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 Celiac Report, Week 6
Our adventure with celiac-disease-inspired gluten-free cooking has progressed in the last month, so I thought I’d share my updated insights. 1. I have done so much web searching that Google now knows to add the words “gluten-free” to any food-related search string. 2. I’ve looked up so many ingredients. If you’d asked me two months…
Read MoreUnwanted 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 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 MoreBeing Clear-Eyed About My Special Needs Child, And My Responsibility To Her
¾ of the way through Day 3 of iCanBike camp, the gym at the YMCA was starting to get less crowded as the more successful campers started heading outside with their volunteers to transition to independent riding. The speakers were playing “give ‘em hell” music like “Eye of the Tiger” and “How You Like Me…
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The Gift I Have To Give Is Me
We just came through parent-teacher conference season again, and what we learned in Julianna’s home visit was that although she can read a page that looks like this: her comprehension is stuck on pages that look like this: For anything more complicated than Corduroy, I have to sit with her, read with her, and stop…
Read MoreOn 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…
Read MoreThe Un-Twinning of the Littles
It lingered so much longer than I expected. When Nicholas first left babyhood, he seemed like Julianna’s developmental twin. I expected it to last just a few months, but the twinning grew firmer and firmer. For over three years, they have kept pace with each other, Julianna managing to stay just far enough ahead in key…
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Kathleen M. Basi 