school Archives - The KLS Project

Jonathan and his friend Leonard planking.

Seeing Some of the Worst Symptoms of KLS

Avner would become mute and disconnected from everything else around him. On one occasion, he left the Scout House to sit on a bench outside. When our Scoutmaster, Crill and I tried to speak to him, he refused to acknowledge us. I tried to get him into my car at the end of the meeting. Instead, he got up and started walking towards home, only a mile away. I called Barbara from the Scout House to let her know that Avner was walking home. He walked past her which worried us both, but eventually turned around and came inside.

Avner, dressed for his last middle school concert.

Spring Break Disaster

Still the attitude grew darker. Avner gravitated to violent video games. In fact he had migrated away from the social games that he played with friends at school. He was turning morose and there wasn’t a ready explanation, except adolescents. Everything that we thought we saw could be explained by teenage hormones or frustration with school work.

Attention Leon Schools

Since he enrolled in the GED program through Leon County Schools, we assumed that his successful completion of the program and subsequent college enrollment would have triggered some kind of notice to the school system that he was done. Finished. Complete. Resolved. Ended. Concluded. The chapter has been closed.

Everything Changes at Once

In January of 2016, Avner began to change. He became secretive and withdrawn. He was very irritable. Suddenly, he went from struggling with English to struggling in most classes. We worried. We also assumed the cause was puberty.

Challenges

Avner faced a number of challenges in school. By the time that we finally secured his individualized education plan, more commonly known as an IEP, he was in third grade. Avner received a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD) and Asperger’s Syndrome, now classified under the larger umbrella of Autism Spectrum Disorder (ASD). He was classified as twice exceptional, meaning that he also tests with a gifted IQ. Some

I undertook The KLS Project as a labor of love and a personal memoir of our family’s journey with Kleine Levin Syndrome. I have been writing about KLS for since 2017, recording my memories, posting questions where they might produce an answer and eventually answering many of those questions myself.

Our journey is unique. Yet, the National Organizations for Rare Diseases (NORD) estimates that about 20% of people have a rare condition. Even more have learning disabilities and struggle to access education and the goal of a Free Appropriate Public Education.

Ultimately, I write my story about the challenges of parenting. Some aspects of the story contain exceptional circumstances but most of the solutions come from love, honesty and constantly assessing expectations.

You may want to read these posts in chronological order, but nothing says that you have to.

If you are wondering. The child in the header photo is not my child. It is a stock photo.

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