Kleine Levin Syndrome Archives - Page 3 of 4

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.

Overcoming Doubts about Kleine Levin Syndrome in my Writing

My apologies for the recent hiatus in my writing. I had to gather my thoughts about the next part of our family’s story. It both drains me emotionally to revisit some of our darker days and I think it’s important to cover the details of this period as accurately as I can. As a memoir, I understand that much of what I share is my own subjective account of our

Blindsided

This night owl stuff had to stop. Not only wasn’t Avner waking in the morning. He was potentially violent when we tried to wake him. He would lash out with hands or if someone was at his feet, he would kick. At the same time, it was evident that Avner was waking at night to eat. Sometimes, he would deny it. We would find plates and bowls under his bed, along with sport drink bottles. On one occasion, he even drank most of a bottle of maple syrup.

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.

Avner watching tv with the dog across his lap

The Conversation

I suppose that context always makes the difference. Talking to Avner tops the list of important things I do, especially during this lockdown. Absent any other external stimulation, I find that engaging conversation has a nearly magical ability to restart cognition. It may be my own confirmation bias, but I don’t think so. Avner has a ravenous appetite for information and analysis. I love that aspect of his personality. We

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.

Category: Kleine Levin Syndrome