Tomorrow is Sophie’s IEP.

I hate IEP day. (The IEP is basically a master plan for school for a kid with special needs.) I know a family that bakes a pie in honor of IEP day. I love that. Tonight I’m going to rustle around in the freezer and cupboards and find something to make — if only to take my mind off what’s coming.

I hate IEP day because no matter how much I prepare — and I prepare a lot, Sophie’s lawyer will be there and we both have draft copies of the IEP document, and so does Sophie’s aide, and I’ve talked to most of the teachers and even a therapist who doesn’t see her anymore — I always feel like I’m falling, like one of those dreams where you fall off the bed. Unsteady. Uncertain. Panicked.

What should I ask for? What can I ask for? What does Sophie need? Damned if I know, and I’m beginning to wonder if anyone really does and don’t get me wrong, she’s doing well in sixth grade. At least, that’s what the teachers all told me at parent/teacher conferences earlier this month. She asks the right questions, gets answers right on tests, understands some math — all things I had given up attempting by the time I hit sixth grade and you think I’m kidding but I’m not. Ask me to diagram a sentence.

Sophie’s grades are good. But her standardized test scores in math and English have actually gone down since last year. That might be because she forgot her glasses the day of the last test — or it could be that standardized tests are stupid or it could be something I don’t want to think about. Something I’m wondering if I should address in the IEP, a question that’s been on my mind for a while but one looming large as Sophie’s next birthday approaches:

Do Kids with Down syndrome Stop Developing Intellectually at Age 12?

A few months ago, a dear friend on the other side of the country called to ask if I’ve ever heard that kids with DS stop developing at 12. Her son is a year younger than Sophie. I had to admit that I had heard it, that in fact last year as I was touring junior high schools a special education director with 20-plus years in the field had informed me that “those kids” stop developing around 7th or 8th grade. I was horrified that someone would make that assertion — and I still am — but the question’s nagged at me ever since.

I buried it, and focused on other things — cheerleading, drama club, the right back pack. But with the IEP coming tomorrow, I dug it back up again and did some crowd sourcing. I asked a few Facebook friends with older kids with DS: Do you think our kids stop developing at age 12?

The answer was a resounding no. I’ll admit i cheated — I knew it would be, having watched their kids flourish on my FB feed.

“Pure hogwash,” one of my favorite mom friends wrote. “Any of us stop developing if we are not encouraged and given new opportunities to expand our thinking.”

She’s right. Totally right. I’ve seen it happen both ways with Sophie.

But still, the question nagged at me. So I emailed Jamie Edgin. She’s a leading researcher in Down syndrome and cognitive abilities, based not far from me in Tucson. Lately, her research has focused on how sleep affects cognition in people with Down syndrome. But her work goes beyond that, and she and colleagues even came up with their own test designed to measure cognitive abilities in people with DS, recognizing the challenges in testing the population.

I asked my question, with no real anticipation of the answer. Not long after I hit send, the following came back:

Dr. Edgin explained she just had a new sleep study funded by the Gates Foundation, and would have to make her answer brief.

“In terms of your question, unfortunately some areas of function are less able to develop (including learning processes driven by brain regions that will eventually be stricken by Alzheimer’s-disease related decline — like memory functions). Other functions do continue to develop past this age (ones that are not reliant on those particular regions, like everyday skills, word knowledge).

And, the variability is more salient between individuals than the similarities.”

Okay. I digested that slowly, then asked for more. Did she have any specific studies she knew of? Edgin replied that these conclusions come from her own work, and she has yet to publish findings.

She didn’t say they stopped developing, per se, but the news was hardly heartening.

That damn 21st chromosome. For a while now I’ve known that the genes that cause the plaque on the brain that causes early-onset Alzheimer’s (a very basic explanation) are found on the 21st chromosome. If you have an extra 21st, you’re all but guaranteed of getting early-onset Alzheimer’s. It should have occurred to me that there would be earlier implications. But it didn’t.

They say that knowledge is power, but I’m going to bury that one — for tomorrow, at least — and focus instead on what Sophie needs for a successful next 12 months. Keep my expectations high.

And tonight, I think I’ll bake a pie.