Posts by Kate Swenson

Yesterday, our family went tubing. I watched my three year old daughter bravely climb in. Then my five year son and 11 year old son. They squealed with joy and high fived and yelled for dad to go faster. I couldn’t believe it. I commented how fearless kids can be. As we circled the boat, my 13 year old son sat next to me. He watched with bright and curious eyes. He isn’t one to join in. Or always willingly try. I looked from him to his siblings. And then…

I’m scared a lot as a mom to a child with a disability. I don’t say it often. But I’m terrified. I’m terrified when he’s away from me. I’m terrified someone will hurt him. Or misunderstand him. I’m terrified of the future. I’m terrified of dying. I hold my breath when he is away from me. And I do my very best to manage the fears. Cooper is 13 years old. His diagnosis is severe nonverbal autism. I often say he has the kind of autism the world doesn’t understand.…

This not-so-little-anymore boy traced my face while I was sleeping this morning. I knew it was him before I opened my eyes. Once I did, he giggled and ran away. I’m sure he was confused why I was still in bed at 7 am. I haven’t been sleeping and yesterday I tried to explain to him that mommy was tired. After I told him he tapped on his chest, showing me his teal striped shirt. He must have dressed himself. He was proud. We both clapped and then he pointed…

My son has friends. Two of them. I’m not sure if I can convey how much that means to me. They wait for my son to arrive. They greet him at the door with a hug and a cheer. They hold his hand. They lead him. They talk to him. And they sit by him. These are his friends. I do not have autism. In fact, I know very little about it. But I do know my son. He is 13 years old. He has blond coarse hair. His eyes…

He is tethered to me. This son of mine. Although imaginary, connects us at all times, his lifeline. As he’s aged the rope has started to reach farther. I can move throughout the house without him following me from room to room. But he knows. He always knows where I am. I can go in the front yard and visit with neighbors. He waits for me, typically on the porch or just inside the glass storm door, watching. The tether seeming to expand and contract. I can go on my…

Today was a day. Long. Hot. A bit boring. Fun at times. The kids are figuring out this summer vacation thing. So are mom and dad. Schedule changes are tough I tell ya. It takes time to settle in. To figure out how to slow down. I watched my two oldest, Sawyer and Cooper, swim for over an hour. At first, just Cooper wanted to swim. It’s his most favorite activity ever. He’s a fish in the water. An autistic adult told me once that being under water is the…

There are quite a few stories in the news right now about kids with disabilities being excluded from events at school. This happens every year. And as mom to a child with nonspeaking autism, reading them hurts. Because I know. I know what it feels like to have a misunderstood child. And feel like you don’t belong. It’s an ache. It’s a deafening silence. It’s hope. It’s anger. Its frustration. It’s more. I’m sharing this with you because something beautiful happened. Something I didn’t expect. And it has humbled me.…

Summertime is different for some kids… So many of you are asking me about Cooper’s summer plans. A valid question. He finishes up school this week. Then he will be an eight grader. He absolutely understands that school is almost done for the year. I know because yesterday when we walked him to the bus he held up three fingers the entire way and had us repeat…’three more days.’ He likes his reassurance that one. Summer breaks are different for kids like Cooper. Or maybe it’s just him. I guess…

And then she said, ‘you are so lucky that your son doesn’t care what he looks like. Or care about the latest trends in clothes or even what his hair looks like. It’s so hard these days to keep up.’ She finished it with, ‘I bet he doesn’t even care what you dress him in…’ I’ve been thinking about that conversation for over a week now. I know what she was getting at. I know what she was implying. She was telling me I was lucky that my kid didn’t…