There is an emotion that lives inside me now that I can’t really describe. It’s a mix of heartache, anxiety, helplessness and a feeling of being overwhelmed. There is actually a term for it. It’s called “Chronic Sorrow”. I feel sometimes like I live a double life. One with my older girls and friends being myself and another in this adaptive world we have created for our daughter Isla. Even when I am away from autism…I still feel like I live it. There is no escape and I have changed. I…
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This morning Sawyer had a family breakfast at his preschool. When we initially saw the invite we knew that if both Jamie and I wanted to attend we’d have to make arrangements for someone to watch Cooper and bring him to school. At this time, he is unable to attend an event such as this. It’s our reality. He doesn’t sit or participate. He isn’t safe. And it would make the experience not enjoyable for Sawyer. And that’s not fair. When I think about our family, one of my greatest…
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This morning we are becoming members of a new church. This is our place. We love it there. Of course we had to find someone to watch Cooper. He can’t go. He can’t sit or be calm. This would be setting him and our family up for failure. I like to be honest with you. I’m sad and a little bit angry. But not at anyone or anything. Just the situation. It plain old sucks. I hate that we can’t all go. I hate that everything is such a big…
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For some reason I thought about autism when my girls were babies. I kept track of their milestones, and as they grew, I was reassured when they continued meeting them within the normal range. A new school for autism was being built just down the street from us when our first was a baby, and I remember thinking to myself, “I sure hope we won’t ever have a need for that school”. I thought about autism with our son Austin as well. Just once when he was a newborn. I remember…
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I often get overwhelmed by life. Parenting, working, surviving, money, winter, whatever. You name it. I’m human. But typically, the worries I carry around life have answers that I can see. I may not always be able to do them or fix the problem but I do know what I ‘should’ do. I don’t always feel like that with my son’s autism. I feel like the questions are more confusing. They are harder. They are unique. I often feel like the questions and concerns live in the grey area. It’s…
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As a young child, my son Cody was always full of energy and often became dysregulated and would have meltdowns and tantrums for hours at a time. I remember sitting against his bedroom wall just watching him during one of these meltdowns to make sure he didn’t hurt himself. There was really nothing I could do. I just made sure he was safe. Those were very hard times in our journey. I didn’t know what he needed and felt so helpless. I can say I look back and I now…
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Today, we had our walk thru in our new home. The home we are moving to in 11 days. To say we are excited is an understatement. Our family has moved a lot. Five times to be exact. All for better services and a better life for Cooper. And we’ve finally found them. We are exactly where we are supposed to be. Cooper has an amazing village and he is thriving. Sawyer is starting kindergarten in the fall. Jamie and I both love our jobs. We are happy. Live is…
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In the very early days of Mark’s autism diagnosis, I found myself in a little, darkened observation room, perched in front of a two-way mirror watching Mark during his special group speech program alongside other parents, who I would learn later were at the exact same spot on their journey. One of these parents has become a dear friend of mine, and as she put it when we first began chatting, she had unpacked her bags in the land of grief. She grieved what could have, should have, and what…
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My baby girl’s body is changing. At 9 years old I can see the beginnings of the tell tale signs of puberty. I am really hoping it will be a long way off as I am not ready for all that comes with that yet. Isla still needs a lot of help with toileting and is still in a night nappy so I do not want this to happen any time soon. My heart hurts. She is growing taller and her last year’s clothes do not fit. She has gone…
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Since Cooper was a baby, he has always touched my face. He will do it to get my attention or to show me something that’s important to him. He will do it when he’s excited, when he is sad or happy. It’s his way of communicating. He does it even before vocalizing. He always has. It’s our thing. This is how he shows me love. He will run up to me, motion for me to bend over, and palm my cheek with his hand. Sometimes, it is just for a…
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