'Unreasonable mother' shapes a world that embraces disabled children

Mom refuses to accept son's bleak diagnosis
exp Human Factor Carrie McGee_00002001


    Mom refuses to accept son's bleak diagnosis


Mom refuses to accept son's bleak diagnosis 01:41

Story highlights

  • Carrie McGee's son Alex was diagnosed with Williams syndrome at 5 months old
  • Williams syndrome is a rare genetic disorder that can cause developmental delays and learning disabilities
  • McGee quit her job as a hospital executive to care for her son

Carrie McGee is a mother of three. She graduated from Cornell University with a bachelor's degree in psychology and master's in health services administration. She left her career as a hospital executive in 1996 when she was told her firstborn, Alex, had Williams syndrome. Eight years later, Carrie founded Whole Children with other parents. The nonprofit provides support and programs for children with disabilities. The opinions in this article are solely based on the author.

Hadley, Massachusetts (CNN)When my son was born, I picked the name Alexander because the baby names book said it meant "Leader of Men," and I was sure he was destined for greatness. Here's how I pictured it: He would be very smart, win awards, go to a prestigious university and maybe even be famous.

At 5 months old, he still cried constantly, couldn't eat or sleep and wasn't really developing. And a heart condition was detected. His pediatrician suggested we have a geneticist look at him. It might be Williams syndrome, he said.
I didn't know enough to be frightened, until I went to the hospital library where I worked and looked up the definition. Of the 25 things that could accompany Williams syndrome, seeing the words "mental retardation" shattered me the most.
    I pictured someone on the short school bus, rocking back and forth in the seat, watching the world through glass but not being allowed to be part of it.
    Nope. That would not be our fate. We would beat Williams syndrome, just the two of us if we had to.
    I quit my job, took Alex to therapy twice a day. His older stepbrother, Kush, and I worked with him at home when he wasn't in therapy.
    Carrie McGee and her son, Alex. When Alex was diagnosed with Williams syndrome, she quit her job to care for him.
    As the years went by, Alex made progress, but at what cost? I became isolated and depressed. The other parents in our neighborhood made friends while their kids played together on the playground, but Alex couldn't walk or climb unattended. I wasn't about to let him sit in the wood chips by himself. We had work to do.
    With each evaluation, more deficits were revealed. Every time, I asked what I could do to help my son. The professionals patted me on the head and told me to accept his limitations.
    I dreamed of a place for Alex and I where there was laughter and happiness, where other parents who shared similar experiences could come together. I didn't want to choose between having friends and helping my son. I needed both.
    By the time Alex was 4, I was a single parent. With my three sons, I moved from Philadelphia to Amherst, Massachusetts, where the schools included kids with special needs in their regular classrooms.
    Alex's brothers Kush, center, and Rohan, left, share a special bond with him.
    One by one, I met parents who were like me. One father would become my future husband.
    We noticed that even though our kids were technically included in school, it wasn't true inclusion. They were invited in, but they didn't have the skills to participate. They were often standing on the sidelines watching because they couldn't keep up or understand the rules.
    I shared my dream with my friends, and together we embarked on a journey to create a welcoming place where our kids would be understood and celebrated. In 2004, we opened Whole Children, a nonprofit where kids, teens and adults with disabilities can learn valuable skills to help them fully engage in the world around them. Instead of assuming every individual who walks through the door can follow complex directions, we support them as they are and teach them skills they need to be meaningfully included in their schools and communities.
    The first year, we ran eight classes and served 26 families. Ten years later, we have around 75 classes a year, and we have grown to a community of 800 families. We laugh -- a lot. Our children have taught us not to be afraid of mistakes, so we've become fearless in our willingness to try.
    We frequently fail, which is the secret of our success. We understand, and are helping our communities understand, how much these unique and incredible children will grow up and enrich our community.
    It does not weaken us to make the effort to understand and include those who are different. It strengthens all of us.
    Alex performing in a Whole Children theater production of  'Charlie Brown and Pals'
    Alex is now 18. He does ride a smaller bus to school, and he does rock. We didn't beat Williams syndrome because he still has it, but at some point, that goal just became irrelevant.
    Alex is Alex. He is an accomplished musician who aspires to be a DJ. He is in his high school musical, has had starring roles in Whole Children's theater productions (everyone who wants a starring role gets one) and studies voice through a program at the University of Massachusetts.
    He recently gave a talk to a group of delegates from Azerbaijan who came to the United States to learn ways to improve their educational services for people with disabilities. He made such an impression on them that when I traveled to Azerbaijan with a group of professionals to support their work, a delegate said, "Alex is known all over Azerbaijan."
    So in a way, he did become famous.