Jill Edelman, mother of a child with special needs and author of This Crazy Quilt: Parenting Adult Special Needs One Day At a Time, reflects on her daughter surpassing doctors’ predictions and living a fulfilling life.
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.
Threads of Connection
These 20 years I have kept company with many other families and their special children, all of us embarking on the same journey, intent on creating a satisfying outcome for our children. We gathered in the hallways of preschools, elementary and middle schools, high schools. We crammed together on hard wooden benches at Special Olympic competitions, huddled on playing fields at campsites for special needs children, sought each other out in specialists’ waiting rooms.
Many assumed that I, as a licensed clinical worker and psychotherapist, had some expertise or tools to make my family’s journey easier. In fact, I was as overwhelmed and frightened as everyone else.
Twenty years into our journey, it is easy for me to conjure a colorful picture of my daughter’s adult life in that metaphorical crystal ball. Moreover, I know her success is not isolated. Now that my daughter and her peers with special needs have graduated, aged out, and moved on to the initial phases of their ‘adulthood,’ I am witness to the fact that there is not one ‘fix’—but there are many wonderful and satisfying outcomes for these individuals. Through my daughter’s feedback and conversations with her friends’ parents, via my own Facebook feed and the special needs grapevine, I see the uniquely fulfilling paths they have taken.
In our daughter’s case, her life is being managed by the agency Ability Beyond (formerly Ability Beyond Disability), which provides staffing and handles disbursement of her entitlements for rent, food, vocational training, and social programming. Three of her buddies from Riverview School, a special education boarding school located on Cape Cod, share a home that was set up by two of the moms in conjunction with government agencies in Massachusetts; as with my daughter, the young women live in a cozy home and are busy with jobs and social activities. Some of our daughter’s public school friends who remained in the area now attend the same day program as our daughter, have jobs, and are living in their parents’ homes while awaiting residential opportunities. A former camp friend lives in his own apartment with minimal supervision and works in a local supermarket. Several of our daughter’s former classmates attend specialized academic programs on college campuses for students with challenges. Another lives independently within a large supervised complex in California and travels back and forth to a job on her own.
Rich in Difference
Years ago, when I was a special needs parent on the front lines and all was unknown (and what was known was harrowing), the idea that our daughter’s life would never morph into a ‘normal’ one slowly, slowly, began to lose its ominous significance as we journeyed forward. And the idea of her future as a void…well, that was an unacceptable possibility. I simply had to grasp onto a possibility of some independence for her; the knowledge of that possibility was and remains a defining element of my existence.
Despite all my determination to pound out a safe and satisfying adulthood for our daughter, it was ultimately surprising and humorous how unprepared I was for the reality: I became the mother of a young adult with special needs who was no longer under momma’s wing, enjoying her life 15 minutes due west. It didn’t take long, though, for me to happily make the adjustment.
If you are a parent still hoping to raise your child of difference out of difference, then my story may be disturbing, discouraging, or worthy of dismissal. But if you are a parent who is raising a child with the potential or likelihood to be as rich in difference as possible, then you will take heart in knowing how our story, and the stories of many of our friends, have taken shape.
Every child’s future is unknown. A child of difference has a future that is more reliant on parental management and vision. Your child’s crystal ball will eventually be filled up with swirling colors, and together you will see an image of a safe, joyful, and satisfying adulthood emerge. We got there. You will too. Good luck in your journey.
Jill Edelman, a mother of two grown children, is a licensed clinical social worker, psychoanalyst, and couples therapist in Redding, CT. The author of This Crazy Quilt: Parenting Adult Special Needs One Day At a Time, Edelman blogs at parentingadultspecialneeds.com.