Posts Tagged ‘support’

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 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 shadows us everywhere. There…

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…