My following post was first published as an article in NY Metro Parents on March 24, 2014. (Click here to read it on NYMetroParents.com)
Our 24-year-old daughter lives in a two-bedroom apartment, 15 minutes from our home, with another young woman and staff supervision. She has two volunteer jobs and one paying job. Her volunteer jobs reflect her passion for animals: She shines boots at the Rider’s Closet at Pegasus in Brewster and tends to kittens at the Complete Cat Clinic in Connecticut. Her paying job taps another passion: creating art. She is a gifted collagist who is paid to create original designs for SPHERE, a theater and arts program for adults who have special needs located in Ridgefield, CT. We are parents of a very busy young lady whose free time is taken up riding horses, making jewelry, learning improvisational acting, seeing her boyfriend, and competing on a Special Olympics aquatics team. She cleans her room, does her laundry, and helps with meal prep and shopping. In any crystal ball, the image of a life such as hers would appear in vibrant color, a whirlwind of movement, sparkle, and human warmth; a satisfying, stimulating adulthood.
This is our daughter’s life today. Twenty years ago I had no image at all of her young adulthood. The crystal ball was a void, and all I heard in my head was the voice of a neurologist saying to me, “Do I think your daughter will ever live on her own? No, I don’t think so.”
What were we dealing with then? A girl whose chronological age did not match her development, a child without a clear diagnosis—no spectrum, no syndrome. She was aptly labeled an “artichoke” by a renowned pediatric psychologist who, after extensive testing, concluded that “your daughter is an artichoke—she has many peaks and valleys and doesn’t fit into any one diagnostic category”—all said with a twinkle in his eye and a perplexed countenance. A child whose behavior manifested a panoply of delays and challenges across the board: expressive and receptive language difficulties, fine and gross motor delays, arithmetic disorder, and difficulties coping with peers, with family, with sleep, change, transition. A child at the mercy of her anxiety, and her family at the mercy of her meltdowns. Yet a child filled with possibility.
Gratefully much has changed since that time, most of all our daughter. But in those early years the journey was terrifying because all I could foresee in that crystal ball was loneliness, boredom, and isolation for our daughter, and a lifelong burden for our son. That was my nightmare. My mother’s heart, however, did not let me linger in the darkness of my fears. All my energy and fervor went towards making sure that nightmare would not come true, that our child of difference would flourish in her adulthood.