A Mother’s Perspective

Written by Chris Guida

Imagine planning a trip to Hawaii, where the language is familiar, and the atmosphere is heavenly only to get off the plane and discover you are in Mongolia.

When my son Kevin was born 37 years ago, I had a totally different idea of what his life would be like.  I imagined small joyful milestones like babbling his first words, taking his first steps, riding a bike.  I pictured sports awards, academic accolades, maybe even a scholarship to a fine college.  

That never happened.  You see, Kevin was diagnosed with a rare genetic disorder, Distal 18Q.  He is on the Autistic Spectrum.  This disorder affects his speech and language skills, gross and fine motor skills, weakens his muscles and a host of other things.  

When he was ready to start school, I learned quickly that I needed to be his advocate.  With a lot of research and many meetings with the school district I was able to find appropriate education.  One day, when Kevin was in his mid-teens, he told me he was lonely.  That broke my heart in a million pieces.  People with disabilities often face social isolation.  Once he aged out of the system at 21, we were lucky to find the WAE Center, an Adult Program like no other!

The WAE Center has provided a place where not only can he connect socially, but thrive culturally and artistically, finding talents he never knew he had. It is continuing education every day in a supportive environment.  Through the Center he had many amazing experiences.  His artwork has been exhibited in New York City galleries.  One of his pieces was chosen for a CD disc, Songs of the Spectrum featuring music artist Jackson Browne.  He had the thrill of his life when he was invited up on stage with the artists at the legendary rock club, The Bitter End. The staff arranged for a group to go to NYC for the ticker tape parade when the NY Yankees won the World Series. Kevin’s world was expanding.  

When the Pandemic hit and Kevin could no longer interact in person with his peers, the WAE to Connect was a blessing.  This is a crucial program enabling those who do not have the opportunity to attend in person to continue to be part of the community. With all the wonderful technology the Center provides, Kevin has taken his talents to a higher level, learning graphic arts and even selling his work on an online retail store.  Along with his art classes he has music, poetry classes, and a class called Decades, where he learns about the past and the very important Let’s Talk About Us where they not only explore who we have been as a people, but he is discovering who he is through understanding and empathy. 

Kevin looks forward to all of his classes and he has a real connection with each of the teachers and staff members. He has gained self-confidence and self-worth.  There are not enough words of thanks and praise I can offer to the incredible staff who show up every day to ignite that “spark within”.  As a mother my heart is full.

It has been a joy to see him blossom into the fine young man he has become.  Kevin is no longer lonely.  He is part of a supportive community and has formed lasting friendships.    

On this journey with my son, I am also learning.  I have learned that taking an unexpected detour can be quite rewarding!  It may not be the trip you expected, but it can be beautiful just the same.  

My son, Kevin Christopher Cooke is an artist, a poet, a music connoisseur, a sports enthusiast, and sometimes a political analyst, but most importantly, my son is happy and so am I.  What more can a mother ask for?!