To all despairing parents: Just hang in there, things do get better.
WHEN my son was diagnosed with moderate autism 14 years ago, my first mission was to talk to other parents who had trudged the path before me. Years later, that same feeling intensified when my son struggled through the pain and confusion of puberty, hauling the rest of the family along in trying to re-establish some form of sanity and peace. Both times, I felt ill-prepared and lost.
Had someone shown me the book, Parenting Across The Autism Spectrum – Unexpected Lessons We Have Learned by Ann Palmer and Maureen Morrell, it would have spared me many hours of despair and bolstered my confidence.
The authors, Palmer and Morrell, are mothers with Autism Spectrum Disorder (ASD) children who met through a parent support group in North Carolina. Their respective sons, Eric and Justin, are now both in their twenties. They are on opposite ends of the autism spectrum, living out their lives on completely different routes.
Eric, a quiet and passive boy, went through the mainstream school system and is now staying in a university dormitory.
Justin, described as a “whirlwind of activity and mood swings” is currently living in a residential farm community. These two wise and witty mums are now in what they call their “empty-nest time” and are sharing their stories, providing well-earned lessons.
This book is not about which intervention works, or how to teach or cure your child. It offers something far more valuable. It is a treasure trove filled with pearls of wisdom on how to emerge from this arduous journey with your sanity and sense of humour intact, your family stronger with your relatives and friends still willing to be on your Facebook friends list. It is written with such candid ease, it had me laughing and crying many times over.
It amazes me that although geographically we are so far apart and that these two mothers are in a country which offers a support system that is in stark contrast to mine, yet we all share similar experiences of exhaustion, feelings of guilt and anguish when dealing with our children.
I identify more with Morrell’s story as my son is very similar to hers. She had me in stitches describing the kind of mother she wanted to be as an “all-wise and all-loving perfect mom, a close approximation of Mother Teresa had she chosen the biological route…”
And yet, on the very next page, she had me fighting back tears, as I read and recognised those very feelings that I suppressed and refused to entertain whenever it rears its ugly head during the darkest stretches of the journey.
“When I was honest with myself, I resented him for being so difficult. I blamed him for robbing me of a future that held any chance of happiness.”
While I was in North Carolina last year for an autism training course, I had the opportunity to meet these two remarkable ladies and posed them a question: “Knowing what you know now, what is one that you wish you knew earlier?”
Morrell replied: “I wish someone could have told me to just breathe, because things do get better. Just hang in there and keep working on it.”
That injection of hope was just what I needed to propel me to soldier on. William Shakespeare was probably right to say: “The miserable have no other medicine, but only hope.”
Talking about misery, it brings me to another book, Boy Alone by Karl Taro Greenfield. It is a gripping account of a family’s struggle with Noah, Karl’s severely autistic brother, and their search for help. Karl talks about how his family life revolves around Noah, and how neglected he felt.
“I can feel the room tilting toward you whenever you walk in ... all the attention and parental love drains into you, never to come back out. You possess gravity out of all proportion to your size.”
His parents’ preoccupation with Noah, leave them little time and energy to care for Karl as they seem oblivious to his stealing sprees and drug addiction. The title Boy Alone refers as much to Noah, as to Karl.
Thinking it is a book written by a sibling, initially I wanted to pass this book to my eldest (neuro-typical) son once I was done with it. In the end, the depressing book left me drained of energy and hope. I wanted to either throw that book or myself out of the window. It was brutally honest, definitely not a recommended read for emotionally vulnerable parents. In the end, I gave the book to a social worker who wanted to start a sibling support group.
There is probably a 20-year gap between Noah’s time and that of Eric and Justin. I guess services improve with every generation and that is why the outcome for Noah as opposed to Eric and Justin, is so starkly different.
No matter how bad it seems, like Morrell says, “just breathe”. The key is that we keep working at it. With hope and faith in our hearts, despair has no chance to take root.
> One Voice is a monthly column which serves as a platform for professionals, parents and care providers 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) or e-mail: onevoice4ld@gmail.com
http://thestar.com.my/lifestyle/story.asp?file=/2011/9/7/lifeliving/9380494&sec=lifeliving
The new Music Dream Centre in Selangor serves as a platform for the learning disabled community to develop and showcase their talent.
WHEN her daughter, Ler Pei Yi, was diagnosed with autism three years ago, part-time beautician Winnie Low found herself on a sharp learning curve. As she braced herself for the barrage of information on the neurological disorder, she learnt the heart-breaking lesson on rejection.
“My daughter had been turned away many times by music teachers when I tried to enrol her. The usual excuse is, they only accept ‘normal’ students as they don’t have the patience to teach those with special needs,” she laments.
But when she got wind that Rotary Club of Bandar Utama, Petaling Jaya in Selangor, has opened its Music Dream Centre for the learning disabled, Winnie took her daughter there to have her registered as the six-year-old girl loves music and dancing.
A creative centre that caters exclusively to the learning disabled community is music to the ears of families which have been affected by children with learning disorders.
Parents like Kee Yong Chen and Sakuntala Manikkam share the hope that their Down syndrome sons will find a niche in music.
“I have been looking for an avenue for my 19-year-old son, Veshuan, to sing and dance, and I’m glad that there is such a place now,” enthuses Sakuntala.
“This centre is dedicated to people with learning disabilities. We see the need for such a centre as we understand that many parents have problems getting music schools to accept their special needs children. This is a platform for them to unleash their talent,” says K.G. Tan, president of the Rotary Club of Bandar Utama.
The newly renovated and fully air-conditioned centre in Perdana Damansara, Petaling Jaya, offers lessons in piano, percussion, guitar, drums, singing and dancing in group settings for persons with ages ranging from seven to 21. Consideration will be given to those below seven and above 21 after an assessment.
Multi-talented Brian John Yim who readily accepted the Rotarians’ invitation to be the centre’s coordinator on a pro bono basis, says the Music Dream Centre is a pilot project which he hopes to replicate in other states within the next two years to benefit more families.
“The idea is to develop and nurture talents that will lead to students giving public performances,” he says, adding that he is on the look-out for friends in the music and entertainment industry to volunteer their time at the centre.
Tan who strongly believes that there are gifted artists, singers and musicians among the learning disabled community, hopes that by showcasing their talents on stage, they will be able to earn a living and gain independence in the long run.
“It is a small step we take to raise public awareness. With community support, people with learning disorders can realise their full potential,” says Tan.
Aptitude
Students who show an aptitude for learning and playing musical instruments are placed under the centre’s music education programme where they learn in groups of five to 10.
Those who have yet to show their inclination, undergo a therapy programme where music is used as the medium of instruction. Four sessions lasting an hour each, is held monthly.
Tan says the club needs at least RM100,000 a year to run the centre. “We are thankful that we have a few sponsors and we will continue to raise funds through various events as we want to make this place viable,” he adds.
Families who sign up their children at the centre, can enjoy discounts for books, and access to experts in child psychology, therapists in various disciplines and motivational speakers.
Although the announcement was made via e-mails and by word of mouth, the turnout exceeded the Rotary Club members’ expectations. The centre was packed to the brim with parents and their children last Saturday when the Rotarians invited them to register and hear a presentation about their vision for the centre.
The affable Tan admitted that before he watched the National Autism Society of Malaysia’s (Nasom) choir performed at the Malaysian Philharmonic Orchestra’s chamber hall last year, he did not realise the magnitude of the problems faced by the learning disabled in the country. After seeing how Yim had succeeded in grooming and training the autistic children to sing in Nasom’s choir, Tan decided to rope in the former to run the centre.
Statistically, the global trend for people with autism stands at a ratio of 1:110 compared to Down syndrome with a ratio of 1:800.
According to the US Centres for Disease Control and Prevention, the rate of autism for ages three to 10 is 3.4 per 1,000, higher than the rates for cerebral palsy (2.8 per 1,000), hearing loss (1.1 per 1,000) and vision impairment (0.9 per 1,000).
As such, Yim expects 60% of the students at the centre will be persons with autism, while another 20% will be those with Down syndrome, with the remaining 20% for those with non-specified developmental delays.
Rotary club member Chong Hing Pheng, who helped her dyslexic son overcome his reading problems through intensive therapy, urges parents not to give up on their special needs children.
Chong, a human resource director, who volunteers at the centre, advises parents to focus on building up their children’s confidence.
That her son, Kuan Yew Gene, sings for the Kuala Lumpur Children’s Choir, should encourage parents to look for the silver lining in every challenge.
The Rotary Club of Bandar Utama’s Music Dream Centre is located at 28-3A, Lot No C/27-3, Jln PJU 8/5G, Bandar Damansara Perdana, Petaling Jaya, Selangor. For details contact K.G. Tan (012-323 0007/03-7710 3210).
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
Big-hearted volunteers walk the extra mile to raise funds for people with learning disabilities.
SHE took a leap of faith when she quit her decade-long job as a secretary and signed up for a diploma course to teach special needs children. Five years on, Rebecca Jane Thomas has taken on another challenge – not only has she dedicated her time to teaching students with learning disabilities, she has also taken on the task of raising funds for the community.
The hot, cloudless day that kept the rain at bay on July 2, brought smiles to Rebecca and her group of volunteers who organised “A Silent Walk In The Night” at 1 Utama Central Park in Petaling Jaya, from 3-8pm.
The inaugural event attracted 450 people and raised RM8,120 for Dignity & Services, a self-advocacy group that works with people with learning disabilities.
Successful: The ‘Silent Walk’ raised RM8,120 for self-advocacy group, Dignity & Services.It was no small feat, considering that no event management company was hired to do the job. It was just a crowd of big-hearted volunteers who worked diligently for two months to get sponsors and participants for the walk.
“Everything went smoothly. There was a lot of support and goodwill. And we will continue to explore options to raise money for the learning disabled,” enthused Rebecca.
Award-winning singer/songwriter Reshmonu and his two sons, as well as PR queen Datuk Nancy Yeoh, were there to lend their support by taking part in the candle-lit silent walk.
People with learning disorders came out in droves with their families. Some baked cookies for sale, some showcased their artwork and some performed on stage. There were 14 booths at the event, mostly related to providing services and support for the learning disabled.
Instrumental
Singer and song composer Brian John Yim, who had been instrumental in setting up the very first choir of autistic people last year, was at hand to ensure Umar Hasfizal, Clement Ooi and Tan Seng Kit hit the right notes. Their friend, William Chan, spontaneously went up on stage and danced as they sang their hearts out. Many in the crowd looked on in silent admiration. Who could imagine that people with autism, whose biggest issue is language deficit, were up on the stage singing in harmony with the rest.
By all accounts, the event was a huge success. So how did Rebecca manage to pull off the event, given such short notice?
“I have found my calling in life, that is, to teach children with learning disorders and to work with their parents for breakthroughs. Just as I am blessed, I want to pass on the blessings to others,” explained Rebecca.
Although she is open to teaching children with various needs, she finds more and more families who have children with autism and Down syndrome, seeking her services.
Rebecca spends considerable time conducting one-on-one therapy and group learning.
During the day, she teaches two 12-year-old students in an unconventional setting. They are a familiar face at the Starbucks outlet at the Great Eastern Mall in Jalan Ampang, Kuala Lumpur.
“The kids tend to do better when they are not confined to their home. At Starbucks, the students get a chance to learn in a social setting, and the staff have been very helpful and considerate,” she said.
But her daily routine does not end there. Her abundant energy enables her to teach late into the night. Between 8pm and 10.30pm, Rebecca has 12 students with learning disorders at her place in Taman Bukit Angkasa, Kuala Lumpur. She enjoys sharing knowledge with them and getting them to interact with her.
Rebecca is motivated by her love for special needs children. She wants to give hope to their families and share her philosophy that all things are possible.
It is precisely her unbridled energy and optimism that prompted Dignity & Services to partner with her and her group of volunteers.
“What draws us to this motley group of people is their vision, humility and sheer enthusiasm. Most of all, their hope in people with learning disabilities,” said Mettilda John, executive director of Dignity & Services.
From the looks of it, this partnership could be the beginning of more exciting things to come. For the members of Dignity & Services, it was another busy and memorable weekend, having just completed their 5km run the week before at the Standard Chartered KL Marathon.
Altruism is alive and well. What a welcome relief in the wake of selfish drivers who hog parking lots meant for wheelchair-users and commit other insensitive, discriminatory acts.
> 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 90582102) or Dignity & Services (% 03-77255569). E-mail: onevoice4ld@gmail.com
http://thestar.com.my/lifestyle/story.asp?file=/2011/7/13/lifefocus/9066612&sec=lifefocus
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.
