Conversations with mothers of autistic and disabled children

By Eulalee Thompson - BE WELL

Leba Tulloch is a beautiful 19-year-old woman. Her adoring mother, Eleanor Gayle, can't stop talking about her 'special daughter' with "jet black hair and perfect little fingers and nails".

She quips that if Leba were 'normal' she would hardly be able to walk down the road in her home town of Southfield, St Elizabeth, without bumping into potential suitors. Gayle said "if she were normal" because Leba was born ill.

"She was brain damaged at birth. She needed oxygen and didn't get any ... she can neither walk nor talk," said Gayle. "But, certain music on the radio she will listen to and understand and laugh. When you hear her laughing, she is listening."

Burnt out caregiver

Leba's diagnosis is cerebral palsy. Her adoring and loving family - mother, father, Milburn Tulloch and two siblings - notwithstanding, caring for a child with a disability, especially for a low-income rural family, is onerous. Gayle has been seeing to Leba's every need almost 24 hours, around the clock, for the past 19 years. She has to bathe, dress, feed and turn her several times every day.

"I have to do everything for her. I have to be at home around the clock. It's very hard because her father is a farmer but, right now, there is a drought and not much money," said Gayle. The already burnt-out caregiver, has not been able to work outside the home for 19 years, further limiting the family's potential income.

Her major concern though, is getting the best care for her daughter. She has to be constantly on medications, Gayle said, to help manage her episodes of 'fits'. The high cost of medication, toiletries and sundries is a strain on the family's income. In addition, when Leba falls ill, as she sometimes does, or has to go for medical check-ups, transportation and hospitalisation costs at the nearest hospital, the Black River Hospital, are added burden on this rural family. Every two months, Leba receives $1,300 through the Programme of Advancement Through Health and Education (PATH) programme. One of Leba's medication costs $1,100 for 11-day supply.

Rural parents catching hell

Gayle said that she tried to access benefits under the National Health Fund but was told that she must send two passport-size pictures of Leba, signed by a justice of the peace, Leba's birth certificate and tax registration number.

"I have the birth certificate but I can't carry her to the photo studio because it is upstairs and I have to lift her. So you see, parents in rural Jamaica are under hell when we have children with disabilities," said Gayle, now sounding frustrated.

Gayle's frustration is also echoed in the story of Maxine Whyte, another Jamaican mother caring for a child with a pervasive development disorder. Whyte's seven-year-old son, Rohan McKenzie, is autistic.

"It is very stressful. People will look at him and say nothing is wrong with him but it is like taking care of 10 children," said Whyte. "I can't leave him with just anybody because they will abuse him."

Loving but disruptive,

Autism is not a physical disability but is identified based on impairment in the child's social interaction and communication skills and on his or her preoccupation with some repetitive activities and interests. Whyte says that her son is very loving but, because of the autism, is aggressive, disruptive, noisy, doesn't sleep well and becomes 'outrageous' when he doesn't get his own way.

She is concerned that he doesn't eat properly as he is fixated on certain foods such as pastries.

"I try to feed him with natural vegetable and fruit juices so that he eats healthier," she said.

Like Gayle, Whyte (now a single mother since Rohan father died a few years ago) has to give her son 24-hour supervision, limiting her ability to work outside the home. On top of all this, Rohan is asthmatic and has sinusitis. Her biggest problem is financing Rohan's specialised care. He is more fortunate than others to have a place at the Promise Learning Centre, one of few schools here offering specialised schooling for children.

Support is available

With all their trials and tribulations, both mothers, Gayle and Whyte, mentioned an important part of their support structure - Maia Chung. Chung, a journalist, is also the mother of a nine-year-old son, Quinn, who is autistic. She founded the Maia Chung Autistic and Disabilities Foundation a few years ago and offers financial and emotional support to mothers like herself, who are trying to cope with children in need of special care.

"The biggest concern for Wykeham (Maia's husband) and me is the cost of care and the lack of facilities. Children with autism need speech and occupational therapies. The Promise Learning Centre offers specialised care for children with autism but it is a private school," she said.

Source: http://www.jamaica-gleaner.com/glean...h/health2.html

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