TREATED LOWER THAN ANIMAL
Another challenge, point 15 .... friend who knew you're a special needs parent do not show any consideration, empathy for another human being and basic understanding.
One of my Angelman friends was featured in MediaCorp Hearts and Hugs show 爱心72小时, Ep6 fundraising. See Video
After the show, there was a link for public to click a heart. Once the required amount of hearts, that is the goal is reached, the featured family will receive 1 year’s supply of food pack from Neo Garden.
It is just a click to support, not a donation. Sent the link to my ex-classmates whatsapp chat group and got these nasty posts:
Was angry and shared those posts with other special needs parents. Life would be better without such friends. I'm not at any loss. Having friends or relatives who are adding salt onto my wound isn't welcomed. Life is miserable and stressful. The special needs journey is not something enriching, delighting, hassle-free or affordable in Spore. This is also the main reason why I do not want to be shown on media ... share my stories and challenges. Many friends/relatives may torment me for genuine comments that I made about them ... how they treated me, what they said to me (those hurting words), etc. I don't have the courage and the real skills to fight them off correctly and timely. Sometimes, I'm stunned. Most times, I failed to organise my brain well to fire back and win the "war". Don't have good reflex nor articulate. I certainly won't slap a person and open myself to gang counter-attacks.
I replied this before exiting the Whatsapp ex-classmates group:
1) You implying animals should be treated better than me or my friends.
2) U merely click Heart to support an Act for a special needs boy, nobody asking u to donate.
3) Persons proclaimed kind n compassionate shouldn't "take away Lives" - Carnivores, you ate animals, not a vegetarian! 你不杀 伯仁却因你而亡.
Classmate L saw my bombastic post said that "friend" was angry that I exited without telling her. Why do I need permission to leave a Group chat created by classmate Goh? Can't get along, there's conflict why should I befriend them?
I replied: she hurt me yet felt angry, is she mentally ok.... I wonder. I am not petty to exit, just hurt, want to spare myself from further injuries. Those 2 "friends" didn't apologise to me, after more than 24 hours. Inconsiderate and adding salt to my wound, such friends felt animals should be treated better then humans and deserved more compassion, as well as donations.
Why are some people so nasty? Can't they spare a thought for others? Strangers could be hurling unpleasant remarks. In my case, I have been given disapproving looks by strangers and nasty/inconsiderate comments from friends (above) as well as relatives. Should I get used to it? No, I am a human being, not a robot without feelings or can be programmed to turn off things that I don't want to see and hear. 我很脆弱 并非刀枪不入 请手下留情. My colleagues who knew I'm a special needs mum appeared ok, maybe they knew as a human, they shouldn't say hurtful things to me, some avoided this "touchy" topic .... matured, tactful and less "ugly inner".
I don't have good luck on getting lots of supporting relatives and friends. My years of special needs parenting isn't smooth sailing and well supported. It is lonely, sad, frustrating and not fulfilling nor enjoyable. You need to try our journey in order to understand fully. Explaining just can't get into some people's head.... blocked, distorted yet stubbornly assumed they are right or finding excuses to get away 为自己 违背良心狡辩 承认错误不在他们的理念里. Some people are too prideful to say sorry, including my domestic helper (FDW).
A special needs mum was called "useless"
The New Paper, 5 Nov 2016
She is a regular at the 7-Eleven store in Killiney Road because her 10-year-old son, who has Williams syndrome, has been attending speech therapy lessons nearby for more than five years. And the store employees are aware of the boy's special needs.
But on Tuesday, Madam Elaine Chan's encounter with a female customer who objected to her son's behaviour in the store turned nasty.
The 44-year-old, who works in a bank, said that despite her telling the woman that her son is a child with special needs, the woman verbally abused her, calling her useless for giving birth to him, and called him a b******.
Williams syndrome is a rare genetic disorder that causes learning disabilities and developmental delays in children. Those with the syndrome, however, tend to be sociable, friendly and endearing.
The single mother told The New Paper: "My son loves fans and whenever he sees one, he wants to play with the buttons on it. "The counter staff at 7-Eleven are very patient. They are fine with my son going into the room behind the counter to let him touch the buttons on the fan."
But at 8.45pm on Tuesday, the female customer told Madam Chan off for letting her son enter the room. "I thought she was an off-duty employee, which would sort of give her the right to scold my son," said Madam Chan.
"I told her he's a special needs child and usually people would understand. But she replied, 'All the more you have to control your son.'" When Madam Chan tried to explain about her son and his special needs, the woman raised her voice and became even more aggressive.
Madam Chan then realised the woman was not a 7-Eleven employee and decided to film her with her smartphone in the hope that it would make her leave. But the woman continued scolding her and called her son a b******.
In the video, the woman, seen to be wearing a straw hat and covering her face with a piece of cloth, yelled at Madam Chan in Mandarin: "You are useless. Why must you give birth to a special needs child?"
She then hit Madam Chan's hand with her handbag, causing Madam Chan to drop her phone.
"My (11-year-old) daughter started crying because she thought the woman had hurt me, so I went to comfort her," said Madam Chan. The loud noises also scared her son and he covered his ears with his hands.
After the woman left the store, a police officer walked in and Madam Chan told the officer about the incident. The officer went to look for the woman, but was unable to find her.
Madam Chan subsequently shared her 37-second video of the incident on a WhatsApp group for parents whose children have Williams syndrome.
Her friend Janet Yeo, who was in the group, later posted the clip on Facebook. She told TNP: "I was upset that Elaine had to go through this. "As a parent of a Williams syndrome child myself, I feel sad when my child gets disapproving stares from strangers.
"Labelling them 'useless and a 'b******' is way too much. So I shared the video on Facebook to create awareness and to seek the public's understanding for special needs children and their parents."
A report on the incident also went viral on citizen journalism site Stomp, attracting 43,000 views.
Madam Chan said: "I was shocked that someone would use such profanity. This is the first time something like this has happened to me. "At most, people would give me disapproving stares because my son may be doing things that are unusual. "But when I explain that Ian is a special needs child, they would understand."
She said she had seen many negative comments online about the woman, but she did not approve of such comments.
"I was upset because she was ignorant and made my daughter cry, but I think we shouldn't judge her," said Madam Chan. "Instead, we should highlight the people who are caring and compassionate towards special needs children because there are a lot of them around."
Dr Carol Balhetchet, senior director for youth services at the Singapore Children's Society, said strangers should respect the mother of a child with special needs.
"I think all she wanted to do was make a statement about what was wrong (the boy's action of going to the room behind the counter), but instead she spiralled into anger and attacked both the mother and her child, which was disrespectful," she said.
"What she used to label the child is appalling and insensitive. It was uncalled for."
Dr Balhetchet said that in such cases, people should respect the mother and the child with special needs.
"Leave the mother to deal with the child," she advised.
"Give them space, and be more sensitive and supportive, and maybe advise the mother to be a bit more careful if their child is running around as they may hurt themselves."
"At most, people would give me disapproving stares because my son may be doing things that are unusual. But when I explain that Ian is a special-needs child, they would understand."
It was the first time such an incident has happened to Madam Elaine Chan. But she has also encountered many caring and compassionate people.
One such person is Mr Joe Liew, 45, who works at Rice Roll And Porridge, a coffee shop two doors away from the 7-Eleven at Killiney Road which Madam Chan and her son frequent. Her son, 10, who has Williams syndrome, has a tendency to touch the buttons on fans and it annoys most shop owners, she said.
But Mr Liew is one of the rare few who are kind enough to let her son have his way, to Madam Chan's gratitude. Mr Liew said what affected him the most was the woman insulting Madam Chan's parental skills. "If I were the parent, I would be very sad because how you raise your child is a personal thing," he said.
Mr Liew, who has worked at the coffee shop for about five months, said he lets the boy play with the fan buttons because "kids are kids". "I'm the youngest at home, so I have no younger siblings to play with. I'm always more than happy to play with and be nice to children," he said.
Kids with Williams syndrome very sociable
The Williams syndrome is a genetic condition that affects many parts of the body.
It is characterised by medical problems, including cardiovascular disease, developmental delays and learning disabilities. These often occur alongside striking verbal abilities, highly social personalities and an affinity for music.
The syndrome affects one in 10,000 people worldwide, and occurs equally in both males and females, and in every culture.
Unlike disorders that can make connecting with your child difficult, children with the Williams syndrome tend to be sociable, friendly and endearing.
But there are also major struggles - many babies have life-threatening cardiovascular problems. Children with the syndrome need costly and ongoing medical care and early interventions (such as speech or occupational therapy).
As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge.
As adults, most people with the Williams syndrome need supportive housing to live to their fullest potential. Many contribute to their communities as volunteers or paid employees.
Another 24 hours passed after Goh's nasty post was up (left the Group chat so don't know what's going on there). Classmate L didn't update me and I didn't follow-up. If people are uninterested and thinking the fault lies on me, I don't see any reason why I should remain in contact. I certainly can't pretend nothing happened and "agree with them" it was just a trivial matter, an oversight. Unable to spare a thought, hurting others and expecting the "victim" (me) to give in/compromise ..... would you?
In total, there were 9 ex-classmates + Admin Goh + Goh's supporter + me = 12
One of the classmate L private messaged me to find out how was I feeling. Others didn't response. Those two didn't apologise. If all have the same thinking as Goh, that is I am petty and getting worked up on trivial matter than I must say it is sad and discouraging that in most people's eyes, special needs in Spore are not being accepted and allowed to continue our lives with dignity, as well as understanding to press on with our harsh lives.
Animals deserved much more help and compassion than special needs persons and families?
How does it feel to be treated worst than animals?
We get penalised for giving birth to special needs children.
All the while, I know it is a tough journey. I am not sure how much normal parents can feel and understand our plight. Probably you will worry that our child would bully yours. Maybe, you felt the govt funds were "wrongly given"..... in actual fact, most funds were just for show. All subsidies require means testing. Only low income group gets it, that is household income* of S$1900 or lesser, per month. Some VWOs set at S$1500 - 2000 per month or using per capita (total income divided by number of pax).
Nowadays, a polytechnic diploma or degree holders are paid only S$1900 per month? If no, how many households really qualify for govt's juicy subsidy?
Read: ComCare Financial Assistance
MOH subsidy
SG Enable
*household incomes means the total salary generated by working persons living in the same address.
This report done by LIEN is so true! Read pdf
Straits Times, 9 June 2016 by Theresa Tan
A recent survey shows that many Singaporeans remain uncomfortable interacting with people with disabilities. To change mindsets, create more opportunities for interaction.
When I was in secondary school, I had a friend who hardly talked about her sister. The only thing I knew about her mysterious sibling was that she lived in the "Tampines home". I naively assumed that her parents were very rich, had two properties and that her sister was living at their home in Tampines.
It was only much later that I realised the Tampines Home was a home for people with intellectual disabilities. It was also at that point that my friend's reticence about her sister suddenly made sense. When I was growing up in the 1980s and '90s, many families kept their disabled children mostly at home or in institutions - out of sight and out of the public's mind. They did so perhaps out of shame, fear or helplessness.
There were also few reasons to go out as there were few support services, much less job openings, for the disabled, compared to what is available now.
But it was also clearly in response to the lack of understanding by Singaporeans in general. Given the segregation between most Singaporeans and the disabled, it comes as no surprise that two recent surveys found that a sizeable number of Singaporeans still feel uncomfortable interacting with the disabled and that the latter feel shut out from society.
This is disappointing, especially after all the efforts by the Government and charities to improve the lives of those with disabilities in the past decade.
Just take a look at the findings:
The Lien Foundation survey of 1,000 people on their attitudes towards children with disabilities found that close to two-thirds of the respondents shared the belief that Singaporeans are willing to share public spaces with children with special needs, but are not willing to interact with them.
Public education is needed to raise awareness of disability issues. Over one-third of those surveyed in the Lien Foundation poll said children with special needs are not part of their social circle. Even those who know a special needs child (through friends or relatives) say they are not always comfortable interacting with the child. The most common feelings they have in such interactions are empathy, pity and love.
Half of the parents polled were uncomfortable about their child having to sit next to one with special needs in class.
As for the disabled themselves, a survey of 1,000 people with disabilities, released last Thursday by the National Council of Social Service (NCSS), found that 62 per cent of them do not feel they are included, accepted, given opportunities to contribute or reach their potential by society.
It is no wonder they feel thus, given the survey findings that so many are uncomfortable interacting with them. It is clear that the calls for inclusion of people with disabilities have not gained traction with many ordinary Singaporeans.
The Government has done a lot more for the disabled in the past decade, like giving more funding for education and therapy services, among other things, for children with special needs. But the hard - and heart - part of changing mindsets to accept and include those with disabilities remains a challenge. And this is not something that can be achieved just by pouring money into it.
More needs to be done to promote inclusion. And there is some urgency in this because the number of young children diagnosed with developmental conditions, such as autism, speech and language delays and global developmental delay, has tripled in the past decade. Last year, about 4,000 children were diagnosed with developmental problems, up from about 1,300 in 2005.
Experts have said that about 5 per cent to 6 per cent of children born here have some form of developmental problem. With more diagnosed, more of those with mild conditions will go on to mainstream schools. Also last year, there were about 13,000 students - or about 2.7 per cent of the student population - with mild special needs or learning difficulties in mainstream schools. That's almost triple the number in 2006 .
Charities that support those with disabilities, such as the Disabled People's Association (DPA) and SPD, have been holding talks to raise awareness about disability issues for years. The DPA goes to schools, offices and other organisations to get the public to understand what people with disabilities are going through and to think of how to ease the barriers.
Some students who attended these talks have gone on to run similar campaigns at their schools, said DPA executive director Marissa Medjeral-Mills. On a larger scale, the NCSS also launched its disability awareness campaign last Thursday. Through a website (seethetrueme.sg) and public talks on various disabilities as well as tips on how to communicate and interact with people with disabilities, among other measures, the NCSS hopes to promote inclusion.
Raising awareness aside, there also has been a greater push to promote inclusion and interaction between children with and those without disabilities. For example, in 2012, the Education Ministry said the 20 special education schools for children with disabilities would be paired with mainstream schools, so that students from both schools have opportunities to mingle, for example, during recess and at school events.
In January, a charity started Singapore's first inclusive pre-school. At Kindle Garden, run by AWWA, children with disabilities learn and play alongside other kids in the same classroom. About 30 per cent of its children from 18 months to six years of age have disabilities, such as autism or Down syndrome. School principal Lena Koh said both groups of children get along, play and learn together naturally, without fear or hesitation.
"Children do not discriminate or single out children with disabilities," she said. "It's the adults who tend to do that." The pre-school is filled to its capacity of 75 children and has a waiting list of 138.
This is an encouraging sign. Research shows that children with classmates with disabilities learn how to interact with those who are different from them. They are more likely to develop positive self-esteem, confidence and leadership skills when their experience of such interactions is positive, said Dr Kenneth Poon, associate professor of early childhood and special education at the National Institute of Education.
Hopefully, with more Kindle Gardens around, more parents will find that it is not so scary to have their child playing or studying with a special needs kid after all. And their children will form the foundation of a truly inclusive Singapore. And those with disabilities will no longer be apart from society, but a part of it.
Channel News Asia, 4 Jun 2016
Greater support in special needs education, moving Singapore from tolerance to greater acceptance and the active inclusion of children with special needs and their families by society – these are some of the hopes of parents of children with special needs, a survey has found.
The second part of the Lien Foundation’s Inclusive Attitude Survey, the results of which were released on Monday (Jul 4), polled more than 800 parents of children with special needs on the challenges they face, and how Singapore can be more inclusive.
According to the survey, only about 28 per cent of parents of children with special needs surveyed perceived Singapore as being inclusive. This is roughly the same as the perception of the general public.
The majority of parents surveyed – 77 per cent – supported inclusive education. But only slightly more than half (57 per cent) of those surveyed agreed that adults are comfortable interacting with their child.
Almost half of the children with special needs do not have "typically developing friends", the survey found.
Children with special needs also spent too little time outside, with 31 per cent of respondents saying this was because they were afraid of being judged as "not being a good parent".
Parents of children with special needs often had to give up their jobs to care for their child, with two in five families having a parent who quit their job to look after their child. These parents made up about 60 per cent of primary caregivers to children with special needs. Helpers and grandparents made up 16 per cent and 13 per cent of caregivers, respectively.
The majority of those surveyed – 72 per cent – said that laws on providing access to key amenities, suitable opportunities and child protection policies were needed to promote the rights of children with special needs.
Five in 10 parents faced difficulties enrolling their children in preschools, with 55 per cent finding that preschools were unwilling to take in children with special needs. About half were satisfied with their child's education in mainstream preschools, although only a third of parents surveyed were satisfied with the curriculum and facilities offered for their special needs children.
The first part of the survey, released on May 31, found that close to two-thirds of respondents felt that Singaporeans are willing to share public spaces with children with special needs, but are not willing to interact with them.
A National Council of Social Services survey of 1,000 people with disabilities conducted earlier this year also revealed that 62 per cent of the respondents do not feel accepted or included, and felt they were not given opportunities to reach their full potential in society.
While more resources have been dedicated to improving the lives of children with disabilities through more funding for education and therapy, at least one expert said that more needs to be done. Researcher and clinical psychologist Dr Kenneth Poon said more inclusive facilities should be built, and more training provided for staff in public and community spaces.
“We can (also) foster more opportunities or relationships that can be developed between typically developing children and children with special needs," he added.
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30 Jun 2016
CHALLENGES
Another challenge, point 15 .... friend who knew you're a special needs parent do not show any consideration, empathy for another human being and basic understanding.
One of my Angelman friends was featured in MediaCorp Hearts and Hugs show 爱心72小时, Ep6 fundraising. See Video
After the show, there was a link for public to click a heart. Once the required amount of hearts, that is the goal is reached, the featured family will receive 1 year’s supply of food pack from Neo Garden.
It is just a click to support, not a donation. Sent the link to my ex-classmates whatsapp chat group and got these nasty posts:
Was angry and shared those posts with other special needs parents. Life would be better without such friends. I'm not at any loss. Having friends or relatives who are adding salt onto my wound isn't welcomed. Life is miserable and stressful. The special needs journey is not something enriching, delighting, hassle-free or affordable in Spore. This is also the main reason why I do not want to be shown on media ... share my stories and challenges. Many friends/relatives may torment me for genuine comments that I made about them ... how they treated me, what they said to me (those hurting words), etc. I don't have the courage and the real skills to fight them off correctly and timely. Sometimes, I'm stunned. Most times, I failed to organise my brain well to fire back and win the "war". Don't have good reflex nor articulate. I certainly won't slap a person and open myself to gang counter-attacks.
I replied this before exiting the Whatsapp ex-classmates group:
1) You implying animals should be treated better than me or my friends.
2) U merely click Heart to support an Act for a special needs boy, nobody asking u to donate.
3) Persons proclaimed kind n compassionate shouldn't "take away Lives" - Carnivores, you ate animals, not a vegetarian! 你不杀 伯仁却因你而亡.
Classmate L saw my bombastic post said that "friend" was angry that I exited without telling her. Why do I need permission to leave a Group chat created by classmate Goh? Can't get along, there's conflict why should I befriend them?
I replied: she hurt me yet felt angry, is she mentally ok.... I wonder. I am not petty to exit, just hurt, want to spare myself from further injuries. Those 2 "friends" didn't apologise to me, after more than 24 hours. Inconsiderate and adding salt to my wound, such friends felt animals should be treated better then humans and deserved more compassion, as well as donations.
Why are some people so nasty? Can't they spare a thought for others? Strangers could be hurling unpleasant remarks. In my case, I have been given disapproving looks by strangers and nasty/inconsiderate comments from friends (above) as well as relatives. Should I get used to it? No, I am a human being, not a robot without feelings or can be programmed to turn off things that I don't want to see and hear. 我很脆弱 并非刀枪不入 请手下留情. My colleagues who knew I'm a special needs mum appeared ok, maybe they knew as a human, they shouldn't say hurtful things to me, some avoided this "touchy" topic .... matured, tactful and less "ugly inner".
I don't have good luck on getting lots of supporting relatives and friends. My years of special needs parenting isn't smooth sailing and well supported. It is lonely, sad, frustrating and not fulfilling nor enjoyable. You need to try our journey in order to understand fully. Explaining just can't get into some people's head.... blocked, distorted yet stubbornly assumed they are right or finding excuses to get away 为自己 违背良心狡辩 承认错误不在他们的理念里. Some people are too prideful to say sorry, including my domestic helper (FDW).
A special needs mum was called "useless"
The New Paper, 5 Nov 2016
She is a regular at the 7-Eleven store in Killiney Road because her 10-year-old son, who has Williams syndrome, has been attending speech therapy lessons nearby for more than five years. And the store employees are aware of the boy's special needs.
But on Tuesday, Madam Elaine Chan's encounter with a female customer who objected to her son's behaviour in the store turned nasty.
The 44-year-old, who works in a bank, said that despite her telling the woman that her son is a child with special needs, the woman verbally abused her, calling her useless for giving birth to him, and called him a b******.
Williams syndrome is a rare genetic disorder that causes learning disabilities and developmental delays in children. Those with the syndrome, however, tend to be sociable, friendly and endearing.
The single mother told The New Paper: "My son loves fans and whenever he sees one, he wants to play with the buttons on it. "The counter staff at 7-Eleven are very patient. They are fine with my son going into the room behind the counter to let him touch the buttons on the fan."
But at 8.45pm on Tuesday, the female customer told Madam Chan off for letting her son enter the room. "I thought she was an off-duty employee, which would sort of give her the right to scold my son," said Madam Chan.
"I told her he's a special needs child and usually people would understand. But she replied, 'All the more you have to control your son.'" When Madam Chan tried to explain about her son and his special needs, the woman raised her voice and became even more aggressive.
Madam Chan then realised the woman was not a 7-Eleven employee and decided to film her with her smartphone in the hope that it would make her leave. But the woman continued scolding her and called her son a b******.
In the video, the woman, seen to be wearing a straw hat and covering her face with a piece of cloth, yelled at Madam Chan in Mandarin: "You are useless. Why must you give birth to a special needs child?"
She then hit Madam Chan's hand with her handbag, causing Madam Chan to drop her phone.
"My (11-year-old) daughter started crying because she thought the woman had hurt me, so I went to comfort her," said Madam Chan. The loud noises also scared her son and he covered his ears with his hands.
After the woman left the store, a police officer walked in and Madam Chan told the officer about the incident. The officer went to look for the woman, but was unable to find her.
Madam Chan subsequently shared her 37-second video of the incident on a WhatsApp group for parents whose children have Williams syndrome.
Her friend Janet Yeo, who was in the group, later posted the clip on Facebook. She told TNP: "I was upset that Elaine had to go through this. "As a parent of a Williams syndrome child myself, I feel sad when my child gets disapproving stares from strangers.
"Labelling them 'useless and a 'b******' is way too much. So I shared the video on Facebook to create awareness and to seek the public's understanding for special needs children and their parents."
A report on the incident also went viral on citizen journalism site Stomp, attracting 43,000 views.
Madam Chan said: "I was shocked that someone would use such profanity. This is the first time something like this has happened to me. "At most, people would give me disapproving stares because my son may be doing things that are unusual. "But when I explain that Ian is a special needs child, they would understand."
She said she had seen many negative comments online about the woman, but she did not approve of such comments.
"I was upset because she was ignorant and made my daughter cry, but I think we shouldn't judge her," said Madam Chan. "Instead, we should highlight the people who are caring and compassionate towards special needs children because there are a lot of them around."
Dr Carol Balhetchet, senior director for youth services at the Singapore Children's Society, said strangers should respect the mother of a child with special needs.
"I think all she wanted to do was make a statement about what was wrong (the boy's action of going to the room behind the counter), but instead she spiralled into anger and attacked both the mother and her child, which was disrespectful," she said.
"What she used to label the child is appalling and insensitive. It was uncalled for."
Dr Balhetchet said that in such cases, people should respect the mother and the child with special needs.
"Leave the mother to deal with the child," she advised.
"Give them space, and be more sensitive and supportive, and maybe advise the mother to be a bit more careful if their child is running around as they may hurt themselves."
"At most, people would give me disapproving stares because my son may be doing things that are unusual. But when I explain that Ian is a special-needs child, they would understand."
It was the first time such an incident has happened to Madam Elaine Chan. But she has also encountered many caring and compassionate people.
One such person is Mr Joe Liew, 45, who works at Rice Roll And Porridge, a coffee shop two doors away from the 7-Eleven at Killiney Road which Madam Chan and her son frequent. Her son, 10, who has Williams syndrome, has a tendency to touch the buttons on fans and it annoys most shop owners, she said.
But Mr Liew is one of the rare few who are kind enough to let her son have his way, to Madam Chan's gratitude. Mr Liew said what affected him the most was the woman insulting Madam Chan's parental skills. "If I were the parent, I would be very sad because how you raise your child is a personal thing," he said.
Mr Liew, who has worked at the coffee shop for about five months, said he lets the boy play with the fan buttons because "kids are kids". "I'm the youngest at home, so I have no younger siblings to play with. I'm always more than happy to play with and be nice to children," he said.
Kids with Williams syndrome very sociable
The Williams syndrome is a genetic condition that affects many parts of the body.
It is characterised by medical problems, including cardiovascular disease, developmental delays and learning disabilities. These often occur alongside striking verbal abilities, highly social personalities and an affinity for music.
The syndrome affects one in 10,000 people worldwide, and occurs equally in both males and females, and in every culture.
Unlike disorders that can make connecting with your child difficult, children with the Williams syndrome tend to be sociable, friendly and endearing.
But there are also major struggles - many babies have life-threatening cardiovascular problems. Children with the syndrome need costly and ongoing medical care and early interventions (such as speech or occupational therapy).
As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge.
As adults, most people with the Williams syndrome need supportive housing to live to their fullest potential. Many contribute to their communities as volunteers or paid employees.
Another 24 hours passed after Goh's nasty post was up (left the Group chat so don't know what's going on there). Classmate L didn't update me and I didn't follow-up. If people are uninterested and thinking the fault lies on me, I don't see any reason why I should remain in contact. I certainly can't pretend nothing happened and "agree with them" it was just a trivial matter, an oversight. Unable to spare a thought, hurting others and expecting the "victim" (me) to give in/compromise ..... would you?
In total, there were 9 ex-classmates + Admin Goh + Goh's supporter + me = 12
One of the classmate L private messaged me to find out how was I feeling. Others didn't response. Those two didn't apologise. If all have the same thinking as Goh, that is I am petty and getting worked up on trivial matter than I must say it is sad and discouraging that in most people's eyes, special needs in Spore are not being accepted and allowed to continue our lives with dignity, as well as understanding to press on with our harsh lives.
Animals deserved much more help and compassion than special needs persons and families?
How does it feel to be treated worst than animals?
We get penalised for giving birth to special needs children.
All the while, I know it is a tough journey. I am not sure how much normal parents can feel and understand our plight. Probably you will worry that our child would bully yours. Maybe, you felt the govt funds were "wrongly given"..... in actual fact, most funds were just for show. All subsidies require means testing. Only low income group gets it, that is household income* of S$1900 or lesser, per month. Some VWOs set at S$1500 - 2000 per month or using per capita (total income divided by number of pax).
Nowadays, a polytechnic diploma or degree holders are paid only S$1900 per month? If no, how many households really qualify for govt's juicy subsidy?
Read: ComCare Financial Assistance
MOH subsidy
SG Enable
*household incomes means the total salary generated by working persons living in the same address.
This report done by LIEN is so true! Read pdf
Straits Times, 9 June 2016 by Theresa Tan
A recent survey shows that many Singaporeans remain uncomfortable interacting with people with disabilities. To change mindsets, create more opportunities for interaction.
When I was in secondary school, I had a friend who hardly talked about her sister. The only thing I knew about her mysterious sibling was that she lived in the "Tampines home". I naively assumed that her parents were very rich, had two properties and that her sister was living at their home in Tampines.
It was only much later that I realised the Tampines Home was a home for people with intellectual disabilities. It was also at that point that my friend's reticence about her sister suddenly made sense. When I was growing up in the 1980s and '90s, many families kept their disabled children mostly at home or in institutions - out of sight and out of the public's mind. They did so perhaps out of shame, fear or helplessness.
There were also few reasons to go out as there were few support services, much less job openings, for the disabled, compared to what is available now.
But it was also clearly in response to the lack of understanding by Singaporeans in general. Given the segregation between most Singaporeans and the disabled, it comes as no surprise that two recent surveys found that a sizeable number of Singaporeans still feel uncomfortable interacting with the disabled and that the latter feel shut out from society.
This is disappointing, especially after all the efforts by the Government and charities to improve the lives of those with disabilities in the past decade.
Just take a look at the findings:
The Lien Foundation survey of 1,000 people on their attitudes towards children with disabilities found that close to two-thirds of the respondents shared the belief that Singaporeans are willing to share public spaces with children with special needs, but are not willing to interact with them.
Public education is needed to raise awareness of disability issues. Over one-third of those surveyed in the Lien Foundation poll said children with special needs are not part of their social circle. Even those who know a special needs child (through friends or relatives) say they are not always comfortable interacting with the child. The most common feelings they have in such interactions are empathy, pity and love.
Half of the parents polled were uncomfortable about their child having to sit next to one with special needs in class.
As for the disabled themselves, a survey of 1,000 people with disabilities, released last Thursday by the National Council of Social Service (NCSS), found that 62 per cent of them do not feel they are included, accepted, given opportunities to contribute or reach their potential by society.
It is no wonder they feel thus, given the survey findings that so many are uncomfortable interacting with them. It is clear that the calls for inclusion of people with disabilities have not gained traction with many ordinary Singaporeans.
The Government has done a lot more for the disabled in the past decade, like giving more funding for education and therapy services, among other things, for children with special needs. But the hard - and heart - part of changing mindsets to accept and include those with disabilities remains a challenge. And this is not something that can be achieved just by pouring money into it.
More needs to be done to promote inclusion. And there is some urgency in this because the number of young children diagnosed with developmental conditions, such as autism, speech and language delays and global developmental delay, has tripled in the past decade. Last year, about 4,000 children were diagnosed with developmental problems, up from about 1,300 in 2005.
Experts have said that about 5 per cent to 6 per cent of children born here have some form of developmental problem. With more diagnosed, more of those with mild conditions will go on to mainstream schools. Also last year, there were about 13,000 students - or about 2.7 per cent of the student population - with mild special needs or learning difficulties in mainstream schools. That's almost triple the number in 2006 .
Charities that support those with disabilities, such as the Disabled People's Association (DPA) and SPD, have been holding talks to raise awareness about disability issues for years. The DPA goes to schools, offices and other organisations to get the public to understand what people with disabilities are going through and to think of how to ease the barriers.
Some students who attended these talks have gone on to run similar campaigns at their schools, said DPA executive director Marissa Medjeral-Mills. On a larger scale, the NCSS also launched its disability awareness campaign last Thursday. Through a website (seethetrueme.sg) and public talks on various disabilities as well as tips on how to communicate and interact with people with disabilities, among other measures, the NCSS hopes to promote inclusion.
Raising awareness aside, there also has been a greater push to promote inclusion and interaction between children with and those without disabilities. For example, in 2012, the Education Ministry said the 20 special education schools for children with disabilities would be paired with mainstream schools, so that students from both schools have opportunities to mingle, for example, during recess and at school events.
In January, a charity started Singapore's first inclusive pre-school. At Kindle Garden, run by AWWA, children with disabilities learn and play alongside other kids in the same classroom. About 30 per cent of its children from 18 months to six years of age have disabilities, such as autism or Down syndrome. School principal Lena Koh said both groups of children get along, play and learn together naturally, without fear or hesitation.
"Children do not discriminate or single out children with disabilities," she said. "It's the adults who tend to do that." The pre-school is filled to its capacity of 75 children and has a waiting list of 138.
This is an encouraging sign. Research shows that children with classmates with disabilities learn how to interact with those who are different from them. They are more likely to develop positive self-esteem, confidence and leadership skills when their experience of such interactions is positive, said Dr Kenneth Poon, associate professor of early childhood and special education at the National Institute of Education.
Hopefully, with more Kindle Gardens around, more parents will find that it is not so scary to have their child playing or studying with a special needs kid after all. And their children will form the foundation of a truly inclusive Singapore. And those with disabilities will no longer be apart from society, but a part of it.
Channel News Asia, 4 Jun 2016
Greater support in special needs education, moving Singapore from tolerance to greater acceptance and the active inclusion of children with special needs and their families by society – these are some of the hopes of parents of children with special needs, a survey has found.
The second part of the Lien Foundation’s Inclusive Attitude Survey, the results of which were released on Monday (Jul 4), polled more than 800 parents of children with special needs on the challenges they face, and how Singapore can be more inclusive.
According to the survey, only about 28 per cent of parents of children with special needs surveyed perceived Singapore as being inclusive. This is roughly the same as the perception of the general public.
The majority of parents surveyed – 77 per cent – supported inclusive education. But only slightly more than half (57 per cent) of those surveyed agreed that adults are comfortable interacting with their child.
Almost half of the children with special needs do not have "typically developing friends", the survey found.
Children with special needs also spent too little time outside, with 31 per cent of respondents saying this was because they were afraid of being judged as "not being a good parent".
Parents of children with special needs often had to give up their jobs to care for their child, with two in five families having a parent who quit their job to look after their child. These parents made up about 60 per cent of primary caregivers to children with special needs. Helpers and grandparents made up 16 per cent and 13 per cent of caregivers, respectively.
The majority of those surveyed – 72 per cent – said that laws on providing access to key amenities, suitable opportunities and child protection policies were needed to promote the rights of children with special needs.
Five in 10 parents faced difficulties enrolling their children in preschools, with 55 per cent finding that preschools were unwilling to take in children with special needs. About half were satisfied with their child's education in mainstream preschools, although only a third of parents surveyed were satisfied with the curriculum and facilities offered for their special needs children.
The first part of the survey, released on May 31, found that close to two-thirds of respondents felt that Singaporeans are willing to share public spaces with children with special needs, but are not willing to interact with them.
A National Council of Social Services survey of 1,000 people with disabilities conducted earlier this year also revealed that 62 per cent of the respondents do not feel accepted or included, and felt they were not given opportunities to reach their full potential in society.
While more resources have been dedicated to improving the lives of children with disabilities through more funding for education and therapy, at least one expert said that more needs to be done. Researcher and clinical psychologist Dr Kenneth Poon said more inclusive facilities should be built, and more training provided for staff in public and community spaces.
“We can (also) foster more opportunities or relationships that can be developed between typically developing children and children with special needs," he added.
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30 Jun 2016
CHALLENGES
1) No conveniently located and affordable special needs Daycare cum Activity centre
• Meant for 6 to 20 years old, dependent on others, low functioning to moderate special needs persons (SNP), not attending mainstream
• AWWA is for multiple disabilities but located in Hougang. No school bus to ferry students living in other areas, eg West. CPAS is located at the other end (East), cost 1/3 of Rainbow Centre and heard from friend it has school transport to my area. I may ask for a transfer if it is hassle free.
• Student care centres are for mild mainstream students. My girl doesn’t qualify.
• Most special needs full-time working parents have to rely on live-in domestic maids due to lack of daycare centre. Not all have the luck to find a good and reliable helper
• Wish there’s a special needs Daycare cum Activity centre that isn’t so strict on paper qualifications. The key person running the Centre eg principal, therapists should have paper qualifications and experience but the Centre Aides (CA) should focus on relevant experience. Foreign Domestic Workers/Domestic Helpers/Maids who have experience are best suited for such newly created positions. CAs will feed, play, carry out tasks recommended by in-house therapists, supervise completion of school work, swim, bathe SNPs, etc. These CAs are live-in (in the Centre) just like FDWs, similar employment terms. Only difference is that they are paid higher than FDWs (unskilled workers) but lesser than certified fresh grad nurses. Male CAs to be recruited if there are teenage boys.
Poly students who are studying related courses on healthcare, business management/admin, accountancy, psychology, occupational, physio, speech, childhood teaching, etc can be attached to this proposed new Centre. It gives our local students hands on experience and not lose out to foreigners. In case you didn’t notice, many positions are being offered to foreigners because they have a bit of experience.
* Special needs daycare cum activity centre, ideally to open 6 days (Sundays and public holidays closed), 7am to 7.30pm. Not all parents work 5-days, some need to work on weekends. It is not a half day centre like mainstream student care centres. Some special schools are located too far or don’t meet the needs of the child, no improvements shown so parents eg me, rather place the child in full day care, then we can focus on work, no need to spend time and travelling costs on logistic – Home/School/Centre. It is better than employing a FDW to live with us or sending the child to special school to “waste time”.
* Ideal ratio: 1 CA vs 2 SNPs
* Nutritious food to be provided – 3 main meals each day.
* Parents can choose to place the child for full day care or half day, not strictly half days like Student Care Centre on school days
* Centre’s location – walking distance from mrt (wheels friendly). If not, half hourly shuttle bus to ferry SNPs to & fro selected mrt stations/places.
* Each floor will have a ramp and lift.
* Centre fee should be heavily subsidized for full time and part-time working Sporean parents, no means testing required.
* An ideal Centre should have hydro swimming pool, outdoor special needs playground, softplay (indoor cushion playground), sensory room, computer/TV room, ADL room (daily living skills room), a plantation (green house) for SNPs to plant/water/stroll/exercise/do farm therapy/nature, beds to sleep/lie down for certain SNP, etc
2) Rare Genetic - Angelman syndrome
Angelman syndrome is a rare genetic disorder affecting males and females in equal numbers. The prevalence of Angelman syndrome is estimated to be approximately 1 in 12,000-20,000 people in the general population. Most cases of AS are not inherited, particularly those caused by a deletion in the maternal chromosome 15 or by paternal uniparental disomy.
Note: Down syndrome is the most common chromosomal disorder, occurs in about 1 in every 700 babies born.
Characteristic:
• Developmental delays, such as lack of crawling or babbling at 6 to 12 months and intellectual disability
• Lack of speech, although some develop the ability to speak a few words
• Inability to walk, move or balance well (ataxia)
• A happy demeanor – frequent laughing, smiling and excitability
• Seizures, usually beginning between 2 and 3 years of age
• Stiff or jerky movements
• Small head size, with flatness in the back of the head (microbrachycephaly)
• Tongue thrusting
• Light pigmentation in hair, skin and eyes (hypopigmentation)
• Unusual behaviors, such as hand flapping and arms uplifted while walking
You receive your genes, which occur in pairs from your parents — one copy from your mother (maternal copy) and the other from your father (paternal copy). Your cells typically use information from both copies but in a small number of genes, only one copy is active. Normally, only the maternal copy of the UBE3A gene is active in the brain. Most cases of Angelman syndrome occur when part of the maternal copy is missing or damaged. There's no cure for Angelman syndrome.
Complications:
• Feeding problems may occur during infancy often as a result of poor sucking ability. Infants with AS may also have swallowing difficulties. Children or adults with AS may experience constipation or gastroesophageal reflux disorder (GERD), a condition characterized by backflow (reflux) of the contents of stomach or small intestines into the tube that connects the mouth to the stomach (esophagus).
• Hyperactivity. Moving quickly from one activity to another, short attention span, and keeping hands or a toy in their mouths may characterize children with AS. Hyperactivity often decreases with age, and medication usually isn't necessary.
• Sleep disorders. People with AS often have abnormal sleep-wake patterns and need less sleep than normal. In some cases, sleep difficulties may improve with age. Medication and behavior therapy may help control sleep disorders.
• Curving of the spine (scoliosis). Some people with AS develop an abnormal side-to-side spinal curvature over time.
3) Baby to Teen
Time flies, 13 years …. seems like a blink of my eyes. Six years ago, I was a homemaker. Being trapped at home facing a SNP 24/7 is no joke. I love my princess even though she has given me a bleak future. I’m worried, afraid the day we have to live S behind and don’t know is there any person or place that we can place her so that my son is not burdened by her.
I have a very nice and understanding supervisor who knows I have a special needs child. I am not young so if one day my company decides to kick me out, it will be hard for me to find a good job with sustainable income … enough for me to save money for unforeseen circumstances and before I hit retirement age.
Research studies have estimated that between 20-80% of children have difficulties with sleep, with the most problems occuring between two and six years of age. When S was a baby, her day is my night. You need a lot of energy for her active nights and still need to carry on with your day chores. I am not the kind who can sleep a little and then continue the remaining hours nor am I the type who can fall asleep easily, regardless how tired I was. Some Angelman children have to take medication for sleep disorder.
Some Angels sleep only a couple of hours at night but wake up very early and some fall asleep very late and wake up late in the morning. This can disturb the school schedule or therapy sessions and it is exhausting physically and psychologically for the caregivers. We all know the effect of a bad or poor night of sleep on prolong basis, it can ruin a person’s health if you’re the only caregiver.
4) Teenage to Adulthood
Caring for teenagers with special needs can become more difficult as they grow larger, stronger and heavier and things get more complicated or out of control.
S is non verbal, unable to express what she wants or tell me which part is in pain. S has global developmental delays, which means she looks like a teen but her IQ and behaviour is like a toddler. My angel can be rebellious at times and hits her own head when she failed to get things that she wants eg changing Youtube shows. She doesn’t know what is right or wrong, what are the right things to do, what is suitable in public and how to befriend/show affection to someone. Looks impossible to get through the teen years, stay out of trouble and avoid dislikes by the public or extended families without proper guidance from the special needs professionals and a change in public’s views.
Though she has disabilities but S did contribute joy with her happy demeanor.
5) Subsidy and govt funding for all special needs families, no cap or per capita $2500
The costs involved to raise a SNP are not covered by medical insurance or govt, we often feel alone and over-stretching ourselves. Those not in our situation simply don’t understand or are in naivety. We certainly want our children to become better but the costs involved made some parents take the easy way out, ie not spending on private therapies or equipment. There aren’t many who have the option to sell a private property and downgrade to HDB flat or live with parents.
Many of us didn’t chose to be a burden to the society. If KKH hasn’t failed me, S won’t be on this land ’begging’ for leniency to live well. Lifelong means SNPs will likely require on-going care and support. The care and support will only cease when the SNP pass away. Lowering our expectations to the minimum still require spending more than a normal family, especially during the initial years. You spend money to run tests, frequent visits to the doctors and therapists for newbie parents, buy equipment or medical aids, etc.
For the younger ones (Early Intervention), parents want to see hopes, not a fearful future or made to face one hurdle after another due to policies that aren’t tailored to different ages, disabilities/medical diagnosis. Being bombed with a SNP is hard to accept. Having a govt that isn’t doing much to help, gave very surface assistance, eg ‘one-size-fit-all policy’ made our lives miserable and frustrated. Often, social workers or grassroots persons just pull out some existing policies or strict means-tested schemes to satisfy us or close our case asap. When went in depth, it is either unsuitable or S failed to meet the basic requirements, then social workers or grassroots persons will disappear because they can’t offer anything or are competent to explore workable alternatives for us. We are left dangling in the air. They hope that as time goes by, our problem will miraculously disappear and not ballooned to bother them!
There should be affordable programs and strategies, a one stop centre/VWO that can help teens move to adulthood smoothly, with dignity and recognition that they are part of Spore, not intruders. Allow those with learning disabilities to communicate, express their needs, maximise their potential and achieve independency - capable of looking after themselves or living in the community with minimal support.
There should be a one stop govt office capable of ‘reading’ the real needs, suggest feasible schemes or policy for us to tap on. Don’t make parents do merry-go-round and then find themselves back to square one. Parents are not being fussy, unappreciative but social workers and policy makers seemed to have misunderstood. Social workers, relevant ministries and policy makers should try do actual problem solving by doing everything on the SNP’s behalf (case studies) – look at a few families, see what they are facing, use the existing schemes vs the SNP’s needs/living area/disabilities/parents’ working hours and see whether the policies are workable, how beneficial are they in actual circumstances and the costs/time involved to make use of the policies.
Bringing up a special needs child is God’s gift? Is it a blessing, a bundle of joy, an eternal pain or financial drainage?
• Visiting doctors is definitely more often than normal children
• Special needs strollers, assisted/communication aids are mostly imported. Eg my canopy (sunshade) cost about S$250. Poly students and innovative manufacturers probably can develop similar equipment and aids but at a much lower cost.
Observation: When I was in mrt or lift, noticed people like to hold on to my flimsy but expensive canopy (sunshade). In the mrt, there are grab holes and metal poles but commuters prefer to use my teen’s stroller as a support. There was once I said to a lady in the lift “this is not for you to hold”. She said “I worry I would fall”…. (fall in a lift??) When the lady left, a man walked in and the first thing he did was to hold my canopy before moving inwards.
Who is going to compensate me or buy me a replacement if my canopy breaks? Some people aren’t observant, lack of awareness so just blame on my bad luck? Public should be educated that the things we use are expensive. Many things we own don’t come free. We don’t have a choice, there aren’t any cheaper alternatives, a central equipment loan centre or govt subsidy to obtain the necessary stuff because your household income exceeded $1500 per month. There are a few Charity and Wish organizations to help without going thru means testing but they only help you once in a lifetime. We treasure what we own, want to make full use of it and we don’t want to waste money unnecessarily.
The income cap seemed to have revised to $1800 or $2000 but this kind of unrealistic means testing made many of us ineligible. These days, a fresh poly graduate is already drawing more than $2000 so how many parents in the age range of 20s to 50s qualifies for govt help?
Means testing are often conducted quarterly to avoid dependent on govt funds but we are having a lifelong journey and most of us didn’t choose to become a special needs parent. I felt being punished by our country for bearing a child that can't contribute. People felt parents have done something bad, this is our karma so we shouldn’t be included in the society and live a smoother life?
The odds seem stacked against you and if people could give us a bit of space, more tolerance, don’t be too quick to finger point at us, don’t be so calculative on our SNPs’ needs …. we could go a long way. Very often, we're struggling to start with or trying to steady ourselves then people knock you down cruelly or accidentally.
The lack of support and understanding can wear us down. The sad fact is that, we cannot curl ourselves in a corner, life still have to go on. We need food, money no matter how thrifty we are because we have ‘no license to end our lives’. We are born as Sporeans, this is our home, the place we were raised and educated. We are not foreigners or permanent residents who have another place to go back to … eg escape to a place with lower living standards.
• School is short of therapists, private therapies are costly, not subsided so even though we are keen to help our child, financially we are reluctant to throw $100 per hour on therapy.
6) Special school /Therapies – continuous learning
Is there a standard procedure, a milestone chart for parents to see and request what their child is entitled to/lack of based on the generous funding that govt gave for older kids - Programme for Pupils with Multiple Disabilities (PPMD)? Is there a protocol to say each student should receive how many hours of therapy each year, per age group?
Parents are trying to do all the right things and giving our children the best possible care and treatments but is special school trying to help? The better the training received by the child, the greater the hope for the child's ability to develop and become independent, am I right?
Therapies are essential when the child is in Early Intervention. What about those below 12 years old but biological age is merely 2 years old? The 18 years old teens are considered going to graduate from special school, no longer need school therapies? The special needs teachers and therapists don't understand Chronological age vs Biological Age? These educated people in SPED schools don't know, who else should know better than parents and the public?
People don't understand that chronological age shouldn't be used to measure our children. Putting a stop for our special needs children to learn or completely stop their education at 18 years old is really unfair and unkind.
I find chronological age is an unfair ‘ruler’ to measure my teen’s ability. S is deprived to learn! If it isn’t possible to customise, then there must be a way of reducing the emphasis on chronological age, a better way to help our children live well and parents be less stressed or made to knock here and there by the inadequate and uncompromising system here.
When S was younger, YPS’s reasons for not giving 1 to 1 therapy was short of therapists. S was fully discharged at the age of 10 years old because YPS felt she is doing fine. School meant that is the best my teen can go? YPS has tried to maximize S potential or putting a stopper for their convenience? I don’t agree with YPS that S is doing well. S speech, behaviour, motor and fine motor skills are poor compared to others. I believe S can do better if school is willing to spare time for her. I have given feedback, requested for therapies during every IEP meetings but she's off the school support. This year, 2016 I gave up requesting for therapies. School has dropped S, what can I do? Blame the special education system?
7) Motherhood
Six years ago, as a stay home mum, I’ve no off days, no personal time or a few hours to break free from S, no extra income or spare money to save for the future. All the while, the job of a mother (vocation 天职) is to take care of children, do housework, cook, etc. Some people simply felt I shouldn’t employ a FDW and escape from my vocation. Who’s going to give me free money?
Some insensitive people felt it is my duty and parents shouldn’t employ maids which they classified as slaves and not a necessity in Spore households. Without a FDW, a person to help me and enables me to work full-time with a steady income… I wouldn’t have come this far. Raising a SNP isn’t as simple as you thought, everything in Spore is about dollars and cents, not compassion or empty talks! We don’t live in Western countries whereby you don’t work you can still have money, eg Switzerland, unconditional basic income of 2,500 Swiss francs (S$3,480) a month to each adult. I can try to be strong for my family but have you forgotten that I’m not invincible? I know she’s my girl, I gave her a life but this is a lifelong journey so we need family or affordable external support.
If you care and love your special needs child, you'll realise that we are alone to protect and fight for them so full time caregivers, the homemakers are easily overloaded and could meltdown just like 32 years old Rebecca Loh, an unemployed single mother who pushed her 9 years old son out of their home's 5-storey window, in year 2013. This year, a 43 years old mum was jailed for pushing her autistic son out of window.
In USA, there are Home health aides or personal care attendants to help out. Depending on the child's level of need, these providers come into the home to help family members in a variety of ways. In addition to providing respite to family members and being a companion to the adult child, home aides assist with duties requiring more physical strength or perform specific assignments such as bathing and dressing. In Spore, govt assistance and support have to go thru means testing. Parents had to pay full costs, no subsidy or respite assistance readily available. What can I do? How to survive with just one miserable income? How to avoid burnout?
Having an understanding domestic helper really matters because she has to accept and know my child is not violent or purposely doing things to make her angry. FDW tries to help by minimizing S bad behaviour with the guidance of teacher/psychologist because mummy is not a trained professional in special needs. If there’s a need for me to work part-time and a special needs Daycare Centre available for us, I don’t mind ‘reclaim my vocation’ and free my FDW from ‘slavery’.
Some people don’t understand or just plain stubborn to realise that if I work part-time in an office, it means shorter working hours. If the school or daycare centre is far and have specific timings to accommodate my child, in terms of logistic it is a chore and not worth carrying out such a plan on a daily basis. It will incur additional travelling time and money, not forgetting that I’m only drawing the salary of a part-timer. By the way, when the idea of part-time came in few years ago, I requested YPS to allow S to be in class without a stay-in caregiver. There are students in the same class without caregivers from Mondays to Fridays but YPS firmly said no to me.
8) What rights does a Mother has?
When I had a mis-abortion (foetus no heartbeat at 9 weeks), I requested Bt Batok polyclinic to refer me to KKH, hoping that under the professional care, take tests during 1st trimester to play safe and ensure that I was conceiving a normal child (S) … when I was pregnant in year 2002. I had no family history, thus KKH felt unnecessary to waste time on me.
KKH made life choices for me, it was cruel to keep me in the dark and gave me the impression the foetus was alright. As part of human rights, shouldn’t each patient and family be entitled to make decisions which they feel is best for them? My teen doesn’t know how the society views her, oblivion of the unkind looks, what she’s entitled to, how to earn for a living (survival skills), etc, because Mother will shield her. Mother is the one who carried the foetus to full term and gave the child a life, at the same time dragged child to a harsh world, made her became an intruder into the common living space.
Having intention to abort the unborn, some people would want to lurch forward and accuse me of being cruel, a murderer who is not giving that unborn a chance to live or see miracle. You are not in my shoes, how can you condemn and felt life is going to be easy raising a SNP who is incapable of taking care of herself? Some non-special needs parents preached and thought that they can do a fantastic God-blessed job. They strongly felt aborting a defective foetus is taking the easy way out. If doctor warned you but you chose to accept your unborn, don't blame others for your misfortune because you made the decision to be cruel to yourself and immediate family. It is hard to make some people understand this is a lifelong journey and not many are capable of handling well, as well as have sufficient funds to last till their child’s last day on earth.
Being told your unborn child is abnormal is devastating. My 11 weeks old foetus after S was abnormal but letting that unborn go was something I had to do because one S is enough. We are not gruesome and barbaric mothers killing healthy babies so why aren’t we entitled to make the right choice without people brawling or throwing furtive glances at us? Mothers shouldn’t make decisions that someone else pressurized you to go along with and then you live with regrets. When the foetus is aborted, parents feel sad and take some time to glue the shattered heart back. Aborting a defective foetus doesn’t mean the parents will celebrate freedom and forget that unborn – the not fully human life. Do you know some parents are tortured by their decisions and asked over and over, are they doing the right thing? Some could be punishing themselves for not waiting a bit longer for miracles to happen.
I didn't know my request for detailed tests were brushed aside by KKH until my girl was diagnosed at 11 months. Angelman Syndrome is rare in Spore so we had to look for information from the internet. When people asked about S, what happened to her, it was hard for me to control my tears. We could not believe that we had hit jackpot. We don’t understand why we were selected to take such a tough life journey.
From that day of diagnosis, I HAD TO BEAR THE CONSEQUENCES and KKH walked away irresponsibly with Spore Medial Council’s pro-KKH guidelines. Is this fair? As subsidized patients, we were seeing different doctors so my fears and 'story' didn’t create any impact. If I had a regular gynae, maybe he/she would take note after hearing my 'story' over and over again. If I have chosen a private gynae, spent more money, I might not have a traumatic/uneventful life. KKH's system doesn't allow subsidized patient to stick to 1 or 2 doctors. I'm sure it won't hurt any professional's ego just to let a pregnant woman have a peace of mind (run tests at her costs). I strongly felt unduly treated but I’m powerless to fight back.
Doctors go through denial or just too confident about themselves? I believe I’m not the only mother who sensed something was wrong with the way our child interacted or behaved. Rather than respond immediately to the parents’ concerns, the pediatrician reassured me and told me not to over react. S was seeing KKH’s pediatricians regularly before she was diagnosed. Again, my observations were brushed aside. I asked PDs why a baby more than six months old, can’t even sit up (was so wobbly) but the PDs said some children are slow. KKH only decided to view my girl’s case after I presented a referral letter from the polyclinic. My girl was already seeing KKH so call professionals REGULARLY but my concerns had to be voiced by another person - a polyclinic doctor not specialized in children!
I don't know anybody who is influential enough to help voice a Mother’s concerns or worries. What rights does a mother has?
9) Public acceptance/public disciplinary
Children with special needs deserve society's understanding and compassion.
Many people have misperceptions about people with disabilities. Sometimes, even extended family members do not acknowledge children with special needs when they are in public places. The calls for inclusion of people with disabilities have not gained traction with many ordinary Singaporeans. Probably secondary schools, poly, junior colleagues and universities should have a twice a year volunteerism to work with special schools - organize activities (sponsored & partnered by companies), accompany the SNPs for doctors’ appointment or sit in the class as aides and spend time understanding the SNPs. On this land, there are not just elderly who need concern, govt support and help to move on … we need similar safety net. Educate the youngsters, let them spread words and gradually accept there are SNPs co-exist on the same land but hidden from your views.
“Building a culture of acceptance and understanding requires every individual at all levels - from public-sector organisations and businesses to schools - to get involved, and they can do so in many ways.” …. Marissa Lee Medjeral-Mills (Dr), Disabled People's Association
It is not easy to get family support because they do not understand what special needs persons and parents are facing or needed most. We may be your daughter/son, a stranger or relative but your normal parenting experience isn’t relevant to us. You didn’t try to understand my predicament and just lecture me or rated me as Stubborn, not doing my utmost best for S. You don’t understand what is hindering us to move on effortlessly and the feeling of powerless.
As my child gets older, I receive more and more unpleasant looks or hurtful remarks about my bad parenting. S looks normal if she sits like a good girl, no unusual acts or make odd sounds. For a normal child, it is easy to teach but for SNPs, they need to be trained and take lots of time and effort to be corrected. Raising a special needs child is hard work. They can take every ounce of energy and tonnes of patience.
To help the public identify SNPs, should SNPs with invisible special needs wear wrist bands? There’s a chip in each wrist band. When scanned, it will display the SNP’s particulars just like NRIC, contains the medical diagnosis and acts like Developmental Disability Registry – DDR card.
Unlike a person in a wheelchair, in breathing aids or has distinctive looks, some conditions - such as autism, attention deficit hyperactivity disorder (ADHD) and intellectual or developmental disabilities, are not immediately apparent. Just like some women are pregnant but we thought she has a tummy due to excess belly fat.
DDR ID Card is an identification card that is generated through the Development Disability Registry administrated by NCSS for the safety and protection of persons with disabilities and seniors with dementia. The ID cards help to minimize cardholders from being victims of wrongful accusation and also provide a source of identification when they are lost, providing a greater sense of ease for parents and caregivers when persons with disabilities and seniors with dementia are unaccompanied outside of their homes. It would also enable members of public to extend appropriate assistance to them. Cardholders can also enjoy discounted rates for services and access to facilities offered by participating companies.
I have received a number of public comments: “such a big girl still sitting in stroller”. If commuters automatically give up seat in mrt, let my girl rest, I think I can try not bring her stroller out on short day outing. Noticed people would give S a weird glance and rather stay glued to their seats. My angel can’t be too tired. Fatigue triggers seizures. Another example, S let out a sudden scream in a peak time food court. We got an instant remark "so noisy" and an annoyed stare. I fully agree S has startled some people but the disgust, stern or disapproving looks people showed made me feel that people aren’t prepared to accept persons with SNPs appearing around them. Sometimes, I felt hurt, sometimes frustrated and angry, sometime just felt a good day had been ruined when I purposely made an effort to bring my teen out. It is unrewarding, discouraging and stressful. People lack tolerance, awareness, unsympathetic and insensitive.
S loves attention so by scolding or beating her in public to please the 'audience', am I really doing the right thing? S doesn't know why she is being scolded or beaten. All she knows is that she has received attention successfully. When my child was younger, I slapped but she smiled at me in tears, do you know how sad and painful I was? Is it necessary to show that I am taking disciplinary action for my child's bad behaviour, example she hit, touched or grabbed others in public? It is not "I didn't teach her properly" or failed to watch her closely – every seconds. Hope public can be kind by giving an understanding or forgiving smile instead of a disapproving glare …. after I have said ‘Sorry’. Is it necessary to please the public and try to make our existence not too obvious/intruding?
Around 7 out of 10 individuals with Angelman syndrome show aggressive behaviour (e.g., hair pulling), however, this does not mean that the person has intent to harm another person. Aggressive behaviour has been associated with over-activity, impulsivity and repetitive behaviour in AS.
To avoid drawing unnecessary attention, unpleasant looks and 'casual' remarks, should we be confined at home for the rest of our lives? Do you know it requires a lot of courage to bring our special needs children out? Do you know most special needs children's lifespan are like normal persons? It is a long, lonely and tough journey…. you don’t know where is the end of the road.
10) S can’t be healed or taught to become normal
• People like to comment I didn’t’ teach my angel to talk. People don’t believe this is part of her ‘defect’, a deletion of chromosome 15 resulted in her speech impairment. Speech therapy can help in communication, maybe not in words but it is costly without subsidy.
• People advised me to get healing thru churches or temples. Some recommended that we become vegetarians, some tell me there will be miracles just that I didn’t try hard enough or insincere.
11) Disposable diapers – a little thought means so much
My teen is now wearing adult diapers, M size (waist 32") is too huge. M size is the smallest adult diaper I could get from the shelf of 3 major supermarkets near me – Fairprice, Cold Storage and Sheng Siong. Commercial baby diaper XXL (waist 22") is too small for my teen. There's nothing in between this gap that can be conveniently purchased in neighbour supermarkets .
Just a little touch of care and thoughtfulness from the merchants/manufacturers (Corporate Social Responsibility) would make many people’s life more pleasant. I know putting in the supermarkets takes up space and the stock may not clear as fast as other diaper sizes (to generate fast revenue) so an affordable online service would benefit a lot of people like me.
12) Ramps/wheel friendly areas/home improvement
Many years ago, I read about the heavily subsidised elderly home upgrading/improvement by HDB. The Enhancement for Active Seniors (EASE) programme is part of the Home Improvement Programme (HIP), offered from July 2012. Improvement items installed in your flat through EASE can make it more elder-friendly and improve mobility and comfort for elderly residents.
We need similar improvements that are tailored for the elderly group in Spore but HDB turned me down because S was a child, not an elderly, even though she needed a safe environment/support such as grab bar, slip resistant floor and a ramp to push her stroller in and out of the house.
EASE Improvement items:
- Slip-resistant treatment to existing floor tiles of 2 bathrooms/ toilets
- 8 or 10 grab bars for first toilet and within flat, and 6 grab bars for second toilet
- Up to 5 ramps within flat to negotiate one level difference in the flat and/or at single-step main entrance
We wanted a ramp outside our ground floor unit but few years ago, town council came (our area was having lift upgrading but we were not covered in the plan) to take a look and felt it wasn't feasible. End May 2016, I saw the stairs leading to my unit (all my ground floor neigbours, including opposite block have this) has bars for residents to hold. Now my teen can go up and down 5 steps herself (I'm hands free and stand closely behind her) but we still need to carry her pushchair/stroller.
Contractors /architects doing improvement or upgrading work should make their designs user-friendly. A number of upgraded areas, eg Z ramps are inconvenient or a hassle to wheel users. Architects should try sitting in the wheel chair to maneuver, see how much time needed and whether it is a convenience or a pain in the neck.
13) Company medical reimbursement
Medical is costly in Spore. When company offers medical benefits that cover staff and family, it is really of great help. Some companies don’t cover dependents who are diagnosed as congenital. Was told their insurance company doesn't cover congenital. How familiar is the insurance company on the complications of each medical diagnosis? Are they the same? Flexible and kind companies can put a cap on each staff eg total family’s medical cost eg should not be more than $800 per year. Corporate Social Responsibility can start from your own staff.
There is a Company that appeared generous to extend healthcare to staff's family but the uncompassionate and inflexible scheme kicked many out or avoided the system. The MHC card issued comes with a $10 co-payment at its authorised GP clinics. GPs in my area have MHC sticker but when you walk in, clinic nurse will tell me the scheme company has chosen has very limited clinics. If you are well or faking ill to get a medical certificate, of course you can travel. When you're unwell, do you want to travel far and find a doctor? The MHC clinics changes regularly. The clinic you’ve visited half a year ago could be off the listing.
Previously, the dependent's card had a co-pay of $5 and a few GPs were easily available in my area. After Company switched to another scheme that required dependants to co-pay $10 per visit, I had to visit polyclinic instead (nearer). Remembered there was once I had knee pain, crack-crack sound can be heard when doctor bended my legs. I felt painful when I walked. Polyclinic doctor prescribed 3 months supply of calcium and glucosamine but Company rejected my claim totally, stating those were health supplements. I asked what else can be used as replacement medication for knee problem and claimable, Company replied none. Company, formerly a statutory board made me felt they are trying to avoid spending too much money. Dependents and staff don't know whether the rejection was correct, intentionally making our lives hard or was it an ignorance. I do hope companies who are biting us or refused staff and dependents' claims as "congenital" to be more human, sympathetic and helpful. If you're afraid we will over spend your money, have a yearly medical cap on the staff and family.
By the way, if child hit 18 years old and still schooling, this company will not reimburse any medical claim. Although child is not working but company assumed such age is capable of financing themselves, independent enough not to rely on parents.
Previously, the dependent's card had a co-pay of $5 and a few GPs were easily available in my area. After Company switched to another scheme that required dependants to co-pay $10 per visit, I had to visit polyclinic instead (nearer). Remembered there was once I had knee pain, crack-crack sound can be heard when doctor bended my legs. I felt painful when I walked. Polyclinic doctor prescribed 3 months supply of calcium and glucosamine but Company rejected my claim totally, stating those were health supplements. I asked what else can be used as replacement medication for knee problem and claimable, Company replied none. Company, formerly a statutory board made me felt they are trying to avoid spending too much money. Dependents and staff don't know whether the rejection was correct, intentionally making our lives hard or was it an ignorance. I do hope companies who are biting us or refused staff and dependents' claims as "congenital" to be more human, sympathetic and helpful. If you're afraid we will over spend your money, have a yearly medical cap on the staff and family.
By the way, if child hit 18 years old and still schooling, this company will not reimburse any medical claim. Although child is not working but company assumed such age is capable of financing themselves, independent enough not to rely on parents.
None of my KKH claims for my girl eye visits have been approved by that Company. When my girl had red eye and required a few visits to KKH, we didn't try to thicken our face to get reimbursement knowing Company is extremely harsh on special needs families. KKH specialist guessed the reason but not very sure what caused the prolonged red eye (one eye). It wasn't linked to Angelman. This unkind Company felt all the visits to KKH are congenital. I read from Angelman forum and internet, have not seen any findings that stated about eyes issues are linked to Angelman Syndrome. My friends' AS children didn't have such 'symptom' so I reckon Company is finding fault and trying to cut money spent on persons with special needs. Or is it our punishment for having a problematic child?
14) When parent(s) passed away – Bleak future
As a parent, your duty is to care and you have no rights to take your child's life, even though he/she is life-long dependent on YOU!
What’s going to happen to S when she outlived us? Special Needs Trust Company Limited (SNTC) to me is purely for those with spare cash to set aside, money that you don’t need to use when you’re alive. It disburse funds to the SNP when parents passed away but it doesn’t have any interest nor does it work like baby bonus, whereby the govt top up/dollar match with a capped amount.
Parents can draw up a will and direct the executor under your will to liquidate the non-cash assets and transfer the cash proceeds to SNTC trust fund set up for the Beneficiary. You can also nominate your Central Provident Fund (CPF) savings and insurance payouts to the trust fund.
Although SNTC posted on its website that if you are unable to raise enough money to set up a SNTC Trust, parents can speak to the Case Managers to discuss possible solutions eg using funds from donors to help reduce the financial burden of setting up a Trust, I am sure there are T&C to fulfil and the cumbersome means testing.
I hope my son is not burdened by S. Ever since my princess was diagnosed, my focus is on her and I have little attention for my son. I love my son and feel really sad that my son by default has to pick up a burden. Do give him the option to pay, leave my teen in a safe and continuous learning Special Needs Centre (similar to old folks’ home) so that his life won’t be greatly affected when parents are gone. I’m not saying I want my son to become selfish and uncaring towards his little sister, cut all relationship when we’re gone ….what I want to avoid is a 3rd person getting his feet totally wet and can’t have a normal life. He can choose to show his brotherly affection and care maybe once a week but don’t force him to pick up a burden that this parents left behind.
Long-term caregiving is not something relaxing and stress-free, especially we are living in Spore which is a place of high living standards and costs. A lot of times, we are on our own. It is a lonely journey that people who can’t understand if you haven’t treaded or involved in full time caregiving.
Words can’t explain well, going thru the ordeal makes those in the same boat, although different diagnoses, understand we’re not demanding, exaggerating or expecting something unachievable from our govt.
* SNP - Special Needs Persons
* AS - Angelman Syndrome
* YPS - Rainbow Centre , Yishun Park School
* KKH - KK Women's and Children's Hospital
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