Oct 01, 2012
Jody and Philip’s story–having a son with an autism spectrum disorder
Tyler was born to Jody and Philip after years of trying for a baby. His arrival was a dream come true. He was an incredibly easy baby. He was beautiful and healthy. Tyler did not cry much, but liked to be left in his crib to stare at his mobile. Since he was their first baby, Jody and Philip did not notice that he babbled and smiled less than most babies. They did not notice that he preferred to look at objects instead of faces. Jody sometimes felt frustrated that it took so much work to get him to smile or respond to her ‘mommy-baby games.’
During his doctor’s visits, he was growing and gaining weight. The physician did not note anything amiss. Tyler’s first word appeared a bit late, but since he was a boy, nobody was very concerned. Tyler did begin speaking at 18 months, so that was a relief. What Jody did not realize for a while was that he was not speaking like most children, but repeating things other people or TV characters said. He said words, but did not actually seem to be using them to communicate. When he did not know how to say something, he did not point or make gestures to show her what he wanted. At playgroup, he sat by himself playing with trains. “At least he’s not biting like some of the other kids!” she thought. But she watched the other children, and noticed that they were talking more, interacting more, and playing different kinds of games than Tyler. Jody began to wonder if everything was ok.
Over time, Tyler became more and more different from his peers. He developed sensory hypersensitivities to noise and textures, and started having temper tantrums. Jody had a hard time figuring out what would bring on a meltdown. She took him to the doctor, but during his visit he played happily with the otoscope and sang songs, so the physician did not get to see anything unusual. The next couple of visits he had ear infections and strep throat, so he just clung to his mother like all children do when they are sick. Again, the pediatrician could not see anything of concern. Philip told Jody to relax. He said, “If the doctor says nothing is wrong, than we are just being typical first time worried parents.” Jody began to second guess herself. She told herself that Philip was right, that she was just inexperienced.
But Jody’s worries did not go away. She began to talk to her mother and her friends, asking them what they thought. “He’s just a boy,” or “He’ll grow out of it” said the relatives. Philip’s mother told her she should stop spoiling him and he would become more self-sufficient. Jody and Philip enrolled Tyler the best preschool they could afford. They had high hopes that the teachers would be able to help him talk more and play with other children. Preschool was a nightmare for Tyler. He became so stressed he withdrew to the train corner and screamed when anyone touched him. He was soon expelled for hitting other children who tried to touch ‘his’ trains. Jody quit her job to stay home full-time with Tyler.
After a few months break, they tried another preschool, hoping this time that a Montessori school would work. Tyler was able to stay for a few months before the teachers told him he would not be asked to re-enroll next year. Jody and Philip were stunned, they had thought everything was going well. “He’s very bright” the teacher’s told them, “but our program can’t meet his needs. We think you should have him tested” “There’s nothing wrong with him!” said Philip, “This is just the wrong school.” They found themselves spending more time arguing about what to do for Tyler.
Jody and Philip were facing increasing behavior problems at home. Philip worked long hours holding down two jobs. He didn’t understand why Jody was such a wreck when he came home. Jody knew that things were getting worse, but felt all alone. She was so stressed she began losing weight and having trouble sleeping. Tyler started banging his head on the wall when they tried to stop him from playing with his trains or watching his favorite video. He would spend hours pacing and talking to himself–reciting whole episodes of tv shows. When he was upset, he rubbed the skin on his lips until it was raw. Jody and Philip could no longer go out to eat or to visit friends without fearing Tyler’s meltdowns. Jody began avoiding the playgroup. She no longer took Tyler to her friends houses. “How on earth is he going to be ready for Kindergarten?” they began to ask. “Are we just bad parents?” they worried.
Then one of Jody’s old friends called out of the blue. “My daughter was just diagnosed with a developmental delay, “she said, “She’s smart, but somewhere ‘on the spectrum.’ We have been so overwhelmed with all this that I thought I was going crazy!.” When she heard about her friend's daughter, a light bulb went off in Jody's mind. "She's so much like Tyler!" she thought. Jody realized it was time to get some help. Her friend told her about psychological testing and how to find a good team of professionals. Jody took Tyler to a psychologist, speech language pathologist, occupational therapist, and developmental pediatrician. They received an Individualized Education Plan through the local school system. Philip wasn’t happy about having his son 'labeled', but he was done arguing. They were finally getting good advice about what to do. The reports from the psychologist, speech pathologist and occupational therapist opened the door for Tyler to attend the local public preschool program for children with developmental delays. He was finally in a classroom where he could thrive. Parent coaching from the psychologist helped Jody and Philip manage Tyler’s meltdowns, and an individual therapist for Jody helped her manage her own stress.
“We have come a long way” said Jody, “and so has Tyler.” Tyler received special help for a couple years at his school. By second grade, he was ready to go back to the regular classroom with some support. He made friends and even started playing weekend soccer. “Having a child certainly didn’t go as we expected,” said Jody, “But he’s still the best thing that ever happened to us.”