Tennessee Kindred Stories of Disability

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

Darren (40), Other, Montgomery County

"I can’t even remember how long we have been on the waiting list. During that time life has just been so hard. I worry all the time. "

  • A Parent's Perspective
  • Posted on 2/21/2013

Although Darren was born in Pennsylvania, we have lived in Clarksville, Tennessee since he was very young.  Our family is just the two of us, and Darren has a rare chromosomal disorder that affects all aspects of his daily life.  He has vision and hearing impairments, and although he has corrective lenses for both eyes he has total hearing loss and does not have a formal method of communication.  He doesn’t sign or read lips, but he has his own way of getting over to you and letting you know what he wants.  Darren also has seizures, but they are currently controlled by his medication.  Darren loves to do puzzles and watch television, especially programs with motion. His favorite things are motorcycles, horses, and football.

Darren is now 40-years-old. He went to elementary, middle, and high school in Clarksville.  While he was in school, I was able to have a part-time job because Darren was supervised during the school day.  Once he graduated from high school, I had to quit my job in order to support Darren’s needs. Since then we have been living off of Darren’s SSI because I have no program or supervision for him during the day, and it is challenging. Two people trying to live off of that check is very challenging. Once I pay for our basic needs with that money, there is nothing left. My grandmother and uncle used to be able to take Darren for a couple of hours occasionally when I had essential outings such as a doctor appointment. Now, Darren is older and my uncle recently passed away and our options are limited.  

Although Darren’s challenges appear to limit his daily life, he does pick up things by association.  For example, he helps me with putting laundry away after it’s folded and he knows where everything goes in our house.  He knows how to ride a bike (but not how to apply the brakes!) and will occasionally go to the grocery store with me as long as he walks with me and helps me push the cart.  While he is dependent on me for help tying his shoes and toileting routines, he is moderately independent with feeding himself and getting dressed, and he does not display any problem or aggressive behaviors.

I can’t even remember how long we have been on the waiting list. During that time life has just been so hard. I worry all the time. I worry about Darren’s health and his well-being. I worry about money. We don’t have enough and I don’t feel I have options. It is really hard for me to take him out to different places by myself, so we just don’t go out much. He probably gets tired of being in the house, but I have no other help besides my grandmother occasionally. My biggest fear is the possibility that I could have to go to the hospital, which would leave Darren with no supervision. When he was younger I used to be able to take him with me because he was smaller, but now that he’s older it would be very stressful if I got sick and had to spend a couple of days in the hospital. We are lucky in many respects though. While Darren was in school and I was able to work, I bought a house, so we don’t have a house payment. But we have property taxes and insurance and I don’t always know how we are going to make it. Life is very stressful.

We used to get money that helped us to pay for things like getting Darren’s wisdom teeth taken out or clothes for him. We got it for about 2-3 years, but that stopped and it is really hard.

I got approved for the CHOICES Waiver through TennCare on October 31. We got that waiver because Darren has a physical disability.  I am now getting help at home three days a week, for about six hours each day. In addition to this assistance with his bathing routines and light housekeeping, CHOICES supplies his Depends and my home help is able to go with Darren and me to run errands, or they can stay at home with him while I run errands and go to things like doctor appointments.

While we are adjusting to getting services through CHOICES, my biggest fear has not changed much. Though the services have helped give me a little break, they don’t address Darren’s need to access community activities. Services are still limited. They’re not enough if something happens to me and I need to be away from Darren. I have family in Pennsylvania that would care for him once I am no longer able to, but I have no plan for the future. Even so, “you take it one day at a time.” 

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