My twelve-year-old daughter has been out of school for over five weeks. Katie is loving her extended vacation but I’m frazzled and depleted. Thank goodness that I have Nate in my life. He’s been doing a tremendous amount of sitting so I can leave the house to get a haircut, visit the doctor, meet with school personnel. Nothing fun or relaxing like yoga. Just the bare necessities.

In a few days I will visit the final autism non-public school (NPS) that was on the list I gave to the school district. Just as I suspected, a school focused on autism simply “gets” Katie and her needs. My problem may now be in selecting the best one. Katie could potentially be at this school for the next ten years. (Federal law guarantees special needs students a public education until they are 21. In California, they get an extra year.) I’m feeling the pressure of making the best possible decision.

The interim in-home program should have begun this week, but I am still negotiating with the school district. No sooner do we reach agreement on one issue then another one arises. Every time I get a revised draft, three more “weasel provisions” have been added. It’s an exhausting and stressful process, building a program from the ground up with minimal help from the district. I’ve had to research every line item, develop a schedule and a sensory diet, even develop a budget. I couldn’t have done this six years ago, or even three years ago. But now I trust myself enough to assemble what I know will work and then fill in the missing pieces.

I can’t help feeling that I’m working on something bigger than one child’s temporary program. A friend joked that perhaps I should start a school of my own. Is that what all this effort is for? Am I meant to start a school instead of a special needs law firm? Or build a school in addition to a law firm? When the director of an autism NPS told me that he could open another school site and fill it in less than a week, I began to wonder: is this my path? My next big adventure? Or something else entirely?

The past five weeks have felt like two steps forward, one step back. I’m making progress, but it’s slower, much slower, than I would like. Will all this work be worth it in the end? For Katie or perhaps the larger East Bay autism community?

There is really know way to know at this point. All I can do is trust my instincts, and they say to keep going, keep plowing ahead.

But what if this doesn’t work for Katie? What if the in-home program fails?

Then I remind myself that Katie was kicked out of a public school for the third time, and despite having average (or higher) cognitive abilities, still can’t read.

There is no way we can do any worse than that.

And we won’t.

Until next time,
Cynthia