Friday, September 25, 2009

Trip to California

Looking ahead to the day when Maggie will be grown-up and no longer covered by our health insurance, I have been looking into some options that other families use. If she were to apply for any government help for the disabled (or whatever the current PC term is), we have to show need and disability. Well, how do you do that when you've been homeschooling her in a safe environment? The government will want me to show them that she's failed at her schooling and needs special accommodations. Well, good grief, homeschooling IS the epitome of "special accommodations."

I have learned that we need to have some behavioral-developmental evaluations and at least one neuro-psych evaluation. They tell me that this is par-for-the-course for what the schools provide to special needs kids. But my kid isn't in school. Well, we need these evaluations, and they are mega-expensive. But .... ! There is a researcher at University of California who is studying VCFS and the way kids think. We've applied for Maggie to be a research guinea pig, and she's been accepted. The other vcfs families who've participated say that it's a fun experience.

So at the beginning of December, they will fly Maggie and me to Sacramento. For three nights, they'll put us up at the Kiwanis House (like a Ronald McDonald House) next to the hospital. Maggie will spend time with a psychiatrist and a behavioral evaluator. But mostly she'll be be playing video games and doing puzzles and things like that. They want to see which sections of her brain are busy while she's doing certain kinds of thinking tasks. Then they'll discuss the results with me and later send me the official reports.

Ahead of time, I have hours of evaluation forms to fill out. I've done quite a few already. I'm going to need to photocopy the long form which included all the history of Maggie's surgeries and hospitalizations and when she learned to walk and talk and dress herself; with all the work I put into gathering that information into one place, I want to keep a record of it myself. The only surprise to me on the forms was one aspect of Maggie's personality that I hadn't noticed until filling out the behavioral evaluation forms. I guess her obedience and cheerfulness and contentedness just kind of overshadowed that one aspect that I'd never before realized.

So Maggie is going to get her first plane ride. And I'm going to go west of the Rockies for the first time. It will be a short little girl-trip for us together. With lots of video games for Mag!


  1. Somehow I get the feeling she's going to enjoy that evaluation...

  2. What an adventure. And, no matter how annoying those forms are to fill out, just keep repeating to yourself: "California, in December. The sun will shine continously."

  3. Picture it Susan: California sunshine in December.

    Very good.

  4. Am I having reading comprehension problems, or did you not list the aspect of Maggie's personality that surprised you? Or was that on purpose? :)

  5. Ummmm, I hate to break to y'all but California isn't always sunny. We are supposed to have a really wet winter so expect rain and maybe even a little snow.

  6. I hope you report back on what you learn from the evaluation; I'll be interested to read how it goes.

    Speaking of special needs, last week I posted an interview with a friend whose book about her son with special needs was recently published by CPH:

    It's a wonderful book by a fellow LCMS member :)

  7. I saw that post, Barbara, and appreciated it. I'm glad you put the link here.