Stephen and Stephanie DeFilippis have two children, Christopher and Amanda, ages 13 and 10. Any parent knows that raising a teenage and a preteen can be hard enough, but Christopher and Amanda both are Autistic.
Autism spectrum disorder is a general term for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors.
"Christopher was diagnosed around age 2, when he stopped talking and he no longer had eye contact. He also stopped responding to his name. Amanda was also diagnosed at age 2 because she was developmentally behind other children her age," Stephanie explained.
According to www.autismspeaks.org, Autism now affects one in 88 children, and it is the fastest-growing serious developmental disability in the United States. There is currently no cure for autism.
"The most difficult thing for all of us is that they can't communicate their needs besides the basic 'I want,'" Stephanie said. "They cannot tell us if they are hurting or sick. Sometimes they cannot come up with the correct word for objects they want. They sometimes become frustrated and even cry, and we don't always know why."
In the past six months, Amanda, has become very aggressive both at school and home "She scratches her head and hits her head against anything hard. When she is upset she has also become aggressive towards anyone that is near her. Her teacher, therapists, and behaviorist have been working hard to try and reduce these behaviors, which can happen up to 100 times a day, but they are not having much success." Stephanie said.
Amanda's school has recommended she see a child psychiatrist that specializes in Autism as soon as possible. The doctor, however, does not accept the DeFilippis' insurance; therefore the visits will be extremely costly. "The initial evaluation alone will cost $1,000. Regular office visits after that could be as much as $350," Stephen said.
In addition to the children's autism, Stephen and Stephanie also have been adapting to medical issues of their own, which developed in the past few years.
Stephen has Multiple Sclerosis, which is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body.
Some of Stephen's symptoms include fatigue and balance issues. He has to walk with a cane. He also gets "brain fog" where he sometimes has trouble with short term memory. He also deals with depression. His conditions have rendered him unable to work. He receives Social Security Disability.
Stephanie has Lupus, which is a chronic, autoimmune disease that can damage any part of the body, such as skin, joints, and organs in the body. Stephanie experiences achy joints and tiredness. Like Stephen, she also gets brain fog, in which she will forget common words.
"We have been learning to accept help from others," Stephanie said. "If one of us is having a rough day, the other will take charge of the kids and house. We often 'tag team.' We support each other mentally, physically and emotionally."
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