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Outside, the world is pressing forward; inside, progress is still

Back-to-school time is upon us. While some families are looking toward openings around Labor Day, others are already scrambling to get necessary clothes and supplies and adopt new routines. Kids will be meeting their new teachers and making new friends. Older students might be starting various extracurricular activities and bonding…

How my daughter with Sanfilippo handles birthday parties

My 5-year-old daughter, Liv, has Sanfilippo syndrome, a form of childhood Alzheimer’s. In her current phase of the disease, she’s hyper, impulsive, and has no sense of danger. Cognitively, she’s akin to a 1 year old. That makes play dates and birthday parties a large challenge. Liv…

Balancing logic and emotion isn’t easy as a Sanfilippo parent

Parenting children is challenging. Parenting children with special needs or developmental delays is even harder. You must consider many factors: age, ability, environmental and situational dynamics, setting, time of day, and more. My oldest daughter, Abby, was immediately admitted to the neonatal intensive care unit after she was born and…