34 The QUEE NS Courier • june 30, 2016 for breaking news visit www.qns.com FAMILIES IN CRISIS ELAINE AND CHRISTOPHER BY CHARLIE PERY i editorial@qns.com/@QueensCourier Governor Andrew M. Cuomo signed a 2013 budget proposal that cut $180 million in aid to the Office for People Living With Developmental Disabilities (OPWDD). The Medicaid cuts have left many with limited state and federal programs to meet their needs. We will be running a series of articles following families and their children living in crisis. They are living with developmental disabilities and autism. Elaine Bert was throwing up the night after Mother’s Day; her body was rejecting medication prescribed to treat her diverticulitis. She could barely breathe, calling out to her 15-year-old son Christopher for help. He knew what to do. Chris picked up Elaine’s cellphone and handed it to his mother. Elaine frantically typed in the name of her doctor. He yelled into the telephone, “My mom is sick. Hurry, you have to help her!” After giving the doctor Elaine’s information, Christopher rushed to the neighbor’s house. They drove her to the emergency room where she spent the next week in a Long Island hospital. “Here he was failing high school but he saved my life that night,” Elaine said. Christopher Burgos is one of 127,000 people living at home with autism in the United States. He was first diagnosed in 2002 when he was 18 months old. A routine three-in-one shot led to an appointment with a North Shore neurologist. His mother remembers him having seizures and fevers. Christopher stopped making sounds and wouldn’t eat. “He became very inward,” Elaine said. Christopher still has trouble putting words together, according to his mother. He wasn’t able to speak until he was 5 years old. Even then, he was only able to say please and thank you. He has his struggles with school. Last semester, Christopher only passed two classes: gym and art. He failed math, English, social studies and science. His mother says the work requires a higher state of thinking than Christopher is capable of. His high school teachers think it would be better for him to transfer to an alternative vocational school where he could learn some job skills. The school board has labeled him an “atrisk” student. Elaine has made peace with the fact that he will never go to college. Elaine believes the school has dropped the ball in giving Christopher the education he needs. She has had to write numerous letters to the school board to make sure her concerns over the teachers’ abilities to relate information to Christopher in a way that he can understand. “I don’t think I should have needed to do that,” she says. His mother is always asking questions to help Christopher think deeper. He has a dedicated belief in God, so Elaine is always asking him, “What would Jesus do?” This helps him to think a little deeper and solve basic problems. Christopher would go to church, sit down, and begin to fidget at the service. People would stare at him, especially his eyes. Elaine has been taking him to different churches in Nassau County until she can find one that accepts his uniqueness. “I just worry about what’s going to happen when he turns 18,” Elaine said. “What is he going to do after I die?” After Elaine was rushed to the emergency room, she spent the next week in the hospital. “I was in pretty bad shape,” she said. “I had tubes hooked up all over me.” Christopher came to visit his mother every day. One evening, Christopher cried with Elaine as he held her hand. Sitting next to her hospital bed on a leather couch, he remained strong for his mother as he told her, “I’m here with you, Mom,” he said. “Everything is okay.” For the next five days, Christopher would be driven by his mother’s colleague Tina Marino to sit with Elaine and hold her hand. Christopher always nodded his head to the music of his headphones as he gripped his mother’s hand in the big, empty hospital room. “He just loves heavy-metal rock music,” Elaine said. With her son’s support, Elaine recovered from her fight with diverticulitis. She’s cut nuts and granola out of her diet under her doctor’s orders. “He tells me he loves me every day and kisses me on the forehead,” Elaine said. “I didn’t have that before, to be honest.” Before the incident Elaine would always try to get her son to give her a kiss but he never did. He had never even said, “I love you.” Chris is looking forward to attending the Fellowship of Christian Athletes (FCA) summer camp next week. Peers see him as quite the social butterfly. He’s very friendly. He shakes hands and gives, as Elaine calls them, “bro hugs.” He is always willing to help out with anything. His mother said no matter what is needed of Christopher, he responds with, “I got it.” Until he heads to camp, Christopher will be spending most of his time on the internet watching YouTube videos and checking out Facebook. She says Chris still struggles to make friends. No one is calling or coming by the house to hang out with him, so he turns to adults for companionship. “He needs more social interaction,” Elaine said. “He needs a big buddy.” Elaine is 55 years old now. She said she was raised in a broken home and never expected to have children. She got married and was divorced, but she never once regretted having Christopher in her life. “I just want my son to have a normal life,” Elaine said. “I want him to feel loved and someday fall in love.”
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