Growing Up, With Help
Obstacles and Painful Experiences
Pamela is well acquainted with the obstacles faced by families of the disabled when dealing with government services and staff. The Young family lived in Florida before moving to New Jersey in, and during their time in Florida they struggled with negligent and ill-trained educators in the public school system.
“Florida was terrible,” she said, making a dismissive motion with her hands, “They basically babysat for him, had no idea what to do with him. It was a joke. He was playing Nintendo all day long at school!”
She said that basic government services were completely inadequate in Florida, and that when she approached the agencies there for help, she was told that there was not even enough money to provide diapers for needy babies, let alone to organize support for tired parents of disabled children.
The Youngs are not alone in their criticism of Florida’s government-managed services for the autistic. A website called McKay-IEP-Matrix.org, administered by a mother of two developmentally disabled children, is designed to aid parents of disabled children in Florida understand state funding and educational services, and it is frequently listed as a resource on autism advocacy pages.
“It is a widely known fact that Florida does a poor job of providing a public education to children with special needs,” reads the introduction to the website on the homepage. The site goes on to outline the potential difficulties that parents of disabled children in Florida may face. It explains the process of filing claims against school districts, and encourages parents to inform themselves about what services and funds they are entitled to under state law.
Ashley remembered her brother regressing in his behavior and education while in Florida, or as she describes it, “Learning something and then going back and unlearning it.” Young himself recalled some of his behavior problems in his childhood.
“Ashley, remember, remember when I used to curse all the time? Remember I used to curse?” he said in the diner, pushing an enormous Western omelet around his plate, “Well, I don’t do that anymore, do I?” He does not, indeed, curse once during the afternoon.
The family decided to move to New Jersey because of its reputation for superior education, treatment, and research programs for the autistic. But even there, the family struggled when Young, at 17, went through severe behavioral problems due to medication changes. He had to be temporarily hospitalized and removed from their home.
“We had to go to court,” Pamela said, “We needed crisis intervention. They wanted to put him in a crisis group home, but the school district wouldn’t pay the residential portion. So the school district sued DDD”–the state Division of Developmental Disabilities–”and we sued them both. And we won.”
She recalled that her son, provoked by his medication cocktail, once locked himself in the basement; she had to call the police to remove him from the house. Her eyes brightened momentarily with tears. Ashley’s face reddened and she excused herself from the conversation. They both described that time as the most painful and frustrating of their experiences with autism.
