Best of All – Johnny!

Meet Johnny, a vibrant young man with a passion for life, an infectious sense of humor, and a voice that can command any room. Not only is Johnny a talented singer and great friend, but he’s also actively involved in a variety of programs both at GiGi’s Playhouse and in his community. From Project Pulse, Games with Friends, GiGiFIT Teen, Speech Therapy, singing lessons, and Teen Tastic – you could easily consider Johnny a regular at the Playhouse. However, he doesn’t stop there as he is also involved with his school, church, and karate communities. With a constant drive to raise the bar for himself, Johnny continues to amaze those around him. His mom, Kathy, shared more about his incredible growth and personality as we proudly highlight Johnny as this month’s Best of All.

When Johnny was born, a wise mother I knew, who happened to have a daughter with Down syndrome born a year earlier, shared the best advice.  She said, “First, do what you’ve learned with your other children.  If that doesn’t work, try something else.”  Such a simple approach, and basically what we’ve done ever since, and boy oh boy, where that has led us.  Now 16, Johnny is a Renaissance Man!  Over the years he did gymnastics at The Little Gym, Nature Nuts at the Lake Erie Nature and Science Center, danced at the Beck Center, took Dalcroze music, and piano lessons.   We go to the theatre, the orchestra, and most recently Kids Bop.  We travel—21 states and counting.

After all that exploration, Johnny gravitated toward karate as his sport and music, specifically singing, as his passion for the arts.  He recently earned the second red stripe on his green belt.  The next promotion is to a red belt, one belt below his goal of a black belt.  And, if you spend any time at the Playhouse, you know Johnny plans to sing the National Anthem at a Cleveland Guardians game one day.  We’ve been getting him gigs to work his way up and we’re blown away at his progress over the last year. 

This summer he had his debut ballpark National Anthem performance for the Lake Erie Crushers.  He sings in the choir at St. Edward High School, and as a very devout young man, his favorite place to sing is church.  Johnny is a proud Edsman and St. Andre Scholar, and he wants to go to college after high school.  He wants to study History and Theology.  He loves learning about presidents, and I don’t know another kid his age as excited it is a presidential election year.  He’s counting down the days until he is old enough to vote.

GiGi’s wasn’t here when Johnny was little.  And when they opened, he was pretty involved in the community.  We stopped in a few times, and while there were programs that interested us, the timing conflicted with all those lessons and other activities he was pursuing.  Johnny spent all his primary school years fully included, so none of his friends shared a pretty important part of his experience—that pesky extra chromosome.  As he entered his teens, we decided we needed to be more deliberate in broadening his social circle to include peers with Down syndrome.  That’s when we dove into GiGi’s full steam ahead!  Johnny especially enjoys GiGiFit and Teen Tastic.  He recently started attending Games with Friends and has been a Project Pulse and speech therapy participant.

I believe every single experience Johnny has had; every program, every setting, every exposure to something new has shaped him.  It’s given him confidence and enabled him to identify goals for himself.  His goals are our goals.  It’s our job—primarily as his parents but collectively with everyone on Team Johnny; family, teachers, therapists, friends, and in no small part, our GiGi’s family– to open doors, provide opportunities, and ensure he learns and practices what he needs to achieve them.

Johnny does, however, have an even peskier chromosome.  It’s the “Y,” the one that makes him a boy.  Parenting a teenage boy with 2 pesky chromosomes has loads of challenges, but that advice I got when he was an infant is as relevant now as it was then.  And truthfully—but you can’t tell him, some of my favorite parts of Johnny are his naughtiest.  His intelligence shouts when he is creative and mischievous.  I have watched him cleverly outmaneuver plenty of adults with purportedly higher IQs.  Case in point: Johnny’s favorite place in the summer is Lakeside, where kids under 18 can’t ride golf cart shuttles without an adult.  But why would you walk home on the hottest of summer days when you could wander over to the hotel, pretend to be lost, and maybe throw in a story about your negligent mother so some unsuspecting adult will call an unsuspecting security officer who will drive you home?  The staff is rotating and seasonal, so it works every time.  Brilliant!

Yes, he makes me laugh when I shouldn’t.  Yet, it’s what I think of as his gift that is the essence of Johnny.  Once, in a conversation about Down syndrome, his then grade school-aged sister referred to “God’s recipe for people,”  in describing the differences between people.  I still smile with the images in my head, God adding a little bit of this and that like spices in a pot.  Johnny is one of the most empathetic, compassionate, connected to other people I know—he has a sixth sense.  He remembers names and details about people.  If you cough slightly, he’ll check to make sure you are okay.  He will work a room and has a knack for gravitating to the person who needs extra care.  He consoles when someone has suffered a loss.  He touches people deeply, and I am in awe every time I notice it.  I picture God standing over Johnny sprinkling in that bit of extra chromosome and the hard parts that accompany it.  But then He added a whole lotta extra something else that created this kid who defies expectations in so many ways.  I consider myself pretty darn lucky to be his Mom.

Johnny, we are in awe of your zeal and zest for life. Your persistence and growth in all areas of life inspire us on a daily basis. You make each of us better people. Thank you for showing us how capable you are of achieving anything and everything you put your heart, mind, and soul towards.