NO PREPARATIONS FOR AUTISM IN JAMAICA

Published January 27, 2013 | By

Mother of severely autistic adult desperate for a miracle
Mom of autistic son says she is living in bondage
BY AINSWORTH MORRIS Sunday Observer writer [email protected]
Sunday, January 27, 2013

HERMA Spence says she has been living in bondage for the past two decades; a prisoner of poverty and homelessness as she struggles to care for her mentally incapacitated 21-year-old son Easton Glen Pryce.
According to Spence, since her son first showed signs of what doctors told her was a severe form of autism at age two, her life has been going steadily downhill and she is now at a point where she desperately wants someone to take him off her hands.
Herma Spence and her mentally incapacitated 21- year-old son Easton Pryce. (Photo: Karl McLarty)
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The last 15 years have been especially horrible, she said, as her son’s condition has only worsened despite all the medication prescribed by his physicians and psychiatrists.
She told the Jamaica Observer as she stood outside her father’s home in Albion Mountain, St Thomas — where she has been forced to seek temporary refuge — that she cannot envision the future without some kind of miraculous intervention.
“Living with an autistic child is like bondage. It come in like mi inna a cage. I want to move and I can’t move. I don’t have a life for myself. I am constantly in bondage and I am tired. I am just tired of it,” the single mother, who has no other children, said. She has no home, no job and no means to care for Pryce, who has been known to become violent.
Autism is a development disorder which usually appears in the first three years of a child’s life. It is a condition that affects the brain’s normal development of social and communication skills and is categorised in three stages: mild, moderate, and severe.
The tall, lumbering Pryce has been categorised as severely autistic. He tends to speak gibberish, is given to involuntarily rocking side to side, can barely feed, clothe or bathe himself, and is incapable of interpreting and following the instructions of any other human being. Controlling his violent outbursts has, for over a decade, been his mother’s trial.
Every day, residents of the small community said, Pryce can be witnessed walking around the town attacking people; throwing dangerous objects at anything, or anyone in his way. One of these random violent attacks occurred during the Sunday Observer’s visit with the family, where a cellphone being used by a member of the newsteam was slapped from his hands to the ground by Pryce.
He randomly screams short phrases or his mother’s name, or wanders around asking repetitively, “Yuh want bulla? Yuh want bulla?” “His behaviour is an embarrassment, especially around people who don’t understand,” his mother said mournfully, noting that she also fears others hurting him because of his behaviour, especially when he wanders away from the home at nights.
“I can’t feed him anymore and I can’t take it any longer. I am living and trusting in God, but with Easton, the more I try, is the more it seems like I am failing and this has been going on for nearly 20 years,” said the woman, who believes she is beyond simple depression at this point.
Her deep sadness has worsened lately as her father seems intent on kicking them both out into the streets if something isn’t done about the youth, whom they fear will hurt them physically while they are asleep at night.
“Right now, because of how he behaves, mi father out fi put mi out because him seh nobody, sick or nuh sick, nuh fi mash dung him place. Furthermore, him seh a kotch mi a kotch,” she told the Sunday Observer.
Her 70-year-old father, Kenneth Spence, confirmed Spence’s claim during a brief chat. “She nuh tell yuh seh a kotch she a kotch?” he asked.
Spence said she had noticed while her son was still a toddler, that his behaviour was unlike normal children. She related her concerns to the boy’s father — a man whom she said she had begun seeing after meeting him on a bus while travelling to work in 1990, and whom she thought at the time had great potential as a partner. But what had seemed to be a great connection, unravelled.
In the meantime, her son began to withdraw and she began to really worry about his mental state and sought attention.
“Before he started basic school, I realised that something was wrong with him,” Spence said. “He wasn’t doing certain things that normal children his age do, such as speech. I took him down to Jamaica Council, off Hanover Street in Kingston, and that’s where I first had an idea about him being autistic.”
Her life, like her relationship, started unravelling as well.
Spence told the Sunday Observer that when she gave birth to Pryce on December 6, 1991, she was employed as a seamstress at Lurl’s Fashion House located off Washington Boulevard in Kingston. She lived simply, but in relatively comfortable circumstances on Shortwood Road, St Andrew.
“Things weren’t that bad when he was born. I was working until 1994. I had to stop working because I had no one to keep him for me. I couldn’t take him to work,” said Spence, a trained and certified dressmaker.
She said that in 1994, she simply couldn’t fully comprehend what doctors meant when they said her son was autistic. She said although neighbours and friends tried to explain and advised her to put him in a special home for mentally-ill children before age six, the love she had for her only son compelled her to keep on trying to make a life for them both. She wasn’t about to simply give him up without a fight, she explained.
Today, that is a decision she regrets, given that what everyone warned her about has come to pass and she has finally had to face the repercussions of keeping a child who has grown into a violent and uncontrollable mentally disturbed man.
After Pryce’s father vanished from their lives, Spence said she went to the Family Court in downtown Kingston seeking assistance. They sent a social worker to visit her home and began some investigations to find the father, but after that single visit, she never heard from the social worker again.
“I was still unable to work and things were getting worse. I could not get him into school, so I also went to the CDA (Child Development Agency) when he was 13 years old. They said they didn’t have any space and they told me that he was already being well taken care of,” she said.
Spence, who was unable to pay for private care and special education, said after visiting that agency, she knew of no other place to turn to, and she lost all hope in Jamaica’s mental health system.
“It’s not that I never wanted to work. I wanted to work, but I had no one to keep him. I tried sending him to school and the teacher said, ‘Him can’t help himself’, so it never work out,” she said.
Her own health began to deteriorate, Spence told the Sunday Observer. She developed a severe pain in both legs and began to walk with a limp.
“At one point they (doctors) told me that a blood vessel keeps expanding, and they said there is a lump in one of my thighs, so that also forced me not to work,” she said, adding that she lived below the poverty line then, so she was unable to treat the condition and the problem gradually started affecting the other leg.
In 2003, the Christian woman’s only source of funds was the Full Truth Church of God located at 4 Shortwood Road, where she lived at the time. The stipend she received from the church was only able to buy food, but couldn’t pay rent and utilities for the one-room dwelling in which she and Pryce lived. So she packed up, left Kingston — the city where as a child, she dreamed of spending the rest of her life — and returned to her father’s house in St Thomas.
But this is another decision she regrets, as it has only made her situation worse.
“For the last 10 years, everything mi try fail. When mi did live a town, mi did have people who mi can talk to. Up here, there’s nobody apart from my father. Nuh church nuh deh nearby, like when mi did live a Kingston. And him (her son) is seen as an embarrassment, so people distance themselves,” she said.
“At the moment I am doing nothing much more than rearing 30 chickens. I’ve just started the chicken thing. Mi still a try. I want to work, because if I don’t help myself, then I can’t help him. If I can even get something with regards to sewing, I’ll happily take it,” Spence said.
“I came here with the intention of doing some farming. I planted some carrots and turnips, but it’s either the sun burns it out or the price isn’t good,” the obviously disheartened woman added.
At this moment, Spence believes the only hope she has for a better future lies within a kind person, a private organisation, or the State assisting her with her child.
“I wish there was a home that would be able to take him, because I can’t move. If I can’t work, then I can’t make things better for both of us,” she lamented.
According to Maia Chung, Cabinet-appointed member of the National Advisory Board for Persons with Disabilities and the founder of Maia Chung Autism and Disabilities Foundation, Jamaica does not currently have a public facility that caters to the severely autistic once they turn 21.
“As far as I know, there is no facility open for someone at 21 years old. There is no boarding facility,” Chung, who is also a mother of an autistic child, said last week.
Chung has been advocating the establishment of such a facility with the assistance of the Government. However, financing it presents challenges.
“Right now, one of the agenda items is advocating for a facility that can house the severely autistic because none exists. I have had discussions with a very high Government official about constructing a facility. He was all for it, but the challenge lies in co-ordinating the teams of the various ministries,” Chung said.
“You can’t build such a facility without help,” she added. “Ministries such as the Ministry of Youth and Culture and the Ministry of Health have to join for something like this to happen. Remember, they are youths also, so that ministry has to become involved.”
Chung said she sympathises with, and understands Spence’s predicament.
“When they are 21 years and older, they can hurt themselves and hurt people. Autism is at a crisis point in Jamaica. The Government needs to look at it because it is more prevalent now. The social support for the most vulnerable is not being addressed,” she said.
Kathy Chang, co-founder of the Jamaica Autism Support Association, wasn’t able to offer much more hope regarding State-assisted residential intervention for single mothers such as Spence.
“There are no major facilities islandwide to assist a mother like that. I would suggest that they visit their clinic regularly, see a doctor and get an assessment. Other than that, there are not many other options,” Chang told the Sunday Observer.
She urged mothers, especially those struggling financially, or who are living in rural communities across the island to seek intervention when their children show signs of autism before the child passes age six.
“There are stimulation programmes on Hanover Street in Kingston and offices that cater to children up to six years old are located islandwide,” Chang said.
She believes that very little can be done for Pryce now.
“To say that he cannot be trained at this stage is a major understatement. My son was toilet trained at five years old and that was a major accomplishment,” she said.
Diedre Gordon, Spence’s neighbour from her days on Shortwood Road, said Spence deserves the help she is seeking.
“She deserves a medal. She has been through a lot. I knew her after she gave birth to her son. She struggled a lot. She has fought many unbelievable battles,” Gordon said in a brief telephone interview.
“A dem woman deh yuh call madda,” she said