Kathy Riley of United Families told the story of how she learned to advocate for her special needs son Thursday night.
During parent night of the S.T.O.K. fair for parents and children with Individualized Education Programs (IEPs), Riley spoke to a small group of parents about the importance of never giving up on their kids, and making sure schools and public places are aware of kids’ needs.
Riley adopted her son in a private adoption from a 14-year-old girl. R.D. would turn out to have a slew of psychological disorders, including ADHD, schizophrenia, and bipolar disorder.
Riley said she knew something was different with her son when he would capture bumble bees at the age of three, and play with the bees for hours without being stung. Doctors were initially not concerned with the behavior, Riley narrated, but the odd behaviors would turn into extreme violence. Once R.D. split Riley’s husband’s head open in the middle of the night.
Riley said she would put stacks of cans in front of her bedroom door at night so she knew when R.D. entered the room. R.D. was prone to stabbing and biting, and would go into fits of rage when his parents could not see or hear the things he saw and heard.
The Rileys were told they were bad parents, said Kathy. The parents were told to take parenting classes and that R.D. was not unusual.
R.D. could not be kept in any daycares or primary schools. He was sent to a Catholic school briefly, when Riley was told that R.D. was “not material for Catholic school.”
During the first grade, said Riley, his teacher took the time to learn how R.D. functioned, and R.D. made straight A’s. R.D. was extremely smart, but his behavior overshadowed his intelligence.
When R.D. was 10 years of age, the Rileys had been advised by a psychiatrist and therapist to have their son arrested.
“He was in shackles,” Riley said, “The judge went ballistic.”
The fiasco of the arrest had also illustrated how Riley had been lied to by professionals again and again; The psychiatrist and therapist had said if the Rileys went through with the arrest, they would be at the trial.
No one arrived at the trial, or ever returned Riley’s phone calls even 12 years later.
No one had told the Rileys that if they adopted a special needs child they automatically qualified for Medicaid and other services.
“I said, if I don’t help him, no one will,” said Riley to her audience.
The Rileys had been told for years that R.D. would never amount to anything, and when Riley discovered the severity of bullying at school her son withstood, she vomited.
Riley would become her son’s biggest advocate, largely by informing teachers and the general public what her son’s needs were, and what would happen if R.D. had a public meltdown.
“He liked to go to Blockbuster,” said Riley.
She realized she had to take R.D. in public but his meltdowns prevented her from taking him places.
Riley said she went to the Blockbuster manager and told the manager that she would be bringing R.D., and that if he had a meltdown not to worry; The situation may seem like it was out of control, but Riley knew what she was doing and would take care of any issues that arose.
When R.D. had a meltdown at Blockbuster, a man threatened to call the police, but the manager intervened and Riley took care of the situation as promised.
The Blockbuster example is how Riley would handle all new people in her child's life.
“I told one school what he needed,” Riley scoffed, “They thought they knew what he needed better. There was a broken window and he smeared blood everywhere.”
Riley’s point was fairly simple: Make people listen and do not accept alternatives that are known not to work because others think they know better.
Riley explained that she felt having a reward system and following through were extraordinarily important. Even if the child did something wrong, if the child earned his or her reward earlier in the day, then that reward should be given.
Riley said to work on one behavior at a time. Working on multiple behaviors confuses the kids.
Announce the kids’ successes, said Riley, and get the community to know the kids.
R.D. now attends college classes and speaks at national events. Riley said that at R.D.’s high school graduation he thanked her for never giving up on him.
“Never give up on these kids,” said Riley.
United Families is located in Batesville, and can be contacted at 812-532-3441 or 1-877-967-OCOF (6263).
Contact: Tess Rowing 812-663-3111 x7004