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By Nancy Nais
DENIED experiences. Being held back. Curtailed activities. Unmet milestones. Even the simple act of eating can become a struggle.
These are some of the situations faced by children with special needs, whether due to obstacles imposed by circumstances and society, or brought about by personal shortfalls in achievements that seem to come so easy for their peers.
Quite often, families and caregivers of children with special needs are the ones who are hardest hit because they see and experience the fallout firsthand.
Children with special needs such as autism, Down syndrome, speech or language impairments, and learning disabilities, often struggle with learning, social activities and the general process of growing up which most of us take for granted.
Families and guardians often become overwhelmed in the face of these challenges, as they come to terms with the fact that their loved ones will have to navigate a world that can be tough to those who are different.
However, there is a silver lining in every cloud and all hope is not lost as they strive to focus on helping their children to forge ahead. The children’s perceived shortcomings come hand in hand with the strength to overcome adversities, making triumphant moments all the sweeter.
Taking the bull by the horns
DayakDaily recently met two mothers at the One-Stop Early Intervention Centre (OSEIC) in Kuching which offers therapy and intervention for children with special needs as well as support for their parents and guardians.
Both strongly agreed that planning for an uncertain future is necessary, especially in terms of schooling and getting their children to be as independent as possible.
Kristina Bujang, 39, a nurse from Sri Aman who works in Kuching, has a two-year-old daughter, Nur Irsa Dayana Azrul, who has Down syndrome.
She knows that her daughter’s condition might limit her ability to lead an independent adult life, and she is doing all she can to help Irsa be as capable as possible.
“It was during one of Irsa’s appointments at the Sarawak General Hospital some time in April that the staff mentioned OSEIC as a highly recommended centre dedicated to children with special needs.
“On that very same day, I drove straight to OSEIC to check it out and was ready to sign up my daughter.
“However, I was told that there were no vacant slots, but the centre was willing to put Irsa on a waiting list, which was fine by me,” Kristina said.
In August, she was informed that there was a slot available for Irsa. Without thinking twice, she immediately said ‘yes’.
“I have been looking for a centre like this to help Irsa, the youngest of my four children. Working as a full- time nurse, it is not easy to juggle work, house chores and looking after my family, on top of giving Irsa home rehabilitation.
“However, we as a family want to give her our best. Irsa now attends lessons once a week for about one hour and 15 minutes, and after three months, I can see small improvements in her and that made all of us very happy,” she added.
Kristina lauded OSEIC for its wide range of facilities and services aimed at helping special needs children. She said that the centre is the best that she has found so far. OSEIC has also helped her to be better at managing and teaching Irsa at home.
“My hope is for Irsa to grow up and be just like other people. Although she may not reach 100 per cent, but at least she can learn to be independent, brave and do activities on her own,” Kristina said, adding that every small successful step that her daughter means the world to her.
Educating children and caregivers
Each child with special needs is unique and children with the same needs may not necessarily respond the same way as the others in the same group. Out of necessity, their parents and guardians have to become more flexible, compassionate and resilient, adjusting routines and expectations as they go along. Sometimes it is the caregivers who learn more than the child.
The second mother who spoke to DayakDaily under condition of anonymity said this was a ‘lovely irony’ of being a parent of a child with special needs, that the adults find themselves growing as caretakers and learning new things along the way.
Over time, she has discovered that there was a lot she could learn from teachers at OSEIC and the parents of the other children at the centre.
“We have known since day one that we cannot allow ourselves to put him (her son with special needs) in any sort of box. We must step back and really look at our son, allow him to lead us to where he is going.
“For us, it was a relief to know and learn about his condition early on. I am not going to be that parent who tries to make her child become a lawyer and end up devastated when he decides at age 25 that he’s not going to do that.
“It is not an option for us. The thing that seemed so devastating at the beginning is actually the silver lining,” she said.
When asked what it is like to be the parent of a child with special needs, she described it as “a lifetime of hard work, exhaustion, fear, hope, despair, anger, isolation, and intimidation; but also one of commitment, acceptance and love”.
At times, she has felt abandoned and isolated, while at other times, she felt the warmth of support provided by OSEIC and her family members.
“Although my husband and I are still relatively young, we fear of what could happen to our son when we are no longer around.
“I believe we will still be very much involved in his life 10 or 20 years down the road,” she said.
Strong demand for early intervention
When OSEIC was officially opened on Oct 30, 2020, word spread quickly and available slots filled up within a short period of time because there are still not many early intervention centres in Sarawak.
Managed by the Society for Parents of Children with Special Needs (Pibakat) and monitored by an OSEIC advisory committee led by the Ministry of Welfare, Community Wellbeing, Women, Family and Childhood Development, this centre is the first of its kind in the State.
The centre is jointly developed by the Sarawak government and Petroliam Nasional Berhad (Petronas).
Under its corporate social responsibility (CSR) programme, Petronas allocated RM4 million for renovation, rental, purchase of equipment and furniture, training and staff development, module development and management cost for OSEIC’s first year of operation in 2020.
Additionally, the Sarawak government also approved an allocation of RM11.1 million to operate the centre for five years.
Helping children maximise their potential
While on a tour of the premises, the centre’s management committee president Zaidi Ahmad said OSEIC was set up to focus on the developmental, health and support needs of babies and young children diagnosed with autism, Down syndrome and learning disabilities.
“At OSEIC, we provide intervention, rehabilitation, healthcare, education and training to enable these special children to develop, learn and excel to their full potential as they grow up. We will identify, evaluate and intervene at the earliest possible opportunity within a safe and conducive environment.
“Our Early Intervention Programme (EIP) encompasses educational and therapy support services which help to equip the children at our centre with key foundational developmental skills,” Zaidi said.
He emphasised that intervention must be done as early as possible as it has proven to be successful in helping children with developmental delays.
Intervention, Zaidi said, should begin when children are between two and seven-years-old, as it is important to maximize the potential of the child during this optimal developmental window.
One-stop integrated facility
The centre is located at MetroCity Commercial Precinct in Jalan Matang.
Its facilities include spacious classrooms, four activity areas, a Snoezelen room, a sensory integration room, a hydrotherapy room, a music room, a toy room, a dining area specially built for children, a consultation room and a sick bay.
OSEIC admin executive Leandro Mcrae said when undergoing therapy-based intervention, the child will be accompanied by an occupational therapist or physical therapist.
The overall intention at OSEIC is to provide a professional yet non-restrictive environment that is fun, functional and family-friendly.
According to Leandro, the centre has a ‘one therapist, one child’ policy and only charges RM50 per month for one session per week.
Those who wish to enroll a child for two sessions per week at RM100 may do so, but sessions are subject to availability due to limited slots and Covid-19 standard operating procedures (SOPs).
Leandro said each child will have about one hour and 15 minutes at the centre on a once-a-week basis.
There are five sessions per day, starting from 8.15am until 4.30pm.
A total of 224 children had registered with the centre as of Oct 31 this year.
Of these children, 93 have been diagnosed with autism spectrum disorder, 49 with speech delays, 10 with Down syndrome, 10 with global development delay, two with sensory neural hearing loss and one with multiple disabilities.
Another 47 children have yet to be diagnosed by pediatricians but have undergone assessment by their own therapists. Twelve children are awaiting doctor’s appointments either at the Sarawak General Hospital or the Kuching Specialist Hospital.
In terms of age, the youngest is one-year-old (four children), eldest is 7-years-old (eight children), and they have 64 children who are aged four.
Proactively facing the future
Meanwhile, Leandro noted that developmental disabilities in a child can change a parent’s vision of the future and provide immediate difficulties in caring for and educating their child.
“In some cases, it causes children to be removed from the mainstream. That is why we want parents to become fierce advocates who make sure that their children receive the services, therapy, schooling and inclusion they need and deserve.
“These children require specialised learning strategies to reach their potential and avoid self-esteem problems and behavioral difficulties.
“As parents, they must be persistent, and this includes working with their child at home as well as teachers and schools to ensure they get all the help they need,” Leandro highlighted.
Parents who are interested to know more about OSEIC may contact the centre at 082-544415 or pay a visit from Monday to Friday between the hours of 8am to 5pm. The centre is closed for lunch between 12 noon to 1pm, and on weekends and public holidays. — DayakDaily