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?

*********

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."