When you are exhausted by endless days of caregiving, it can help to look for support from others who are also on a similar path. And today’s caregivers can look to those who trod that path before them. People like Cathe Carpenter.
A self-effacing soul, Cathe began to think of herself as a former caregiver. Her husband, Victor, a minister and published author, died in 2018 after a long battle with brain cancer and related complications. Her daughter, Gracia, diagnosed with encephalopathy and autism at 18 months, had multiple challenges before she died in July 2005 at age 42. Cathe’s daughter, Melissa, 54, contracted Rubella in utero during the 1964 global outbreak; she is Deaf with Rubella-related learning and emotional issues. Although Melissa is not now under her constant care, Cathe understands that does not mean she has stopped being a caregiver.
The Carpenters began their family in Boston in 1959, with the birth of their son, Tyler. Melissa and Gracia were born within 11 months of each other, in South Africa, where Victor had taken a position as a minister at a church for indigenous people. Cathe recalls, “When Victor asked, ‘Would you go?’ I said, ‘Why not, of course!’” As an infant, Gracia could not lift her head out of bath water on her own. “She did not look at me, she had sleep and feeding problems,” Cathe said. “Nothing made sense to her. Sight and sound were not in synch.” Melissa also was thought to have autism, until Cathe realized Melissa could not hear.
Cathe and Victor searched for other families with children with autism in South Africa and invited them to their home, along with their psychiatrist. This fledgling community started a support group and founded a school, which now flourishes. During this period, Victor was threatened with arrest and deportation for his anti-Apartheid work, and the family returned to the United States.
When her children were young, Cathe quickly learned that she had to advocate for the right education and services for her daughters. She encountered few physicians and educators who understood autism or knew how to care for children with Autism or Rubella Deafness. And in many cases, especially as a woman, Cathe’s inquiries and questions were not welcome.
“The prevailing professionals of the 1960s and early 1970s thought autism was ‘caused by mothers who were cold and did not want their children,’” said Cathe. “Others’ held a philosophy that disabled children had been horrible persons in a previous life, and disability was their punishment.” Cathe refused to accept these ideas.
She came to realize that education for learners with either Autism or Rubella Deafness was inadequate. While Rubella-linked learning disorder was ignored by professionals, Cathe saw Melissa's ability and love of learning in Melissa's eager interactions and constant visual attention. Overtime, however, professional dismissal of her opinions led Cathe to feel unsure of her parenting and herself.
Significant relief about her self-image came from a doctor at Children's Hospital in Philadelphia. "This doctor saved my life," Cathe said, "and he effectively saved Melissa's psychological life." He saw that Melissa depended on mutual closeness and commented to me: 'Keep doing what you're doing ...There is no need to separate you from your daughter. She needs you for good reason.'"
Cathe knew instinctively that it was possible to learn what her daughters—or any child with disabilities—needed by watching them very closely, “trying to get into their persona.”
“All my children have taught me. They are my teachers. Just because they can’t talk to you doesn’t mean they are not in there, communicating, showing you their needs.”
To illustrate her point, Cathe described how a nonverbal woman with Lou Gherig’s Disease learned Morse code and beautifully described to Cathe the patient hours of visual concentration that rewarded her with seeing the intricate openings of cyclamen blossoms on her bedside-table.
As her children grew older, Cathe continued to challenge obstacles and injustices. She believes in raising children with positive behavioral reinforcement. One day, Cathe saw a drastic change in Gracia’s mood when it was time for Gracia to return to her residential school. Cathe knew there was something wrong. “It took a long time to realize what Gracia was telling us and what to do about it,” she says. Cathe and Victor discovered abuse at the residential school and worked to move Gracia to a community group home near them.
Through the most challenging times, Cathe and Victor knew they had to take care of themselves so that they could effectively care and advocate for their own children’s needs. “If we were going to survive this and marriage, we worked on caring for ourselves. That’s such important work!”
In 1982, Cathe earned a graduate teaching degree from Boston College. She was already an active parent, serving as vice chair of the Parent-Teacher Association and co-chair of the Racial Ethnic Parent Council at Melissa’s school. Cathe took her advocacy further by taking a job as a teacher’s aide to “see what was happening” at the school’s Unit for the Deaf.
Later, at a citywide public school meeting, someone encouraged Cathe to get up and tell her story. With the urging of someone she knew, Cathe took the microphone and told of incidences she had witnessed - of daily taunting and segregation of the school’s Deaf children. She spoke against their practice of putting Deaf graduating students in the back row of the graduation stage, never having them cited or given public awards, and requiring a teacher to crouch near them to sign to them. (Cathe was accused of “spreading lies,” but she had the support of other teachers when she returned to teach the next day.)
“Teaching is advocacy; if you’re teaching without being an advocate for the child and helping the family develop their advocacy for that child, you’re missing the point,” says Cathe.
Cathe went on to work at the Children’s Hospital Developmental Evaluation Clinic, and later to teach in early intervention at Perkins School for the Blind, where she also enjoyed training other professionals’ for working with Blind, Deafblind, multiply-involved preschoolers. For a few years she also had the joy of travelling back to South Africa to conduct school-staff trainings for Perkins International.
Today, Cathe is still advocating. “It’s not finished,” she says. She volunteers with the Arc of Massachusetts, contacts local and national legislators about needs of people with disabilities “and other local/national/global issues.” She has been on Department of Disability Services Citizen Advisory Boards (CABs) “for decades,” and was granted emeritus status at the end of her terms on the state’s Human Rights Advisory Council.
Cathe’s advice to family caregivers is to ask questions and to research opportunities and services that are available to them. “A lot of families—even with adult family members—do not know the many organizations that can help them, if they get involved.”