Posts

I can’t say “I hate autism” anymore. I haven’t said it much, but I have. There are moments when I desperately want to be angry at autism—during a colossal public meltdown, the relentless screaming in the car, when things get broken at home, or worse, when my son can’t cope and it seems like something else has a hold on him and won’t let go. I want to be angry at something. I want to blame this invisible force that seems to inhabit our lives and shadow us everywhere. There…

Hope. Gosh I hear that word a lot. Have hope. Never give up hope. All we can do is hope. If we give up hope, than what do we have left. In the world of special needs, hope is a hot topic. Hope and I have had a rocky relationship over the last few years. For years I hoped nothing was wrong with my baby. Then I hoped my toddler would catch up. And then I hoped that it was ‘just’ a speech delay. Then I hoped it wasn’t autism.…

Take my hand and follow me, Let me show you exactly what I see. The colors all around me are beautiful and white, It’s a blessing and a curse to see light this bright. The background noise that you instantly ignore Screams inside my head the second you open the door. There is no mute or volume down, It’s a never-ending fight of swim or drown. Food can be scary if it is any color but beige, It’s a sensory issue that can’t simply be fixed with age. It’s hard…

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…