Trish's Wrinkles

When I first met Trish, she spelled her name Trich. She said she finally got tired of it always being spelled incorrectly, so accepted the “sh” as her own. I don’t think I could ever do that, but like the rest of her life, she faces challenges with a determination that I completely respect.

Trish is a middle school special education teacher. Ironically, she learned her own children had special needs when they were just toddlers. Trevor is her oldest child, a 16-year old junior in high school. Trish knew something was wrong with Trevor when he was 2-years old because he didn’t talk. His doctor said it was because boys are late bloomers and told Trish she was just a nervous mother. By the time he was 3, Trish put him in the Easter Seals Speech Therapy program because she thought he had an auditory processing disorder. Trevor didn’t play with toys until he discovered dinosaurs at 4-years old. He couldn’t tell Trish his name or his age, but he could name the Archaeopteryx, the Ichthyosaurus, the Velociraptor, and his favorite the Tyrannosaurus Rex.

Although Trish was a special education teacher, she didn’t know a lot about autism. However, she started to suspect it could be the cause of Trevor’s problems. When he was 4 ½-years old, he had chicken pox and was taking a bath with aloe vera oatmeal. His baby sister was just 18-months old and accidentally fell over into the tub. She was face down and too little to pull herself out. Trish yanked her out after just a few seconds because she saw the tumble. However, she was stunned that Trevor did nothing to help, even while he was sitting next to her as she struggled with her head under water. He had no reaction at all, not even to try to push her up. Trish said she was devastated because at that moment she knew her son had a severe problem.

Trevor was taken to the Louisville Child Evaluation Center where he went through a battery of tests. When he was diagnosed with autism, Trish asked what the chances were of her daughter having the same disability. She was told not to worry about it – the chances were one in 10,000. The same month Trevor was diagnosed, Trish became pregnant with her third child.

No one really suspected that Leah was autistic because her language skills and vocabulary were strong at first. But Trish began noticing the same signs in Leah as she saw in Trevor. By the time she was 3, Leah was also tested and found to have deficits in all areas: language, occupational therapy, social skills, physical therapy. She was diagnosed with PDD-NOS, or Pervasive Developmentally Delayed Not Otherwise Specified, which was on the Autism Spectrum Disorder.

Leah eventually quit talking and began having a lot of problems with her temper. Trish began to learn sign language until speech therapy helped her develop her language skills. While Trish constantly drove Leah to different therapies, she began blaming herself for the disabilities of her children. Even today she acknowledges that she should be thankful for what she has, but she says it absolutely sucks. Autism has caused major problems in her marriage to my brother and they have been to marriage counseling twice. Trish said most marriages with one autistic child do not last, and it would be easy to quit - to just walk away. But Steve is the only person in the entire world who knows what they’ve been through and they have a special bond that no one else can even begin to understand.

After two of their children were diagnosed with autism, major study groups began approaching the family. They wanted to study them to try to establish a genetic link in order to claim the discovery. Trish filled out endless surveys, genetic questions, and family trees. They finally agreed to give blood to two substantial study groups because although it won’t help them, it could help someone in the future. Trish believes the autism affected her children because of a combination of a genetic predisposition and her environmental conditions. She and a college friend shared a dorm room with no windows; she doesn't know if old, stale air was part of it, but they both have autistic children. I actually had a room for several years in the same dorm, so feel very fortunate my own children are not autistic.

I asked Trish what types of behaviors parents should notice if they suspect autism in a child. She said parents should take notice when their children have delayed speech, prefer to play alone, and don’t play with toys. If they do play with toys, it may be just to line them up. She said autistic children also love repetitive motion; their eyes follow ceiling fans and wheels. Trevor used to walk around the house and repeat, "Have to walk my circles. Have to walk my circles." In other children, there is sometimes sensory deprivation; for example, a smell might bother them. Trish used to have vanilla all over the house because it was a calming, soothing smell. When Leah would get over-stimulated, they would swaddle her to calm her. She also went through deep body brushing therapy and tried a vitamin complex. These and other solutions were constantly paraded in front of Trish and Steve, and Trish now believes a lot of the ideas were from predators who offered "voodoo" answers that played on the fears and hopes of people with disabled children.

Like all children, Trish's kids have vastly different personalities. Trevor is a poor judge of character because he believes everyone is good. When bullies pick on him, he thinks they are his friends. Although he is 16-years old, he is four years behind developmentally. He makes good grades, but he still dreams about dinosaurs. He is very philosophical and introspective on religion. Unlike Trevor, Leah has a lot of common sense and strong social skills. She is very reliable, but struggles with reading and math. Leah is quite responsible and Trish trusts her to run the household if she has to step out for a few moments.

Trish and Steve have another daughter, Darby. She has ADD and a mild general anxiety disorder, possibly because she is aware that her brother and sister are different. Darby is a very independent young lady. We knew she had a strong spirit when she nearly drowned at 2-years old. She wandered away from the garage one day while her grandfather was putting luggage in his car. When she was discovered missing, numerous patrol officers came to search for her. They walked down to a pond behind their house, but saw no sign of Darby. One officer turned to look back toward the house and saw a tuft of red hair and a lime green shirt on the deck of a neighbor’s swimming pool. When he reached her, Darby was soaking wet from head to toes. Trish believes her diaper possibly weighed 20 pounds. But she was a "big girl," and climbed up and down the stairs to drop rocks in the pool. To this day, no one is sure how she managed to become sopping wet and not drown, but our family does believe in guardian angels.

Trish says her wrinkles are mostly caused by her concern for the future of Trevor and Leah. As they are getting older, she is unsure of where the children will end up. She worries that Trevor will forever live in their basement and have a solitary life, and that scares her. She hasn’t told her children that none of them should have their own children due to the genetic link. But that is something Trish can not control. Her heart's desire is that her children will grow up to be self sufficient and find jobs doing something they like. Like the rest of us, she just wants her children to be happy.