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…
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 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 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…
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…
Read MoreThe Reason That Dream Was So Scary
I’ll blame it on watching “Logan” late at night. I had this vivid dream in which we were at my parents’ church and in the middle of the Gospel, I realized Julianna’s bus was due to drop her off at home in five minutes. Only my parents’ church is 35 minutes away, and by the…
Read MoreThe Saga of Orthotics, and why it’s important to talk about it during an election year
I hope you’ll bear with me today, because there’s a reason I’m about to tell this story. One thing that sometimes accompanies an extra 21st chromosome is “pronation.” This means that due to low muscle tone, the feet turn out. Julianna has fabulous health and good cognitive functioning but her feet are regularly regarded as…
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…
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Kathleen M. Basi 