“The diagnosis changed my plans, but it didn’t change her worth.” That quote stopped me in my tracks because it perfectly captures something I’ve struggled to put into words. When my daughter was little, autism felt like a series of milestones we were trying to understand. Then she became a teenager, and suddenly the future felt much bigger, much more complicated, and much heavier. Most parents worry about their children. That’s part of loving them. But when you have a child with significant support needs, there is an extra layer…
To the parents who have just received a diagnosis for their child, it’s going to be okay. Right now, your world may feel like it’s stopped turning. You might be sitting in a car park after an appointment, staring into space, replaying every word that was said. You may be grieving the future you thought your child would have while feeling guilty for grieving at all. You may be terrified of getting it wrong. I see you. I’ve been where you are. And you’ve got this. The love you have…
Today, I struggled. For 17 years, I have been managing another person’s nervous system, the two of us tethered together by an invisible tie. We are not only connected physically but emotionally as well. It’s as if we share the same nervous system, and every rise and fall either of us experiences is felt intensely by the other. Today was harder. For two weeks now, I have been trying to keep her calm and even, every moment unpredictable as we cycle through emotions: happy, sad, angry, anxious, and silly, over…
Watching my five-year-old son grow is like watching pieces of my own heart walk around outside my body. He is so much like me; it’s like watching myself grow up all over again. He’s so sweet and caring, feeling everything so deeply it almost spills over. He notices when someone is sad before they can even say a word. He carries emotions that were never meant for his small shoulders and somehow still worries about letting others down if he puts them down for a moment. I know that weight.…
Today, my freshman boy started a new school. A school just for kids like him. Autism is the norm there. Not the exception. I feel like it’s taken a hundred years to get to today. That’s how it is with autism though. It takes time. And waiting. And hoping and praying. And lots of decisions. Today was the day though. We said goodbye to public school and started something new. The morning didn’t feel much different. I woke him up. I dressed him. We giggled about deodorant. I prepared his…
There was a time before we knew it was autism.I call it the in between space. And often say that the not knowing was harder than knowing. We lived in that place for three short years. A blip really in his fifteen years.I knew something was different with my sweet boy. Possibly even from the second he was born. But I hoped. And I prayed that I was wrong.And these two, they were my benchmarks.My bestfriend’s kids.I grew up with their moms. 35 plus years we’ve been friends.Our babies will…
I just got home from a car ride with my son Cooper. A rare time where it was just the two of us. The ride, taking 30 minutes, was joyful. He showed me an excavator. An airplane. And more than a dozen semi trucks. He moo’d at cows. Showed me a fire truck on his Kindle screen. And then tapped his chest, letting me know that he wants to ride a fire truck. He danced. And waved. He giggled at penguins on his screen before showing me how they waddle.…
In the beginning of this journey as a parent to an autistic child, my mind sometimes went to places I’m not proud of. Places filled with questions. Mostly why. And if I’m being honest, those thoughts still visit sometimes. I have many siblings. Many of my friends had children around the same time I did. And in quiet moments, or on really difficult days, I would catch myself thinking things like, Why us? Why my son? Those thoughts didn’t come from a lack of love. They came from fear. They…
My son, Today was one of those days. One where you seemed confused by the world. One where I didn’t know how to help. Or fix it. Autism. Woven into everything you do. Into the way you think and see and react. Only I can’t see what you see. Or hear what you hear. Or feel what you feel. Today, when I got the call to pick you up from school, I felt confused. A hard day. I’ll never know why. But with you, the stakes feel a bit higher.…
I don’t know a world without autism. And I forget sometimes, when we are out in the wild, that we are different. Because to us, our son is just our son. He isn’t autistic Cooper. He is Cooper. And we have been living this life for 15 years now. We don’t know a different life. And then something will happen. Like last weekend. We went to a restaurant. A real one. With people and noise. Cooper sat on the floor. It’s always his seat of choice. An autistic adult told…
