Yesterday was a big day for our youngest son, Patrick.
Patrick has Williams Syndrome (WS), a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music.
May is Williams Syndrome Awareness Month, and many local chapters sponsor walks around the country to help raise money and awareness for WS.
Our local walk, the Wayne Walk for Williams, took place yesterday, and it was an educational and joyful event for all those who attended. This is only the second year for the Wayne Walk, and thanks to the incredible efforts of the organizers, it has become the second biggest walk in the country. Special thanks to Jenny Knox and Melissa Murphy for their organizing and fundraising efforts, to Terry Monkaba, Executive Director of the Williams Syndrome Association who flew in from Michigan to be at the Wayne Walk, to John Boruk for serving as the emcee, and to the many corporate sponsors.
As part of the event, the organizers wanted to recognize an adult who has successfully overcome the challenges associated with WS, and is making a difference in the local community. We were honored that our son Patrick was chosen for the award.
Pat is 25 years old, and a remarkable young man (I know I am biased, but he really is).
Pat was diagnosed with WS at about two years old, and we were fortunate to have the diagnosis at such an early age. This enabled us to start him in early intervention programs, and such programs made a big difference in Pat’s development.
He then started kindergarten at the local public school (Radnor Township School District) and once again we were blessed with a highly supportive network of teachers, administrators, specialists, and students. Pat was mainstreamed since day one, and had a full-time aide assigned to him from kindergarten through high school. We can’t say enough good things about how much support the Radnor school system gave Pat, and how positive all of his Individualized Educational Program (IEP) meetings were.
Pat has also participated for several years in a research study led by Dr. Barbara Landau at Johns Hopkins University that looks at the language and spatial development of individuals with Williams Syndrome.
Once Pat finished high school, he then enrolled at Delaware County Community College (Delco). Pat enjoyed his time at Delco, but after about a year’s worth of courses had the opportunity to start a full-time job at the local movie theater.
Pat loved his time at the movie theater, making many friends and learning how to do all the various tasks required of movie theater personnel, selling tickets, working the concession stand, cleaning the theater (somehow that did not translate to cleaning at home), and whatever other jobs he was asked to do.
Pat was ready to move on after three years at the theater, wanting to try something different.
Once again, he was fortunate to find a job in a relatively short time period, working at the campus bookstore at Villanova. He has been working there for about four months now, and he seems to love the job. He likes the people he works with, and he enjoys the interaction with the college students. It certainly worked out well for us, since it is less than a mile from our house, and it’s where I teach!
Outside of work, Pat has the same interests as most 25-year olds. Music (all types), video games, bowling, mini golf, skiing, traveling (he’s been to Hawaii a few times, and even traveled there all by himself from Philadelphia), reading, and just chillin’.
Pat is fortunate to have great support from family, friends, and neighbors. His two older brothers have been great to him, and have probably had more influence on the wonderful young man that Pat is today than anyone else. He has lots of awesome cousins, aunts, uncles, and his Mom Mom and Great Aunt who have always been there to support Pat in his endeavors. Our neighbors have been fantastic, and are proof that it takes a village to raise a child. And Pat has many friends, some of them since kindergarten, who helped Pat to navigate those difficult school years. We are grateful for all the kindness these people have shown to Pat over the years.
My wife and I are quite proud of all that Pat has accomplished, and the joy that he brings into our life. It has been a wonderful 25 years, and we look forward to all the amazing things he will accomplish in the next 25 years.
To quote from Dr. Seuss’s “Oh the Places You’ll Go”:
You’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!
Congratulations on the award – we love you Pat!
P.S. Here is a short two-minute clip of Pat receiving the award.