By the time I was 26 years old, I was the mother of four children. Three of them were diagnosed with autism and Fragile X syndrome—the most common form of inherited intellectual disability, a gene I tragically learned I carried. There is no cure.
My two sons, Quinn and Shale, suffered the most profound cognitive impairment, never developing speech or toilet training, and both became very aggressive and self-injurious. My youngest daughter, Faith, was cognitively impaired as well, yet eventually developed speech, reading, writing, and toilet training. Her deficits manifested in debilitating shyness, emotional sensitivities, and delayed academic development. I saw my children struggle to perform even the simplest tasks. I could feel their pain and overwhelming frustrations. I experienced the stinging remarks of strangers every time I went out in public with them. Nothing had prepared me for the role of full-time caregiver to these special children. My oldest daughter, Jaede, although typically developing, struggled to find her place in our unusual family and in the world around her. Through it all, I felt searing shame. I believed I was a failure as a mother.