My Daughter, I am Thankful for You

My seven year old daughter, Emmy, sat down next to me this evening and asked me what I am most thankful for this year. She told me ‘Don’t just say family, really think about it. Be specific.’ Without any hesitation…I said ‘You. I am most thankful for you.’ She looked puzzled. Offended mostly. ‘How could you say you’re most thankful for me?! What about Dawson?! Are you not thankful for Dawson too?’ I smiled, and I hugged her tight. Emmy is always thinking about her little brother. Putting his wants…

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What Regression Means in Our World

I want to talk about regressions in our autism world. That word. Regression. A loss of skills. A set back. Starting over. If I didn’t live it I wouldn’t believe it. I know there is a clinical definition. Those never seem to sum it up for us though. A regression is like having the rug pulled out from under you. It’s two steps forward and three steps back. It’s working every single day on using a straw. Mastering it. And then one day, waking up, and not knowing how to…

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Learning to Acknowledge his Brothers

A glimpse inside our world…Most kids learn by observing others. They watch and learn. Or it’s instinctual. Kids just ‘pick’ up skills. We don’t have to teach them everything. We don’t have to think about every single possible skill that we do as humans and figure out a way to teach them. In our autism world, every single skill has to be taught. We’ve even had to teach Cooper how to learn. How to try. How to play. How to sit. How to care. Skills that are easy for most…

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Preparing for Cooper’s Eighth Birthday

Cooper’s 8th birthday is just around the corner. It’s always a bittersweet time for me. My boy is growing up. And yet, it’s a reminder of where he really is at cognitively, socially and emotionally. It’s a marker in time. A reminder. He will be eight. And yet, he won’t. A week or so ago, Cooper asked me for a party with ‘party, balloons, presents, cake, grandparents, Santa, Santa hat and Christmas tree.’ This is the first year he has asked me for a party. The years before have been…

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Severe Autism Venturing Out into the Community

Because sometimes you just have to get out of the house! I’m setting a goal of getting out of the house. The isolation is getting to us. It’s been so many years. And honestly, I feel like it’s now or never. We are going to start venturing out weekly. Short trips. Non busy times. Zero expectations. If it goes badly we will just leave. Once a week minimum. Every parent I talk to with older autistic children tells me the same thing. Just start going. And keep trying. I want…

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Living with Hoarding, OCD and Anxiety

Lately the stress of being home is wearing Jamie and I down. Our autistic son’s most challenging behaviors have really ramped up again. He is stimming on his Kindle, lining up objects, hoarding favorite items, tearing apart beds, destroying rooms, screaming, etc. T hese behaviors stem from anxiety. They also cause anxiety for everyone around him. I know this will pass. I know it will pass because it has before. But I also know that it will return. If we let our guard down for one second, leave doors unlocked,…

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Before Autism

Before autism. Before Harbor. Before Sawyer. Before Cooper. I had a miscarriage. Jamie and I were newlyweds. We got pregnant the first month we tried. Which was immediately after we got married. We saw a heartbeat at 8 weeks. We told everyone. We announced on Facebook. We planned. We bought. We prepared. We were going to be parents. We talked about the parents we would be. And the child he or she would be. At 13 weeks there was no heartbeat. I was devastated. That word actually doesn’t even accurately…

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Riding the Roller Coaster

Look at this smile. He’s back. We made it through another regression. Another loss of skills and spike in behaviors. This one lasted nearly two months. Which in our autism world is actually short. I don’t know what caused it. Maybe getting a new sibling. Maybe the ear infection he had. Or a full moon, new therapist, or change of season. I’ll most likely never know. That’s our autism world. A mystery. It’s constant ups and downs. Gaining skills. Losing skills. I call it a roller coaster. But we made…

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Being Afraid to Talk about Autism

Today, I brought my new baby in for his one month check-up. I asked all my questions and found out that he is as perfect as can be. All 12 pounds of him. As I breathed my sigh of relief, I asked the question I was too afraid to ask when Cooper was this age. ‘When do I worry about lack of speech?’ It felt good to say it out loud. This time I’m not afraid to ask questions. In this video I reflect on the days before Cooper’s diagnosis.…

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When the Differences are Noticeable

When my autistic son was two and three I remember thinking….at least he can blend in. He’s so cute that no one will ever know he is different. Or that he has autism. For some reason that mattered at the time. I think it was a comfort thing. Now, he is almost eight. And he yells, runs, rolls, crawls, flaps, eats anything he finds on the ground, and so on. He has licked strangers. He has eaten snow of stranger’s boots. It’s now apparent to me that we will never…

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