Sensory Experiences: How My Autistic Daughter See the World

My daughter is autistic and she has sensory processing disorder. She experiences the world around her differently than most people.  You see the beauty in the smallest things.  Tiny flower petals, a speck of sand, a ray of sunlight shining through your fingers as it casts itself onto the wall in front of you.  When we take a walk together you notice the trees, the wind on your face, and the way the sidewalk cracks and breaks into different colored pebble textures on the ground beneath your feet.  Kinetic sand…

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I Don’t Want These Little Days to Be Over

My son Sawyer is 10 years old. He is a younger brother and and an older brother. Sandwiched in between 3 siblings. A few days ago we took some time together. I got a babysitter for the other three and we went to the river. We got Takis and Prime and worms. A ten year olds dream. We fished for an hour. He caught a dozen and a turtle. We talked about baseball and hockey and a girl with blonde hair. We walked to dinner. We went for a boat…

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Tethered Together: A Mother and Son’s Unbreakable Bond

He is tethered to me. This son of mine. It 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 nightly…

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Exploring the Possibilities: Navigating the Idea of a Group Home

Not Yet … Maybe One Day … The drive wasn’t bad about 40 miles from our home. As we sat in the waiting area you seemed confused and looked a bit scared. I sat next to you. I could feel all the questions. Questions you can’t ask. Words you can’t find. I could read your soulful eyes. I didn’t know what words to choose so instead I said nothing. We were visiting our Plan B. We discussed what to tell you and decided on saying we’re seeing “new friends.” It…

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Celebrating Unique Paths

I’ve envisioned this moment many times over the years. What it would feel like to experience the high school graduation of my youngest child, Kendall, having not had the opportunity to enjoy this same moment with her older brother, Skyler two years earlier. Would I be overly emotional at the ceremony? Proud and elated for Kendall but at the same time sad knowing that Skyler will never walk across a stage to receive his diploma. I thought maybe I should hold back a little of my outward expressions of excitement…

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Beyond Words: Autism and Friendship

My son Cooper is 12 years old. He said his first word at age 8. It was mom. Only he said it slowly, each letter drawn out as if he was plucking them down from the sky. M. AW. M. It was the most beautiful word I had ever heard. Today he has 20 or so words. Mom. Dad. Cooper. Sawyer. Harbor. Sister. Help. More. Eat. Juice. Water. Milk. Chicken. He doesn’t say them unprompted very often. And when he does say them most people can’t understand them. But that’s…

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Navigating the Education System with a Nonverbal Autistic Child

‘I feel like a fraud.’ That’s how I started my presentation to a wonderful group of teachers and staff today. ‘I feel like a fraud because I have no idea where my son fits into the world of education. And I’m scared to say it might be nowhere.’ My name is Kate and I have four children. They are 12, 10, 4, and 2. My oldest has a diagnosis of severe, nonverbal, level 3 autism. His name is Cooper. Nothing with him is typical. It’s always been a battle to…

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Protecting the Spirit: Autistic Children in a World Not Built for Them

Although it’s now changed when I first started my blog, I named it “Johnny’s Spirit” after my son’s nickname. While Johnny is his nickname, I want to explain the “spirit” part. As a parent of an autistic child, one of my biggest concerns is protecting my son’s spirit. His being, his essence, the part of him that you can’t describe but only feel. It’s what makes him who he is. The world we live in was not built for him. People may try to push him into a mold that…

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Never Judge a Boy in Pajamas

My son went out in his pajamas today. It was 3pm in the afternoon. It wasn’t because I’m a bad mum. It wasn’t because I am a lazy git. It wasn’t because I don’t care. In fact it was the total opposite. My son refused to leave the house. I held out four pairs of shorts and a selection of t-shirts – each one was rejected!  It was not because he is a bad kid, and it is not because I don’t know how to discipline my son. It is…

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The Essence of Inclusion: Understanding Individual Needs

Today I want to talk about inclusion and what it really means.  Inclusion is not just about being allowed into the building, there’s no point being given the key to a door if you don’t know how to turn it. Inclusion will look different for everyone, it’s not a one size fits all approach.  Every single person has different needs, things that make their life “work”. With Charlie it’s a lot of things, it’s complicated and you need to want to understand.  It’s not about mere supervision, it’s about understanding.…

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