I, CAREGIVER: Walk of hope

2011/06/25
JUNEITA JOHARI

THERE is nothing more emotionally hurtful than to be called “stupid”, “mad” and the like, not just for the child that the label was intended for but also for the parents and the family.

Such is the insensitivity that families of children with special needs have to put up with. Many children with special needs look normal. In many cases, only after spending time with them can you notice the difference, like having difficulty paying attention or holding a conversation.

Today, there are programmes that can help these children overcome their weaknesses so they can learn, develop and integrate with society. But such efforts to increase awareness about their special needs and how to help them, have to be a continuous process.

Come Saturday, a group of volunteers made up of caregivers, educators and children with learning disabilities will walk together in an event called A Silent Walk In The Night at Central Park Bandar Utama 1, Petaling Jaya, from 3pm to 8pm.

It is organised by an advocacy movement for people with learning and intellectual disabilities called Raise Voice @ Dignity and Services, by Dignity and Services Sdn Bhd.

“Through this event, we want to remind society that these children with their aspirations can shine brightly if given a helping hand,” says Rebecca Jane Thomas, an educator who works with children with learning disabilities. “The struggles faced by this community and their caregivers cannot be ignored. We should strive to empower and integrate them into society. With proper guidance, some of them can become professionals and leading corporate figures.” The event will start with “raising their voices” through musical performances — bands, choirs and solos. Local group Band3, flutist Dr Radhakrishnan, 12-year-old autistic singer Umar (who has been performing since the age of 3) and an autistic choir put together by Brian John Yim are in the line-up. That is the first autistic choir in the world and it has also been recognised by the Malaysian Book of Records.

There will be food sale, games and creative and educational activities as well.

The event also offers opportunities for parents to sign up with the organisation, stating their needs and making the connection with those rendering specialised services.

The highlight of the evening will be the walk, where they will first light up the Torch and then spread the flame to the next candles or torches. Before the walk, a group of special children will hold candles, each to signify hope of a meaningful life and to celebrate the life and inspiration that each child brings to our community. You are encouraged to bring your own candle, lantern or torch. This act is to symbolise support towards improving the lives of children with disabilities, like a flame of hope.

The walk, which will be carried out in silence, will last for an hour. The silence is to signify the voice that is not heard in terms of advocating the rights of people with learning disabilities. “In silence, it is our hope that the event will contribute towards what is already being done to integrate people with learning disabilities into society at large,” says Thomas.

“Following the event, we hope to have regular forums involving experts so parents, caregivers and teachers can better manage children with learning disabilities.” There will be prizes for the most creative lights. Registration fee is RM10 a person.

For details, email Thomas at rebeccajt1440@yahoo.co.uk.

The writer volunteers at the Special Children Society of Ampang. After more than two decades of grappling with the system, she finds that the whole experience is just one big learning curve. You can reach her at juneitajohari@yahoo.com.

Read more: I, CAREGIVER: Walk of hope http://www.nst.com.my/nst/articles/I_CAREGIVER_Walkofhope/Article#ixzz1QjBufdOY

Supported Living Program 24-25-26 June 2011

Activity: Making organic cookies & muffins to sell at Organic Day event at Tesco Kepong
Objective: To promote public awareness about organic products and raise fund for OPTIONS & Bake4Fund





Activity: Matthew's Birthday Celebration.
Objective: To celebrate each person as a unique individual and value each other as friends.





Activity: Our 2nd Standard Chartered KL Marathon 5km Fun Run 2011
Objective: To participate in mainstream sports and be a visible part of the community.

Supported Living 17-18 June 2011

Activity: Hinyue cake making
Objective: To learn basic baking skills

ONE VOICE: JUNE 2011

Multinational helps out learning disabled 1 June 2011
ONE VOICE
By PANG HIN YUE

THE Malaysian Armed Forces’ quarters in Desa Tun Hussein Onn along Jalan Jelatek, Kuala Lumpur, is more than a show of might. Unknown to many, there is a tender side to it. Within its self-contained sprawling grounds is a centre to cater to the army’s families and those in the vicinity who have children with learning and physical disabilities.

Hemmed in between the high-rise living quarters and a school is the MAF’s very own single-storey Community Rehabilitation Centre. With the Social Welfare Department overseeing the centre, on a regular day between 30 and 35 people, including toddlers, converge there.

The majority of them are persons diagnosed with cerebral palsy, a neurological disorder that impairs movement and learning in varying degrees. Among them is Rozana Rozami, 20, who has limited mobility on her right limbs. To prevent her muscles from stiffening, her mother, Rosnah Hamid, accompanies her daily to the centre and diligently does physiotherapy for her. A handful of people with autism and Down Syndrome are also at the centre.



A toddler enjoying the stimulating bubbles column in the multisensory room at Kem Perdana Sungei Besi, Kuala Lumpur. Multinational corporation Procter & Gamble sponsored the special therapy room.

Toddlers with cerebral palsy lie on the padded floor mats, soothed by the air-conditioning and the exercises done to tone their muscles.

Manned by six staff members, the centre at MAF is open from 8.30am to noon, Mondays to Fridays. At the helm is Sharifah Anum who has been serving faithfully at the centre since its inception 10 years ago.

“The centre is open to anyone, from babies to adults who have disabilities,” says the affable Sharifah who receives training sponsored by the Social Welfare Department, to keep abreast of happenings.

The centre also has classes to help students with the basics of reading and writing.

“We are preparing some of them to be accepted into the Education Ministry’s Special Education programme,” explains Sharifah. To date, at least seven have successfully gained entry to school.

(The regulations under the Education Act stipulate that only students who are “educable” are accepted into the Education Ministry’s Special Education programme. The Social Welfare Department admits those who are not able to care for themselves under its Community Rehabilitation Centres.)

In the last two years, the centre at MAF received another boost with a multi-sensory room sponsored by multinational corporation Procter & Gamble (P&G). The air-conditioned room is equipped with lights, sounds and other gadgets that have been modified to meet the diverse sensorial needs of the disabled. Some are used to soothe the nerves, while others stimulate learning in a stress-free environment.

The centre at the army barracks is just one of the 50 Social Welfare Department centres across the nation that has benefited from P&G’s generosity.

P&G’s External Affairs Leader, Zulhaimi Abdul Hamid, says the multinational has invested RM1mil over the last two years to equip 50 Social Welfare Department community rehabilitation centres across the country with therapeutic multi-sensory rooms. P&G also provides training to ensure the multi-sensory rooms are optimally utilised.

In fact, Women, Family and Community Development Minister Datuk Seri Shahrizat Abdul Jalil was present last month to mark the handover of the 50th multi-sensory therapy room at Kem Perdana Sungei Besi, Kuala Lumpur.

P&G’s contributions towards the cause of the learning disabled in Malaysia are based on its global corporate campaign themed “Live, Learn and Thrive” to improve the lives of children in need, from infancy to 13 years old.

P&G has been reaching out to children with learning disabilities in Malaysia since 1999 under its Open Minds Programme, says Zulhaimi. To date, RM6mil has been spent.

Besides funding the Social Welfare Department’s centres, P&G also contributes towards non-governmental organisations that serve people with autism and dyslexia, he adds.

While the Persons With Disabilities Act 2008 has been enacted, it remains to be seen how the Women, Family and Community Development Ministry will work to ensure that those under its care, will have equal rights to education, healthcare and employment. As it is, there is no available data on the number of students from the community rehabilitation centres who are transferred to schools.

For now, the learning disabled community can take heart that there are corporations and individuals who are investing their money, time and talent to make Malaysia an inclusive society.

One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. For enquiries of services and support groups, call Malaysian Care ( 03-9058 2102) or Dignity & Services ( 03-7725 5569). E-mail: onevoice4ld@gmail.com.

http://parenthots.com/features/Centre-for-special-children-founded-on-mothers--lo.aspx

ONE VOICE: MAY 2011

Empowering parents of children with autism5 May 2010
By ANTHONY MIRANTI


MY wife Intan had noticed for many months that our two-year-old was not developing normally. For me, I was not in a state of denial; I just did not recognise that anything was wrong.

Intan was worried that our boy did not seem to understand any language, was unable or unwilling to look at a person’s face, and played with toys by lining them up or by spinning their wheels. She fretted that our son was not bonding with any of us, and that he screamed uncontrollably for hours over noises or situations he could not control. I just thought he had unique ways of expressing himself.

Intan was convinced that something was wrong, and did extensive research. She talked to people, read whatever materials she could find, and surfed the Internet for information. It was a good thing she did so because it eventually led to an accurate but heart-breaking diagnosis back in April 2001. That initial diagnosis of autism was later confirmed by two other professionals in the United States.


Empowered: Intan Miranti demonstrating to her 11-year-old son the properties of springs.


During those early days, the predominant feelings we had were fear and helplessness. We feared for his future, and we felt helpless, not knowing what to do. To my wife’s credit, instead of running away from reality, she faced it head-on. “I was heart-broken but I got down to work,” said Intan.

She talked to other parents, read books and research articles, explored interventions, signed up for training and joined autism online discussion groups. With research comes knowledge. Knowledge leads to making better treatment choices, which results in better progress and growth in a child with autism.

There’s a parallel change in the parent. With research comes knowledge. With knowledge, comes understanding and empowerment. With each bit of knowledge gained, helplessness dissipates, and is replaced by hope and joy. Fear is kept at bay.

Things are very much different for us now. After nine years, our son is very different, and my wife and I are, too. I am grateful to all the people who have helped him along the way, and to those who still do. However, I believe that my son’s progress would have been less pronounced were it not for my wife’s desire to empower herself with enough knowledge to keep the family moving forward.

In 2005, my wife decided to help other parents of children with autism to empower themselves. Through an organisation named ANDI Initiative, we provide several avenues for parents to arm themselves with knowledge. We have a collection of autism-related books available for loan to parents of children with special needs. Many of these books are not available in local bookstores. Parents do not have to pay to use this service. Another service is the Parent Voices Support Group where parents come to share and learn from each other. Parents have provided feedback on the ANDI Initiative blog. In addition, ANDI Initiative also helps parents gain more knowledge by collaborating with experts to offer training and workshops.

Chan Wai Ling, a parent of an autistic child, has this to share: “Before I went through the half-year training, my child was non-verbal, unresponsive and had no eye contact. The training empowered me to be a ‘parent-therapist’.

“The programme emphasised on play as a means of bonding and earning my child’s trust. This was followed by using play to motivate him, and later to give him confidence. And for the first time, my son experienced joy instead of being trapped in his own world where no one could reach him.

“The therapy methods created an interactive relationship,” added Chan. “Now my son enjoys his time-table, knowing he’s able to learn and achieve through his efforts and he gets reinforcement, too. Even his tantrums are meaningful now as we are able to decipher them through the training programme.

“The parent training session took us on a journey of self-discovery. It enabled me to be a better parent. After four months, my child was able to verbalise, had imitation skills, had eye contact, was affectionate and spontaneous, and was joyful. Now I know there are strategies I can employ to help my child. I am empowered knowing that I have a direct impact on my child’s development,” said Chan, a participant in a training programme for parents, which is now called the ASD Parent Training and Support Series.

Haslinda Abdul Rahman, another participant, echoes Chan’s sentiments.

“The training helped me to communicate with my son effectively. In return, he is able to relate to me in a sensible way. Introducing a new routine is no longer a struggle. The training also helped me to set appropriate expectations of him. This in turn makes me less stressed and allows me to cherish every achievement of his.

“After picking up skills from the parent training sessions, I am better equipped to plan programmes to suit my child’s needs. Seeing my child’s progress makes us realise that he has potential, and a brighter future ahead,” added Haslinda.

The parent plays a crucial role in any intervention programme for an autistic child. There is more to be said about empowering the parent of a child with autism, but my now 11-year-old son is waiting to play with me. And he’s been very patient.

> To find out more about ANDI Initiative, go to ANDIInitiative.blogs pot.com, or find us on Facebook. You can also contact us by sending an e-mail to ANDI.Initiative@gmail.com.

One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to onevoice4ld@gmail.com. For enquiries of services and support groups, please call Malaysian Care ( 03-9058 2102) or Dignity & Services ( 03-7725 5569). E-mail: onevoice4ld@gmail.com.


http://parenthots.com/features/Empowering-parents-of-children-with-autism.aspx

Supported Living 10-11 June 2011

Activity: HELP University students help prepare lunch (Sri Lanka Dal)
Objective: To enable individuals to learn dishes from other cultures




Activity: Making fruit smoothies.
Objective: To improve their skills in making fruit smoothies as this is for our upcoming fruit juice project with Selangor Dredging Berhad.

Supported Living Program: 3-4-5 June 2011

Activity: HELP University students getting to know our members.
Objective: To enable members to interact with the community.




Activity: Spraying the kitchen utensil.
Objective: To teach members to take care of house equipments.

Supported Living Program: 27-28 May 2011

Activity: Current Affairs ( Whats in the newpaper today ?)
Objective: To enable members to be aware of the news all around the world.





Activity: Cake making by Sara
Objective: To teach members basic baking skills.

Supported Living Program: 20-21-22 May 2011

Activity: Helen cake making
Objective: To learn basic baking skills.



Activity: Karaoke session with Standard Chartered volunteers.
Objective: To enable members to interact with each other and the community.