Thursday, January 31, 2013

Sophie World

I got this photo today from Sophie's teacher with the following email:

After a very long walk, a community trip and a cooking lesson, Sophie is just plain sacked out!

Sometimes I worry about Sophie at school -- well -- not sometimes, but more like nearly all the time. We parents of children who are non-verbal and/or completely defenseless in a myriad of ways take a certain leap of faith -- some might call it insane -- when we drop them off for six to eight hours with strangers or entrust them to school-assigned nurses and aides. While I've actually learned to at least understand the merits of the medieval chastity belt, I do believe Sophie to be safe at school, and I know that her teacher and aides do a bang-up job teaching and caring for a diverse group of special education students. My expectations for the gigantic morass that is the Los Angeles Unified School District are definitely zilch, though, and I've long let go of the legalese in Sophie's IEP, even caring whether or not her "goals" are being reached. There's only so many years when learning to feed oneself with maximum assistance is something for which to fight tooth and nail. What I'm grateful for, though, are these snippets of her life there that her teacher periodically sends me. They reassure me that Sophie has a life at school that is rich with activities and friendships and care.

Tomorrow, I'll be attending a workshop on conservator/guardian issues. Sophie will be eighteen years old in March -- good lord! -- and it's time for her to go out on her own and make her way in the world.

Just teasing. I'll no doubt learn about how to become her guardian without exploiting her rights as a human being. Stay tuned for what I imagine will be some Monty Pythonish moments as I navigate yet another system. I'll end here with a clip from a movie that my friend Jeneva recently posted on her FB page in anticipation of her son's IEP. I think it pertains to the parents' perspective dealing with any of the systems we encounter (insurance, medical, education, social, etc.). And it made me laugh out loud.


  1. Oh, that video is PERFECT. We've had some minor gearing up for battle this month, diagnosis in the works, we hope. It's an adventure to be sure.

    Eighteen, wow!! I'll keep you in my thoughts as you learn how not to take advantage of your beautiful girl. Ahem.

  2. Let me know if you have any questions. I am happy to help you.

  3. you shoulda seen my jaw drop until I read, "Just kidding." Srsly: I thought you had finally lost your mind. (Not that I would judge you for doing so)

    Good luck navigating the system -- the video as it pertains to the subject is pretty damned funny!

  4. Oh, you do have a wickedly dark sense of humor!

  5. I keep waiting for the other scene in that movie where the Scottish & Irish end up hugging on the field. So far the cookies I've brought to IEPs have not resulted in any hugs. Hmm. Maybe if I add more choc chips?

  6. I constantly worry about Ryley at school. I am lucky if I get a sentence scribbled in his communication book. Very difficult when you have a child who is non-verbal. Today, he came home with a graze on his knee. Awesome. Good luck navigating yet another system!

  7. I am glad that Sophie has loving and caring people in her life.
    And that she has you. That most of all, of course.

  8. I hope the workshop provides important, concise information that is useful for you. And I hope that in your state, the adult system and the kid system aren't too terribly different so you'll already have a leg up.



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