It's a Date

Surgery is a definite for E. She's on the schedule for August 20th. Between now and then we need clearances from--and this is no lie--six different physicians. And I'm supposed to be sitting butt in chair for the hard work of writing when?

Deadlines, Doctors and Other Reasons My Desk is a Mess

On tap this week:

1. Deadlines inevitably create more piles on my already overly piled desk. Since I'm on deadline for another Family Time article (due in a couple of weeks) the piles are steadily growing. Fortunately for now I know where everything is (knocks on wood). The article I'm currently working on is about area dog parks, pros, cons, how-tos, etc. I finished the bulk of my research phase Monday, sought initial quotes from E's service dog trainer and friends with dogs, etc., and lined up sources for more in-depth interviews. Later this week, the fun part begins--play testing area parks with S, E, and E's service dog Jewel.

2. We leave for downtown Chicago tomorrow at 9 for our ortho consult. Since doctor's visits to Children's are rarely routine, I spent a good deal of this evening making lists and packing as if we'll be gone for the day (since inevitably we end up making a day of it.) The visit is a follow-up on based on one of the to-dos we received during our visit with the primordial dwarfism specialists out east at the end of May.

Long story short, both specialists recommended E have surgery to lengthen her heel cord and other areas on her left leg affected by her initial stroke. Since no surgery is routine with E, my initial reaction upon hearing the idea was a knee-jerk no. But as the doctors starting explaining why, I couldn't help but listen. The surgery is a short one, and the end result HUGE in terms of the mobility and independence E will gain from it.

We've since talked with E's key team members locally. All are in agreement that E would benefit from the procedure. So are the parents of E's friends who've undergone similar procedures.

We talked with E about it. When she heard that the end result of the surgery will likely mean regaining enough use of her leg to walk without her cane, she jumped at the chance to do it.

So, tomorrow we meet a surgeon who's been recommended for the job. At that point we'll talk risks, expectations, length of recovery, etc. I imagine we'll also talk timing. The ideal would be to do it before school begins. But we need to include E's wants in the equation, too. She wants to wait until after her youth mission trip to Appalachia at the end of the month. I can't blame her. She's been telling everyone she meets that she's looking forward to spending time with her dad. He's co-leader of the church youth group and on point that week with E.

East Coast Trip, Ronald McDonald House, and, Drum Roll, Writing

Checking in to report that the trip out East went well. E and I shared a suitcase and carried everything onto the plane. Keeping our gear to a minimum made navigating the airport and boarding the plane easier than I expected it to be. I imagine we made quite a sight as we puttered our way to and from the gates, E driving her scooter, Jewel trotting along E's left side, me lugging our gear on along her right.

We stayed at Ronald McDonald House during our visit to A.I. duPont Children's Hospital in Delaware. The house was close enough to the hospital that we walked to and from our appointments.

We can't say enough good things about our stay. The kitchens were well stocked (E loved this part), the staff friendly and knowledgeable, and the volunteers outstanding. It truly was a home away from home, and a much-needed break from the antiseptic hallways, bells and whistles of the hospital.

We met a lot of families while we were there, some in situations similar to ours, others wearing the glassy-eyed looks of parents under extreme stress. It brought me back to 2001 and the days post E's aneurysm rupture when our world tilted sideways, time crawled, and all that mattered was that E get better so we could go home.

Did you know that Ronald McDonald Houses pay for their utilities with pop tops? If you're looking for an easy way to make a difference, save those little tabs, and when you've got enough, drop them off at your local McDonald's. Take it from someone who knows, those little bits of aluminum do go a long way.

Writerly report: Keeping up with my online writer's group with T. Received positive feedback on my first M&R post with the group, and thoroughly enjoying the crits I've been doing. I continue to be amazed by how much the act of critiquing other people's work informs my own writing.

On deck: three Family Time articles, one due next week (aack!), the others due in July and August respectively.

Current read: Blood Noir by Laurell K. Hamilton.

Missing My Muse

Coaxing anything useful out my muse in recent weeks has been less than satisfying. It wasn't until P and I were chatting about it yesterday that I realized why.

"Give yourself a break," he said. "Of course you're having trouble. Have you thought about what you've got on your plate lately? It's high stakes stuff. I mean don't even think about all the IEP stuff we've had to deal with. The trip out East alone is more than the average family has to deal with."

Oh, yeah, I thought. When you put it that way, we have had a boat load of stress on our plates, and it's not over. Here's a taste of what we've been dealing with (and what's upcoming):

1. IEP meeting last week, along with all the prep that went into preparing for it.
2. Follow-up IEP meeting this coming Tuesday (to finish up last week's business which was a follow-up to an April meeting.)
3. Trip with E to the East Coast Wed.-Fri. for visits with specialists in E's type of dwarfism and the issues surrounding it.
4. IEP meeting two weeks later for S.

Hmmm. No wonder my muse is less than enthused when I ask her to come out and play.

Packing, Planning and Parades--One Writer's Life

You'd think the process of planning for next school year would be routine by now. After all, our two younger girls have had IEPs for years. How hard can it be?

Well, this year is different. Both girls are in different places educationally. S is entering her 8th grade year. E is finishing up as a sophomore and looking forward to post secondary life. And P & I are in a different place, too. This year, for the first time in what feels like forever, E has been healthy enough (knock on wood) that I've been able to drop out of emergency mode long enough to really study the IEPs.

What I found saddened me. All these years, I'd assumed we'd been effective advocates for our girls. Yet, after studying the small print, I realized we have A LOT more to learn.

I cried after I discovered this. I cried for E and S and the fact that they need IEPs in the first place. I cried for S whose voice went unheard for years because we didn't know we could ask for an assistive technology evaluation and the school didn't offer one. I cried for E and all she's been through with her aneurysm rupture, surgeries, and frequent illnesses, and the fact that she deserves more. I cried for what we didn't know and the fact that we could-have should-have known more. I cried for that and more, and then I found a way to turn my emotions into advocacy.

Both girls deserve results-driven, transparent, accountable educational plans. P and I are working hard to achieve this. Getting there will be a process, but we're talking about our children's further education, independence and employment. The stakes are too high for us not to be committed to this process for the long haul.

On tap for the next few days:

Today--IEP review and goal re-visioning in preparation for Tuesday's meeting, planning for next week's trip out East for doctors' visits, and, then, if time allows, head out to the local Pet Expo.
Tomorrow--Sunday school, church, more trip planning, and more IEP preparation.
Monday--Parade and picnic with long-time friends, and packing.
Tuesday--IEP meeting and packing.
Wednesday--E and I leave for Delaware where E will spend the rest of the week meeting with specialists in primordial dwarfism.

Wrightslaw, Jean-Luc Picard, and Donning my Advocacy Armor

No, I haven't given up posting. (Or writing.) I'm on a hiatus of sorts, driven by the need to don my advocacy armor for my two youngest girls whose special needs require individualized educational plans (IEP). Why the need for protective gear? We discovered recently that our daughters' IEPs have so little built-in accountability that they're barely worth the paper they're written on.

After shoulding on myself for letting the inefficiencies go unchecked for so long, I vowed to make it right. First order of business was attending a kick-butt conference by Wrightslaw. While there, I networked and sought advice from parents who've gone before us on how to create effective, measureable, accountable IEPs, and came away with an action plan.

Not only have P and I vowed to make it right for our girls, we will borrow from our favorite Star Trek captain Jean Luc Picard and "make it so."

A small portion of what I learned at Wrightslaw (which is well worth the money for anyone considering it): Federal law is written to protect the rights of children with special needs to have a free and appropriate education. The burden of proof, however, is on the parents to know their children's rights so that they can create a plan that meets their unique needs for further education, independence and employment.

For parents who are already taxed by the day-to-day job of raising kids with special needs, it's a daunting prospect, one I personally believe many schools take advantage of. I'm grateful to report that thanks to Wrightslaw, I feel much more confident about the process.

Crowing about Career Day

Friday's Career Day at S' school was amazing. I spoke at both sessions (morning and afternoon) meeting with 4th through 8th graders, and chatting with them about writing, the creative process, favorite reads, and more.

At the end of each session, we played Plot from a Hat, a little exercise J and I dreamed up for use with the teens at our writer's workshop. It's a crowd favorite, one I hoped the KG kids would enjoy. To say the students were falling over themselves to pull a prop from the bag and be the next to continue the story would be an understatement. To my amusement, this was also true of the I'm-too-old-for-games 8th graders, even the ones who made it clear with their crossed arms and sour expressions that they'd rather be anywhere else.

Note to self: I need to do more school visits. My creative well is filled, and my muse ready and willing to work. Now all I need is a spot of uninterrupted free time...