"My basic hope and prayer is that I outlive my son."
The Family
Brenda is a real estate agent and has a 43-year-old son named Michael. Michael is both deaf and blind, has diabetes, has some developmental disabilities, and exhibits autistic and compulsive traits. He is an only child, lives at home, and is no longer eligible for the vocational rehabilitation and schooling options that the State of Tennessee has to offer.
Brenda is eager to speak with us about the challenges of having a child with disabilities in Tennessee. From housing to services and health care, according to Brenda, Tennessee has a long way to go.
Housing
Brenda would like to see Michael living in a group home, but she has not come across one that meets with her standards of quality care. She says that if she did find one, the transition would be difficult for Michael, because he is not comfortable with change.
Services and Employment
In terms of services offered by the State of Tennessee, Brenda is frustrated that the State continually cuts funding. She understands that the State needs help to put services in order, but finds it troubling that people with disabilities are just sitting around. Brenda feels that the State should find some way to balance the needs of people with disabilities with the high quality of life that every human being deserves.
Education
In terms of educational services, which Michael has completed, Brenda says the State also is lacking. Michael attended a special education school, and Brenda remembers there were a lot of students all in the same place with not enough specialized care and education. While she does feel it was better than nothing, she does not feel that it was a setting conducive to learning. After that school, Michael attended a school that caters to the education of students with vision impairments. He later attended a school that specializes in the education of people who are deaf or hard of hearing.
In Brenda’s opinion, Michael’s progress at the latter was the best of any school. On the topic of education, Brenda says “parents, most of the time, know children better than educators do, but they don’t want to take your word for it.”
The Future
Michael is an only child, so the prospect of having a sibling take care of him is not an option. Brenda does have a lot of family, but does not think it is appropriate or fair for them to “give up their lives and careers” to take care of Michael. “My basic hope and prayer is that I outlive my son,” Brenda tells us.
- See more at: http://kc.vanderbilt.edu/kindredstories/Story.aspx?id=3118#sthash.RwO3T4rf.dpuf
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