"We are the team. We are the advocates. We are it."
About: Addyson (age 9)
Age Range: 6 to 13 years
My name is Miranda. My wonderful family and I live in Bean Station, Tennessee in Grainger County. Except for a few years after college when I lived in Knoxville, Bean Station is where I was born and raised and has always been the place that my family and I have called home. My husband and I have a beautiful 9-year-old daughter named Addyson who has autism spectrum disorder.
At around 14 months old, I began noticing certain things that let me to believe that Addyson might have autism. Even though I had worked with children with autism in my line of work, I had an extremely hard time getting anyone to listen to and acknowledge my concerns. I initially presented my concerns to her primary care doctor. It took me 3 to 4 months to get an appropriate referral from anyone to have her tested. After different referrals and a couple of visits from Tennessee Early Intervention Services, my suspicions were confirmed.
Along with her primary autism diagnosis, Addyson also receives treatment for sensory processing and an attention deficit disorder. Addyson has both expressive and receptive language capabilities, but often struggles with how to utilize those skills in social settings. She has the ability to say almost anything, but she struggles in knowing exactly when and how to say it. For example, Addyson does not know how to make requests for things she needs, and often struggles with back and forth conversations. She can easily answer questions if you provide her with choices, but if you were to ask Addyson what her name was, she would most likely not respond.
Addyson's education has been a huge struggle for our family. The school system did not respond well to her and did not understand her needs. When she was in preschool, the school would call me almost every day. Legally, they were not supposed to do that. She was often upset and they did not know what she needed, wanted, or what to do in order to help her. They were kind people, but they did not have any training to help Addyson.
I was not impressed with the services offered to Addyson in kindergarten either. I did not feel like she was academically progressing in the ways I knew she was capable of, so I began homeschooling. I have continued homeschooling Addyson and she is now in third grade. Our community and school is very rural and while there is some homeschooling happening, I have not involved us in any homeschool groups or community opportunities. Addyson has some behaviors that make me feel I have to limit her interactions, because both children and adults have responded negatively to Addyson in the past.
Addyson has a tutor who has some special education experience and comes to our house 6 hours a week. We worked with a therapist to decide that Addyson needed another person to teach her other than me some of the time. It is important that Addyson interact with someone else other than me in her educational day. The tutor has done a fabulous job for the time she spends with Addyson. Her services are considered a respite care service, and her time is a benefit we receive from a local organization.
Unfortunately, while I know it is the best decision for my daughter, homeschooling Addyson has most definitely impacted our family financially. I had to stop working for a while, but now, I am able to work part-time to help support our family. Regardless, it has placed a financial strain on our family. In addition to our loss of income, Addyson will also be losing her insurance soon. Currently, Addyson has insurance through TennCare. She receives outpatient care for occupational therapy, speech therapy, feeding therapy, and vision therapy weekly. This would add up to about $500 a week without insurance, and unfortunately, we cannot afford that out of pocket. Finances are the main obstacle that will stop us from getting Addyson the services she needs.
With regards to medical care, Addyson has had a number of experiences with a wide range of doctors. She has a primary care doctor in Talbott, and that is who she sees when she is sick. Her primary care doctor is great with colds and other basic physical illnesses. However, beyond those physical illnesses, her primary care doctor is unable to help us with much. Because of her current insurance coverage through TennCare, we have not had any pressing issues seeing a wide range of specialists, from a neurologist to a GI doctor, and even an ear, nose, and throat doctor. Most of her appointments are in Knoxville about 50 miles away.
I wish we could bring the services that people with autism have access to in the metropolitan areas to Grainger County. I would love to know more about Applied Behavior Analysis (ABA) services to see if they would help Addyson. She is a great kid and I want everyone to know it. I want her to have the best possible outcomes, as any parent would. The reality is that the only daily support Addyson has is Jeremy and me. We are the team. We are the advocates. We are it.
Updated on Tuesday, January 9, 2018