When Matthew was seven years old, he received a final diagnosis that confirmed what we already knew. He had been living in a world where his gestures and verbal exclamations were neurologically motivated and although his school labeled him as difficult, a diagnosis of Tourette Syndrome gave us a starting point in which to help him navigate an often hostile and challenging environment. The mother who informed the school board that my seven-year-old boy was harassing her daughter in line by tapping her on the back while making high pitched sounds suddenly went silent. The superintendent and principal of Merchantville school who suggested that an alternate school may be beneficial for Matthew’s “unique personality,” became full of ideas about teacher education. These experiences taught me that even the educational systems we entrust our children to don’t always advocate for those kids who slip the bounds of “normalcy.”
It should have been obvious to highly educated administrators that Matthew was struggling with something other than a blatant disregard for the rules. His facial gestures, verbal tics and movements indicated a neurologically based condition that he was obviously struggling with; however, it was easier to appease a parent who had apparently complained about various school related issues in the past than to support a little boy struggling with internal mechanisms that caused his body and his voice to sometimes betray him at the worst possible moments.
It was from these early moments that my son first educated me and taught me what strength truly was. Rather than shrink from the loss of his best friend and others whose parents thought Matthew’s Tourette’s was apparently contagious, he made new ones. Ones who liked to dance, ones who liked to sing and ones who like to draw. Matt always rejoiced in his uniqueness. Even when the voice inside his head told him that throwing sheep up in the air during the Christmas pageant was frowned upon, those around him that realized why those sheep were airborne judged him with a different perspective. When he insisted on wearing a bow tie and jacket to his second-grade class, Ms. Ransome met with us to say other children were making fun of Matthew. The thing is he was happy. He thrived in his uniqueness. He had great friends who loved to dance with him. He had friends who sang with him in talent shows, and he excelled in his creativity as he loved to draw.
We had many calls over the years about him being bullied. He was punched on the school bus, thrown into trash cans and laughed at by others who asked why he made those faces and strange sounds. He responded by going out for the leads in the high school plays and by starting a punk band called “Iracles and the Greekonaughts.”
When he finally went off to college at West Virginia University, I remember driving away fighting back the tears and watching him in the rear-view mirror. I loved this little guy who was now eighteen and on a full art scholarship, but I also knew how his Tourette’s could
negatively impact others, especially drunken frat boys, as Matthew was not one to always back down from a confrontation. He wanted to know why you felt this way about him and then would often proceed to point out that they also had potential deficits, ending in unneeded confrontations.
A week later he called me to say, “hey dad, I got a bunch of Tattoos and I’m the lead singer of a Celtic Punk Band called “The gentlemen.” I smiled as I realized once again that Matt was always teaching others that differences are okay, that uniqueness is a badge of honor and that not conforming to everyone’s concept of normal is just fine.
I have spent my career working with unique and interesting people who don’t always conform to society’s expectations of normalcy. They continue to amaze me with their humor, dignity and strength. I live in this world with many others that chose this field because we welcome those differences and value the important contributions that they have to offer in their uniqueness.
I see that acceptance in the team that I work with as it is incumbent on all of us to nurture this uniqueness and educate others as we did with Matthew about why they deserve the same opportunities to be loved and accepted in a world that often perceives different as less than. I also get to see their amazing parents who love them and fight for their right to aspire and have the best lives they can have. This in turn inspires us to take up that mantle of support when we are with them.
I learned from raising Matthew to embrace different, and the importance of educating those whose perspective is clouded with misinformation. I realized that some adults will unfortunately see different as something to be avoided and that their children may grow up with that same perspective. I also learned that some friends stay and fight the fight with you and that new doors open. I also realize that embracing and fostering one’s innate uniqueness and individualism is often the most important gift you can give to those who interact with the world in their own ways.
Matthew still tics and Matthew still engages in involuntary movements; however, this unique kid just signed a licensing deal with Universal Studios to make a line of high-end toys and has done artwork for numerous famous celebrities and musicians. I asked him once, what drove him to be so successful.” He said, “You took me to a lot of concerts dad, and I wanted to show all those bullies and people that laughed at me that I was going to do something special.” He certainly did.
By: Greg Lineham