I was just kinda wondering about a few things. Like, why do we get burned out? Why on some days do I love my son’s stuttering. It’s really not even stuttering, it’s halting, starting a word, bringing it back in and reforming it. Then it all tumbles out until the next words get backed up … Continue reading Creating Space & Saving Spoons
Wil Rode the School Bus Today!
Wil rode the school bus today. In this house we take no such statements for granted. In middle school, Wil riding the bus proved unsuccessful. He was already having a hard time transitioning to a new school with new educators and hormones were in full effect. The middle school years are challenging; then add in … Continue reading Wil Rode the School Bus Today!
On Teenage Terms
Wil was being a full-on teenager and I was being a full-on frustrated parent of a teenager. I had prepared him for this orthodontist appointment for over a week. And he likes the orthodontist. He likes the orthodontic hygienists. He likes picking out new colored bands for his braces. The issue was not the orthodontist. … Continue reading On Teenage Terms
HOW WE BEND
Today Wil and Manny went bowling. Both are teens with Down syndrome. Manny’s mom, Laura, and I share frequently about our plans, thoughts and concerns for the future. Thoughts about our boys as they age out of the school system; after friends have moved on to college, to jobs, to get married. How will our … Continue reading HOW WE BEND
Proudly Hail’d
At last Friday's homecoming game, Wil and five choir companions formed a half circle in front of a microphone. The spectators, packing the stands, rose with hats and hands placed over hearts. The perfectly uniformed Manchester marching band spanned the field behind the semi-circle of singers and began their patriotic play. I held my breath. … Continue reading Proudly Hail’d
Heavy and Light
Wil loves riding his recumbent bike around our property. The challenge is I can’t fully trust he won’t go out to the road. And it’s a busy road. I was talking to fellow mother yesterday. Her 16-year-old son, who also has Ds, is in summer speech and occupational therapy with Wil. As much as her … Continue reading Heavy and Light
Blame Overboard!
I was once asked if I felt to blame for Wil having Down syndrome. Rude, yes. But when something happens unexpectedly, we all look for reasons. This person just happened to ask their reason out loud. Asking why something happened is survival. However, our asking usually points to something outside of ourselves. We can dust … Continue reading Blame Overboard!
Turn it Up, Down
Wil and I left the store and walked through the parking lot to our car. Wil stopped just short of our car, and kicked his legs out in front of him in quick succession. He began humming a tune, then planted his legs and wiggled his hips. His hum broke way to song and he … Continue reading Turn it Up, Down
Person First
Person-first language. That was one of the first terms I learned. Wil is not a Down syndrome boy. Wil is a boy with Down syndrome. I also learned where the word Down came from: Dr. John Langdon Down. Dr. Down wasn’t the first person to discover Down syndrome, but he was the first person to fully describe … Continue reading Person First
Playing Catch-Up
Wil is an expert at the game of catch-up. It’s a game he plays every day. Wil has low muscle tone, which adds to the game. In fact, I’ve been told having low muscle tone feels like wearing a backpack all day long. It’s no surprise, then, that Wil’s favorite place to play is in … Continue reading Playing Catch-Up