2015 Sarah Shaw – “Autism” Autisim “Everything was fine. He was right on cue with everything. He even had some words,” said Vicki Gurganus. “But then at about 18 months, he stopped paying attention when we said his name.” Her son, Zackary “Zack” Gurganus, now 16, was diagnosed with autism at 22 months. Autism is a developmental disorder that is usually diagnosed within the first five years of a child’s life. It affects the neurological development of social and communication skills, but it is still unknown whether the autism is caused by genetics or early childhood environment. Regardless of its cause, autism is life changing. While waiting for the Special Olympics Spring Games to begin, Zack clings to his father, Kevin Gurganus. Zack is nonverbal and is unable to voice his frustrations and worries. “We don’t know why he gets upset and all of the sudden has a meltdown to where he bites himself or somebody else or reaches out and pinches somebody or gets angry and bangs his head. We don’t know why,” Vicki said. “We have shed tears trying to analyze what triggers him. But we simply don’t know.” Zack gets frustrated while working with his occupational therapist. Zack has always been an active child. When he was younger, he would jump for hours and hours on a small trampoline in his bedroom. As he grew taller and outgrew the indoor trampoline, Vicki and Kevin bought a larger outdoor trampoline. Here, one of his therapists, Michelle, cheers him on as he jumps. “Right now we financially have help through Medicaid, which is such a blessing. We are able to have speech and OT here at our home, and we are able to have these wonderful workers who work with him,” said Vicki. “We don’t want Zack to ever be without the help he needs. We can do without pleasures for us in order to provide for him, but we couldn’t survive without his workers and therapists.” Michelle works with Zack on Tuesdays and Thursdays and usually takes him out into the community in order to expose him to new situations. Barnes and Noble is one of Zack’s favorite places to visit. With his childlike mind, he loves to sit in the children’s section and flip through picture books. “I know Zack will never live alone,” Vicki said. “He will either be always living with us or if he lives in a home away from us, it will be a group home. I would rather him live with us. He’s my son.” “Zack is still mentally very young in a lot of ways, like a 2-year-old, even though he is physically 16,” said Vicki. Zack loves to watch children’s shows and movies, replaying certain parts. He sits on a bouncing ball in his room, rewinding the movie so that he can watch the same five seconds over and over again. “When Zackary was little, we would sit on the floor, behind him with our arms and legs around him and hold him and rock him and kiss all over him and tell him we love him. And he would fight us. But we got past that,” said Vicki. “I’ve learned just to give him love, and that’s all he wants, lots of love.” “The older boys have always been really good about the fact that Zackary needs extra attention,” Vicki said. “But they’ve had a lot of heartache with the fact that their little brother has problems. They want to help out in any way that they can.” David runs with Zack in the assisted 50m run. Zack climbs on David like he did when he was younger and smaller, not realizing that he is almost the same size as his older brother. “Autism is difficult. But we feel that we are also blessed with autism. We look around and see these other children that have other issues. Zackary is not in a wheelchair. Zachary is not on a feeding tube. We are blessed with autism, the greatest challenge of our lives.” These images are copyright Sarah Shaw and are use here by permission. They may not be used elsewhere without permission.