Fragile X

My Brother, My Rebbe

My brother is my rebbe and my greatest teacher. He has taught me that our greatest passion must be compassion. He has taught me what it means to be a loving, kind, and sensitive individual. Born with Fragile X, a genetic condition that causes intellectual disability, behavioral and learning challenges, Mike has never allowed his disabilities to define him. In fact, he continually defies it. Most importantly, Mike has shown me and everyone around him what it means to be resilient, to have true grit. He is the only one who decides what he can and cannot do.

Jon and Mike. Courtesy of Jon Leener

Fragile X Awareness: A Parent Speaks Out

In our world of parenting a child with special needs, all you have to do is say “Holland” and everyone knows you are dealing with challenging days and lost dreams. As Emily Perl Kingsley expressed in her famous poem, having a child with special needs is like planning a trip to Italy only to land in Holland. There is a new language, new places to visit and new people to meet. Everything is different, but that does not mean it’s bad.

It has taken me a long time to be able to write that — and truly mean it. And while it is still painful to realize we are in "Holland," having a 3-year-old son with Fragile X Syndrome has inspired me to be a better mother and to become an advocate for his needs and the needs of other children and adults with this genetic disorder.

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