Our Story

What do you do when told your child has a disability?

By the time my daughter was eight months old, she had many medical challenges. As she grew, she experienced seizures, infantile spasms, and ataxia that contributed to multiple developmental delays. For years, she was tried on over 15 seizure medications that would work for a while, but then fail. We cycled through months of semi-controlled seizures until a break-through brought us right back to the hospital at square one.

Again, we started over. We would create another cocktail of medications to control the multiple seizure types. I asked, “How do other parents manage these challenges?” “How do other parents help their child manage the stress of illness and medical setbacks?”

I decided to answer this question by asking parents who have been on this journey for a while. I interviewed over 500 parents and caregivers and asked them, “What would you tell parents who are new to this?” I listened to their stories and organized their answers into SEVEN THINGS. Each thing is a chapter in the book, “The New Normal, Seven Things to Know as You Care for and Love a Child with Special Needs.”