Bel Porto School for children with intellectual and physical impairments held an awareness day about cerebral palsy on Thursday October 3.
Sunday October 6 was World Cerebral Palsy Day.
Cerebral Palsy impairs muscle coordination and can affect breathing, bladder and bowel control, eating, and talking. It is caused by brain damage before or during a baby’s birth, or during the first three to five years of a child’s life. Brain damage can also lead to sight, hearing, and learning problems.
While there is no cure for cerebral palsy, surgery; physical, occupational, and speech therapy; and mobility and communication aids can help.
Kerry-Ann Phillips, a physiotherapist at the Lansdowne school, says those with cerebral palsy often go on to develop a mental illness, such as anxiety and depression, as they become more aware of their condition, and this can have an impact on their sleep, appetite, and energy levels.
Ms Phillips presented a slide show about cerebral palsy during the school’s awareness day, and guests took part in activities to help them understand what it feels like to live with the condition. In one activity, they paired up to describe a picture using only gestures and nods. In another, they had put buttons into a hole while wearing oven mitts.
Theresa Capito’s adopted daughter, Michaela, has cerebral palsy after suffering a brain injury at 6-months of age, prior to her adoption. Her daughter is in a wheelchair and has been at Bel Porto since she was 5. Now 18, she is in her final year at the school. It was a big adjustment for Ms Capito, 58, a single mom, to learn how to care for Michaela.
She also has another daughter, 33, and a son, 38.
“I have to watch her all the time. Our routine goes according to times which we have to be strict about. I have to dress and feed her when I wake up, and once she’s boarded the bus to school, I get myself ready for work.
“It is labour of love – she is like my own daughter. Our house is
big enough and the furniture
far apart so she is able to get around with her wheelchair easily. We have a chair in the bath, and a commode which helps with her condition.”
It can be hard for the parent of a child with a disability to have much of a social life, but Ms Capito said she had changed her life to accommodate her daughter and they often do things that “normal” people do.
“We go to markets, eat out,
go for breakfast, and go for walks like normal people do. I am just extra cautious and very protective when it comes to my daughter, and I trust very few people to take care of her. When I get home from work, I make supper quickly while she is busy with activities on her tablet. At 7pm she is in bed, and I get into bed as well and regain my energy for the next day.”
As her daughter has grown older it has become harder for Ms Capito to lift her up to dress and wash her. There was also the frustration, she said, of seeing her child being able to complete a task the one day but be unable to complete the same task the next.
“It can be frustrating, but you have to deal with that, sometimes they can do things and the next day not, and you have to understand that. It is very difficult to build relationships with people and stay connected so a visit or a phone call really helps sometimes.”
Asked what led her to adopt Michaela, Ms Capito said: “I fell in love with her as I had an immediate connection. She taught me to love unconditionally and has really taught me what it’s like to love someone with imperfections.”