Special Needs awareness

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

Hear from another Angelman family - video

Watch 前线追踪 Frontline, MediaCorp

Other special needs - RDSS

Can you understand our frustrations, agony and struggles?

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Read Special needs Blogs via Special Seeds.sg
My special girl: A father shares his journey as caregiver to special needs daughter, Straits Times, 19 Jun 2017
Mr Peter Tay is known to friends as a walking encyclopaedia, well versed in many subjects. The one time he found himself at a loss was when his youngest daughter Priscilla was in kindergarten.

He did not understand why Priscilla would not follow instructions from her teachers. She could not sit still for a long period of time, was easily distracted, and would distract others.  What seemed to be normal mischievous behaviour got worse. Mr Tay, 62, and his wife Ira Tjiang, 60, sought help.

Numerous brain scans and diagnostic tests found no problems. There was no family history of mental illness. Ms Priscilla Tay, 22, was eventually diagnosed with hyperactivity and mild intellectual disability.

"We had so many questions. Why her? Did she have a head injury? Maybe the wrong food? Or malnutrition? It was very difficult for us to accept the diagnosis," said the semi-retired former chief executive of a water-treatment company.

When it was time for Ms Tay to go to primary school, her parents thought carefully and decided to place her in a special school, fearing that she would be unable to cope with the rigours of a regular school.

"Singapore is an extremely unforgiving country. Twenty years ago, it was almost unthinkable for any parent to admit they had a child with special needs," said Mr Tay. Years of soul-searching led the Tays to realise that their daughter needed support from those closest to her to build confidence and self-esteem.

In 2014, Ms Tay also enrolled in group therapy at the Institute of Mental Health, to learn the social and communication skills that would help her navigate the challenges of interpersonal relationships.

Her parents, who have two older daughters, struggled to accept their situation but never shied away from making sacrifices. Madam Tjiang gave up her part-time manufacturing job to care for Ms Tay and, despite English not being her first language, did her best to read up and speak toprofessionals on how to support her daughter.

The close-knit family lives in a five-room Housing Board flat in Hougang.  Said eldest daughter Sharon Tay, 31: "My dad plays the role of the disciplinarian at home and sets the family rules. He, and everyone in the family, had to learn and relearn what it meant to be a parent and sibling to a child with special needs. He has had to learn to be more flexible with his rules and to be more participatory, simply because the whole process of working with a special needs person is just more involved."

"Children and people with special needs must be helped and be equipped with social skills or the proper skill set so that they can strike out on their own without burdening the country or the social system," said Mr Tay.

Over the years, he has grown to ignore naysayers and their negativity. But he advocates healthy conversations and dialogue with other parents and members of the public on helping people with special needs, to create awareness and share his belief that even if you have a child with special needs, you should not give up on him.


The Joy Truck 2015
Joy Truck will be hitting the roads once again to continue to spread love and joy to beneficiaries and families in Singapore. Led by the affable Pornsak and celebrity ambassadors, the heart-warming series will once again embark on weekly trips to bring smiles to those in our midst who need it most.

Season 2 of the award-winning series took home three awards at Star Awards 2015 for Best Variety Programme, Best Variety Show Host and Best Variety Research Writer.  Season 3 will be exclusive online clips available only on Toggle. Apart from funds raised through the series’ interactive mobile game app where points are translated into funds for the supported charities, a mobile ice cream kiosk dressed up as a replica of Joy Truck will be stationed at malls on weekends to generate more hype and raise even more funds.

Program Flow:
- A beneficiary (organization/family/individual) will be identified every week. The beneficiary will be introduced and their needs will be highlighted at the beginning of the program.
- After understanding the background of the beneficiary, the host and the ambassador will propose a mission that is able to fulfill the needs of the beneficiary. Eg. To paint the house/to organize an outing/to prepare a sumptuous meal.
- The Joy Truck will then depart with the host, the ambassador and volunteers to execute the plan.
- During the process of completing the mission, the interaction among the host, the ambassador, the group of volunteers and the beneficiary bring out the kindness and give a deeper depiction on human nature.


Purple Awareness
Thousands of people turned Hong Lim Park into a sea of purple Saturday (31 Oct) to celebrate the abilities of people with special needs and support equal opportunities for them in Singapore.

Prime Minister Lee Hsien Loong, who was among the 7,000 people at The Purple Parade, said Singapore is building an inclusive society where everyone can make a contribution. Wearing a pair of purple-frame spectacles like many of the attendees, Lee hailed the success of The Purple Parade, which was into its third year.  “Whether you have special abilities, whether you are an ordinary person, whether you like drawing, or whether you like to swim, or whether you like to work on your own and you have a special artistic talent, we all have something to contribute, and in a different way each one of us is somehow special, different from the others.”

Echoing this message, Denise Phua, Mayor of Central Singapore District and an adviser to the event, made an impassioned speech calling for “equal access to opportunities in life” and to build a country where “no one is left behind”.  Singapore has made great strides in providing services and support for people with special needs, particularly for those of the younger age groups, Phua noted. To further enhance their integration into society, she said there is a sense of urgency to support adults with special needs.

“We are really moving into the more challenging space, which is services for adults with special needs. Things have improved a lot and we need to continue. The pace needs to be intensified.”  Television actor Chew Chor Meng (first from left), who has spinal and bulbar muscular atrophy.

Nominated Member of Parliament Chia Yong Yong, who has peroneal muscular atrophy and is a wheelchair user, said Singapore needs to look beyond developing infrastructure and create a mindset change among people with and without disabilities.  One such area where more can be done to make it more inclusive for people with special needs is in the workplace and this is where companies can play an integral role, Chia said.

While acknowledging the increased level of corporate support at The Purple Parade, Chia said, “It has to be more just participating in events and carnivals. It's got to translate into the actual corporate policies and programs that they have in integrating people with disabilities."

Speaking to reporters on the sidelines of the Purple Parade, Ms Denise Phua, MP for Moulmein-Kallang GRC, said the event serves as a reminder to Singaporeans to focus on the abilities of those with special needs, and not just their disabilities.  "We want the whole of society to come together, work together and take advantage of what special needs people can offer," said Ms Phua, who is an adviser to the Purple Parade steering committee.

The event also saw many people signing pledges in support of Singapore's signing of the United Nations Convention on the Rights of Persons with Disabilities last year. These pledge cards were used to form a large purple square at Hong Lim Park. Ms Phua said the square symbolises a call for people with disabilities to be granted equal access in all areas, including housing, education, health care and transport.

Acting Minister for Culture, Community and Youth Lawrence Wong, who was one of several Cabinet members at the event, said he hopes the event will happen annually. Ms Phua said the organisers are already "seriously" thinking of making it so.

She added that the Purple Parade is not just an event but a movement, and more plans are in the pipeline to support the special needs community.

A skillful erhu player who was attending the event for a second time, Ow expressed her wish for a more inclusive Singapore.  “I hope the people with special needs can also treat themselves like normal people and also I hope normal people also treat us like how they treat their normal friends because I feel that whatever they can achieve, we can also do the same."

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.

Special Needs therapy and medical

To cut costs, my teen has no external therapies, just yearly eye and neuro appointments at KK Hospital.  I opt for yearly, not 6 or 9 months appointment.

Not sure when my teen turned 18 will she be kicked out somewhere else.
I'm happy to say my teen's seizure is under control, unlike other special needs child, had to "camp" in the hospital, pay for special equipment and parents hit with high costs, ranging from 4 digits to 6 digits.  

I don't know what made these parents hang on, probably the great love for their child.  To me, I love my teen but I would not pray for child to be healed and survive the ordeal eg stay in hospital under critical care, living on machine ... I would rather ask for God's leniency, take child away, let him/her be free from illness/ordeal, let parents be free (financially and gloomy future).

The Spore government doesn't provide medical support for sandwiched families eg household income more than S$5000 per month.  As long as you're working, govt felt you shouldn't be parasites.  If mother is staying home and daddy is the sole breadwinner earning quite a lot in their eyes, the social worker will "encourage" mother to work so that medical subsidies can be channelled to the "NEEDY".  When you employ a domestic helper to look after the child, people felt you're rich so the medical costs are peanuts!


2018 - KKH Eye clinic
As usual, waiting time is long
Below has no dilation, thus, "it is cheaper"

2017

Parents with special needs children are often overwhelmed by many things. The top two burdens are:

The huge financial resources to support their children on a long-term basis. Assuming the special needs child require $5000 per month in living expenses, medical, special school, special education and cost of care giver/maid – the total amount required for one child is 5000 x 12 = $60,000.  Let's say your child is like mine, having a normal lifespan so assuming an average mortality of 82 years old and not taking into account of inflation,  the total amount would be 5000 x 12 x 82 = $4.92 million . As it can be seen, the financial burden is astronomical.

These are subsidied rate but too costly to me.  I think I better stop giving my teen therapy at KK Hospital.  I certainly don't think a price hike of 15.3% is justifiable.  From Oct to Dec, I have spent $420.50.  
1 OT and ST assessment
3 speech therapies
1 Occupational therapy
1 Eye clinic

Spent 2.5 hrs waiting for Dr and the cost was $45.
Spend 45 mins with a therapist, I parted with $60.

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 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.

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.

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.

Child's Oral Care

Dental clinic caters to special needs, Straits Times, 22 Jun 2016
A dental clinic set up for seniors and people with special needs was officially opened at the National Dental Centre Singapore (NDCS) yesterday.  The Geriatric Special Care Dentistry Clinic, located at the Singapore General Hospital's Outram campus, sees patients with complex oral health conditions and who typically also have behavioural issues.

For instance, patients with Parkinson's disease may have trouble brushing their teeth, while many of those with autism get easily agitated by dental care.  The new clinic, which started operations last September, is the first of its kind in Singapore. It has seen more than 4,000 patient visits to date. Patients are generally referred from polyclinics or hospitals.

The clinic is designed to make dentist visits as fuss-free as possible for its special clientele.  "For example, for the less mobile and frail patients who have difficulty being transferred to a dental chair, the wheelchair tilting system allows the dental team to treat the patients in their wheelchairs," said Health Minister Gan Kim Yong, who spoke at the opening.

Every room is equipped with a dental X-ray machine so that patients do not need to travel to another part of the building.  In addition, general dental radiography and surgical procedures that require only local anaesthesia can be done within the clinic.

Madam Theresa Khoo, whose husband had a stroke more than 10 years ago and now uses a wheelchair, started visiting the centre last year. She finds the wheelchair- friendly dental chair a great help.  "If he falls when I transfer him to the dentist chair, he might also crack the equipment," she said.  "(The chair) is a lot of help, both for him and for me."

Geriatric and special care dentistry is an emerging speciality, but one in which there are many unique needs, said Associate Professor Poon Choy Yoke, who is the director of NDCS.  "It's not just the dental treatment delivery, which all of us have," she explained. "These special patients need a lot more explanation and patience, and sometimes maybe multiple visits because you need to win their trust a little bit at a time."

Mr Kiran Raj, 21, has developmental delay due to epilepsy. Before he started monthly visits at the clinic in January, he had never seen a dentist. His mother, Madam Jothi Marimuthu, had heard "nightmare stories" from other parents of special needs children. Even at home, she struggled to help him brush his teeth.  "He would refuse to open his mouth and make all kinds of noises, and he used to be so agitated," recalled the 46-year-old.

His dentist at the new clinic took the time to calm him down, and even played his favourite music to help him relax. Madam Jothi is confident that her son is in good hands.  "He can't express pain or tell you where the pain is," she said. "But now I know that if there's anything wrong with his teeth, the dentist will let us know."


00000000000000000000000000000000000000
AS: My girl has been receiving yearly dental care from Rainbow Centre Margaret Drive.  All the while her tooth was ok .... in the care of my ex-filipino maid.  Lately, her tooth got from bad to worse care.  My current maid only brushed the front and ignored the teeth behind.  Yes, I was surprised why every time teeth brushing time is so fast, suspected something fishy so gently reminded her.  Also reminded her to brush my girl's teeth twice a day, in case during the struggle with my girl, she failed to do a clean brush after lunch, the second brush in the night could fix things.  She kept telling me she brushed in the school, morning.  I had to tell her after the Nov dental visit that brushing her front teeth is wrong, I need her to brush well.

 child will be wrapped, arms strapped at the dentist chair

Last year, my girl's tooth showed decay.  Last June, her bottom molar received a filling.  2 weeks ago, my girl had another filling at her upper molar. Dentist asked "did you brush her teeth?" I am aware it is hard to brush my girl's teeth, reminded maid to be slow but she simply wants to get things done fast so that she can spend more time on her tablet.  Recently, I have to catch 'brushing time', watch her and ensure she did a better job. Maids these days don't listen instructions, they have their own minds and want job satisfaction at Employers' expense.  If you scold them or be bit strict, they may ill-treat, vent her anger or accusing you of not treating her like a family member.

When my girl is in pain, she can't express, point or tell me.  Taking good care of her teeth is important but my maid simply doesn't want to spare a thought for her.  Last 2 visits cost me S$45 each.  Maid probably think spending money is no big deal.  What I am worried is having a toothache.... the unknown pain, the pain my girl has to endure.  Visiting a normal dentist is not feasible because they can't handle special needs child, don't know how to manage her and get rid of her pain effectively.  Also it will be tough pacifying my girl because she can't point out where's her pain.  Last time when school dentist didn't have the weighted blanket, there must be at least 4 persons - 1 to hold her legs, 1 for her arms/body, 1 for her head, another to assist in opening her mouth for the dentist to treat/see well.

To get a dental appointment in govt clinic eg National Dental Centre, the normal waiting time can be months to half a year, how to wait that long?  Private dentists are easily available.  Although costly but has shorter queue time, sometimes immediate appointment.  Biggest problem,  normal clinic doesn't have the right support, lack of understanding and dentist can be very impatient.


Oral Care 'Need Not Be Nightmare' for Special Needs Kids, December 2014
Brushing Muhd Syamil Abdur Rahman's teeth and getting him to trust dentists used to be a struggle, but the eight-year-old, who has autism, now willingly gets into the dentist's chair.

Muhd Syamil Abdur Rahman, eight, has autism, and brushing his teeth used to be a daily struggle. One family member had to hold him still as his mother cleaned as many of his teeth as possible. Said Madam Norlizan Mohidu, 40, of her son: "He just refused to open his mouth because he didn't like foreign objects in it." Syamil's case is typical of parents who have children with special needs and who often fear taking them to the dentist because of how unruly they can get.

Last month, the National Dental Centre Singapore (NDCS) hosted a public forum for around 70 parents of special needs children for the first time. A survey of the group showed that four in 10 had never taken their child to the dentist, while the vast majority feared that their child would not cooperate while there. About half said that no dentist would see their child, or that they did not know where to look for one who would.

Paediatric dentist Terry Teo of The Dental Studio - a Singapore Medical Group Clinic - said most children visit him for the first time between ages three and five, but those with special needs do so, on average, four years later.  "Very often, they have been turned away by (other) dentists," he said. He added that others may bring their children in only when they complain of pain, which may not be detected at the outset in children with special needs, because they might be unable to express themselves.

"It is only when these children get older and have possibly tolerated such pain for a long time do the parents become aware that this is affecting them." But NDCS hopes to drive home the message that dentist visits do not have to be a nightmare if you start them young.  "When you go to a stressful environment that is new, children do not know how to cope," said Dr Tan Wee Kiat, a senior consultant at the centre's paediatric dentistry unit.

"You have to teach them coping strategies to get them used to the environment. With each visit, the child gets better at coping with stress and, therefore, behaves better." Ideally, she said, all children - with or without special needs - should start seeing a dentist by age one. In Syamil's case, his mum, a housewife, sought help at NDCS in 2012, after noticing her son's cavities getting worse. There, he underwent an operation to extract eight baby teeth. But getting him to trust the dentist was not easy. She related how the dentist would perform check-ups by making Syamil laugh, then sneaking a peek at his open mouth.

"She was so patient," Madam Norlizan recalled. "She would play games with him, and introduce him to all the equipment." This year, they had a breakthrough when Syamil willingly got into the dentist's chair for the first time. New adult teeth are slowly emerging - and he brushes these on his own.

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.

   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.