camp Archives - The KLS Project

Jonathan and Avner in Scout uniforms with OA Brotherhood sashes

Warming Up for the Inevitable

Avner had previously encountered an ADHD medication “generic equivalent” that gave him extreme side effects. The reaction was so violent that we filed a report with the FDA about the medication. Apparently several other patients had enough problems that the medication was removed from the list of generic equivalents for Concerta (a longer acting form of the same medication in Ritalin).

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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