Well, as I write this, Schuyler has been at school and her after school program for most of the day, and so far, no panicky calls. I've been staring at my phone all day, daring it to ring, but so far, nothing. Which is good.
I have to say, however, that I don't have much faith that the current cease-fire in the Action Plan(!) skirmish is going to hold, particularly since I haven't heard back from Schuyler's doctor in Chicago. (Could it be that they are busy taking care of actual patients? How rude is that?) I predict a "So where's the Action Plan(!)? For the love of all that is holy, WHERE IS IT???" conversation when we go to pick her up.
I think I've decided on my next writing project, now that the book is off to St. Martin's. Every time Schuyler starts some new project, we go through some variation of this song and dance. The exception was her Box Class, but that was unique in that they had a lot of information on her prior to her arrival. Also, they are superheroes.
Anyway, I've decided that my next project should be a User's Manual for Schuyler, v1.0. Or perhaps a Guide to the Care and Feeding of Schuylers. (There's a joke that I'm showing some rare restraint by not making here. Email me if you can guess what it is.)
It'll have the necessary medical information, perhaps even a plan, you know? For action! It'll also have material about how she actually operates, what she likes, what she hates, what ASL signs she uses, what to do if internet weirdos (and perhaps book-reading weirdos) try to steal her and eat her, etc. All the things you need to know, with some jokes and fun photos, just as an incentive to actually read it.
The thing about Schuyler is yes, she's a mysterious little girl. But you know what? She's not THAT mysterious, not if you bother to get to know her.
Actually, I think a sequel to your book would be a good idea. How many years in the future, do you think? Five? Ten? Both? I'm betting that folks who read your book but don't happen to read your website (or, like me, DO read your website) will want to know how Schuyler progresses beyond the ending of your current book.
ReplyDeleteWe have a user's manual for my son. He has a copy at school and one for home. It has: his history, gifts and talents, likes and dislikes, people in his life, Dreams for his future, Nightmare we want to avoid. Most importantly we have a ton of info on What Works and What Doesn't Work. We developed it with extended family, school staff, private speech therapist, etc. It has been invaluable.
ReplyDeleteI suspect that I'll write at least one followup to this book if it sells well enough for a publisher to pick it up. Then maybe she can write Book 3 as a rebuttal.
ReplyDeleteI am hoping for a Guide Book (in lay terms, of course) - on the Shepherds of the Broken.
ReplyDeleteI want my daughter to be able to read it. Or something that I can read to her.
So far, I can explain that your daughter speaks differently, but still has the same (types of) thoughts in her head.
My email is broken, forgive me for commenting with my guess here - and feel free to delete.
ReplyDeleteAre you referencing the care of Magical Creatures course and the textbook that goes with it?
Completely off topic, but this reminded me of you & Schuyler.
ReplyDeletehttp://funkrush.bigcartel.com/product/monster-mantra
Looking forward to reading your book. Thanks for sharing Form Hell with us, too. Sounds familiar.
ReplyDeleteLike Jodi, we also put together a plan with our daughter: her likes, dislikes, needs, wants, and goals. We bring it to all our Form Meetings: IFSP, hospital stays, new doctors. Nice way to convert folks from seeing our daughter, Hannah, as a patient/client/challenge to seeing her as the sweet, demanding little princess she is!
I suggest both a book and the Cliff Notes (or Spark Notes) version. The book is really helpful for those who will read a lot. I then used my book on Kat, her sensory issues, and her epilepsy to develop a two-page "talking points" version that was given to all of those unlikely to read the book version (and sometimes along with the book version as in "here's what you need to know immediately.") Now that she's at college, she tends to give her own version when she thinks it necessary.
ReplyDeleteIm eagerly awaiting the book if its anywhere near as informative, insightful and comical as the blog, but for some reason the rebuttal from schuyler also sounds like a bestseller!
ReplyDeleteI think it would be neat to have commentary from Schuyler in the margins. She can blog already, so the next logical step is getting published, right?
ReplyDelete"Schuyler for Dummies"?
ReplyDelete