The Celiac Report, Week 9… plus related updates on my daughter

We’re 9 weeks into the celiac journey with our daughter. My past celiac reports have resembled diatribes more than anything, so I thought I’d do something different this time. Bear with me a minute. Item 1: Julianna has always been a bit of a cutup. She laughs—loudly and lustily–whenever anyone laughs, even when she doesn’t…

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The “Daily Buzz”

One of my daughter Julianna’s IEP goals for this year is to learn to express herself in writing. We’ve always had trouble getting from her what is going on in school; she needs help learning to bring what’s in her head, well, out of it. Her absolutely fabulous teacher identified that as a real need…

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An Update On My Chromosomally-Gifted Girl

A few weeks ago I posted on Instagram about my chromosomally-gifted girl’s adventures in color guard costuming. The response was so sweet, it reminded me that for all my personal interests of music and fiction and photography, it’s my daughter you all like to read about the most. It’s been quite a while since I…

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Pandemics, Special Ed, and Rolling With the Punches

Generally, I would say I’m pretty good at rolling with the punches. Fifteen-plus years of parenthood has taught me to make good plans. It’s also taught me to be flexible, because plans usually get shredded. But simply having one allows me to know the parameters and priorities, which, when plans do get shredded, leaves me…

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IEP Day

This is what #IEP prep looks like: notes from parent advocate, part A and B. The first draft of the IEP, from which the comments came, split in two: the half we got through last week, and the part we have to do today—the goals, i.e the basic shape of her middle school experience. Finally,…

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Testing (or: when a morale-booster ends up being demoralizing)

This past week, we got the results of Julianna’s “re-eval.” Now, for those of you who are not immersed in the world of special education, part of the process is that every three years a child must be re-evaluated to make sure they still qualify for special ed. There’s a whole battery of tests, and…

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Fun With IEPs

Fun fact: I spent 2 1/2 years as a music ed major before deciding all I really wanted to do was play my flute, and I universally hated every one of my education classes. The class that broke me and caused me to switch? Special Education For Non-Special Educators. It took me until Julianna was…

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On Julianna, at the end of Grade 2

Every so often, I like to share some of Julianna’s school work and progress. I need to be clear: this is not a total picture of Down syndrome. It’s not even a total picture of “what a person with Down syndrome can do in the second grade.” There’s a vast range of ability among people with…

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Julianna’s New Schoolyear

I owe you an update. You might remember that when we first had Julianna’s kindergarten IEP meeting, back in January, the representative from her elementary school, who knew very little about her, recommended that she be in a self-contained classroom for 65% of the day. I was very upset about this on a number of…

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Special Exposure Wednesday

I realized something this week: It’s never going to end. For the first two and a half years of her life, my sight was focused on getting Julianna mobile. Crawling, pulling up, and all the other steps along the path to walking. I knew that on the far side of walking lay teaching her to…

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