""Finding health and mental health providers who fully understand how to work with adults with intellectual disabilities has been a much bigger challenge.""
About: Brian (age 39)
Age Range: 36 to 59 years
My name is Sue. I have three children, and we are originally from Michigan. When we retired 14 years ago, we moved to Tennessee with my now 39-year-old son Brian. We brought Brian with us because we did not want to leave him up there in Michigan; he was very lonesome after he got out of high school. Brian has something called William's syndrome.
There are some unique health issues associated with William's syndrome. There is a pretty prominent anxiety component. I'm a nurse, so I can advocate pretty well for the medical issues that arise. However, our challenge came when we first moved to Tennessee. Brian developed pseudo seizures. I thought he was having epileptic type seizures, and we have had him tested many times for epilepsy. He continues to have pseudo seizures, and while controllable, they have not completely gone away. They probably have an underlying cause of anxiety. In addition, four years ago, Brian had an acute anxiety break down and he was suicidal. As a result, the challenge became where to take Brian for something like this? Where do I take him for therapy? Although he is pretty high functioning, Brian does have an intellectual disability. Therapy might look different for him.
I've found out that a lot of adults with Williams syndrome have anxiety when they're younger, but it's usually associated with sounds and other various stimuli. As they age, anxiety levels can worsen and many individuals will face big challenges as a result in the adult years. I just couldn't find help for Brian. He was admitted to a psychiatric unit where they put him on drugs, then took him off drugs, and put him back on drugs again. I had him seeing a psychiatrist and a therapist. The therapist was just wonderful, but she had to totally adapt her techniques to Brian. She had to research Williams syndrome, and we were lucky she committed to that, but he was changing medications so fast that it was a challenging time.
There is another challenge as our sons and daughters with disabilities age. There seem to be a lot more health care professionals available to provide services to children with disabilities. Finding health and mental health providers who fully understand how to work with adults with intellectual disabilities has been a much bigger challenge.
We are lucky that Brian has had access to good therapists. When his last therapist retired, she actually went out to find him a replacement therapist. I thought Brian would benefit from long term, in-patient care, so that he could receive the right type of medication and therapy for his anxiety and with observation, but there aren't places that will accept people like Brian.
We really have been through awful times. At one point, Brian was so drugged that people would ask if he was okay. After we visited the Lurie Center in Lexington, Massachusetts, our life changed for the better. Brian is off almost all of his drugs now and is doing well, but his mental health problems are our biggest challenge. Financially, it costs a lot to travel to Boston to see Brian's two doctors once a year. I have received some financial help from the Williams Syndrome Association, but not by any means does that cover all of it.
Brain's challenges have definitely impacted our family. I am not taking the trips in retirement that my peers take. Although Brian is doing well, we don't leave him overnight because he is just not comfortable alone. We do leave him during the day, but not at night, so we are limited in any travel. In addition, I'm going to be 68 and I still feel like I'm parenting a 12-year-old. I worry about his hygiene, and he doesn't have enough social outlets. I'm constantly trying to make plans for him. Transportation is another challenge. We will have to, eventually, move back to Michigan where my other children can help with Brian as our health deteriorates.
Insurance has also been a challenge. Since Brian has an IQ in the 70s, he has never been able to receive benefits through Medicaid waivers. He does receive Medicare insurance because he qualified for social security disability through a job he had in Michigan. He has a part of TennCare, which is just medical benefits. I do feel lucky because under Medicare and the TennCare medical benefit, everything is paid for, except for therapy for behavioral health issues. As a result, I pay for the therapy out of pocket.
We have been lucky in terms of medical needs. You need to find a primary physician that will really take the time, and that isn't always easy. We had to change doctors a couple of years ago, and Brain's current doctor will listen to me and take in the suggestions that I bring back from the conventions and the conferences. The Williams Syndrome Association has also worked hard to identify these health issues.
Brian has faced many social issues as an adult. When he was in school, there was a lot going on and he was being helped and included, but all that stopped when he left the school system. I'm sure his mental health issues have been exacerbated by his lack of social contact. It's not just that we need more connection and resources, but we also need more opportunities for our kids so that they don't need all these physicians and don't have as many health problems.
Updated on Tuesday, January 9, 2018