Showing posts with label Angelman Syndrome. Show all posts
Showing posts with label Angelman Syndrome. Show all posts

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.

Saturday, 2 February 2019

Girl's menstruation/puberty

SPECIAL NEEDS GIRL
As a parent of a AS girl, I realised there are many things I would like to find out eg puberty but it is quite impossible because nowadays I don't take my girl to school.  Thus, I don't get to meet parents of older special needs girls.  During Club Rainbow outings, I didn't get to chit-chat either because by chance, those that I met, although few years older than my girl but were 'blessed' with no menstruation .... not yet.  I wish my girl has no menstruation forever,  I was frighten of that big day.  What if my house is stained with blood every month?  What if my girl end up with severe pain like a 12 years old normal girl that I met in KK Hospital, year 2014 ....worries and fear.

KKH doesn't recommend that I remove my girl's ovary.  They felt I am cruel. Gynae commonly prescribed pills (contraception pill).  What about the inconveniences and 'horror' .... nobody cares how I felt and the long-term stress, the ordeal with blood! Do take note, my maid is taking care of my girl when I am working full-time.  Nowadays, maids want an easy job.  She may leave and the next person may also be frightened off.

I chat on Facebook with some AS parents in the overseas, they recommended giving pill with some wipe cream for easier swallowing.  By eating pills, the menses will not come every month.  Tried to get into the puberty Facebook page that they recommended but was rejected because I refused to use my real name.  The page owner felt I wasn't sincere or afraid I am a pervert (fake AS parent) trying to learn their secrets/invade their privacy.  Can't blame them.  I have my privacy to protect so I am not using my real name or real pictures in this blog.

I decided that her milestones, our experience may benefit other Spore parents with a special needs girl.  Till date, I am still learning.  Each special child is unique, they may not develop the same 'symptoms' or learning hurdles but parenting them is the same .... lonely and may not be fully understood, supported by other family members and friends.

One of my friend's girl (same age) had her first menses one month later than my girl.  From a girl who is 8 years seizure free, the start of menses triggered seizure.  Another friend warned me to be careful.  Said she knew a child who died due to the 'kick-off' of puberty.


FIRST MENSTRUATION
20 Nov 2015, my girl had her first menstruation. Probably the obvious sign she displayed was scratching her private part - vulva.  Few days ago, a quick glance, I thought her vulva has wrinkles.  Day 2 of her menses, when I was washing her bottom before wearing a new diaper, I realised it was newly grown hair.  My girl's breast started to develop a few months after her 12th birthday.  I was getting cold feet, fear and worries .... finally her big day arrived.   Once thing good about not being toilet trained is that she's still wearing diaper.  Thus, maid was able to detect blood on her diaper.  Phew .... Don' be too happy, who knows my mischievous and highly curious girl decides to pull off her diaper to examine or play .... faint!

Day 1 - her 'lady' transition was not that frightening.  Didn't see her show any obvious sign.  Touch wood, no pain detected.  Sleep wasn't disturbed.
Day 2 - morning, her soiled adult diaper contained more urine than menses.  Night time, due to prolonged diaper wearing, bottom starting to see redness and itchy.
Ended on Day 5.  The whole cycle was manageable.  Maybe as my girl grows older, I'll face more challenges then I'll have to make some drastic changes, eg removal of womb.  Not something I look forward because she'll be in pain and I need to ensure she doesn't touch the wound... could be harder then changing diapers.

2nd and 3rd MENSTRUATION
Dec - just a bit of stain.

12 Jan 2016 - menses that is not heavy, lasted for about 24 hours only.

**Update**
11 months later... Menstruations were manageable.  My teen is now wearing adult S size diaper.

*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*.*
When will menstruation start?
No one can say exactly when your child gets her first menstrual period but she will get it sometime during puberty.

First period usually happens about 2 years after the breasts start to develop.  Some girls may get their period in less than 2 years. For other girls, it may take longer. Every girl is different, and there is a wide range of normal development during puberty.  A period usually lasts from 2 to 7 days. About 2 weeks after the last period, a new egg is released as the cycle repeats itself.

Puberty
Some girls start puberty at age 8 and others may start as late as 13 or 14. Each girl goes at her own pace. So don't think you're weird if you start puberty a little earlier or a little later than your friends.

Boys and girls both begin to grow hair under their arms and their pubic areas (on and around the genitals). It starts out looking light and thin. Then, as kids go through puberty, it becomes longer, thicker, heavier, curlier, and darker.

Girls' bodies usually become curvier. Their hips get wider and their breasts develop, starting with just a little swelling under the nipples. Sometimes one breast grows more quickly than the other, but most of the time they even out. Girls may start wearing bras around this time, especially if they are involved in sports or exercise classes.



Update on 25 Aug 2016
The only + I have for wearing diaper ...a the age of 13+ is that it captures menstruation, fully wrapped and my life didn't turn out scary and gloomy.

It was really hard to find an adult diaper that is slightly bigger than Drypers Wee Wee XXL (a cheap and biggest XXL diaper in the market), that is about 22" waist.  Most hypermarts, supermarkets, etc sell diapers from M size onwards.  Parents like me are stuck with a diaper too small or a gigantic diaper with waist 32" onwards.... you simply can't wrap well.  It is too big so urine will flow out.  Big doesn't mean good coverage and great protection.... useless, waste of money!  I have purchased adult diaper of waist 28"... that's the smallest online... not cheap, no good, too big.

Just want to share I found Dr P 包大人 adult diaper S size, 18 pieces at Giant IMM S$10.80.  It is big (for my girl) but not that huge compared to M size.  When I posted this post, I have visited Giant IMM a few times but the pink packing small size diaper wasn't available for sale.  The only thing no good about this Dr P is that it is in non breathable plastic.   Also the tape can't be resealed if you're toilet training.
Was told this size can be found in Fairprice Joo Koon warehouse/mega store.  You need membership to buy.... would anybody be keen to waste money on membership and don't forget, you can't teleport the diapers home.  You either drive to stock up or take a taxi back.... it is a chore and heavy!


2019
It's really not easy to buy Small size adult diaper from the rack (supermarkets) so after doing lots of homework, last year, I found Dr P diapers online.  Buy 6 cartons with discount from the website, each pack cost around $9.50, WITH DELIVERY.  This is a good deal for parents like me who don't own a car.  Now small size is just nice for my teen, I think I need to look for medium size soon ... well, on the bright side, medium size can be purchased much more easier than small size adult diapers.

Tuesday, 28 June 2016

Behavioural issues

It Changed My Life: Man with the brainy moves, Straits Times, 26 Jun 2016
The "roller coaster years" usually allude to adolescence, but in Mr James Tang's case, is an apt descriptor of his life until three years ago.  His academic journey - from primary school to university - is a series of peaks and troughs: he flunked and aced exams in equal measure.  His career, too, had many ups and downs, traversing both the public and private sectors, chasing at times after money, and at others, after meaning.

His personal life lurched between confidence and insecurity, anxiety and nonchalance. Even his weight vacillated: now a trim 84kg, the 1.8m-tall man once tipped the scales at 105kg.  The turbulence, he believes, is driven in large part by his ADHD (Attention Deficit Hyperactivity Disorder). The 42-year-old has never been formally diagnosed with the neurodevelopmental disorder - marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity - but is convinced he has it after reading tomes on the subject.

It probably explains, the former teacher adds, why he has a soft spot for students with behaviourial issues or special needs.  A passionate pursuit ensued when Mr Tang - who has a post-graduate diploma in education and sports science - chanced upon research which shows there is a relationship between exercise and cognitive abilities.

Today, he is the founder of Brainy Moves, which provides personalised training to improve fitness as well as psychomotor and cognitive skills.  About 70 per cent of his clients are children with conditions ranging from autism to ADHD to dyslexia. He also conducts programmes for schools and institutions, including the Calvary Baptist Kindergarten, East Spring Secondary School and Institution of Mental Health.

The elder of two children of a couple who ran a handicrafts business, he was a handful as a child. In primary school, he was extremely talkative and hyperactive and got up to all manner of mischief like slashing the arms of classmates with metal rulers and leaving mounds of staples on the chairs of his teachers.

"To cope, my parents sometimes caned and scolded me," he says with no hint of resentment, adding that the thought of testing him for ADHD probably never crossed their minds. "They just thought I was lazy, talkative and not focused on what I was doing," he says.

That he was intelligent, however, there was no doubt. When he applied himself, he often excelled in his studies. Restlessness and playfulness, however, often tripped up the former St Andrew's student. He flunked quite a few exams but always pulled through when it mattered.

"Fundamentally, people with ADHD are not dumb, we just have issues," he says with a laugh.  Until his teens, he led a fairly cushy life. The family lived in a three-storey corner terrace house in Bartley and could afford holidays.  But when he was 18, his mother told him she had to cash out the insurance policies she had bought for him and his brother to save their troubled business. The family also downgraded to a four-room HDB flat in Lakeview.

"I had to find my own means to go to university," says Mr Tang, who took a five-figure loan to study mechanical engineering at Nanyang Technological University (NTU) in 1995.  A six-month attachment with an ammunition design firm in his final year convinced him that he wanted to work with people, not machines.  He ended up selling insurance but quit after eight months to become an untrained teacher at Hua Yi Secondary. It was not his first teaching stint. While waiting for his A-level results, he did relief teaching at Teck Whye Secondary and enjoyed it immensely.  "I was then teaching Maths to Sec 5 students. I was 18, they were 17," says Mr Tang, whose students included many who came from dysfunctional families.

Teaching at Hua Yi Secondary offered fulfilment, he says, but something gnawed at him. "I felt that I was not equipped with work experience and I was not adding value to my students," he says.  Although he was about to enter the National Institute of Education (NIE) to get his post-grad diploma in education, he quit and became a management trainee with Borneo Motors in 2002. "But I left with the intention to come back to teaching," he says.  The car distributor gave him the corporate experience he craved. Over four years, he worked in various departments, including workshop, marketing and sales.  

His four years in Borneo Motors were prosperous, in more ways than one. He drew an ample salary which helped him to clear his student loan and get married to a marcoms executive; he also piled on the kilos because of the drinking and entertaining.

Despite the good life, he nursed a deep desire to help children. He went on several humanitarian trips to Cambodia, organising summer camps and distributing food and other essential items to poor communities.  His next gig was a regional one - as country manager in Indonesia - with a German equipment company. "I learnt a lot; I also saw a lot of the dark side of the corporate sector," he says.  That and health reasons - his weight had ballooned to 105kg - prompted him to call it a day.

"A colleague just collapsed and died. I developed hypertension and couldn't even finish running 1km even though I was a track and field athlete in school. It was time to leave," he says.  True to his word, he returned to teaching even though it meant a substantial pay cut. "I felt I had experienced enough to share with students. I don't know why but I have a lot of heart for kids who need help."

He got himself admitted to NIE in 2008 to get his post-grad diploma in education and sports science. But before that, he overhauled his diet and started exercising to lose 25kg in three months.  After graduation, he was posted to Ang Mo Kio Secondary to teach PE and Maths. He told his department head he wanted the most challenging class.  "He laughed and said, 'You don't have a choice. PE teachers are always sent to the most challenging classes'," he says, adding that some of his charges wrestled with conditions such as dyslexia and ADHD.

The turning point came when, over time, Mr Tang noticed changes in his class of 20 students which had their PE lesson just before Maths. "I saw changes in their motivation, in the way that they engaged with me in class. I was curious and started to read up more."

Through a trainee teacher, he met a Korean professor researching the relationship between exercise and the brain. The latter introduced him to the works of Dr John Ratey, an associate clinical professor of psychiatry at Harvard Medical School who has published several books on ADHD as well as the relationship between exercise and the brain. They include Spark, Driven To Distraction and A User's Guide To The Brain.

"The books gave me a lot of insights into my work as a PE teacher," he says, adding that he also ploughed through scientific papers on neurological conditions. "When I read about ADHD, I realised how many symptoms I had."

He began to incorporate what he had learnt into his class. Except for one student who did not sit the Maths examination, all his students passed their N-level Maths paper.  Three years later, in 2013, with encouragement from his wife, he decided to strike out on his own.

In the first few months, the father of three children - aged between four and 10 - earned just $800 doing fitness coaching with a few clients.  One of his first clients, referred to him by his wife, was Dr Jia Jia, the Singapore youngster best known for his series of YouTube videos on Singlish.  Then eight years old, Dr Jia Jia - whose real name is Chua Jin Sen - is dyslexic and has ADHD. His parents wanted him to be more focused.

Mr Tang got the boy to take a psychometric test before putting him on his programme. "After eight weeks, I administered the test again. There was a huge jump in the score. It gave me the confidence to know that my programme works," he says, before launching into an animated discourse on how different exercises can stimulate different parts of the brain to help it become more malleable and supple.

After seeing the improvements his son made, one client got Mr Tang to write a business proposal to formally set up Brainy Moves. He became Mr Tang's business partner and Brainy Moves was officially incorporated in November 2013 with a paid-up capital of $160,000.

The centre in Joo Chiat opened in March 2014 and Mr Tang beavered away, calling on schools and speaking at roadshows and educational fairs to promote his programme. He recruited more than 20 students in its first month of operations; today, the number averages 170.

In November 2014, his wife urged him to write to Dr Ratey to come to Singapore to train him and to give a talk. The public workshop that the Harvard clinical psychiatry professor gave at the SportsHub in November that year was well attended not just by the public but also folks from NIE and the Ministry of Education.

Dr Ratey was so impressed by what Mr Tang had done with Brainy Moves that he agreed to become an ongoing consultant for free.  Word of mouth spread. Last year, Dr Zachary Walker, an associate professor in early childhood and special needs education at NIE, invited Mr Tang to give a couple of guest lectures to his students.

Dr Walker says Mr Tang does three things really well.  "He follows the research which has always shown that movement is critical to learning. He relates very well to children and adults so he establishes a connection with them quickly. And he is always willing to learn more and modify his own practice for the children he works with in his centre," he tells The Sunday Times.

Mr Tang - who has secured a couple of licensees for his programme - says he takes great pride in what he does.  "I interview every single candidate and I tell the parents I will not give them a schedule unless I meet their children and understand their competency and personality," says the entrepreneur, who now has three trainers on his payroll.

Although 70 per cent of his clients have a condition, he has no objections from parents of children who are neurotypical.  "Parents know I have a mix of kids in my class. But I think it's a good thing to let children know from a young age that there are different people out there. They need to learn to accept differences; they should accept differences," says Mr Tang who intends to get his master's and doctorate in special needs education.


He believes more needs to be done to raise awareness of children with special needs who are often misunderstood.  "I really hope that our education system will become more inclusive. The number of people with special needs is huge and many fall through the cracks. I hope the Government will allocate more funding for early intervention."



***********************
SPITTING
Ever since the school speech therapist taught my girl to blow whistle, she learnt how to spite saliva.  The therapist left and position was vacant for a few months.  As usual, Yishun Park school said unable to slot her in when a new therapist was recruited.  So spitting saliva became a bad habit since my girl was 9.5 years old, a way to express her excitement or draw attention.  My girl is an attention seeker.

The school physiologist said I should distract her, teach her the proper way to express her happiness, anger and sadness.

I can imagine a stranger, family or friends who were 'mouth washed' by my girl.  If you scold her, she gets your attention and will be encouraged to do more.  Slapping her mouth or apply chilli sauce on her tougue aren't usual but how many of you understand?  To you, I didn't discipline her.  You felt I failed my duty as a mother to correct her.  You get irritated and angry.  There are some kind strangers (rare) who assured me "No problem, don't worry" or say "it must be hard to take care of such a child" .... thanks for being so understanding.  You have made me less guilty.


REFUSAL TO TOILET TRAINING
Have reminded my current maid to get my girl to press on her toy phone to indicate she wants to pee or poo.  Haven't achieved results as my maid wasn't that keen to 'educate her'.  As she gets older, it has become really tough to train her.  Now a teen, she is stronger.  She can resist and there's no way I or the maid can get her to get up to walk to the toilet.  Previously, school advised to get my girl to get a certain item, eg toilet roll to indicate she wants to go to the toilet.  As a non-verbal child and maid not constantly eyeing her, it is hard to catch her holding the toilet roll or picture card.

My naughty girl likes to pee in my bed so if I'm not around her, I'll close my bedroom door. She also has the bad habit to poo in her bed, with diaper .... almost everyday. Noticed that many times, her poo wasn't that smelly so maid failed to detect.  The weirdness part is, my girl can sleep well with poo in her diaper, doesn't cry.  She has a toy phone hanging on her bed but she refused to cooperate and do something good.

While diaper-free during the day, she pee or poo in her pants even though not long ago, she was asked to go to the toilet.


HITTING
My girl will hit her own head, mine, surrounding eg chair or table when she's angry or didn't get her way.  She seems like not in pain when she hits something hard.... didn't cry.  My girl has short attention span (doesn't sit and watch a show throughout) and good memory on shows/songs/MTV that she has watched on Youtube so if I don't play some new or interesting ones, she'll start hitting.  I have tried holding her arms tightly but she is really strong, during the struggle she could hit something and end up with bruises. Sometimes, in her resistance, her head could accidentally hit my jaw and I end up with painful ulcers.



Sunday, 22 November 2015

Baby to 10 years old

I can remember my girl's, vaguely...
My girl was born full-term, no implications.  During my confinement, I don't understand why my girl regurgitate so much and why she can't suck well from her bottle.  Her sucking on my breast wasn't strong.  After she was diagnosed, I found out from internet, it was due to her tongue thrusting.  Polyclinic referred my girl to KK Hospital for milk regurgitation at three months old

6 months old - cannot sit up or flip.  Told KKH doctors but they said it was too early to comment anything, some kids are slow
11 months old - FISH test, CT scan, EEG.  Seeing my girl being poked to draw blood made me cried. Forgot it was 2 or 3 person trying to get blood from her almost invisible veins.  My girl was struggling and crying while I was asked to wait outside.

19 months old - attended Rainbow Centre Margaret Drive
21 months old - able to flip
My girl was given physio and occupational therapies.  When she was almost 2 years old, after she managed to walk with strong support, we rented a K-walker every school holiday so that she could exercise.  3 months after she turned 3 years old, she was able to walk without any support, wide gait and both hands upwards.
 something like this, gently push and move forward.  Can't find the model that my girl used.  It looks more study/heavy.
My girls hates this, need to hold tight and pull along.

3 years old - first seizure.  She turned purple, jerked but eyes could trace the parents. Admitted to KKH.  Had CT scan and EEG.  Prescribed Epilim.  Till-date, has been drinking this syrup.  Heard some other AS were given tablet.  She had fever before her seizure started.

5 years old - Had a severe seizure, no fever, just walked too much.  That day, for convenience, I didn't bring her stroller because I can't manage her and a stroller on the bus.  My girl had involuntarily jerks that occurred throughout the night.  I was alone, hubby was doing his night shift.  Even though sleeping, my girl could be jerking.  Once a while she would be startled and cried.  I sling her, kept her close to me and we slept on a reclining chair.  Read from internet that seizure could be triggered by fatigue.  Learnt my lesson, ensure my girl has enough rest or I go out with a stroller so that she can sit and rest.... till now, 13 years old, she goes out on her push chair.  Many strangers/onlookers often gave my girl weird looks, some bluntly said "so big still sit on stroller".  I wish they could pretend we are invisible, otherwise, just nod or give us a friendly smile.

We joined Club Rainbow.  KKH doctors didn't tell us there's such an organisation.  I learnt from a mummy, same AS.  Also realised there's a CRS desk in KKH, near Social Work dept .... after wasting so many years!  Once my girl hit 5, she was kicked from EIPIC to PCMH.  I realised some others 'graduated' when the student hit 6 but mine was earlier.  Reason: to make way for other EIPIC new students, my girl was doing quite well.  Ever since my girl left EIPIC, her progress were not noticeable.

6 or 7 years old - transferred my girl to Rainbow Centre Yishun Park (YP) because it was tough to squeeze into the crowd mrt ... office peak hours.  Ever since we left Margaret Drive (MD) school, most of her therapies were on waitlist.  By the time was managed to get weekly therapy, her progress was greatly slowed, we lost the momentum.

Adaptive Bikes   Learnt to climb stairs and cycle.

As my girl gets older, it became very hard to train her, get her to do things right or be given weekly therapies.  Soon, her therapies were cut from weekly to alternate week.  Occupational and Speech were removed for the benefit of other students.  I am not working, how to enrol my girl for private therapies?  Govt isn't giving subsidy for private therapies or equipment.  Am I suppose to sell my HDB flat to get money?  One special needs family sold their condo at a loss and got themselves a HDB flat.  They converted one room into a therapy room.  Some parents sent their kids for external support eg Glenn Doman.  KKH advised us not to go for therapy session when they found out my girl was attending special school.  Anyway, the therapy i KKH was once a month so at that time (still EIPIC), I was fine to be out because the therapists and class teachers were fantastic, really helped a lot.  At least my dark days weren't that bad.

At this age, I think her first milk tooth that dropped one year ago, grew!

10 years old - YP stopped all my girl's therapies.  After repeated feedback, YP placed her in group consult, meaning not one to one but a few students in the session.  Attending YP was something I felt like killing time.  My previous ex-filipino maid was of great help during employment.  She learnt from therapists and teachers and enforce work time at home.  Due to her misunderstanding or sudden change in personality after taking home leave, she left me.

My advise to parents
It is fine to cry and trying to accept such a child.  Denial would cause delay in receiving training and therapies that will help the child to learn and grow.  Don't rely on special school if you are financially capable, give him/her external support.  If not, learn from teachers, practice at home, daily.  The momentum and regular practice is important.  Don't count on govt, govt and its offices look at your monthly income and often give excuses of insufficient fund.  In case you didn't notice, govt is fond of giving lip service by throwing out goodies but not everybody benefit from its policies or special grant.  The older your child gets, the lesser you can tap on the fund or grant.  Early intervention is important, as long as your child is diagnosed with special needs!


This is what I've copied from another AS parent:
Scotty was the product of a full term uncomplicated pregnancy.Weighed 7lbs 15 oz and 19.5 inches long.  Had some jaundice and difficulty regulating temperature.Had a lot of difficult breastfeeding switched to formula.  Still had difficulty and it seemed like more formula dribbled out of his mouth than went in but he was gaining weight and content.

2 Months- starting laughing
3 Months- developed huge contagious belly laugh, turned towards sounds and made gurgling noise when "talking"
4 Months holds toy, hold bottle, reaches for objects, put objects in mouth, started solid food, slept all night
5 Months rolled from tummy to back, could sit up with help
7 Months rolled back to front, play peek-a-boo
9 Months Says "AH", sit alone , waves bye- bye, rolls all over house as a means of getting somewhere
12 Months starts to G.I. Joe crawl favoring right side, eats finger food, drinks from a cup, stands leaning on furniture if we stand him up, shakes hands, high fives, follows simple directions like..Get a diaper, or find the dog...Screams AH to get our attention. Can identify eyes , lips, nose and mouth, points to pictures in a book like duck frog tiger and all the Sesame Street characters ( This is just a sample of his cognitive development)
G.I. Joe crawling 13 months
14 Months first tooth
16 Months pulled himself to standing
17 Months started climbing on furniture and crawled on all fours
21 Months walking around furniture and climbing up and down stairs taking a few steps
23 Months he started walking unassisted.  He had a typical Angelman's wide gait arms up.
2 years started saying "B" sound.  2 years 10 months  he could feed himself, play basic games like patty cake, Itsy Bitsy Spider etc.  Unfortunately this is when his sleeping problems also began....BAD!
3 years noticed how incredible his memory was for people and places.  He could ride a big wheel and a little red trike, he was taking horseback riding lessons and competent in basic sign language-eat, drink, more, please, thank you , sorry, to name just a few.  He probably had about 20 signs at this time.
12 years toilet trained and mostly dry at night


Scotty Today
Bathroom Issues
Those without Angleman kids might want to skip this...trust me on this unless you like to talk about poop!
This is ALWAYS the first thing everyone wants to know.  He is completely trained and does not use a diaper.  He sits down to pee. He still needs help pulling up his pants, washing his hands and wiping his bottom, but he is pretty much self sufficient.  He occasionally wets the bed, but not very often.  Our biggest struggle right now is getting him to wait to pull his pants down until he gets in the bathroom.  It is almost as if he thinks I have to go and drops his drawers wherever he is at the moment.
It took us about 10 years to train him and it wasn't pretty.  The worst of it lasted a few years when he decided to use his poop as an artistic medium and we would walk into his room and everything was covered in poop including him.  That was absolutely the worst, grossest thing we have ever had to deal with.  Not something you can talk to your friends about that's for sure.  My mother designed pajamas that zipped up the back so he couldn't access it, but of course he was able to bypass any attempt we made to fix this situation.  Finally he just stopped. Thank the Lord!

Sleep
Or lack thereof I should say.   Scotty stopped sleeping when he was two and didn't pick it up again until he was 8 and that was with the help of medication.  For those years he slept 4 hours a day...A DAY!  And they were never in a row.  We were the walking dead and he was the happiest sleep deprived human I have ever seen. We tried absolutely everything.  Sleep training, music, warm baths, exhausting him, a water bed (which actually worked until he figured out how to take the plug out!)  What finally worked and for the most part still works today even though we still have nights or a series of nights when he barely sleeps at all and I must say that was a lot easier to handle when I was younger.  We medicate him about an hour before bed.  He takes clonodine and one benadryl that usually gets him through the night. He has a TV/DVD/VCR in his room and weirdly enough he knows how to work it.  We used to put a gate up in his room until he learned to climb over it, now we lock his door.  It is for his safety, if there is an emergency we need to know where he is at all times.  I also worry that he will leave the house.  We have locks and alarms but I swear he is a reincarnated Harry Houdini and is quite an accomplished escape artist...just ask the neighbors:)  Bottom line, we can usually get a decent night sleep although we will never be able to catch up for all the lost hours over the years.

Eating
Scotty will eat anything and everything, we have all cabinets in our house locked...although he can get in them if he tries hard enough.  When he was younger he would literally eat until he threw up.  He has no button that says stop you are full, hence the locked cabinets.  As he has gotten older that has changed he doesn't eat nearly as much as he used to and will get up from the table when he is full.
He can feed himself with a spoon and a fork.  He still needs his food cut for him.
His favorite foods are bananas, pizza, salad, hamburgers,cookies, donuts and water.  He really will eat anything.  The only thing he turns his nose up at is bacon.

Dressing
Scotty gets a shower everyday as soon as he gets up.  We assist in all aspects of his grooming.  He washes his hair, dries himself (mostly), brushes his teeth (we redo it), puts on deodorant, and my husband shaves him and cuts his nails.  We lay his clothes out and can completely dress himself.  He can't do zippers or buttons.  We have velcro sneakers and he can put those on, usually on the wrong feet.