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.

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.

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.

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.

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.

Loose Ends, Pantsers, and Communing with My Characters

Wow. Time has flown since I last posted; so, I'll just dive in and see where it takes me. Fellow writers in one of the groups I attend monthly call the diving in kind of approach being a "pantser." It's a short-hand way of saying one writes (or works) by the seat of his/her pants. Suits my style right about now, and has rarely led me astray.

Wrapping up some loose ends:
The article I was on deadline for in November can be found on newsstands in the latest issue of Family Time magazine. It's about the top five causes of teen deaths. It's a heavy topic but the article offers encouraging advice for parents.

On deck this week while wearing my writer mom hat:

1. Posting my crit of T's manuscript (which is fabulous as always) to our online critique group.

2. Posting my latest installment of M&R for critique by the end of the day Thursday. The challenge in getting it done in time will be deciding what to send. Thanks to NaNoWriMo, I now have a completed manuscript. But I haven't worked on the story since early December, and I'm afraid it's rather rough in the NaNoWriMo kind of way. Still, there could be worse issues...like not having anything to work with. Looking forward to getting down and dirty and communing with my characters. One child returned to school this week. One returns next Monday. Keeping my notebook close, and stealing writing time where I can find it.