Parents' Voices
The road
is hard;
He'll break your heart,
You'll cry a million tears.
But I promise you:
When he smiles at you,
The pain will soon disappear.
So please don't turn your back on him
although he may be slow.
If you accept him as
he is,
then together you will grow.
|
Gail |
Ket Khiong |
Nazmi |
Gail's
Story
Ket Khiong's Story
Nazmi's Story
Gail was not sitting up as expected at three months of age. However, her parents did not worry unduly as these things happen, and they felt that Gail would catch on in no time at all. When matters did not improve at ten months, Gail was quickly taken to see a doctor.
They simply could not believe it when the doctor advised them that Gail has cerebral palsy. Cerebral palsy is a term used to describe damage done to the brain resulting in movement disabilities. Common causes for cerebral palsy are' acute jaundice and fever at infancy stage.
Gail's parents underwent, as parents in their similar situation do, a "bereavement period', when they, understandably, react to the news of their child's disability with shock, grief and sometimes, anger. Some would envelope themselves in denial, seeking a cure for their child's "disease" in order to get back their dream child. For many, like Gail's parents, the end to this dark tunnel is acceptance. An acceptance of their child's disability as an important part of his/ her characteristics, but which does not own his/her entire life.
Gail's parents find it a sad paradox that it is the other people who are still having great difficulty in accepting Gail's disability. These include relatives and friends who on first meeting Gail, would be struck dumb not knowing what to say or do. Friends had later confessed to feeling embarrassed, scared and pitiful of Gail.While they understand that disability is an enigma to most people, Gail's parents are adamant that she be treated just like any other kid. Gail gets her share of love, and scolding, as much as her younger brother does. She is taken out for walks and shopping, and swimming for exercise. Gail's parents related frequent instances when Gail was stared at by curious onlookers. At times like this, when Gail is judged solely on her disability that her parents gets frustrated. They do not need anyone's sympathy or pity. They just want understanding.
Gail is now in the Junior Class at Seri Mengasih Centre. Prior to this, she came twice a week to attend an Early Intervention Programme, where she had physiotherapy. All parents were required to attend these sessions, in order for them to continue the exercises with their child at home. Parents receive counseling at the same time, and this has been a tremendous source of support for Gail's parents. They were able to share their experiences with other parents who have a disabled child, and vice versa. It was during these times that they have learned to accept Gail's disability, be realistic of her lifestyle, and at the same time optimistic of her abilities.
Khet Kiong's parents were informed by their doctor of his "differences' soon offer his birth. They were meaning of having a 'Down's Syndrome" child. The doctor explained that Khet Khiong has 47 chromosomes in his DNA or genetic build-up, whereas his older sister would have 46 chromosomes as is the usual case. There is a higher risk for a couple to conceive a Down's Syndrome child when the mother is into her late thirties. While accepting that Khet Khiong is special, his parents could not help but worry about his future. Their family life had to be adjusted to his needs, as they fear more for his safety and therefore would not leave him alone at any one time. Much of his daily activities had to be supervised as he needed to be told what to do and what not to do. The family expressed frustrations sometimes because Khet Khiong can be very stubborn and likes to do things his own way.
Khet Khiong spent three years in a normal kindergarten. When it become obvious that Khet Khiong was becoming too old for a playschool, his parents turned to the Welfare Department for help. They were refereed to Seri Mengasih Center, and entered an elementary class at the age of nine.While academically slower than his peers, Khet Khiong at 18, showed. as much interest in the world around him as would anybody else. He would never miss soccer on TV, talks on the phone endlessly with his friends and looks forward to leaving school to join the work force. When asked why he wants to work, 'Saya mau cari duit', he replied. He trained at McDonald's Api-Api Center for three months in 1995, and was offered a paid part time job at the end of his work experience.
It was obvious that the management felt Khet Khiong has the potential to make the grade on par with his peers. It ' was equally obvious that Khet Khiong was enjoying the experience. On one occasion, his parents called up McDonald's to inform them that Khet Khiong was sick and would not be able to turn up for work.
Leaving him to rest in the house, both parents left for work. Khet Khiong decided that he was not that sick, took the bus and turned up for work by himself. The job offer by McDonald's had to be turned down as he was still below the working age then. However, we are happy to note that his transition from school environment to the community and from childhood to adulthood is coming along smoothly. This observation was also shared by his parents.Khet Khiong's parents are of the opinion that the Government should provide more schools for the disabled. There is so much potential untapped in them, and it will be a great pity to see their life wasted away due to the lack of facilities and opportunities. Their greatest hope is that Khet Khiong is able to live a regular, happy adult life" as independently as it is possible for him and contribute in his own way to the community instead of being a burden.
Walaubagaimanapun, sebagaimana tanggungjawab seseorang ibu dan bapa yang ingin melihat onaknya berkeadoan sihat dan normal, Nazmi dibawa berjumpa pakar-pakar perubatan Barat dan tradisional untuk mencari sesuatu ubat yang dapat menyembuhi 'penyakit' nya.
Kebimbangan utama mereka adalah berkenaon masa depan Nozmi. Walaupun keadaan sedemikian, ibubapa Nazmi tidak pernah putus asa. Bapa Nazmi berkata," Kami selalu bertekad dengan kuat. Kekurangan Nazmi ada memberi kesan negatif, namun kita tidak boleh hindari kenyataan ini.Pengorbanan ibubapa harus tabah menghadapi apa jua kesan dari dolam otau luaran. Anak yang "special" ini soma juga seperti anakanak soya yang lain dan soya gembira dan bahagia kerana itu pemberion Tuhan". Kesan negatif yang telah disebuti bersifatkan tekanan emosi yang dihadapi oleh ibubapa Nazmi mengenai persekolahannya, dan clari sebahagian masyarakat yong menghina kekurangannya.
Bila ditanya mengenai program yang dijalankan di Seri Mengasih, bapa Nazmi berkata. 'Setelah anak soya mengikuti program pelajaran di sekolah ini, soya dapati banyak perubahan yang dicapai dan menampakkan kemajuan lebih jauh sebelum bersekolah.'Antara kebaikan yang diulaskannya adalah kepentingan ibubapa hadir dalam kelas pada masa permulaan persekolahan anaknya, untuk belajar cara-cara mengajar yang sesual, supaya ibubapa nanti' dapat meneruskan pengajaran di rumah kelak lbubapa boleh memir)jam alatalat belajar untuk tujuan ini. Ini membolehkan sesuatu pelajaran dikekalkan.
Kegemaran Nazmi adalah muzik, tang penyanyi kesukaannya ialah Michael Jackson. Gerak-geri 'Moonwalk' fasih dilaksanakan oleh Nazmi sehingga dia seringkall dijemput membuot persembahan atas pentas. 'Semuo yong harus dibuatnya sebagaimana kanak-kanak biasa, Nazmi berkebo(ehan. Misalannya, mengambil kain yang dijemur ba)ik ke rumah don kemudian melipatnya, ataupun menyapu lantal, tanpa disuruh', jelas ibubapa Nazmi.Harapan ibubupo kepada Nazmi adalah supaya dia boleh berdikarl tanpa bantuan orang lain dari ' segi keperibadion, khasnya dalam perkara mengenali diri/keluargo serta ugama; boleh membaca don menulis; mengetahui akan yang benar don salah; menyesuaikan diri dalam masyarakat, dan pekerjaan yang menjamin masa depannya. lbubapa Nazmi kini menyeri) masyarat yang. penyayang supaya jangan ketepikan soal insan kurang upaya.
"Berilah bantuan dalam bidang pendidikan khas ini."
Seri Mengasih Centre, P.W.D. 75, Jalan Selangor, 88100 Tanjung Aru, Kota Kinabalu
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