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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A “Special” Tea Party (Photo Friday)
I know I said I wasn’t going to post, but some things simply must be shared. After months of attempts foiled by busy-ness, three of our local Down syndrome families with girls close to the same age managed to get together for a girls-only tea party this week, served by their sisters. How beautiful is…
Read MoreThe Charm and Challenge of Raising Julianna
In bullet points, in no particular order: Every time we introduce Julianna to a new teacher, be that classroom or for swim lessons, we have to begin with these words: “She likes to pretend she’s more helpless than she is. You have to be firm with her.” The truth is, she manipulates without even realizing…
Read MoreMy Alternative Spring Break
You know those trips organized by campus ministries every year, where college kids go to build houses in Appalachia or Central America? I never did one of those. I was way too timid (shocking, I know) and way too comfortable in my own ordinary. Those kinds of missed opportunities are the only real regrets I…
Read MoreThe Orthopedic Surgeon Who Rocked My World (or: The Saga That Isn’t)
You all remember, I’m sure, the saga of the orthotics. I’ve been talking about it periodically for years, both here and on Facebook. After Julianna broke her second brace in January, the orthotist sent us back to the PT. The PT told me she really wasn’t sure what to say except she’d like to see…
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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 MoreThe Minor Frustrations Involved In Raising My Chromosomally-Gifted Girl
When the phone rang during my oh-so-precious work time the other day, I almost decided to ignore it without even checking the caller ID. But there’s always the chance it’s somebody’s school. Which in this case, it was–Julianna’s. It turned out there had been a minor altercation on the bus. Julianna kept touching a boy’s backpack, even…
Read MoreIn Which I See My Daughter Changing
Julianna has been changing lately. It started a year or so ago, when we realized she had lost that wispy, delicate feel. She’s still tiny and I can still pick her up and carry her, but it’s no longer easy. She feels solid now, rather than fragile, her physical frame finally catching up with her…
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My Life With Down Syndrome
A sliver of what my life is like #parenting a child with #Downsyndrome.
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…
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Kathleen M. Basi 