate.
*Special Note: After I blogged, I went in to help Rowen who was upset he couldn't fall asleep. After he calmed down and I left he said, "Mommy, come here! I sounded out a sentence!" When I walked in, he pointed to a cross on his wall and said, "Mommy, it says 'He is Risen.'" Tears came to my eyes. Pretty darn good for a kid who's best spelling word is "like." Sounded it perfectly. He always knows when to send the right sign.
We weaned him off Strattera (an ADHD medicine) not 2 days ago and I already see the effects. We took him off because it wasn't quite the right drug for all his needs, but heck if it didn't help more than I thought it did for his hyperactivity.
I really wish it was easier than that though. Take drug=better. Don't take drug=not better. If only A+B equaled C. Where is algebra when I really need it? Forget second period 9th grade, I need it now!
A week before we started weaning the drug, Rowen stopped going to sleep at night. Boy if I didn't feel like I was human again when he'd just lay down and go to sleep every night for awhile there. What a friggin' concept. Now he lays down and days I thought were long past are back for an encore. So glad to see you again, she said with bitter sarcasm. He takes at least 2 hours to go to sleep again. How in the heck does this happen? He was fine for a few months and now we are back. Mind you, this started happening all before we weaned him from the drug.
I have to laugh at the inventories I have to fill out at the OSU study he's in. They ask me to rate Rowen on a myriad of things every time I'm there, and darned if Rowen doesn't change every second of every day to know what the heck box to check off.
Does he act as if driven by a motor? Um, do you mean last Thursday or 4:00 today? Is he more active than usual? Um, again, not sure there's a usual. In fact, darn sure there's not. Sorry, can't help you.
I've watched Rowen quite a bit today, and he absolutely cannot stand, sit, or otherwise do anything without moving, fidgeting, or plain old running into everything he can. He's been more irritable, harsh, and, well, autistic. I haven't seen him cover his ears at noise in awhile and that has come back too. His social backwardness is even more painful to watch. He says he wants to kill himself with tears in his eyes, and I know he's suffering like no child should. I look back on the past few months with nostalgia now, even though at the time it was still as difficult as it could get- or so I thought.
If you are prone to judgement, you may not want to read further, because I may have something that will set you off. I wish Rowen had some other disease. If I was really wishing of course, I'd wish him healthy. But if I had to pick, it would not be autism. It would be something we could actually take a go at. I wish he had some disease that we knew how to manage, but that's not the case. Or if it has to be autism, I wish we lived 50 years in the future when I hope there would be more answers than guesses. I want to pulverize that friggin' autism puzzle piece in the ground, soak it with lighter fluid, and watch it burn. And when the embers die down and all that's left is ash, I hope there are answers.
Someone tell me how to help my boy. Somebody. Anybody. Because I don't think anyone really knows right now. In fact, I know so. Everyone is guessing and some people are blindly hitting a mark that may hold promise, while others are still suffering. Autism sucks. It sucks, sucks, sucks.
Whew, I need something chocolate.
*Special Note: After I blogged, I went in to help Rowen who was upset he couldn't fall asleep. After he calmed down and I left he said, "Mommy, come here! I sounded out a sentence!" When I walked in, he pointed to a cross on his wall and said, "Mommy, it says 'He is Risen.'" Tears came to my eyes. Pretty darn good for a kid who's best spelling word is "like." Sounded it perfectly. He always knows when to send the right sign.
Thursday, January 10, 2013
Sixty Holes in Your Shoe
I picked up the novel The Curious Incident of the Dog in the Night-Time and got about four pages in before I made about 150 realizations about Rowen.
I can't even say I know much about the novel- again only four pages in here. What I do know is that the boy in the book is like my Rowen. His name is John Francis Boone and he knows all the countries of the world and their capitals and every prime number up to 7,057 but he can't tell a confused face from a surprised face on the person he is talking to.
Rowen has similarities to that in that he can tell you a lot about trains or his favorite movie, but when he is upset he can't figure out the other person's position to save his life. The autism monster sneaks up on him and clouds his vision to the point of complete ignorance as to how the other person feels. It's a constant reminder that I have to make to him... do you know that he/she feels ________ (you fill in the blank).
Rowen had just one incident yesterday that gives a quick reminder to John Francis Boone. He exploded over his baby brother wanting to play trains with him when he wanted to be alone. The list of awful things he said out of anger was frightening. And after he calmed down and heard my stern talking to- and disciplines, I gave him a hug when he told me he just can't hold it inside. I know it's hard for him and he hates himself for it. I have to remember that I am battling the monster within and not my child.
Which brings me to one of my realizations. It went through my mind that Rowen would grow up to someday say that no one understands him, not even his parents. How could I when I still try to fit him in a box stamped "normal" on the side? How could I when I often forget about the millions of stimuli cramming his brain when all I see is what everyone else does? John Francis Boone became upset and cupped his ears and rolled forward to shut everything out. It was the cool of the midnight grass that made him feel better. He may not have known what his friend was feeling, but he knew he smelled like soap and wore shoes that had 60 perfectly round holes in each.
I can understand this to the point of Rowen going off the deep end and me trying to bring him back. Problem is, I reel him in to my own understanding of normalcy- this is how we deal with our feelings- rather than putting myself on his level. It's like erasing 33 years of knowledge in my head just to understand my own kid for 5 seconds. I don't think I have to tell you that it is very, very hard.
I do believe there is a lot of utility in helping him work through his anger in a more productive way. I think that is where I most focus on him being "normal-" whatever that means. But if I am being honest with myself, I have to know that this thought stretches into other realms that I am not proud of. Sure I'd like to hit a baseball game with my son without the three-ring circus coming to town. I'm sure Brenner would love to toss a football or anything other than trains and wrestling (think: sensory), but I need to restamp that box from saying "normal" to saying "Rowen."
I'll be interested to get past page 4 and see how John Francis Boone does just that.
I can't even say I know much about the novel- again only four pages in here. What I do know is that the boy in the book is like my Rowen. His name is John Francis Boone and he knows all the countries of the world and their capitals and every prime number up to 7,057 but he can't tell a confused face from a surprised face on the person he is talking to.
Rowen has similarities to that in that he can tell you a lot about trains or his favorite movie, but when he is upset he can't figure out the other person's position to save his life. The autism monster sneaks up on him and clouds his vision to the point of complete ignorance as to how the other person feels. It's a constant reminder that I have to make to him... do you know that he/she feels ________ (you fill in the blank).
Rowen had just one incident yesterday that gives a quick reminder to John Francis Boone. He exploded over his baby brother wanting to play trains with him when he wanted to be alone. The list of awful things he said out of anger was frightening. And after he calmed down and heard my stern talking to- and disciplines, I gave him a hug when he told me he just can't hold it inside. I know it's hard for him and he hates himself for it. I have to remember that I am battling the monster within and not my child.
Which brings me to one of my realizations. It went through my mind that Rowen would grow up to someday say that no one understands him, not even his parents. How could I when I still try to fit him in a box stamped "normal" on the side? How could I when I often forget about the millions of stimuli cramming his brain when all I see is what everyone else does? John Francis Boone became upset and cupped his ears and rolled forward to shut everything out. It was the cool of the midnight grass that made him feel better. He may not have known what his friend was feeling, but he knew he smelled like soap and wore shoes that had 60 perfectly round holes in each.
I can understand this to the point of Rowen going off the deep end and me trying to bring him back. Problem is, I reel him in to my own understanding of normalcy- this is how we deal with our feelings- rather than putting myself on his level. It's like erasing 33 years of knowledge in my head just to understand my own kid for 5 seconds. I don't think I have to tell you that it is very, very hard.
I do believe there is a lot of utility in helping him work through his anger in a more productive way. I think that is where I most focus on him being "normal-" whatever that means. But if I am being honest with myself, I have to know that this thought stretches into other realms that I am not proud of. Sure I'd like to hit a baseball game with my son without the three-ring circus coming to town. I'm sure Brenner would love to toss a football or anything other than trains and wrestling (think: sensory), but I need to restamp that box from saying "normal" to saying "Rowen."
I'll be interested to get past page 4 and see how John Francis Boone does just that.
Tuesday, January 1, 2013
Happy New Year to Us
I suppose many of you can retell stories of New Year's Eve that hit one or two bullet points on your bucket list. Others might be able to describe the feeling of staying up past midnight to ring in a new year filled with newness and the possibility it inspires. Maybe some of you even caught a glimpse of the ball dropping as the clock struck 12.
I wouldn't know. I was asleep.
I'm sure many of you can also tell that tale. I don't see New Year's as much more than another day really, so I'm not exactly heartbroken that my 33-year-old self couldn't 't hack in 'till midnight. However, I felt a twinge of sadness as my husband and I were dozing off last night and trying to retell tales of New Year's Eve past to no avail. We couldn't even remember the last time we stayed up to see the new year arrive.
I texted my sister today to wish her a happy new year and to ask how they spent the evening. Out with friends, like most I suspect. I know I'm not the most social and conversational of all people, but mix that in with an autistic child, toss in an Ohio winter, and it's the perfect storm for cabin fever.
I told Brenner last night that I wished we had big, exciting plans for the holiday. Something that included me dressing up in more than sweats and my ever so sexy house slippers. Yeah, you know you're jealous. I laughed when he said "let's go out then!" It wasn't funny just because he was asking at 7 p.m. New Year's Eve with no babysitter in sight, but also because we probably wouldn't have even if we could. All dressed up (in sweats) and nowhere to go.
I've mentioned that Rowen is a shorts and t-shirt kind of guy. That means you will rarely catch a glimpse of this child outside all winter long. That's about 9 months in Ohio time. Can anyone say cabin fever? I don't blame him for not wanting to bundle up like Randy from A Christmas Story with arms flailing, but even on milder days he doesn't take kindly to the transition from shorts to pants. This equals out to a lot of days trying to stir up creativity to fight the urge to flip on the old tube... or flat screen as it is.
"Rowen, do you want to go _______?" You fill in the blank. The answer is no. Not that we still don't go out sometimes, we just know we have to handle a red-faced boy who doesn't want to be taken from him comfort zone.
So this is part of the reason we long for summer, and maybe someday a dream move down south that we've been plotting in our heads for years. Maybe someday. But for now, I need to get my creativity in motion and lure him away from watching (over and over) his favorite scenes from his favorite movies, a move he's made ever since I can remember. Rewind, play, rewind, play... rewind, play. I wish that when he hit play, it would make the literal jump to him climbing his tree or running the perimeter of the neighborhood as a train. At least we'd get something interesting happening (and maybe get some energy out!).
So happy new year to all of you. Here's to New Year's resolutions and a great start to what holds the promise of being another great year. I don't have a resolution myself (none that I will actually keep anyway), but I do have some wishes for a boy who could use a break from his struggles and the ability to play the day away rather than get lost in his frustration as well as his predictably safe world. For a boy who knows he's different, but wants the world to not see him as so. For a boy who needs to take his thumb off the rewind and play buttons because he doesn't need to see the train, again. Let's get this new year started.
I wouldn't know. I was asleep.
I'm sure many of you can also tell that tale. I don't see New Year's as much more than another day really, so I'm not exactly heartbroken that my 33-year-old self couldn't 't hack in 'till midnight. However, I felt a twinge of sadness as my husband and I were dozing off last night and trying to retell tales of New Year's Eve past to no avail. We couldn't even remember the last time we stayed up to see the new year arrive.
I texted my sister today to wish her a happy new year and to ask how they spent the evening. Out with friends, like most I suspect. I know I'm not the most social and conversational of all people, but mix that in with an autistic child, toss in an Ohio winter, and it's the perfect storm for cabin fever.
I told Brenner last night that I wished we had big, exciting plans for the holiday. Something that included me dressing up in more than sweats and my ever so sexy house slippers. Yeah, you know you're jealous. I laughed when he said "let's go out then!" It wasn't funny just because he was asking at 7 p.m. New Year's Eve with no babysitter in sight, but also because we probably wouldn't have even if we could. All dressed up (in sweats) and nowhere to go.
I've mentioned that Rowen is a shorts and t-shirt kind of guy. That means you will rarely catch a glimpse of this child outside all winter long. That's about 9 months in Ohio time. Can anyone say cabin fever? I don't blame him for not wanting to bundle up like Randy from A Christmas Story with arms flailing, but even on milder days he doesn't take kindly to the transition from shorts to pants. This equals out to a lot of days trying to stir up creativity to fight the urge to flip on the old tube... or flat screen as it is.
"Rowen, do you want to go _______?" You fill in the blank. The answer is no. Not that we still don't go out sometimes, we just know we have to handle a red-faced boy who doesn't want to be taken from him comfort zone.
So this is part of the reason we long for summer, and maybe someday a dream move down south that we've been plotting in our heads for years. Maybe someday. But for now, I need to get my creativity in motion and lure him away from watching (over and over) his favorite scenes from his favorite movies, a move he's made ever since I can remember. Rewind, play, rewind, play... rewind, play. I wish that when he hit play, it would make the literal jump to him climbing his tree or running the perimeter of the neighborhood as a train. At least we'd get something interesting happening (and maybe get some energy out!).
So happy new year to all of you. Here's to New Year's resolutions and a great start to what holds the promise of being another great year. I don't have a resolution myself (none that I will actually keep anyway), but I do have some wishes for a boy who could use a break from his struggles and the ability to play the day away rather than get lost in his frustration as well as his predictably safe world. For a boy who knows he's different, but wants the world to not see him as so. For a boy who needs to take his thumb off the rewind and play buttons because he doesn't need to see the train, again. Let's get this new year started.
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