Tonight marks the first night of a weekend away with my muse courtesy of P.
With E so recently out of the hospital, I've been reluctant to take advantage of his Christmas present. But somewhere around midweek, I began warming to the idea.
A constellation of events came together this week to help change my mind. E continued to improve as the week wore on. Yesterday her neurologist set in motion the beginnings of a workable care plan. Today E made it through her first day back at school since being discharged a week ago Thursday. What's more, my cell didn't ring once with a call from the nurse's office to come get her early, not in the middle of Jazzercise, nor while catching up on email.
So...today I began packing. Mini Dell, power cords, Kindle, note cards, reading material, colored pencils, markers. I've packed anything and everything I think I'll need in order to coax my muse from the place she retreated when all heck broke loose. I'm hoping that with enough uninterrupted time together she (and I) will dare risk getting excited about M&R again.
As I type, I'm printing off M&R Nano, the book I wrote in November for National Novel Writer's Month. My plan is to read it in one sitting then cut out my favorite scenes and literally lay them out on the floor of the hotel room in story order. From there, I'll identify scenes I love, and holes to fill (or back fill) as needed. Then to start writing.
Looking forward to an uninterrupted night's sleep (in which I don't need to listen to the baby monitor in case E needs something), ordering in breakfast, and setting to work. Then, if the weather's good, I hope to break for lunch and scout out the Bean and/or the Art Institute, both of which are walking distance from where I'll be staying.
Then back for round two. And, hopefully, when I return, my characters will meet me at the door.
Friday, February 12, 2010
Wednesday, February 10, 2010
Report from the Trenches
In full battle gear these days, not by my own choosing. Last week we found ourselves in the hospital at E's bedside.
The saga began a week ago last Monday when E's aide called to say that E had fallen asleep at her desk soon after arriving at school. By the time I arrived at school, she'd fallen asleep again, this time at her scooter while waiting for the elevator to come. Even more worrisome, as she drove up to meet me at the main doors, she could barely stay awake, let alone carry on a conversation.
It hurt to open her eyes, she said. Everything was blurry and the light hurt. This isn't right, I remember saying. Something is very wrong.
I left the scooter at school, carried E to the parking lot (thanking God she's a little person), and called Children's from the car.
E didn't wait long in the ER, not with a history of aneuryms and symptoms like extreme, sudden-onset fatigue and blurry vision. The folks at the hospital moved quickly, admitting E and running a battery of tests to help understand what was going on.
The good news is E's home. The bad news is we find ourselves living in an unnerving in between place. We know what the episode wasn't, but we're not yet certain what it was, and we don't yet know what this all means for the long term. Tomorrow we meet with the first of what feels like a million doctors who, over the next couple weeks, will help us put this puzzle together.
Writing wise, I didn't have the time or energy to work on M&R during this latest saga, although I brought my mini Dell with me each day hoping I'd find the time to do so. For what it's worth, I did manage to keep a journal. Writing in it by hand the old-fashioned way seemed to work best.
Reviewing it now, I realize how much I'd forgotten about the last time we were in the hospital for days at a time. After each big ass test, the not knowing was the worst, because at least with the knowing, you can begin to assess and acknowledge the road you will be traveling on next.
And then there were the other details, the alarms and smells--some antiseptic, some not, and the haunted faces of the parents who passed me by in the hallways. After a while I got to know their faces, and after a while I realized that I probably looked as tired and stretched as they did.
We're returning to normal now, if you can call the place where we're at normal. E is getting stronger each day, able to stay up longer before she needs a nap. I'm slowly digging out of piles that grew while we were gone. What seems to be working best lately is to let the big A To-Dos prioritize themselves.
Yesterday, the big To-Do was an IEP for S where we talked high school and Freshman classes. Not a trivial meeting this one. I'd love to say we felt fully informed about the choices we were making for her. We didn't. A number of items that came up during the meeting remain open issues as far as I'm concerned, and they're on my list to pursue as soon as today's big To-Do is past.
Today the big to-do is my teen writers workshop. The topic: Characters You Love (and Love to Hate). I'm looking forward to tonight for several reason. The first is that I will be joined by long-time friend and writer extraordinaire Jenn Knoblock. The second is that in the past I've left my workshops feeling invigorated and inspired.
Toes and fingers crossed that tonight is no exception to the rule because my muse can really use the boost.
The saga began a week ago last Monday when E's aide called to say that E had fallen asleep at her desk soon after arriving at school. By the time I arrived at school, she'd fallen asleep again, this time at her scooter while waiting for the elevator to come. Even more worrisome, as she drove up to meet me at the main doors, she could barely stay awake, let alone carry on a conversation.
It hurt to open her eyes, she said. Everything was blurry and the light hurt. This isn't right, I remember saying. Something is very wrong.
I left the scooter at school, carried E to the parking lot (thanking God she's a little person), and called Children's from the car.
E didn't wait long in the ER, not with a history of aneuryms and symptoms like extreme, sudden-onset fatigue and blurry vision. The folks at the hospital moved quickly, admitting E and running a battery of tests to help understand what was going on.
The good news is E's home. The bad news is we find ourselves living in an unnerving in between place. We know what the episode wasn't, but we're not yet certain what it was, and we don't yet know what this all means for the long term. Tomorrow we meet with the first of what feels like a million doctors who, over the next couple weeks, will help us put this puzzle together.
Writing wise, I didn't have the time or energy to work on M&R during this latest saga, although I brought my mini Dell with me each day hoping I'd find the time to do so. For what it's worth, I did manage to keep a journal. Writing in it by hand the old-fashioned way seemed to work best.
Reviewing it now, I realize how much I'd forgotten about the last time we were in the hospital for days at a time. After each big ass test, the not knowing was the worst, because at least with the knowing, you can begin to assess and acknowledge the road you will be traveling on next.
And then there were the other details, the alarms and smells--some antiseptic, some not, and the haunted faces of the parents who passed me by in the hallways. After a while I got to know their faces, and after a while I realized that I probably looked as tired and stretched as they did.
We're returning to normal now, if you can call the place where we're at normal. E is getting stronger each day, able to stay up longer before she needs a nap. I'm slowly digging out of piles that grew while we were gone. What seems to be working best lately is to let the big A To-Dos prioritize themselves.
Yesterday, the big To-Do was an IEP for S where we talked high school and Freshman classes. Not a trivial meeting this one. I'd love to say we felt fully informed about the choices we were making for her. We didn't. A number of items that came up during the meeting remain open issues as far as I'm concerned, and they're on my list to pursue as soon as today's big To-Do is past.
Today the big to-do is my teen writers workshop. The topic: Characters You Love (and Love to Hate). I'm looking forward to tonight for several reason. The first is that I will be joined by long-time friend and writer extraordinaire Jenn Knoblock. The second is that in the past I've left my workshops feeling invigorated and inspired.
Toes and fingers crossed that tonight is no exception to the rule because my muse can really use the boost.
Monday, January 25, 2010
Straddling Two Worlds
I'm straddling two worlds. One is Chester's Mill, Stephen King's fictional town from his most recent book Under the Dome, the other is reality. Less than 200 pages left, the plot threads are coming together, the town evil doers are finally getting their due. But our heroes are still in peril, and all I want to do is ignore homework, dinner and bedtime so I can finish.
Friday, January 22, 2010
Writer Mom Rant--Advocacy, Armor, and Other Reasons I Need a Good Blacksmith
As the writer mom of three active girls, two with special needs, I wear many hats. Lately, the hat I've been wearing most is the advocacy one, not out of choice but out of necessity.
To be honest, the little number is less hat and more helm. And I've donned it for so many encounters in recent months that it's in serious need of repair.
I used to think I didn't need to wear my advocacy armor when dealing with our girls' IEPs. I used to trust the system to do what was appropriate and meaningful for my children educationally. Then E got well enough for us to escape our bunker mentality, and I found the uninterrupted time to examine our girls' IEPs for substance, progress, and accountability.
You know that old adage that says agreements aren't always worth the paper they're written on? There's truth in those words. After reviewing our files, I realized I've got years worth of IEPs to prove it.
That's not to say that all of our IEPs have been ineffective. There are a few glimmers here and there. But thinking about them now, I can admit how innocent--and uninformed--I was about the process.
I wish I had known then what I know now. I wish someone in the know had taken the time to pull me aside all those years ago, and forced me to listen to the hard truth about having a kid in the system. Now older and more informed, I've commiserated with enough parents of kids with special needs to know the drill, hear the stories, and, unfortunately, experience many of the system's flaws first hand.
What do I wish someone had told me coming up through the ranks? Raising kids with special needs is hard work. It's stressful, exhausting and time consuming. If you're lucky enough to find free time outside of parenting your son or daughter, the last thing you want to do is bird dog your child's school. But you can't leave things to chance. If you have a child with special needs, you have to learn the law. You have to learn what it is you don't know. Don't assume the school is going to tell you what you don't know. If they do, they're the exception to the rule.
And then there are the really big revelations, the ones that kick your feet right out from under you.
One contact's chilling inside view of the system: "I'm not just the parent of a special ed kid. I was a teacher once. I was told by administrators not to offer services even if they were in the child's best interest. I was told not to follow IEPs. You have to be involved. If you don't ask, if you don't know the law well enough to know what you don't know, it won't happen, even if it's appropriate for your child."
Why the rant? The big IEP for S happened last week. While E and I were in Detroit meeting with specialists about her latest health issues, P sat at the IEP table advocating for S.
The concern? In addition to on-going speech issues, S continues to struggle with the ability to read to learn. It's become so problematic that we spent the last 6 months collecting and tracking data to back up the fact.
We came to the table asking for an intensive program to help close the gap between S and her peers. This isn't the first time we made the request. We were prepared to go to mediation if the team didn't respond. We'd even scheduled mediation through the state for a week later if we needed it. We've never been pushed this far, but with S about to enter high school, the stakes are too high.
The team proposed a solution. There's enough potential in it that a six-week trial made sense. Progress will be monitored and reported the first week of March. The team will evaluate whether or not to continue the program at that point.
Sounds good on paper, doesn't it? Sounds like we're all finally on the same page. Unfortunately, the first week of the trial ends today, and as of the end of the school day yesterday, the computer my daughter needs in order to begin the trial wasn't yet in her hands.
Had I not asked questions about status earlier in the week, I would never have known this little detail. Hence the dents in my helm.
Counting the days until my February writer's retreat. Oh, and before I forget, anyone know a good blacksmith?
edited: 1:01 p.m.
To be honest, the little number is less hat and more helm. And I've donned it for so many encounters in recent months that it's in serious need of repair.
I used to think I didn't need to wear my advocacy armor when dealing with our girls' IEPs. I used to trust the system to do what was appropriate and meaningful for my children educationally. Then E got well enough for us to escape our bunker mentality, and I found the uninterrupted time to examine our girls' IEPs for substance, progress, and accountability.
You know that old adage that says agreements aren't always worth the paper they're written on? There's truth in those words. After reviewing our files, I realized I've got years worth of IEPs to prove it.
That's not to say that all of our IEPs have been ineffective. There are a few glimmers here and there. But thinking about them now, I can admit how innocent--and uninformed--I was about the process.
I wish I had known then what I know now. I wish someone in the know had taken the time to pull me aside all those years ago, and forced me to listen to the hard truth about having a kid in the system. Now older and more informed, I've commiserated with enough parents of kids with special needs to know the drill, hear the stories, and, unfortunately, experience many of the system's flaws first hand.
What do I wish someone had told me coming up through the ranks? Raising kids with special needs is hard work. It's stressful, exhausting and time consuming. If you're lucky enough to find free time outside of parenting your son or daughter, the last thing you want to do is bird dog your child's school. But you can't leave things to chance. If you have a child with special needs, you have to learn the law. You have to learn what it is you don't know. Don't assume the school is going to tell you what you don't know. If they do, they're the exception to the rule.
And then there are the really big revelations, the ones that kick your feet right out from under you.
One contact's chilling inside view of the system: "I'm not just the parent of a special ed kid. I was a teacher once. I was told by administrators not to offer services even if they were in the child's best interest. I was told not to follow IEPs. You have to be involved. If you don't ask, if you don't know the law well enough to know what you don't know, it won't happen, even if it's appropriate for your child."
Why the rant? The big IEP for S happened last week. While E and I were in Detroit meeting with specialists about her latest health issues, P sat at the IEP table advocating for S.
The concern? In addition to on-going speech issues, S continues to struggle with the ability to read to learn. It's become so problematic that we spent the last 6 months collecting and tracking data to back up the fact.
We came to the table asking for an intensive program to help close the gap between S and her peers. This isn't the first time we made the request. We were prepared to go to mediation if the team didn't respond. We'd even scheduled mediation through the state for a week later if we needed it. We've never been pushed this far, but with S about to enter high school, the stakes are too high.
The team proposed a solution. There's enough potential in it that a six-week trial made sense. Progress will be monitored and reported the first week of March. The team will evaluate whether or not to continue the program at that point.
Sounds good on paper, doesn't it? Sounds like we're all finally on the same page. Unfortunately, the first week of the trial ends today, and as of the end of the school day yesterday, the computer my daughter needs in order to begin the trial wasn't yet in her hands.
Had I not asked questions about status earlier in the week, I would never have known this little detail. Hence the dents in my helm.
Counting the days until my February writer's retreat. Oh, and before I forget, anyone know a good blacksmith?
edited: 1:01 p.m.
Thursday, January 14, 2010
Back from Detroit
We returned from Detroit yesterday afternoon. The trip was a whirlwind, but worth it. Monday we drove out and stayed at Ronald McDonald House. Tuesday we met Dr. R, who is known in the Little People community for his experience with primordial dwarfs and their dental issues. We also met with Dr. S, who will likely tag team with Dr. R.
One of the first things Dr. R did after examining E was put us at ease. What he saw, he said, is consistent with what he's seen with other kids like E. Yes, she needs work, he said. A new set of teeth, in fact. But we have room to breathe. Enough time to do it right. We left with a plan. By summer this should be behind us. I wore my book around my neck the entire time. It reminded me of who I am outside of being a mom and caregiver.
More later after I have a chance to decompress.
One of the first things Dr. R did after examining E was put us at ease. What he saw, he said, is consistent with what he's seen with other kids like E. Yes, she needs work, he said. A new set of teeth, in fact. But we have room to breathe. Enough time to do it right. We left with a plan. By summer this should be behind us. I wore my book around my neck the entire time. It reminded me of who I am outside of being a mom and caregiver.
More later after I have a chance to decompress.
Sunday, January 10, 2010
Bringing my book with me
It's all still a bit surreal that this all is happening. But as long as the cold/cough E has been nursing continues to improve, we plan to head out to Detroit tomorrow. We're targeting a noon departure and with good weather and luck should roll into town with enough time to check in to Ronald McDonald House, decompress, grab dinner and crawl into bed at a decent hour.
I've downloaded M&R to my memory stick and I'm planning to wear my book around my neck. I don't know whether or not I'll have the time or brain cells left to work on revisions, but I have to try. No, delete that. Quoting a well-known sage: Do...or do not. There is no try.
Do not is not an option. I have to write. Even if it's only a couple of pages. Or a paragraph. Or a snippet or two of dialog. Even if it's all drivvle, I have to write something each day. If I don't, then I will have given up. I refuse to give up.
I've downloaded M&R to my memory stick and I'm planning to wear my book around my neck. I don't know whether or not I'll have the time or brain cells left to work on revisions, but I have to try. No, delete that. Quoting a well-known sage: Do...or do not. There is no try.
Do not is not an option. I have to write. Even if it's only a couple of pages. Or a paragraph. Or a snippet or two of dialog. Even if it's all drivvle, I have to write something each day. If I don't, then I will have given up. I refuse to give up.
Thursday, January 07, 2010
An Unexpected Journey...by way of Detroit
The last of my children returns to school next week. Christmas break will be officially over, and my schedule will be my own again. I'm looking forward to the luxury of getting down and dirty with my revisions to M&R. It's also the week of THE IEP, in which P & I will hear results of the latest evaluations that were done on S, and chat with the team about the appropriateness of the current educational program. Unfortunately, it looks as if that's not how the scenario will actually play out.
Something's come up for E healthwise. This means my revisions are on hold and P will be on his own with the school while I'm on point with E, seeing her through the first leg of her latest journey.
This time it's E's teeth. We've known for a long time that loose teeth are a hallmark of primordial dwarfism and that eventually they'd need attention. We just didn't expect we'd have to mobilize this quickly. Even her pediatric dentist was surprised by how rapidly things have changed.
Early next week, E & I head to Detroit to meet with Dr. R, a prostodontist who specializes in working with kids with E's type of dwarfism. He is the only specialist of his type in the country who does so. Thankfully, he's within driving distance. We're looking at a 4 1/2 hour drive if the snow belt is clear. Not a lot of answers yet at this point. Hopefully by this time next week, we'll know more.
Something's come up for E healthwise. This means my revisions are on hold and P will be on his own with the school while I'm on point with E, seeing her through the first leg of her latest journey.
This time it's E's teeth. We've known for a long time that loose teeth are a hallmark of primordial dwarfism and that eventually they'd need attention. We just didn't expect we'd have to mobilize this quickly. Even her pediatric dentist was surprised by how rapidly things have changed.
Early next week, E & I head to Detroit to meet with Dr. R, a prostodontist who specializes in working with kids with E's type of dwarfism. He is the only specialist of his type in the country who does so. Thankfully, he's within driving distance. We're looking at a 4 1/2 hour drive if the snow belt is clear. Not a lot of answers yet at this point. Hopefully by this time next week, we'll know more.
Subscribe to:
Posts (Atom)
Posts
