On 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 More

Fun 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 More

Being 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 More

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 More

The 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 More

The 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 More

My 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 More

The 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…

Read More

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 More

The 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 More