I brought my son Sawyer to skate night last night. A school event at a local roller skating rink. There was pizza and music and arcade games. Kindergarten through fifth grade. Families. Siblings. So many kids. I laced up his roller blades and watched him be a little boy. Skating way too fast. Being silly. Telling stories. Playfully pushing friends. Dancing. Doing the limbo. He has a social life. Friends. He’s growing up. As I sat there watching, holding my baby tight, I was suddenly overwhelmed by all the feelings…
I had the honor of speaking to a room full of mothers a few weekends ago. To say it was a group of amazing women is an understatement. These moms are strong, resilient, brave, kind, and have the ability to find humor and joy even on their darkest days. They are no stranger to disability. Or stepping into the role of nurse/therapist/teacher. And driving to and from therapy centers. Living in waiting rooms. Children’s Hospital. And living on hope. They became advocates simply by giving birth. They inspire me. These…
We were sitting with the realtor about to discuss what we were looking for in a new home. I know she wanted to know about bedrooms and bathrooms and location. I didn’t care about that stuff. Not really. In the grand scheme of things that stuff wasn’t a priority. “We can’t be near a busy road. The house has to have a fence or the ability to add one BEFORE we move in. And most importantly, we cannot, under any circumstances, be near water. Non negotiable. I worry about windows…
When covid hit, much like everyone else, our world was turned upside down. Schools closed. Jobs moved in-house. Daycare paused. We hunkered down. We all became overly familiar with Zoom. Parents began to hate snack requests. We rationed toilet paper. And one other thing happened for us. One that I would have never in all my years thought could have happened. Our mental health services for our son Cooper stopped cold. The place that never closed. Never took a sick day. Acknowledged as few holidays as possible…shut down. And to…
Dear Sawyer, You are eight and I am writing down the stories I want to share with you when you are a grown man. So you know about our secret world. Last night I went to your bedroom to tuck you in but you weren’t there. So, I made my way to your older brother Cooper’s room and saw you holding him. It brought tears to my eyes. The protective way you were holding him was beautiful. He’s been driving you bonkers lately. He has this desire to be near…
Let me show you the beauty of my son’s world. And how my perspective has greatly changed over the years. A few days ago, Cooper, who is 10, began showing me a still frame of Dora the Explorer on his iPad. Dora happened to be wearing a purple pirate outfit. She was with her crew on a boat. They were making their way to Mermaid Rock. He has showed me Dora and her purple outfit at least a hundred times. Cooper also happens to be nonverbal. Meaning, he can’t necessarily…
One of the things I hear the most often from parents of newly diagnosed children is…I can’t figure out how to get my child to play with me. Or, I can’t find an activity for us to do together. This is coming from moms and dads who are trying so hard. They are desperate to get inside. But they don’t know how. Not yet anyways. Boy does that resonate with me. I was that mom years ago. My son wouldn’t play with me. In fact, he didn’t play at all.…
My middle son has been having some big feelings lately. He is 8 years old and sandwiched in between two very big personalities. I think sometimes it can be lonely to be the easy one. His dad and I are working for hard to make sure he knows how magnificent and treasured he is. Last night a movie on the couch with popcorn and tickles. This morning a doughnut date, just the two of us. And lots of conversation. Which is the best part in my opinion. I love hearing…
Sometimes I look at you in apprehension… I realize I am a foreign object…a lost immigrant to a new country in your presence. I look at where you look…to that corner where the sun hits…and I don’t see what you see. I do not hear what you hear and I only feel what I feel which sitting next to you can feel like so very little. It used to bother me, scare me and now I eat my croissant curiously searching for the light you are swimming in. In your…
I wish I knew then what I know now. I was naive when my son invited me into his autistic world. I took his hand and watched in wonder and awe. Never had I entered such a space of simplicity, beauty, complexity or hard. I made mistakes. I was ruled by inexperience. I’m not sure when the breaking point came, that pivotal shift to the exact moment when I found my voice to advocate for my son. It’s more than a discovery, it’s about setting words into action. When you…
