Friday 6 May 2022

Inclusive society - special needs public acceptance

Raising awareness
We don't want to be different but we've no choice.
Most of us were 'punished' for bearing special children, the costs to raise them are enormous.  Parents had to take means testing before Spore govt 'kindly' offer a helping hand.  Make a comparison:
* Cost of a normal stroller/pram vs a special needs buggy or transporter
* education
* Cost of a childcare centre & operating hours vs Daycare Centre (DAC)
* enrichment programmes vs therapies
* most company's medical benefit (employee welfare) do not cover child with congenital disorder  

Hear from another Angelman family - video
Watch 前线追踪 Frontline, MediaCorp

Can you understand our frustrations, agony and struggles?



2016
AS: I have encountered a number of bad experiences from insensitive persons.  I was either given disapproving looks or unkind remarks.  Many of these "bad people" felt I failed as a parent and not giving my girl appropriate public disciplinary action.  I learnt I don't have to please these people.  I learnt I have to be strong and treat these people transparent, shut my ears or give them a fierce look to let them know I'm offended.  

Recently there was a rare genetic "Purple Parade".  I admired their courage to stand up and get people to know more about special needs.  Having so many setbacks, lack of support (from family and govt), I have "pulled through" so many years.  Suddenly if you want me to open up in public, I'm afraid ... afraid to tell the public I don't have family support.  One of them commented on my parenting skills and said it was for my own good that I "change for the better".  She said she is being frank because we are blood related.  Others like to rub salt.  Rainbow Centre Yishun Park School has denied my girl of therapies such as speech and occupational.  I requested therapies each IEP meeting but school doesn't care.  YPS isn't keen to help my girl, it refused to give my teen rooms to excel or be independent.  YPS pushed us away, ignored us years after years, until last year (or the year earlier) they told me cruelly my girl won't have any therapies, means no more waitlist, no need to waste my tme and effort to request... don't bother to ask, it is fruitless.  YPS is tired of giving me excuses.

Relatives, including my mum felt I didn't try to teach my girl become well.  They felt I haven't tried hard enough.  They refused to acknowledge we were forsaken by Yishun Park special school and our govt.  End Oct 2016 started my teen's first speech and occupational therapies at KK Hospital (when she was admitted to Rainbow, we dropped KKH). After subsidy, we have to pay a hefty S$161.50 for that two hours consultation/assessment, original was $323.  Subsequent 45 mins subsidised speech therapy cost $52, stated as standard in the below bill.  Special needs family looked very rich in govt's eyes?


All bills issued by KK Hospital weren't claimable.  Hubby's company (a very big security company C***** C****) has rejected all my girl's claim and said those are related to congenital (eg eye clinic, therapy, neurology, etc).  CC was previously using AVIVA, MHC/AIA and now NTUC Income.  We were penalised for giving birth to a special needs child.  CC could have set a cap each year and not totally kick my girl out of their medical system.  My son, who has turned 18 years old last year was also kicked out.  He is still schooling, hasn't started National Service!

I'm also frightened that if I'm over exposed and will get public scrutiny because I relied on public transport (mainly mrt).  Too many bad experiences made me worried I'll get the same unpleasant experiences..... being shot on the face isn't fun. 

Woman calls mum of special needs boy "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."

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.

He told The New Paper in Mandarin: "No matter what, we cannot scold someone else's kids or their parents like that. It hurts their dignity. Imagine how the kids would feel?"

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.


One in three special-needs children faces insensitive treatment, 4 Jul 2016, Today
Mr Lawrence Ng, 44, and his 12-year-old autistic son were playing by the pool when another parent came to tell them off for playing too violently.   Another parent, Ms Sally Kwek, 39, recounted how her nine-year-old daughter, who has a rare neurological condition, was mocked by another child openly in front of her classmates.

In both cases, the experiences of parent and child were reflected in a survey commissioned by the Lien Foundation, which polled 835 parents who have children with special needs.

The findings of the survey released on Monday (July 4) showed that about one in three parents of children with special needs reported hearing insensitive remarks made by adults and other children about their child.  Four in 10 parents felt that their child should be spending more time in the community, but about one-third of this group then said that the feeling of being judged hinders them from spending more time in public places and community spaces.

As it turns out, families with special-needs children are least likely to frequent places such as libraries and cinemas.  Ms Kwek said that she had to spend time coaxing other children to befriend her daughter: “The greatest difficulty for a child with special-needs and their families is to socialise … (whether they are) playgrounds or cinemas, there must be outlets for (them) to have access to public places just like any other person, without being condemned or harassed”.

The stress of caring for a special-needs child also affects the family.   Mr Ng said that his son would have meltdowns ranging from destroying things to beating others, and he has had to cut back on social gatherings with friends to tend to him.   During his son’s initial years, Mr Ng and his wife were also on the brink of divorce because of disagreements over parenting styles.

In the first part of a study done in May by the Lien Foundation on public attitudes towards those with special needs, it was revealed that about 70 per cent of the 1,086 people polled were satisfied with life. In comparison, the latest study showed that only slightly more than half (55 per cent) of parents with special-needs children are satisfied with life.

Satisfaction levels in terms of relationship with their child and spouses were also higher among the general public than among parents of children with special needs when comparing both studies.

The latest findings showed that most parents of special-needs children (72 per cent) felt strongly that there is a need for new laws to promote the rights of these children, to provide them with opportunities, protection and access to key amenities.

They saw existing gaps in services, from transportation to medical, and more than half of those polled also had issues with childcare services.  Some 45 per cent said that it has been difficult to enrol their child at a pre-school here, with more than half citing reasons such as the school’s unwillingness or the lack of trained teaching professionals.

The Lien Foundation pointed out that Singapore has ratified the UN Convention on the Rights of Persons with Disabilities, which provides for inclusive education, while the Singapore Government’s Enabling Masterplan had also called for compulsory education for special-needs children by 2016, although there has not been any update on this.  (AS:  Is it really necessary to have compulsory education when special schools are not trying to help and in my opinion is merely a place to kill time?)

Dr Kenneth Poon, who is involved in steering this study, stressed the importance of a conducive environment that allows special-needs children to take part in societal activities.   The vice-president of Rainbow Centre, a non-profit organisation for special-needs children, added: “Inclusion is about participation. For young school-going children, we think about participation in education and that is a very important part of their lives.”


Not all special needs children can join the mainstream straight away, 4 Jul 2016, Today
Lately, I have noticed Voices letters, in particular “Inclusive classrooms may help kids to learn from one another” (June 18), advocating mainstream schooling for children with developmental delays and disabilities.

There are some wonderful aspects of programmes that promote inclusion of children with special needs. By interacting with these children, typically developing children can often learn to be more patient and appreciate the unique qualities of others.

They also learn from children with developmental delays, while at the same time helping them learn skills.  I would caution, however, that many of the individuals with significant developmental delays, such as autism spectrum disorders, require specialised instruction to learn even the most basic skills. These individuals often do not learn many basic skills by simply being with other children who have those skills.  

The research is clear that to help children with significant delays reach their maximum potential, it is important that they receive intensive educational services.  (AS:  fully agree!  Currently, special school, eg Rainbow Centre Yishun Park school, all the while has not given my teen any intensive educational services.  YPS discharged by girl from therapies at 10 years old. Before kicking her out, every year, I have requested for Occupational and Speech therapy... unsuccessfully.)

Educational services, such as Applied Behaviour Analysis, that emphasise teaching specific language skills have helped many children overcome those delays and learn the same academic skills as typical children.

Even with such focused intervention, however, many will need and benefit from specialised instruction throughout their life in order to learn many important life skills.  Many people view the inclusion of children with disabilities in educational programmes and activities with typical children as an effective way of helping them acquire skills.

Clearly, some children with mild delays and who can effectively communicate and attend to their peers would often benefit from interacting with their typically developing peers.  Still, these children often continue to need some specialised educational services.

When provided with intensive, individualised instruction at a very young age, many children would acquire the skills that allow them to learn from their daily learning activities.  Only when a child has sufficient skills to pay attention to what other children are doing and to understand what they are saying would the child benefit from the opportunity to learn by watching and interacting with individuals with typical development.

I am encouraged that some individuals want to help children with disabilities by including them with typical children.  However, children with developmental delays must learn many critical skills to be able to care for themselves, now and in future.

We must therefore ensure that they receive appropriate educational services that help them to not only be included with their typically developing peers but to develop actual friendships and learn from those interactions.

ABOUT THE WRITER:
The writer has worked with and helped children with developmental delays and disabilities in his 40 years of experience as a psychologist with doctoral training in behaviour analysis.

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