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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Unwanted Adventures
Last week, my chromosomally-gifted daughter was diagnosed with celiac disease. Let me insert this appeal up front: We’re getting tons of advice from all quarters, so please don’t fill up the combox with that; I can’t process it all anyway. I have to learn things bit by bit. That was true when she was born…
Read MoreThe “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…
Read MoreAn 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…
Read MoreDisability and Friendship
So here’s a thing you might not consider about having a kid with a disability: It is REALLY HARD to make friends. Think about it. How do little kids make friends? STEP ONE: They find kids at school with like interests and personalities. They come home and tell you about it. STEP TWO: A) If…
Read MoreIEP 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,…
Read MoreTesting (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…
Read MoreMad Lib Theology
Today, I visit my blog to talk about this girl: Wednesday nights, Julianna goes to “church school” (because it’s easier for little kids to say than “religious ed”) while we’re having choir practice. Usually, in the chaos of grabbing boys from the nursery, cleaning up octavos and books, and getting an overtired family of six…
Read MoreOn Losing A Child, Recognizing the Value of Friends, and the Humbling Realization That Everyone Really Does Know Who You Are
It’s almost too complicated a story to explain. A group of parents were meeting Friday after school, at the Starbucks inside Barnes & Noble, to discuss a topic of mutual concern while the kids perused the books and toys. When it was time to go, I sent Nicholas to get Julianna from the children’s area,…
Read MoreFun 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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Kathleen M. Basi 