Mothering the mentally challenged
By Roxana Kawall
Stabroek News
November 16, 2003
She was only twenty-three years old when she had her first baby, a girl. But it was thirty-five years ago, when there was a lot less information around - no television and certainly no internet. Her husband was almost as young as she was, four years older, and they were living out of town.
One day, nine months after the child was born, a young, male friend of her husband's came to practise racing his car, and asked to see the baby. He looked at the child and said: "Something wrong with this baby." Shocked, she asked what; the young man replied: "It breathing funny." She says since she herself had had no previous experience, and hadn't noticed anything, "this thing bothered me all night." The child had already had its six-week check-up, and nothing had been said then to her. In the morning she told her husband she was going in to town - a lot less easy trip in those days - to see the doctor.
She went to a city doctor, who she says did not even have to examine her baby, but said straight off when she told him the baby was 'breathing funny,' "yes - it would have a congenital heart condition." With hindsight it is obvious that the doctor was very experienced, but at the time it upset her greatly that he didn't even 'examine' the baby. Asking where the child had been born, he then added: "Didn't they tell you? Children like this generally have these heart problems. It's difficult to explain to you." Saying this, he took out a journal to help her understand. "It was as if my child's picture was in the journal he showed to me - it was as if I was looking at her. They all have the same look," she adds.
"But it was only when he started to read from the journal that I realised something else besides the heart was wrong with her." The doctor started to say that "Some people call them mongoloid," but she interrupted him, saying: "Are you calling my baby a dog?" In denial, she says all she could think of was that the doctor was calling her child a dog, obviously having mixed up 'mongoloid' with 'mongrel,' and she walked out on him in tears, and carrying her baby all the way, she walked to Mercy Hospital, where she says she "invaded" the hospital.
The doctor, however, received her, and started to check the baby's heart. "He didn't harp on the other part," she says. "The perceived insult was still rankling." The doctor at Mercy told her the baby had a hole in its heart, and he placed her hand on it. " I could actually feel it - where the blood was escaping," she says, making a squishing noise to demonstrate the sound her hand could feel. However, when the doctor checked the baby's birth files, nothing of all this was recorded there. He told her he would make an appointment for her to see another doctor that she should call the next day. "But I didn't bother with him", she says. " I left, knowing my baby had a bad heart - and something else no one wanted to tell me - and that 'something' scared me... I went to my parents' house. My mother had had nine children - but she couldn't see anything else wrong either, maybe because the child was dark. Her tongue used to protrude too, but I didn't know anything about that at that time."
However, she says another doctor had just returned to the country, which she knew through playing badminton with him, and so she called him; obviously still in a state of denial, the third doctor she had gone through for the day. He confirmed the baby had a hole in the heart, and would have a small brain. In a nice way he revealed what the 'something wrong' was. Down's Syndrome. "I was resigned by now to the 'something else' wrong; I wanted to know what I could do to correct it. He himself was not a paediatrician, so he called Dr Walter Singh at the Public Hospital, and I saw him at his private clinic the same afternoon at 5.00." The fourth doctor she had gone through for the day.
Perhaps because by the end of that long, long day she had - incredibly early - begun the process of resignation, less rage or denial was focused on this doctor, and she describes him as "beautiful." "He looked at the heart and started medication. Every two weeks I had to visit. Around the fourth visit he began to explain 'the other thing.' He said my baby could be trained, but must have vaccines."
Asked what the reaction of her husband to all was this, she says: "My husband would stand and fold his arms. I never saw a tear in his eyes in twenty-five years."
When the baby girl was just over a year old, Dr Singh started to make arrangements for surgery in Venezuela; he was not certain the child would live past three years with the hole in her heart. This was a government to government arrangement, but she would pay her own passage. However, there was another child at the time who was already going into heart failure; he was sent first, but died over there. When she went back to Dr Singh, he was in a state of deep depression over the boy who had died.
Explaining that all of this took place at a time of border tension, she says she decided not to send her girl, since she has been also informed that - in some cases - the heart closes over enough on its own for survival. Dr Singh had also decided to leave the country. However, before he left, she says she asked him if this would happen again, if she would have another child like that. He said they could find out, that both she and her husband could have tests. Her husband never went, kept making excuses, she said. She went alone. When her tests came back from abroad after 2-3 months, she says her new doctor said: "It was negative, it isn't you." She continues: "I never said anything to my husband - it was God's work. Why curse my husband for it."
Two more children were born then, four years and seven years after the first.
When the child was six years old, she was sent to the David Rose School for the Handicapped, where she was taught things such as how to hold a spoon. Her mother was told how to potty-train her. She says that for years she had to wake up twice a night to take the child to the bathroom, but eventually the child started getting up by herself, and stopped bedwetting at eight years.
The mother, who says she worked all her life except for two interludes, said her husband was always losing jobs, and when she heard his job was ending, she decided to go back to work, because she wanted to own her own home. She did not want anyone refusing to rent her a place because she had "a funny child." For a while she lived with his relatives, but later decided to commute every day from out of town, to work in Georgetown, dropping the child off at her mother's house, and picking her up again.
But what about that other sticking point in the equation - the infamous 'other people'? How did they react to a child with Down's Syndrome?
"In town, in years gone by, I went through hell," she admits. "She had a funny look - blank- some people would think it was contagious. Well in those days there were lines for food everywhere. People would part when they saw us, and I would tell myself this is one way to get through quickly. Everyone would feel I had done something to make her like that. One woman - an educated one! - asked me if I had been trying to get rid of her. Even a teacher - in special education! - said I did something to get her like that. I used to run home and cry. Or else 'buse' them. I would say 'Yes I did something - and if I stay near you, you will catch it.' It still hurts. So I don't get into arguments.
"Even my mother was ashamed - she used to hustle us through the back door. Having this child opened my mind to other people's problems which I never knew before. The disabled are third or fourth-class citizens, and I had to align myself with these fourth-class citizens. My child couldn't feel for herself - I felt for her and for them. I became like a disabled person myself - with the same rage and anger. I have had moments of extreme rage at other people who hurt her and other disabled people."
The child's sisters, the mother says, used to get upset at the reactions of other people. "I used to tell them don't say Down's Syndrome or mongoloid - no one will understand what that means - say you have a retarded sister." On the whole, in the early years, the sisters were concerned, but had moments of anger, she says.
However, after twenty-five years of marriage, everything broke down. The father, she claims, had never really had anything to do with the child, especially from when she was five or six years old and the physical defects really began to show. She was the one to take her to fairs and everywhere, except to work. Both he and the sisters were at heart ashamed to have such a family member. The father, she claims, told the girls they would never get husbands if people knew they had a retarded sister, and they started to hate their sister, after, she says, she had spent years trying to teach them compassion.
The father, she says, never really treated the retarded daughter well, although he was good to the other two. He would take away her food if she did not reach the table quickly enough. In the early years he had once suggested putting her in a home in England, but when she asked how often they would see her, because she was afraid the child would forget them, he answered, once a year. But when she calculated it, she realised that this was an impossibility. All money spent on this daughter he considered a waste. At one point when the mother had been away for two weeks on a training course, she came back to find big marks on the girl's legs. The mother threatened the father with the police.
The story around the child eventually becomes a war zone. Who knows under what stress and sheer tiredness all sides laboured, and how little help there was from outside?
Insults were traded; she says the father declared he had had to put up with 'this cross' for twenty-five years and threatened to put her out on the road, among other things. A violent scene ensued. "He came to me with a mortar stick," and she picked up a chopper. However, luckily the girl came out at that point. The mother said she thought, "if I die, who would look after her?" And if she killed him in the passion of the moment, the girl would suffer too. The mother left the house with her daughter.
But, after ten months, because the loss of her known habitat disturbed the girl, the mother got a court order to get back into the house, where all the locks had been changed, even though she had been the one instrumental in getting the house in the first place, and who had also paid off loan and mortgage after her husband had failed to do so. She then lived in the house, she alleges, "under a state of siege" from the whole family.
If she put food in the fridge, she claims she would find it in the bin; she could not use the stove, they would detach it from downstairs or pull out the plug; she had to wash at weekends so she could guard her clothes, most painfully her books were burnt; the girl was pelted with food and sometimes fed rotten stuff.
Eventually the others moved out, stripping the house, she alleges, even of the things she had contributed, like the curtains she had sewn herself, packing them into waiting lorries. After that, she says, she lived a peaceful life with her child.
She was petitioned for divorce, and is still fighting a ten-year battle in the courts for division of property, where files disappear and her cases are dismissed without her knowing, she claims.
As regards help, except for the David Rose Centre, this seems to have been self-help through the thirty-five years of her daughter's life. She once, she says, approached Social Services, but was only offered marriage guidance. If she was in court, there was nothing they could do, she reports, and no one came to visit.
Nonetheless, she herself took a course at UG and gained a certificate in Special Education as well as a BEd, taught in several schools, even went into farming, and was active in the Association for Mentally Handicapped Children, as well as in a host of other activities, including church activities. She would hire people to look after her daughter while she worked, sometimes at two jobs at a time. The caregivers, she reports, would initially be afraid of the girl, not knowing how to react to her. She admits her daughter hit one woman in the chest on her first day of work because she had forgotten to warn her not to take anything away from the girl, who was obsessive about certain objects, like her mother's handbag.
Certainly it was not easy; after the ten-month absence from their home, the girl became very disturbed; she started to tear up things, a habit which has persisted to today; she took all buttons off clothes, which then had to be padlocked. Eating was always a problem; such children tend to crave food, she explains, and her daughter would eat anything left outside. "There are problems because she doesn't think like a normal person. There is always a new problem - something which she has never done before. She can't speak - she lost all her teeth during the battle, because of drugs." The mother says she thinks often about what would happen to her daughter should anything happen to her. The one oasis seems to be their Roman Catholic parish, where the mother says people are kind, and the daughter a part of the community.
Incredibly, she says: "I do not totally regret my marriage, because it gave me her. If it had been another man I would not have had her. These children are a blessing... I have been in sticky situations with her, and I have always felt protected because she was with me. And somehow, she seems to know beforehand in some way, when it is that I am on my way home."
Autistic child
Another mother, speaking of her 36-year old son says: "It was only when he was a teenager that I realised the name of what it was he had. Autism. It was a gradual realisation, through reading books. Before, I thought he was just mentally retarded. As a baby he used to smile and pull hair and coo. Then at six months he stopped socialising. He withdrew into himself. The doctors couldn't say what was wrong. He would have minor seizures, like a minor fit; a momentary change in expression only a mother would notice. They put him on medication and he has grown out of that now. He was in the David Rose School from six years, but I took him out at fourteen. He lived normally at home. He was trained to eat, and fetch and carry. I had potty-trained him like a normal child, though."
She says she had to teach herself everything, and feels strongly he would have developed more if professional help had been available. He is, she says accepted by family and friends, and by their Anglican parish, St Phillip's. Other children - cousins- treated him normally. "I don't expose him to strange children," she says. "Autistic children don't socialise in any case. He is loving on his own, you have to wait for him to do so, but he does not like being approached."
She reports that since he was her first child, she felt badly about him, since she did not know the prognosis. However she says: "I never grieved over him, because he grew so normally in comparison to others. He can't talk, but I am grateful for my son..." She says that in the Convalescent Home she saw abandoned children, and was grateful her son was normal physically.
As regards help, she has a protective family structure around her, including the father, and the boy's sibling is very protective of him. She also has a long-time, live-in helper, and there is a grandmother who baby-sits. Although she feels, as does the other mother, that the best place for such children is a normal family, she nonetheless says she is angry that as a tax-payer she is paying for normal people but there are no facilities for her son, and she too wonders what will happen to such children when parents die.
Services, schools
In a way both of the above children are among the lucky ones, in that they both had educated mothers with personally rich lives who loved them and stood by them through thick and thin. It is hard enough for such mothers. But in a developing country, to whom does a poverty-stricken mother or father turn? While it is true some parents are indeed abusive, some parents who are condemned for, say, tying children, including normal ones, to beds, often genuinely do this and see this as their own way of protection - from matches, from getting knocked down, from being abused by others.
The Ministry of Human Services and Social Security, according to Mr Orville Stuart, is overloaded with a broad spectrum of needs: senior citizens, pensions, water rates, spectacles, funerals for the destitute, school uniforms, single parents with many children and no maintenance, the physically and the mentally challenged, which have to be examined case by case. Not surprisingly, monetary assistance for several categories amounts to $1,215 per month.
The Ministry of Education has recently set up a desk with Mrs Daphne Franklin as Co-ordinator of Special Education. She frankly says that most of the specially trained teachers have migrated, and there are a lot of untrained high school graduates in this area. Recently she says the Ministry of Education held an emergency workshop for the David Rose School, and will be holding another, as well as a three-day one at the beginning of next year, where understanding special needs, and the methodology and teaching strategies to get such children to learn will be taught. You also have to change methods according to how the individual child learns, she reveals. At the moment there is a VSO Special Needs teacher at the Cyril Potter College of Education, she reports. She says they would like to train more people, but the main problem is recruiting. At the moment, she says, the David Rose School for the Handicapped handles children from the Georgetown area, and at present has on enrolment of 140, which includes the hearing, physically and mentally impaired.
The East Bank Special Needs School at Diamond has an enrolment of 51 children, says Head Teacher Faye-Ann McCloud, which takes children from that catchment area from ages 3.9 to 20 years. She says the problem is that parents often have such children locked away, and they have to seek them out. The children are sent to Georgetown for a medical. However, if the disability is too severe, or the child is hyperactive and will not fit into the school, they cannot be taken - especially since she has no trained teachers at the moment. Currently she has four autistic children and a few with Down's Syndrome.
The New Amsterdam Special Needs School serves that area, and has a current enrolment of 36 children - a mixture of the hearing impaired and the mentally challenged. Headmistress Natalie Ramotar, who is passionate about her work, has been trained in Jamaica and has a diploma in Special Education. But she too has a minute staff of one trained teacher, and two teacher aides. "I would like to see children with disabilities recognised as children first", she declares passionately. "They have all the needs of other children, but people just see them as a disabled person." She states that special education is a function of education, that such children should not be locked away in special places, but have normal facilities. Such education she feels, should take place within normal schools, like for instance the Blind Unit at St Rose's. In the same way any mother can testify to the way children gobble up information from their peers, such children also learn from other children.
There are also volunteer groups such as the United Women for Special Children, who try to assess the various needs of such places and raise or obtain funds. As just one instance they pay a stipend for two teaching assistants as the New Amsterdam school, and helped raise the walkway level there recently. Certainly it seems a well-informed and active group. The current president, Mrs Geer, feels that "the parents need to be educated, but average people are working so hard, they have no energies left to push."
Other groups include the National Commission on Disabilities, the Open Doors Centre, and the St Barnabas School for slow learners, and the well-known Ptolemy Reid Rehabilitation Centre.
In the end it seems as if there is a lot of goodwill around, goodwill relentlessly stalked by that ubiquitous bugbear - lack of financing. One suggestion therefore about the way to go has been that private groups, such as parents, could found a school cum residential home, where parents can take their children home for weekends, and maybe even some afternoons, and where input can come from the various ministries and NGOs. This way some of the dreadful stress and temptation to batter would be taken off families, and children would have the benefit both of professional help, as well as family contact.
The benefit of getting professional help early enough for such children cannot be stressed enough. If left too late, autistic children for instance lose their chance of gaining language. Which comes around full circle again to a need for early diagnosis - and the choice of childhood mental problems is large: autism, asperger's syndrome, childhood disintegrative disorder, childhood schizophrenia, depression, mania and manic-depressive illness, suicidal behaviour, conduct disorder, separation anxiety disorder, somatoform disorders...
Autism
Some symptoms of Autism
- symptoms usually appear in the first year of life
- child prefers to be alone
- does not form close personal relationships
- will not cuddle
- avoids eye contact
- becomes excessively attached to familiar objects
- continually repeats certain acts and rituals
- may begin speaking later than other children
- may use language in peculiar way
- may be unable or unwilling to speak at all
- may repeat words as they are spoken to him (echolalia)
- may reverse normal use of pronouns eg using 'you' when referring to self
- obsessive resistance to tiny changes in familiar surroundings
- finds it hard to understand how other people feel, and so tends to remain isolated even into adult life
Down's syndrome (trisomy 21, mongolism)
Some symptoms of Down's syndrome
- physical and mental development delayed
- child tends to be quiet, rarely cries, muscles somewhat floppy
- small, round head
- face broad and flat
- slanting eyes
- short nose, flat nasal bridge
- tongue large and often prominent, fissured
- ears small and low-set, round or knotty
- palms - single transverse creases, characteristic dermal ridges
- fingers short; fifth finger often has two instead of three sections and curves inward
- space visible between first and second toes
- short stature
- ca 35% have heart defects