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 , could n't eat or sleep and was n'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 did n'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 was n't in therapy . 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 could n't walk or climb unattended . I was n'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 did n'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 . 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 was n't true inclusion . They were invited in , but they did n't have the skills to participate . They were often standing on the sidelines watching because they could n'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 is now 18 . He does ride a smaller bus to school , and he does rock . We did n'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 .
Carrie McGee 's son James was diagnosed with Williams syndrome at 5 years old . Williams syndrome is a rare genetic disorder that can cause developmental delays and learning disabilities . McGee quit her job as a school administrator to care for her son .