Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee

Koby (13), Autism, Henry County

"Jackie’s biggest fears concern Koby’s transition into adulthood and his inability to get off of the waiting list sometime soon. "

  • A Student interview of parent's Perspective
  • Posted on 8/21/2013

Jackie is the mother of daughter, Cowan, 14, and son, Koby, 13. Koby’s parents noticed that he was developing differently by age one. Jackie said, “I noticed that when Koby was around a year old, he wasn’t meeting developmental milestones or forming any kind of speech.” He was ultimately diagnosed with autism. Jackie and Koby’s father share joint custody of the children, so the kids spend half of their time with each of their parents. Koby’s disability allowed Jackie to start to see the world in a new way. She stated, “Koby gave me an incredible gift of how gray the world is.”

She also described several of her son’s strengths and challenges. Strengths include both his love for sports and his intelligence. He is also a positive energy in Jackie and her family’s life. His struggles include communication, as Jackie mentioned he is nonverbal. However, Jackie expressed that this weakness actually serves as a gift for others as it teaches those around him that you can actually communicate without words. When Koby attempts to speak, he communicates with intent, and people are sometimes able to understand him. Jackie offered that she is usually able to figure out what he needs because she has become accustomed to the way that he speaks. Further, Koby is able to communicate through writing. While he has a love for sports, he struggles with motor skills as he cannot throw a football.

Jackie and her children enjoy many activities. Cowan is on the volleyball team, and Koby loves therapeutic horseback riding. Jackie mentioned that she would love to be able to go to the movies but that this is not often an option because Koby is sensitive to such activities.  They spend their time enjoying the outdoors at parks, spending time with friends and family, and relaxing at home.

A typical day for Koby begins with an oatmeal bath. Here, Jackie is able to give Koby supplements through a syringe because he is still tired from the night’s sleep. The bath relaxes him, and he cannot easily run away. Jackie explained that the supplements are preventative medicines that keep him healthy. Next, she helps him get dressed, eat breakfast, and she takes him to his school for special education. After school, Jackie picks him up, gives him a snack, they pick up Cowan and either visit family or go out to dinner. Koby’s bedtime is between 9 and 9:30 P.M.

Jackie works out of town quite often and is in need of personal assistant services for Koby, as he is too old for day care. They have been on the waiting list for services for eight years, and they are hoping that one day soon these needs will be met. She also mentioned her frustrations with healthcare insurance, as she hopes one day it will cover proactive medicine. She wants to stay on top of things so that illnesses are prevented.

Jackie’s biggest fears concern Koby’s transition into adulthood and his inability to get off of the waiting list sometime soon. She is very afraid that he will not be able to get supported living in the future.  As she looks ahead, Jackie sees Koby having two roommates in a three-bedroom house. Moreover, in an ideal world, Jackie hopes that Koby has the opportunities to thrive in a residential setting, engage in activities of interest, and form relationships with peers. Also, she hopes that one day he will be able to get and maintain a job. 

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