Parenting a child with disability or multiple disabilities can be a big challenge and often the challenges felt like strong tidal waves charging at us, attempting to make us lose our balance, admit defeat and give up. The love for our children forced us to stand bravely against the odds. The inadequate SPED system, the high medical needs, the ignorance from others, insensitive stares/remarks, throwing us ridiculous judgement and lack of govt support will make us lose our foothold. Although we/I stood strong but do you know I am very tired? Do you know parents will age and the feeling of leaving our special needs child behind? We don’t want to be isolated, we want friends and relatives who tried to understand our predicament. A lot of times, we find ourselves alone because normal people/families failed to understand special needs families. They forced me to flee, stay away so that I won't be hurt, frustrated or irritated by them, eg their parenting skills.
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More than a village needed to raise youths with complex care needs, Channel News Asia, 17 Jun 2017
Thirty years ago, the line between paediatric and adult medicine was more clearly defined. Children either made it to adulthood, or they didn’t. But over the years, medical advances meant that more and more children with severe congenital or acquired conditions are surviving into adolescence and even early adulthood.
Yet the reality is not plain-sailing: Many live longer but with issues when it comes to walking, swallowing and even breathing. Some have life-threatening complications. So in some sense, these youths are “life-limited”.
Moreover, because these young people have a congenital condition, it is difficult to transit them into adult services, even when they are no longer children, going by age criteria. Many of them need constant care and are dependent on medical technology. So paediatric services all over the world have developed ways to deliver complex care.
COMPLEX CARE PATIENTS HAVE MANY NEEDS
There is no universally agreed definition of complex care, but in general, the term refers to the care afforded to children and young people who, as a result of their underlying conditions, have multiple care and treatment needs.
Youths who fall under this category have conditions such as severe cerebral palsy, a complex metabolic or cardiac disease, progressive neurological conditions. or some form of chronic disease involving the failure of one or more organ systems. Their needs are many and may include dependency on multiple medical technologies including mobility aids, feeding tubes, oxygen machines or assisted breathing devices.
COMPLEX CARE PATIENTS ALSO REQUIRE SIGNIFICANT FINANCIAL SUPPORT
It comes as no surprise that a number of these youths end up being home-bound. Often, the only time they leave the house is to go to the hospital. They may have to give up going to school, which increases their risk of social isolation.
But that is not all. There is often a need for home physiotherapy, psychosocial support and financial support. Home equipment is expensive, and along with the costs of consumables such as suction catheters and medications, there is also the additional costs of caregiving which requires either hiring a domestic helper or a family member stopping work to provide care. So there is considerable financial burden. While some financial assistance is available from government and charity sources, many families still end up financially and emotionally drained.
OUT OF SIGHT, OUT OF MIND
As these youths are largely home-bound, they are essentially “invisible” to the community at large. Some are fortunate to be linked to support organisations like the Muscular Dystrophy Association of Singapore or Club Rainbow, but there are many more who cope as best as they can on their own.
One might also argue that severely disabled children are less “appealing” to donors than a child with cancer. While thousands queue up to shave their heads to raise funds for children’s cancer, there is barely any public awareness of youths with complex care needs.
BRINGING CARE HOME
The National University Hospital's (NUH) Paediatric Home Care Programme has cared for over 40 patients since its inception in 2014. About 30 per cent of patients admitted to the programme are over 16 years of age, and the oldest is 37 years old.
All of them have complex medical issues and are dependent on machines including ventilators, suction machines, oxygen machines or feeding pumps. Only patients with the most complex cases are accepted into the NUH programme, because they face the most challenges, medically and socially, and are in desperate need of help.
Check-ups at the hospital are a major logistical exercise – requiring not only an ambulance transfer, but also the ability to bring along all equipment. In the past, this would have meant parents delaying going to the hospital until there was “no choice”, for instance, if the child was severely unwell.
Home visits by doctors were a ray of hope in this regard. These could ensure that the child received not only regular reviews, but also timely assessment and treatment if he or she became unwell. Hospitalisation, if required, could also be arranged via a direct admission, rather than having to go through the Emergency Department.
PAEDATRIC PALLIATIVE CARE IS NOT END OF LIFE CARE
Palliative care is not merely end-of-life care. This is especially true for children and young people with a life-limiting illness. Paedatric palliative care (PPC) should be seen as providing an extra layer of care, as one of many partners in supporting youths and their families through the stages of the patient’s illness and growth, and all the way until death.
In countries like the UK, PPC teams often care for children over a number of years, working with the child’s community- and hospital-based care teams. Children’s hospices provide day care, home visits and much needed respite care, while community care teams usually takes over for one to two weeks, to give family caregivers a chance to take a break, and spend quality time with the patient as a family without the worries of day-to-day caregiving.
Senior Minister of State for Health Chee Hong Tat said that the ministry was working with non-governmental organisations to improve public awareness, as well as enhance the quality and accessibility of palliative care, at the Committee of Supply debates in April. (Photo: Reuters)
PPC services also help families clarify wishes for care and treatment, and gradually to decide on an end-of-life care plan, so that every child can be treated with dignity and respect. In Singapore, this is provided at home by StarPALS, the Paediatric arm of HCA Hospice Care, and they will continue to provide bereavement support to the family following a child’s death.
The experience of StarPALS is worth mentioning as it does reflect the world of complex care. Over a five-year period, no fewer than 49 patients referred were older than 19 years of age. Fortunately, nearly half have been discharged as their condition have stabilised to some extent.
MANY HELPING HANDS, LEAVE NO ONE BEHIND
In 2015, Minister Chan Chun Sing said: “In a hyper-competitive society, what unites Singaporeans is a spirit that no one is left behind”. He was referring to social determinants like poverty, but the reality for complex care children is that they and their families are already left behind. They are excluded from society and normal social activities. They are excluded from the dreams of ordinary Singaporeans.
If a society is defined by how it cares for its weakest and most vulnerable, then we need to acknowledge this “invisible” group and their devoted families. As a group, they show great heterogeneity: Their underlying illnesses are different, and each young person and family is unique.
What is certain is that this is a journey that evolves over time, and with it comes the challenges of changing needs and aspirations. There is a saying “it takes a village to raise a child” and for a complex care child, it takes several health disciplines and multiple agencies to provide continuing support. But that support should come not just from hospitals, or from charities, but from society as a whole, because they are Singaporeans too.
Dr Noreen Chan is head and senior consultant, at the National University Cancer Institute of Singapore’s Division of Palliative Care. Dr Chan also acknowledges the contributions by Dr Thong Wen Yi who is a consultant at the National University Hospital’s Division of Paediatric Critical Care and Dr Chong Poh Heng who is the medical director at HCA Hospice Care.
This is the seventh commentary in Channel NewsAsia's series exploring key issues and challenges facing patients with terminal illnesses and care at the end of life.
Read the first commentary on what well-being means for someone with terminal illness here.
Read the second commentary on the challenges faced by youths who contract terminal illness, for whom growing old isn't an option here.
Read the third commentary on the debate on whether at life's end, people should spend their last days in the hospital here.
Read the fourth commentary on how hospice care can offer the terminally ill a ray of hope in those last days here.
Read the fifth commentary on why and how Singaporeans should go about planning their passing here.
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AS: Keen to raise a child with special needs? You have the courage to face and willingly take up all the related challenges?
You know the odds so would you abort?
The constant battle with special school, doctors, insurance company, caregiver/FDW, etc is exhausting. Some people simply don’t give our kids a fair chance to live at affordable costs and yet lied they are doing a lot.... claimed many policies and subsidies are in place.
Hubby's company medical benefit is not extended to my child with congenital diagnose. We are penalised by our govt/society/insurance for giving birth to a child with special needs..... a human yet unable to contribute.
Advocates who have no real experience in raising a special needs child, qualified to give such advice? Yes, it is a life but UNBORN. The world is cruel, I don't believe in thinking everything will turn out fine, all the odds will suddenly disappear nor do I believe the child/unborn with microephaly will miraculously recover and bring light to the parents. You're not in our shoes! It is a life long journey, not something you can terminate if you can't cope or realised you've made a decision too impulsive and unrealistic.
I pity the pregnant mummies, I feel sad they have to go through this but holding on and then deliver a special needs child .... a life, a baby who can breath in your arms but you can no longer write off isn't an welcomed idea nor the baby given to you can be considered god blessed/special gift to make you become a better person.
自欺欺人，后果是吃尽苦头，没有回头路， 一生伴着无法割舍的爱与痛。我爱我的女儿但并不代表我无怨，能乐观面对现实的残酷，人们异样的眼光，社会的薄情与自私。
I have aborted an 11 weeks unborn due to abnormality, after my special needs girl. It wasn't an easy decision but that foetus had to go.... eventually. After more than 10 years, that unborn still lives our heart. I still feel sad but I've no regrets nor do I felt that I've done something cruel/unpardonable. If you think I'm sinful, why not take this opportunity, get yourself/pregnant loved ones infected by Zika and then "talk big"... preach by crossing your heart. 己所不欲，勿施于人
In my opinion, doctors live in ivory towers, don't know how patients and their families feel and needed most. If the 'defective child' is born and you can't get on with life.... not what you've imagined, took things too lightly or being brainwashed by somebody who don't know well about raising a special child, do you employ domestic maids as long as the child live so that you can relinquish your role and keep both eyes shut? 眼不看为净, 不过分吗? 以为是善良之举/不忍杀生却是对自己残忍并奢望别人能体谅.... 天真是要付出巨大代价!
Don't write off babies with microcephaly, 8 Sep 2016, ST Forum
Dr Chew Shing Chai's response to the possibility of microcephaly in foetuses from mothers with the Zika virus raises important questions about children with intellectual and developmental abnormalities ("Zika a limited but difficult fight"; last Thursday).
His conclusion that "there is no treatment and abortion is the only alternative" for a foetus diagnosed with microcephaly reflects a line of thought equating babies having developmental abnormalities with the termination of their lives. According to this way of thinking, such children are considered to have lives not worth living.
While it is certainly not easy to bring such children up, they should not be considered burdens to society to be terminated at all costs, but rather, as gifted individuals who are more than their disabilities and who form an integral part of a gracious and mature society.
Furthermore, while it is true that microcephaly is often associated with learning disabilities and neurological problems, there are cases where the child is born without such conditions. Also, the severity of microcephaly is not predictive of the level of disability the child will have. Hence, the microcephalic baby should not be written off but be approached with compassion and hope for the best possible outcome.
Current medical literature cautions that microcephaly may not be accurately diagnosed until later in pregnancy, and in some cases, only after birth.
From this perspective, recommendations which call for "abortions to be extended to 28 weeks for Zika-affected microcephalic foetuses", are untenable and reveals the arbitrariness of the premises on which abortion is based.
We know that the validity of the causal relationship between Zika and microcephaly is still being studied and that local experts believe that the rate of microcephaly in Singapore is more likely to be around 1 per cent.
If this is true, then the risk of microcephaly in a Zika-infected pregnancy is about the same as the risk of having a birth defect in any other pregnancy.
Instead of falling into "microcephalo-phobia", let us focus our efforts on preventing the spread of the virus.
The Government should not extend the abortion limit, but work to eradicate mosquito breeding and provide assistance to families with intellectual disabilities so that we can allow the flourishing of both the abled and disabled alike in our modern society.
Colin Ong Eng Choon (Dr)
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It Changed My Life: She lost everything but finds new meaning in helping others, Straits Times, 19 Jun 2016
Ms Aneez Fathima is momentarily stumped when she cannot remember the name of the college where her late husband graduated with a degree in computer science. "I'm starting to forget him," she says, her eyes turning teary. "For seven years, I couldn't forget him. My counsellors and friends have been telling me to bury him but it's so hard," says the 39-year-old. Their advice is understandable, for Mr Mohamed Farook left her in the most painful manner.
On April 24, 2009, the then 36-year-old jumped off a block in Bukit Batok East Avenue 3, taking with him their only child Faheem, seven. In suicide notes he left behind, the software engineer said he did it because of health problems and he wanted to spare his wife the burden of bringing up Faheem, who was autistic.
The tragedy upended Ms Aneez's life, turning her into an emotional wreck. It took six long years before her faith and loved ones pulled her out of her pit of paralysing misery. Today, she channels her grief into helping others. She works as a para counsellor at Club Heal, a charity offering rehabilitation and counselling services to those suffering from mental illness.
Her biggest dream, however, is to start an initiative giving emotional and psychological support for caregivers with autistic children. Shy but bubbly, the 1.68m English Literature graduate was born the youngest of three children in Thuckalay, a town in Tamil Nadu, India. Her late father was a public servant and her mother, a housewife.
"My father was very loving but very strict. He was a very religious man. He never took us to the cinema, and there was no TV at home although there were a lot of books and magazines," says Ms Aneez who shied away from the company of boys when she was growing up. "The only men I knew were my father and brother-in-law. My father didn't even allow me to talk to some of my male cousins."
After obtaining her Higher Secondary School Certificate - India's equivalent of the A levels - she read English Literature at the Sree Ayyappa College for Women. Her father was keen on her pursuing her master's degree when she graduated, but again at a women's college. However, her brother- in-law, who is a senior civil servant as well as a poet and writer, encouraged her to do it at a co-ed university. "He said he would take care of my father who respected him a lot," she says. That was how she ended up at Scott Christian College in Nagercoil.
"My father said: 'If I hear of you doing anything with boys, I will stop your studies'," she recalls with a giggle. "I was already 22 but it took me three months before I could talk to a boy. I was so shy." An attempt to find her a suitable husband fell through after she graduated, so her father sent her to Kerala instead to sit the highly competitive Civil Services Examination.
Known as the "mother of all examinations", it determines who is good enough to get into the premier Indian Administrative Service. Ms Aneez took nine months to prepare for the exam, as well as another one set by the University Grants Commission which would allow her to teach at an Indian university.
She did not make it through the first, but passed the second. While waiting for the results for both exams, she secured a lecturing job with the Muslim Arts College in Thiruvithancode, a small town in Tamil Nadu. But she gave it up barely six months into the job: A suitable groom had been found for her. The marriage proposal came through a family friend. Ms Aneez's sister and brother-in-law travelled 400km to Jegathapattinam to check out Mr Mohamed Farook, a software engineer then working for Seagate, an American data storage company, in Singapore.
Except for a barely discernible upward curve on the left corner of his mouth, Mr Mohamed Farook received a glowing report from her sister. She says: "My sister said he had a good smile and seemed to be a good man from the way he behaved with his parents. She liked him." His background was a good match too. A computer science graduate from the Adhiyamaan College of Engineering, he had worked in Chennai and Muscat in Oman before Singapore.
"My brother-in-law also told me he probably didn't smoke because he had very rosy lips. I was very happy to hear that because I prayed for a man of good character: not a rich man or a handsome man but a man with no bad habits." The marriage was arranged within a week, and took place on Valentine's Day in 2001. They spent five days together before he came back to Singapore to work. "I was supposed to come with him but my passport was not ready. I had to wait another month but he would call me every day and I would cry," she says.
In March 2001, she finally arrived in Singapore. Home was a flat in Bukit Batok shared with her husband's elder brother and his wife. Plans for her to get a job were abandoned when she got pregnant four months later. Because her pregnancy was a difficult one, she went back to India where her mother could look after her.
"My mother could not come to Singapore because my father was not well," says Ms Aneez who gave birth to Faheem in India in April 2002. Mother and son returned to Singapore six months later. All was well at first. Faheem was a chubby baby who skipped crawling and started walking when he was nine months old. "I thought it was a miracle. He could also say several words like milk and mama," she says.
In 2003 when Ms Aneez's father died, her mother came to visit. "My mother noticed that he was not listening and didn't make eye contact. He was hyperactive, liked to throw things at people and it was hard to make him eat. She was concerned," she recalls. After their son turned two, she and her husband sent him for various assessments all over Singapore and in India.
The couple were told that Faheem had developmental delay problems. Ms Aneez threw herself into helping her son. She sent him for Eipic (Early Intervention Programme for Infants and Young Children) as well as speech, occupational and social therapy. She even learnt yoga so that she could teach him when she heard that yoga could help children with special needs.
Although these helped to calm him somewhat, he was deemed too disruptive for several childcare centres, which told his parents they could not admit him.
When he was seven, Faheem was officially diagnosed as having Asperger's syndrome, which is on the high functioning end of the autism spectrum. Asperger children have difficulty with social interaction, have restricted interests and are prone to repetitive behaviour.
A psychiatrist suggested that he be enrolled at Bukit View Primary School, which had resources for a special needs teacher. "It was heartbreaking to hear other kids calling him mad or stupid because he was not stupid. He was very good in Tamil and spelling and could spell 'stethoscope' when he was six," she says.
His behaviour in school stressed her out. "'You're Faheem's mother? Faheem did this, Faheem did that.' I'd get complaints from parents, pupils and teachers all the time," says Ms Aneez, adding that the lack of understanding and emotional support often reduced her to tears.
She had a meltdown one day when she was summoned to school. Faheem - after completing his Tamil test accurately and in record time - had gone around disturbing his classmates, and even poked one of them with a pair of scissors. She took him home and cried her heart out.
A couple of days later, on a Friday, she received a call from the school to take her son home. She was told she needed to take him out of school. Her husband returned home to comfort her. "He told me to be patient and to give him three months because he was working with a US-based company. He said he would ask for a transfer to the US so that our son could get better help," she recalls.
He then told her to rest, and that he would take Faheem to the mosque. "I told him not to because people would ask why Faheem was not in school and I didn't want him to lie on Friday, a holy day. He then said he would go and buy briyani," she says.
When father and son did not return after a while and her husband did not return her calls, she set out to look for them. That was when she found out that her husband and son had fallen from the 24th floor of a housing block. She became hysterical and inconsolable, and was admitted to Alexandra Hospital where she had to be sedated and tied to her bed.
Police later found several suicide notes in his desk addressed to his wife and siblings. Besides giving her instructions on property and financial matters, he also told her to be brave and remarry. "He said that he had chest pains and if something happened to him, things would get difficult for me so he wanted to take Faheem with him. I don't believe it; I don't think he had chest pains," she says quietly.
The trauma was so debilitating that she had to see a psychiatrist and be on anti-depressants for several months. To forget the past, she worked as a trainer in a recruitment company for more than a year. Because she could not shake off the pain, she returned to India where she spent two years with her family. The love and support of her family and her faith brought her back from the brink. When she received a letter from the HDB telling her that she could not rent out her flat, she saw that as a sign.
In October 2013, she returned to Singapore. She started taking religious classes and also began volunteering at Darul-Arqam, the Muslim Converts Association of Singapore. There, she met pharmacist Siti Maimunah who she credits for helping to turn her life around. Madam Siti says: "I got her to tell me her story only after a while. I could feel her pain. She had such a deep love for her husband but I told her that no man in his right mind would do what he did to her.
"She said that if anyone else had told her that, she would have punched them. I told her that maybe God wants her to use her pain to help others." The pharmacist took her to attend a workshop at Club Heal. One thing led to another. Ms Aneez started as a healing friend at the charity and felt so at home that she took a counselling course. Today, she is a full-time para counsellor.
"When I came to Club Heal, I could understand the feelings of those struggling with mental illness. They have to fight stigma; they want love and affection. I told myself: 'This is my place. This is where I should be helping'," says Ms Aneez, who shared her story at an autism symposium earlier this year.
But her job, she says, is not done. She hopes to learn more about autism and take up courses to help caregivers of autistic children. "I want to give them the emotional and caregiving support I didn't have."
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AS: Spore lack appropriate policies to alleviate the burden of carers, including to provide childcare leave, subsidies for home care/day care centre, beneficial special education, subsidised special needs aids/equipment, therapy and social service support/respite care, as well as a one stop centre or a capable social worker who can gather suitable policies to fit the needs of individual special needs person and family. Also, means testing shouldn't apply to special needs family. After all, most of us didn't choose to have our child be born and face the harsh world.
Some people advocate human rights for the unborn. The fact is the unborn is not in human form, just a foetus with heartbeat and human features not even developed. It relies on you, the pregnant mummy to carry it to full term and then be born as a human being.
Doctor advised some parents before birth, usually first trimester about the complications of their unborn child and those who insisted to keep the foetus shouldn't blame others for your misfortune because you made the decision to be cruel to yourself and immediate family. You were naive and failed to do research on the place your child is to be born. Spore is not a place to raise a special needs child. You're on your own. Govt doesn't give us adequate support because it doesn't owe us, you or the child a living. Nothing is free in Spore. If you don't work, a single income made it hard to sustain life in Spore. You forgot it is a lifelong commitment and financial drainage. Your responsibility will end when the child cease to exist on this earth. No one has the duty to understand what a special needs family is going through and put in extra effort to help us.
The heartbreak of caring for an autistic child, Straits Times, 18 Jun 2016
Pushed to their limits, some parents end up causing the death of their autistic child. Autistic children, even if violent, deserve love and care, not death, from their parents. But parents too need support, to help them cope with the relentless, exhausting task of caregiving.
The bare facts of the case of filicide were reported in the media: On Sept 13, 2014 (which was the eve of her 42nd birthday), the mother of a seven-year-old autistic boy got him to stand on a stool and face the kitchen window.
Gripping his calves, she heaved him out of their ninth-floor Housing Board flat. It was reported that she was "seized by thoughts that he was the reason for her exhaustion and marital problems". The woman, who was previously diagnosed as having major depression, had defaulted on her treatment and was in a relapse of her illness.
At her trial, the woman's lawyer, in pleading for a lenient sentence, argued that his client had "sacrificed her own well-being for the needs of the family and was stretched to breaking point". Apparently moved by the plight of the defendant and in sentencing her to five years of imprisonment which appeared to be a conflation of punishment and therapy, the judge said to her: "I hope you recover well and that you can return home much stronger emotionally to rebuild your family and personal life."
About a year before this case in Singapore, a woman in the United States named Kelli Stapleton tried to kill her 14-year-old autistic daughter and herself. According to Stapleton, her daughter had been unusually difficult and aggressive, had assaulted her repeatedly and had twice knocked her unconscious.
The extensive media coverage of the case was on the whole sympathetic towards the mother, who was portrayed as a victim of a medical and social service system that failed to provide adequate support, which supposedly put her under enormous duress.
The airing of an apparently commiserating interview with Stapleton, who was then in prison, by a popular TV talk show incited angry responses from a number of advocacy groups. The Autistic Self-Advocacy Network, an organisation consisting of autistic people devoted to advancing disability rights and whose slogan on its website says "Nothing about us without us", issued a statement. It emphasised that "the victim of murder is not the murderer… It is always wrong for a parent to murder their child. There is never a justification. There are always other options. The only victims here are disabled people murdered by those we should have been able to trust the most."
Mr Peter Berns, chief executive of The Arc, the world's largest community-based organisation of and for people with intellectual and developmental disabilities, commented in The New York Times Magazine (December 2015) that while there are many instances of parents or other caretakers killing their loved ones, they are indubitably unjustifiable criminal acts. He also thought that coverage of these kinds of incidents tended to give the impression that such killing of a disabled child is somehow tolerable. "There's too much of a bias that their lives really don't have value," he says. "There's some sense that they're better dead than living."
Many victims of filicides were children with disabilities, including those with autism. Those parents who killed their autistic children would often say or imply that their children were social misfits and ending their lives was to end their present and future suffering - a sort of "mercy killing". According to the United States National Council on Disability, the courts of law generally seemed to treat these filicides as understandable, albeit tragic, consequences of raising an autistic child in an environment lacking in services and resources - as reflected by the light sentences meted out to the perpetrators - although, in a number of cases, the lack of services was not an issue.
Autism is a complex brain disorder of unknown causes and is defined as a pervasive disorder because it affects most facets of behaviour, sensory perceptions, and motor functioning. It is also a form of developmental disability as there are impairments in social communication and social interaction.
In the medical nomenclature, it is now termed as autism spectrum disorder to reflect (and encompass) the wide swathe of symptoms and severity, including delayed or lack of speech and poor non-verbal communication; and diminished interests in human relationships while possibly having a fascination and attachment to non-animate objects such as spinning wheels.
There can be exquisite and distressing hypersensitivity to sounds, touch and light; repetitive movements like hand flapping ("stimming") or obsessive stereotypic behaviour; self-injurious behaviour like hand-biting or head-banging; and violence towards others.
Other than the multiplicity of symptoms, the severity also varies widely. It includes those with what used to be known as Asperger's syndrome: These are higher- functioning individuals with normal-to-high language and intellectual ability but lacking social skills, and they may be able to live independent and fulfilling lives. At the more severe end of the spectrum are those who seemed to exist in an inner world that is inaccessible and inexplicable to others.
Autism can be ameliorated to a certain extent, especially if detected early, but treatment is very labour-intensive and protracted while outcomes are uncertain and costs high. Carers of severely autistic children need support - including the acknowledgement that the task of caring is arduous and exacting in both human and financial costs, requiring assistance.
The state could alleviate the burden of these carers with the appropriate policies, including subsidised childcare leave, subsidies for home care, special education and therapy, and social service support that provides close follow-up, respite care and residential placement.
Unfortunately, it sometimes takes a tragedy to change things. After a mother in New Zealand strangulated her 17-year-old autistic daughter in 1997, the government initiated an inquiry into the provision of services for autism which then led to a number of initiatives, including an intervention programme to help parents with pre-school autistic children, support groups for parents, and home visits by experts.
In his book Far From The Tree: Parents, Children And The Search For Identity, Andrew Solomon explored the inherent pathos of parents caring and loving a child who is incapable of reciprocating that affection.
The problem for parents of severely autistic children, he noted, is that the emotion underlying parental love is neither inexhaustible nor entirely unconditional; it is "eventually not gratis" - as "to love a child who does not evidently mirror your love exacts a more terrible price than other love".
The daily heartache and heartbreak, the grind of the unremitting caregiving, the sleepless exhausting nights, and the awful realisation of shouldering a lifelong responsibility for that child - all that and possibly more can lead to sadness, hopelessness and that mounting anxiety about the child's future when they are no longer able to look after their offspring.
Clinical depression can easily develop and, when it does, it can distort thinking, narrowing options to only those which are bleak and negative. It can lead to that abyss from which there would seem to be no escape except through death.
And when that death blow is dealt by a parent, the rest of us who read about the case, or encounter it, have mixed feelings about it. There are horror and revulsion at the death, but our empathetic instinct might also make us refrain from judging the perpetrator: Since we have not walked in his or her shoes, we cannot gauge that depth of pain and that degree of desperation, and we might wonder what we would have done in that terrible situation.
If truth be told, there would probably be other parents of children with autism who, in some dark moments, would also wish their children dead or hope that they will not outlive them.
And yet, the overwhelming majority of such parents do not kill their children. They continue to care for them with all that swirling mixture of love, responsibility, despair and ambivalence. It behooves us as a caring society to accept and value these children, no matter where they are on that wide-ranging spectrum.
As a corollary to that, it also behooves us to recognise and accord the work of caring for them the importance, respect and dignity that it deserves.
But beyond mere words, these should be expressed and made manifest with a raft of concrete and accessible aids and supports.
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AS: It is tough and really depend on your good luck to employ a good and understanding Domestic Helper (maid). Sometimes, I really hate activists who are heading all the way out to attack employers. They claimed they are upholding or fighting for the rights of DHs but how true? The common false facts they like to advocate are:
- DHs are lowly paid, based on monthly salary and intentionally forgot all DHs need food, accommodation,etc, which are living costs that activists ignored in their calculations to fool people. When all expenses are factored in, each DH cost about $1500 per month. This amount is more than the low income wage earners in Spore.
- DHs are not treated like humans yet most are given off days, a monthly salary and benefits as per MOM guidelines. Don't forget, DH who has completed two year contract and doing a renewal is entitled to 15 days home leave and a return air ticket home. By law, DH must have at least 8 hours continuous rest each day. During school holidays, my DH is still asleep when I'm out to work, in an office.
- DHs should be given more freedom or lesser working hours. Live-out option was proposed but I believe activists are trying to get more money from employers. I fully support live-out maids at DH's cost, no more strings tied to us such as security bond, insurance, work permit in our name, etc.
The person who wrote below assumed domestic helper's employers are rich and live in landed property, with plenty of space and spare rooms to offer them. The writer is trying to highlight that Employer should sleep in the living room while maid gets a room on her own? The HDB rooms are getting smaller and smaller. New flats master bedrooms can only fit a queen size bed. If maids have problem sharing a room due to opposite sex, would it be better for them to sleep in the living room? For those who had to share the room with an opposite sex, I suggest the bedroom door to remain open and not closed.
Four in 10 maids sleep in shared room, Straits Times, 18 Jun 2016
Four in 10 maids have to share their rooms, a survey by a migrant worker advocacy group has found, with a "surprising" number having to bunk in with men. And this is a situation that could leave them vulnerable.
While interviewing maids for a report on their living conditions, Transient Workers Count Too (TWC2) found that about 40 per cent of them share a room. The findings were based on responses from 429 maids. Of the 171 who shared rooms, 11 did so with males aged 12 to 19, and another 11 shared a room with an adult male. TWC2 executive committee member and past president John Gee said the findings were surprising.
The group released advance results from the survey to The Straits Times on Thursday. It's terribly unacceptable for a maid to share a room with a male, unless he is physically handicapped.
The results are drawn from interviews with 472 maids, conducted from June 2014 to last month, and will form a longer report that will be published later. TWC2 treasurer Alex Au said maids could be sharing a room with male family members who are elderly or have disabilities, but "she should have a right to a place of her own".
He added: "If she is sharing a room with a male who is bigger and stronger than her, that makes her highly vulnerable."A Manpower Ministry spokesman, in response to queries, said maids should not be made to sleep in the same room as a man or male teenager to protect their modesty.
Employers who contravene this regulation can be fined up to $10,000 or face a jail term of up to a year or both. However, exceptions may be made if the adult male is elderly and disabled, and requires care, and the maid agrees to the arrangement.
The Humanitarian Organisation for Migration Economics (Home) released a report last year, which found that about a quarter of the 670 maids surveyed shared a room. In the past six months, the group said it has encountered at least four cases in which maids said they shared a room with a man.
Home executive director Jolovan Wham recounted a case in which a maid shared a bedroom and toilet with her employer's 18-year-old son. She said she felt uncomfortable because she suspected he was behaving lewdly in the same room.
The Centre for Domestic Employees, which is run by the National Trades Union Congress, said it has not encountered such issues. But its executive director of strategy, Mr Shamsul Kamar, said: "We would like to reiterate that it is the responsibility of the employers to provide acceptable accommodation that respects the privacy and modesty of foreign domestic workers."
Maid agents agreed. Mr Karl Tan, 77, owner of Inter-Mares Management Services, said: "It is terribly unacceptable for a maid to share a room with a male, unless he is physically handicapped." A 40-year-old Indonesian maid, who declined to be named, told The Straits Times that she shares a room with her employer's 23-year-old son, who has intellectual disability. The man cannot speak clearly and she once woke up to find him feverish and in need of a doctor. "He is unable to tell us that he's in pain," she said. "If I am in the same room, I can keep an eye on him and alert his parents."
The maid added that she does not feel uncomfortable sharing a room with him. She has been working for the family of six, and living with them in their four-bedroom condominium unit, for about 16 years. She said: "I've seen the boy grow up. I treat him the way I treat my own children."
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March 2016
http://specialseeds.sg
Special Seeds is a digital parenting resource initiative of the Rare Disorders Society of Singapore (RDSS), a local registered charity which engage individuals and organizations to raise awareness on rare disorders.
It is a part of RDSS' efforts to engage and collaborate with multiple stakeholder groups: disability and special needs support groups across diagnosis, members of public, schools and policy makers through better engaged conversations, shared experiences and perspectives to effect positive change as One Voice and seed a truly enabling and inclusive environment for the special needs population and their caregivers in Singapore.
Parents of child with rare disease, The New Paper, 29 Feb 2016
While some parents fuss over baby showers or photo shoots for their month-old infant, Madam Jasmine Lee and her husband struggled over whether to have their daughter's throat operated on.
A tracheostomy, where a tube is inserted in the throat to clear saliva and mucus, was important to little Sarah's survival, as she suffers from a rare disease that prevents her from swallowing. Not treating it could have killed her.
Rare Disease Day is marked worldwide every year on the last day of February. The Rare Disorders Society Singapore celebrates it here as well. Being told your child has a rare disease is something most parents would be unprepared for and it was no different for Madam Lee.
Speaking to The New Paper on Friday, the 31-year-old housewife said: "When I knew she needed a tracheostomy, I was stunned... Should we do it or not? "Should we just let her go without even trying to intervene? The consultant had to snap me out (of my daze) and ask if I had heard her."
Madam Lee said that even as Sarah was being wheeled into the operating theatre at KK Women's and Children's Hospital, her husband, a 33-year-old analyst, was still hoping there would be a sign to show that their daughter would not need the surgery.
Sarah was born with a genetic problem that doctors cannot quite put a finger on. According to a lab report, there is some missing information in one of her genes. But it could not explain the disabilities she was born with. She turns four in July, but is unable to sit up on her own. She has moderate hearing loss, is short-sighted and has stiff joints. Being unable to swallow means she requires frequent suctioning to make sure her airways are not blocked.
Whenever there is a mucus or saliva build-up, Madam Lee will insert a tube into Sarah's throat to pump out the secretions with the help of a suction machine. Last year, Sarah went through another major operation to insert a feeding tube into her stomach. The slew of unexplained medical problems was initially agonising for her parents and they struggled with the uncertainty.
Madam Lee, who also has a five-year-old son, initially blamed herself for her daughter's condition. She said: "Was it I who caused her to be in such a state? Was it because I didn't provide her with enough nutrients when she was inside my womb? "Was it because I did something during my pregnancy that caused her to suffer?"
The former accounts executive quit her job to devote her attention to Sarah. She admitted that sometimes, she would tear just looking at her daughter. It was a steep learning curve, figuring out how to see to Sarah's medical needs. It took a year before the couple came to terms with their daughter's condition. The uncertainty of her condition no longer bothers them and they are mentally prepared for the worst case scenario - Sarah dying before them.
"I won't say if it's for the better or worse if that happens. I'll leave it in God's plans," Madam Lee said quietly as she looked over at Sarah to check on her secretions. She no longer cries about her daughter, she added. When she does, they are tears of joy at the little milestones her daughter hits - like the time Sarah was able to hold her neck up for 10 seconds after two years of therapy. Whenever they go out, they have to take a suction machine with them. This is about the size of a tote bag and it often draws stares from strangers. But instead of being offended, Madam Lee is now able to laugh about it. "Just this Chinese New Year, we were at a food centre when this auntie walked past, turned back, then shook her head... I find that amusing," she said.
When they moved into their four-room flat in Bukit Panjang last year, the mother of two posted about Sarah's condition on a residents' group Facebook page after encountering many curious stares from residents. "We are fortunate that the residents in our estate are actually very gracious and nice people. We always exchange smiles," said Madam Lee. And she is quick to debunk the myth that special needs parents are very "poor thing".
The family of four went on a family holiday to Bangkok last year. "Actually, we are not sad people. Parents of special needs kids are the most positive people," she said with a grin.
Started in 2008, Rare Disease Day falls on the last day of February and is celebrated internationally to raise awareness of rare disorders. The Rare Disorders Society Singapore celebrated it yesterday with a closed-door event themed "Together in One Voice". Held at Gillman Barracks, it included the launch of World Through My Eyes, a photo exhibition featuring families from different countries who are battling rare diseases. The event brought together members of the rare disease community in Singapore, including patients and supporters such as physicians and caregivers.
A condition that affects fewer than one in 3,000 people is considered rare. There are about 7,000 types of rare diseases and disorders, with more being discovered each day.
Moebius Syndrome, The New Paper
When Madam Sally Kwek's daughter was diagnosed with having special needs, her family thought she was crazy to push her daughter to learn skills such as reading, writing and going to the toilet on her own. But the 39-year-old mother of one thought otherwise. She believed that eight-year-old Jarene, who had been diagnosed with Moebius Syndrome, was capable of achieving things just like other children.
Moebius Syndrome is a rare neurological disorder characterised by weakness or paralysis of multiple cranial nerves. In the US, it is estimated that this disorder affects one in 50,000 live births. There is no data on its prevalence here.
Madam Kwek, who started a self-service laundromat business last year, said: "Parents need to tell themselves, even when the world doesn't believe, that you have to believe. "You must first believe before you will have the courage to try. If you already give up, that's very sad." Speaking to The New Paper in a phone interview, Madam Kwek said that as a newborn, Jarene had to fight for her life. "She kept vomiting and she can't swallow so she choked. She would turn blue," Madam Kwek recalled. "I was constantly searching for a diagnosis, but I couldn't find any. None of the doctors could confidently say 'This is it'. They treated (my daughter) symptomatically."
Jarene was initially diagnosed with central hypotonia, a condition resulting in low muscle tone that is caused by brain defects. She failed her first hearing test and doctors were not sure if she could even see, so the prognosis was bleak. "They didn't know what she could do," said Madam Kwek. It was only when she was 6½ years old that doctors diagnosed it as Moebius Syndrome. "My girl's smart, she can read and understand things. But the muscles in her face and throat are affected," said Madam Kwek.
As Jarene cannot swallow, she had to be tube-fed from birth. "She can't blow the candles off a birthday cake. These are the things we tend to take for granted," said Madam Kwek. Madam Kwek edits Special Seeds, an e-zine for caregivers of persons with disabilities and special needs. Today, Jarene cannot swallow, but she has learnt to swim. She can also speak, although what she says is unclear to most people. She goes to the Cerebral Palsy Alliance Singapore (CPAS), which offers an academic programme that prepares children for the PSLE.
"When my parents saw my child take a crayon to write her name, it was a mindset change for them," said Madam Kwek. She hopes Jarene will grow up in an environment with greater access to services for her, whether it is education or common spaces without harassment. She added: "We shouldn't be put on a pedestal, but we shouldn't be treated like another species too."
Robinow Syndrome, The New Paper, 27
She remembers the doctor's words as if it were yesterday: "Your son, he has no hope to live". When Madam Faridah Thamby heard those words about her then four-year-old son, Fahmi Adam, her world crumbled.
The housewife, 51, said: "I know he was sick but hearing a doctor say those things about my poor boy, it broke my heart." But she refused to give up. Madam Faridah patiently learnt how to tube-feed her son and dedicated herself to providing round-the-clock care for Fahmi.
Now 15, he was born with Robinow Syndrome - a rare disorder that affects his body's development. He also has other medical conditions including global developmental delay and epilepsy. He is completely dependent on others to survive. The constant specialised care that Fahmi required "came with no instruction booklet" and Madam Faridah initially felt overwhelmed by all she had to do.
"There were times when I felt like I was not just Fahmi's mother, it was like I was a nurse in a hospital too, attending to a patient," she said. The most challenging moments were when Fahmi would throw tantrums, thrashing his body around and shouting. She developed her own ways of calming him down - singing in his ear and caressing his arm. Madam Faridah said: "He just wants to get attention, and it is the only way he knows how to communicate."
Fahmi's condition has since improved dramatically, and he now goes to school every weekday at Asian Women's Welfare Association (AWWA) School at Yio Chu Kang. There, he develops skills such as fine motor, communication, cognitive and self-help skills. He no longer needs to be tube-fed and can get around by himself using a walker. His technician father, Mr Adam Amin, 51, said the family - the couple have two older sons - can even go on holidays together now.
Madam Faridah says Fahmi's improving condition was only possible thanks to the support she has received from her family, friends and his teachers at AWWA. "Caregivers need care too, and I am lucky to have my family, siblings, neighbours and so many people who have supported me," she said.
Madam Faridah knows that even though Fahmi will probably not experience the life of an average person, at least with her, he will be loved regardless. She said: "It is not his fault he is this way." As tears welled up in her eyes, she smiled and said: "But he is my baby and I will never stop loving him." "There were times when I felt like I was not just Fahmi's mother, it was like I was a nurse in a hospital too, attending to a patient."
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The chronic sorrow of loving a special child, Straits Times, Jan 2016
Parenting is hard to do - harder when the child is born with disability, or when he or she is adopted.
Rosemary Kennedy was born at home on Sept 13, 1918, and although the labour was seemingly uneventful, the nurse in attendance ordered Rosemary's mother to keep her legs closed as the doctor was not yet there on hand to complete the delivery. When she was finally allowed to emerge into the world some two hours later, it was believed that the delay had somehow caused damage to her brain.
She was the third child of the wealthy Joseph P. Kennedy and Rose Fitzgerald, who went on to have six more children. Rosemary's siblings included John F. Kennedy, the 35th United States President, and two US senators, Robert Kennedy and Edward Kennedy.
By her early childhood, it became obvious that Rosemary had intellectual disability: her developmental milestones were delayed and she had difficulties reading and writing. Her father described her as suffering from "backwardness" and was fearful that the stigma attached to this would affect the family's reputation and he strove to keep it a secret. He became even more fearful when she developed into a comely albeit rebellious young lady. Envisioning a sexual scandal that would ruin his sons' political prospects, Joseph Kennedy had her undergo a prefrontal lobotomy at the age of 23. The procedure, which entailed drilling two holes into her skull and inserting an instrument to sever some neural tracts in her brain, left her severely debilitated, hardly able to talk, and unable to take care of herself.
After the disastrous lobotomy, Rosemary's parents did not want to see her and she was shunted to a private psychiatric institution in New York, then to a Catholic facility in Wisconsin where she died decades later at the age of 86.
"Parenting is no sport for perfectionists," writes Andrew Solomon in his book, Far From The Tree: Parents, Children, And The Search For Identity - a meticulously researched and moving work on how parents deal with their "exceptional" children, including those with Down syndrome, autism, and multiple disabilities.
Most would-be parents have some reasonable fantasies and expectations of their unborn child: that it would be healthy of mind and body, would grow and develop into an independent, decent and productive adult - perhaps a flattering facsimile of themselves, and that the experience of parenting would on the whole be rewarding with its bounty of joy, pleasure and satisfaction.
But when the child deviates drastically from that idealised image and when those cherished fantasies are irreparably shattered, parents may react with despair, mortification and rejection.
"Little is more gratifying than successful and devoted children, and few situations are worse than filial failure or rejection," commented Solomon. "Parenthood abruptly catapults us into a permanent relationship with a stranger and the more alien the stranger, the stronger the whiff of negativity... we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination."
Loving and doing whatever possible for one's own disabled child is daunting enough but what if the child is not one's own flesh and blood?
Grace (not her real name) was a senior registrar in the surgical department of the general hospital where I was posted as a fledging house officer after graduating from medical school. We - all the junior doctors and, I suspect, a number of the senior ones as well - were terrified of her. She had high and exacting standards when it came to surgery and patient care and had no qualms telling off anyone who fell short while fixing that hapless person with her level gaze - all of which breathed life into that phrase about not suffering fools gladly.
But she is also the embodiment of the cliche of that beloved individual whose forbidding and apparently acerbic exterior belies a vulnerable and tender kindliness.
When she was a young doctor, her mother brought home a premature baby with fair skin and almond-shaped grey eyes. The baby named David had been abandoned by his biological parents and Grace's mother decided that she would provide foster care to this unwanted baby. As David grew, so did the host of problems: he was developmentally slow and had learning difficulties. By then, he was diagnosed to have Prader Willi syndrome - a rare genetic disorder with a number of physical, mental, behavioural and emotional manifestations, including a constant gnawing insatiable hunger which, in time, would lead to obesity and diabetes.
From infancy and throughout his life, David was plagued with a myriad of development and medical problems. Clinic visits, sessions with physiotherapists and hospitalisations were a way of life. Despite this, Grace and her mother went ahead and signed the adoption papers - making David part of the family and assuming all the unceasing responsibilities that came with that - all of which fell on Grace's shoulders after her mother became incapacitated with illness.
"David never grew to manhood," Grace said. "Physically he looked like a child, though bigger with a large body and small feet and hands." The years were interspersed with numerous, various, and wearying surgical and medical travails and other crises which Grace bore willingly and uncomplainingly.
David himself never lost that effervescent capacity to enjoy simple things: going to church and singing, if not always tunefully but always "from his heart and soul", watching cartoons and playing with soft toys even when he was an adult, and loving - in that simple child-like manner - his adopted mother and sister and all his pets.
As he grew older and despite Grace's unceasing efforts to curb his weight, he became so heavy that he could not walk and had to be lifted from his bed with a pulley.
To be in that room and seeing the interaction between Grace and David was - in Solomon's words which he used to describe a couple with their severely disabled son - "to witness a shimmering humanity".
Studies have shown that taking care of children with disability takes a toll on the physical health of parents, leading to more rapid ageing of the body and possibly dying younger. There is the emotional toll as well.
Mr Simon Olshansky, a counsellor for parents with disabled children, wrote of the "chronic sorrow" from the "child's unrelenting demands and unabated dependency. The woes, the trials, the moments of despair will continue until either their own deaths or the child's death".
But this is not invariably or universally true. Studies have shown that some parents found that the experience had brought the family closer to one another, taught them what is important in life, and made them more empathetic and resilient.
There is something remarkable about this love for such children: an unconditional selfless love for their mere existence, and not for who they might have been or have achieved, and not for some expectation of a reciprocal return of care in the future; but loving them quite simply and purely for what they are and despite what they will never be.
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