Connie and John Harmon and Grandson Kris Valera
The Harmons are a mix of cultures, generations and family structure that don’t meet the typical norms of a family caring for a child with a disability. Connie and John Harmon live in Sugar Land. They are in their 60s and thought they’d be retired and living comfortably by now.
They adopted a little girl when she was just 6 days old. At the age of 15 years old, their adoptive daughter gave birth to son Kris, who has autism. Unfortunately, she was unable to care for Kris, and the Harmons have had custody of him since he was 18 months old.
For the first 10 years of Kris’ life, he had severe behavioral issues. He had tantrums every hour that would last up to 15 minutes per episode. Connie had to apply restraints on a daily basis just to control his outbursts. He hit and physically abused her for years. Managing Kris’ behavioral episodes has taken a toll on Connie’s health. She has high blood pressure, four torn disks in her back and chronic chest pains. As Kris frequently ran off, she had to carry him almost everywhere for the first eight years of his life, resulting in a significant deterioration of her spine.
The Harmons have spent thousands of dollars out of their own pockets to care for Kris while they waited for services. They spent $1,000 a month for eight years on attendant services and $3,000 a month for more than 47 medications he took until they found the right combination for him to be able to function and live his life.
Like many other families who are caring for a child with a disability, the Harmons had no support available to them. In fact, Connie was not able “to build relationships with other people” or even go to church, an activity that was very important to her. Caring for Kris also alienated her from the rest of her family and resulted in suffering of her other children and grandchildren. The Harmons have sacrificed their spiritual, physical and mental health, as well as their financial security. They both work 12-15 hours a day to replenish the funds they have used caring for Kris.
They considered institutionalizing Kris because they were so emotionally and physically drained. Connie states, “We almost turned him over to the State as I couldn’t hold on. The thought of doing this almost put me in a mental hospital.” When Connie discussed this with her case manger, the Texana Mental Retardation Authority (MRA) offered them a Texas Home Living (TxHmL) slot to provide some relief as she got a few hours a week of respite. With the support of TxHmL, the Harmons decided against institutional placement.
After nine years on the waiting list, Kris’ name came up for Home and Community-Based Services (HCS) services. He now has an attendant whom Connie calls a “life skills coach” to teach him daily living skills and ensure his participation in the community.
Connie explains that she had “given up everything in (her) life so Kris could have one.” His enrollment in HCS has allowed her to return to the life she once had. She now has “time to take care of errands, pay bills” and, more importantly, “attend church.”