When Autism Fixations Rule Your Days
“Look at the sky, Mom, it’s orange. That means it’s Halloween!” Austen was right, the sky was a very beautiful orange that morning. But I gently tried to explain to…
Meagan Earley lives in Paris, Texas, with her three children, dogs, cats, and a turtle named Carl. She is a preschool teacher and a caregiver to her daughter, Austen, who was diagnosed with Dravet syndrome in 2016. Meagan has relied on her village of other Dravet syndrome caregivers in the years since Austen’s diagnosis, and writes her column in the hope of paying it forward to other parents who are fighting each day to help their child thrive in all circumstances.
None of my children are exactly alike, and I like it that way. Each has an individual, vibrant personality; while one might like theater, another favors video games. Siblings, whether they share the…
Read more“Look at the sky, Mom, it’s orange. That means it’s Halloween!” Austen was right, the sky was a very beautiful orange that morning. But I gently tried to explain to…
Today a mom asked me if I thought she should try Fintepla (fenfluramine) for her child. They had just started a new medication and weren’t seeing any results. I told her…
I saw a meme a while back that explains what would happen if a special needs mom fell into a hole and could not get out. Many people come…
My parents have always been doting grandparents. Since my oldest daughter was born 12 years ago, it has felt like Target’s toy department exploded in my home. Almost anything my kids have…
Austen was 8 months old when we adopted Milo. Her seizures had already started, but her diagnosis was still a good four months into the future. We…
Like many families around the world, my family is home schooling this year. My degree might be in elementary education, but even so, I’m a bit intimidated by the idea of teaching…
This week, an all-too-familiar scene greeted me when I logged onto Facebook: a teenage boy smiling at the camera without a care in the world, and a message above his photo letting…
Last week, my daughter Austen and I were doing our normal before-bed ritual. We cuddle up together on the couch, and she plays on my phone while I catch up on an…
Being a special needs parent is the hardest job I’ve ever had. I constantly feel like I am not doing enough to help my child. I not only feel guilty every time something goes…
The world of special needs parenting isn’t necessarily a club any of us signed up for. It’s one we were thrust into and had to accept to simply survive. When…
It was the summer of 2016, and I was trying my best to finish my grocery shopping with three kids in tow. My list was short and the store was slow that…
When my daughter, Austen, first started seizing at 5 months old, we were told that it was probably just febrile seizures … even when she went into a status seizure two days…
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