Hi. My name is Carrie. I have five kids. My second son, Jack, is diagnosed with autism. I used to think the hardest part of autism was the day we got the actual diagnosis—the day I walked into the cold rain of a November afternoon, and attempted to zip my squirming toddler’s jacket. I was wrong. I’m wrong a lot, if we’re being honest here. The hardest part is now. Sure, a lot of it was hard—the nights when he didn’t sleep, the long days chasing him around and making sure he…
I wonder when you wander As you pace up and down the hall What it is you’re thinking As you run your fingers along the wall I wonder when you wander When you silently slip away What it is you feel inside As all the others continue to play I wonder when you wander What you want to say When you retreat back into your world To script and script away I wonder when you wander What it is you see When you take off from your safety net When…
Let me tell you about a boy I know…His name is Cooper. Today, we had a party in our front yard and we celebrated him. We had ice cream and sprinkles and chocolate syrup and cupcakes. We invited all the kids in the neighborhood and their parents. And we celebrated this boy. The one who was born seeing and hearing and feeling and thinking in his own unique way. Some people tried to tell me that his life was going to be sad and lonely. They told me all of…
Today is World Autism Day. This is our 10th one. As my son has gotten older, the meaning of the day has morphed for me. It used to be about education. Today, it’s about celebrating. Celebrating differences, celebrating progress, and celebrating a boy who has climbed far more mountains than I have. And ice cream and dancing. I have three boys. Three crazy, wild, busy, smart boys. Each of them is exactly who they are supposed to be. My oldest is autistic. There are a lot more words used to…
Each time I make a friend, I wonder how long that person will be able to bear the weight of my friendship. In those first moments conversing, I make predictions in my head: We’ll never be more than acquaintances. We’ll be friends for a few months until she figures out how hard it is to be my friend. We’ll be friends for years but she’ll never invite me to her house. (If I stop inviting her to my house, the friendship will end.) Some people offer well-meant platitudes: “Tell me…
If you had asked me what communication meant five years ago, I would have answered without hesitation, “It’s conversation, talking and listening.” Then my daughter came along and showed me how limited that perception is. Evie is five and a half years old, and was diagnosed with Autism Spectrum Disorder three years ago. She doesn’t talk, not the way most people do. She does something called scripting, which for her means using words and phrases memorized from select shows, movies and songs to express herself. She throws them out like…
This morning I sat my three boys down…well, a few of us sat down and a few of us played Paw Patrol and negotiated a train ride this weekend….and chatted with them about the month of April. I asked them what happens in April. I heard Easter, mom’s birthday, and something about two train movies arriving from eBay. I may have even heard a ‘butt cheek’ in there but I chose to block that out. All true. And then I shared with them how the month of April is the…
A few years ago, I posted on this page, trying to be funny of course, about the challenges of putting leggings on a wiggly semi wet child who had just gotten out of the pool. Because let me tell you, it was not an easy task. It was like running a marathon. The comments were sweet and funny, mostly telling me how cute my kid was…but of course, one stood out. The lady said something like…‘I would never dress my kid in leggings. He looks ridiculous (only she said another…
The Questions They Ask Me…See these two boys? They are almost exactly 2 years apart. Cooper is 10 and Sawyer is 8. They are like night and day when it comes to most things. My 8 year old asks me the most amazing questions. We have to be alone though. Sometimes he will ask me if his dad is around, but he will say, ‘Mom, can I tell you a whisper?’ But usually he prefers to ask when we are alone in the car or snuggling in bed. How is…
As a mother to an autistic boy, I find myself trying to educate often. Kids. Teens. Unknowing adults. People who stare. People with kind eyes and people who are afraid of differences. I encourage questions even. Why does he flap his arms? Why does he roll on the ground? Why doesn’t he talk? Will he live with you forever? Some of the questions are easy to answer. Some are harder. And honestly, some I do not know the answers too. I may never. The visible differences used to make me…
