I was helping my autistic daughter navigate some personal medical issues that she had earlier today. I helped her through the hard parts and just went about my day. As I sit here this evening, thinking about our day, this wave of sadness and fear hits me extremely hard. When I am no longer here? Who will make sure these situations are dealt with in a way that respects and allows her dignity? I have dedicated the last fifteen years of my life to caring for this beautiful girl. I…
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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.…
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The reality of being a sibling of a child who has special needs, unique needs, disabilities…however you prefer to say it. The reality of Siblings of children with special needs is hard for most people to grasp if they have not been in that situation. Last summer, we dropped my oldest son off for camp and it was just myself, my husband, and the two girls for 3 days straight! This was a first for such an extended period of time. Yes, he has stayed with Grandpa while we took…
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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…
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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…
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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…
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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…
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My daughter who has autism, Olivia, was sent home from school on May 22nd, just one hour into her school day. It was the day before the last day of school. She was having behaviors they said they couldn’t get under control. They said they tried all things sensory, but nothing worked. I went to pick her up, and she was walking slowly and calmly with her teacher, so she must’ve recovered fairly quickly from those uncontrollable behaviors in the 20 minutes it took me to change my clothes and…
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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.…
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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…
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