Sitting in the dark, of course I did it too. Too proud or too ashamed to show my tears. I remember my Gran: “You are one of us, we don’t cry, we straighten our back, chin up and smile head high, no matter what.” She told me that when I was slightly younger than my daughter. She was lecturing me because I cried over other kids bullying me. Tough skin, tough love. She was that kind of a woman. It also taught me not to show my hurt…my tears are…
“Build your tribe. Find your village. You’re going to need them.” I remember looking up at our pediatrician through tears as she said those words to me shortly after delivering my son’s Autism diagnosis. She explained how dynamic and changing our lives would be and that we would need to find others who understood. The gravity of those words didn’t quite register with me at first. I mean, I had friends. I had family. What did she mean I needed others? At first, I was lost in my grief for…
As a child I always felt different. I had some dolls and Barbies but I never played with them. I’d rather have them set up or put new clothes on them. But I never played with them. I remember first grade, my best friend was sick and ended up dying from a brain tumor. I cried a bit but the day I went to school I didn’t shed one tear. The rest of the class was sobbing. I couldn’t understand why some kids were crying because they didn’t even like…
I’ll sit with you in the dark, when you know, but you have to wait. Wait for others to believe you. Wait for insurance approvals. Wait for evaluations. Always waiting to hear what you already know. I’ll sit with you in the dark when you feel alone. When others tell you they’ll pray for you. When they tell you stories of how they know someone who knows someone. When they tell you that God gives special kids to special people. When they tell you, “but they’re so cute” or “they’re…
I can remember when the first signs of autism started popping up. I was in the dark. I did not know anyone who was going through what I was going through. I did not understand how to help Kyle and how to feel. I did not know which direction to go in. I was completely alone and in the darkness. I would sit in the shower and close my eyes. I could feel the water dripping down my face washing away the tears. I could hear the water pounding against…
They said, “your son has the highest needs of anyone in the school”. And as a mother, what I heard was, “your son is the most challenging child we have”. Like an almost “admission of irritation” on their part; Or so it felt. That statement wasn’t necessary. In a meeting that I called; me, myself, as a concerned parent, as a special needs Mother, those words didn’t need to fall from anyone’s lips. Because it’s a statement made without a practical solution. Unnecessary. “Your son has the highest needs of anyone…
My name is Carrie, and I have five kids. My second son has autism. His name is Jack. He is sixteen. Autism impacts the way he eats, sleeps, learns, and moves. Let me tell you what else autism does. It takes a perfectly ordinary activity, and smudges it with its greasy fingerprints. It turns up the volume, and makes everything so bright and glaring, you have to squint to see any of the goodness that might be left. There is no manual for this—for figuring out how to clear through…
‘They grow up overnight.’ As parents, I think we’ve all heard that sentiment. ‘The days are long but the years are short.’ That one is my favorite. And it’s so true. I have three boys. Cooper is ten years old. I blinked and here we are. Sawyer is 8 and the little one is 2 going on 13. We are just your typical family. With the color of autism woven in. One of my goals is to talk about the things I’ve learned being a mom to a unique boy.…
I do not have autism. I am not autistic. But my son is. Being his mom in no way makes me expert. But I do my best. I try so hard to be the best mom I can possibly be to him. Autism feels confusing to me a lot of the times. I believe we live in a black and white world for the most part. And my son lives in color. Blues and reds and yellows and greens. We, his dad and I, have navigated autism for ten years…
Today is World Down Syndrome Day. I am going to make a statement that I know is controversial. People may come at me in the comments. But anyone that knows me knows I am honest, sometimes to a fault. I hate disability awareness days. Wait. Before you take your shock and disgust to the comments, let me explain. I have built my career, my character, who I am and what I stand for, on advocating for those with disabilities. All individuals with disabilities. Not every disability has an awareness day.…
