Uncategorized

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.…

This weekend, I had the honor of pouring into over two hundred special needs caregivers. I told them about how much I wondered what I could speak about that would inspire them, be something new they hadn’t heard before, and give them something tangible to put into action. I asked them to pause each day and ask themselves three basic questions to clear space to find gratitude and joy every single day. Even on the hardest days, there is always something to be grateful for. In a world where we…

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…