It’s been a month since we returned from Disney World, and for that entire time I’ve been intending to reflect about Disney with disability/celiac. We are planners in our house, but oh! the heights of planning we have achieved since my daughter was diagnosed with celiac disease. Our first meal at a restaurant required a…
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Stream of Consciousness
I’m writing this on a Thursday night (though it won’t post until morning), sitting on my deck by myself on a lovely evening in May. If any of you have ever had four kids, three of them teenagers, you know what my May is like. Currently we have soccer, baseball, horseback, color guard, drumline auditions,…
Read MoreThe 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…
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 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 MorePandemics, 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…
Read MoreThe good and the bad, part 1: Distance Learning
I’m processing my life right now by writing through it, and the thing that’s striking me is, once again, how close together the good and bad things in life are. So I figured I’d share some of those good-and-bad things. It’s turned into far too long a post… you know, every time you process one…
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,…
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Kathleen M. Basi 