|
 Gail'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.
Ket Khiong's Story
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.
Nazmi's Story
Nazmi berumur 12 tahun, dan menghadapi kurang daya intelek
"Down's Syndrome', Semenjak kelahirannya, ibubapanya tidak mengesyaki
apa-apa yang luarblasa, kecuali kesihotannya yang sering terganggu. Apabila
diperikso oleh doktor, Nazmi digelar seorang 'Mongol' (penggunaan lama).
lbubapa meraso terharu bila mendapat berita tersebut, lebih-lebih lagi
diberitahu bahawo jangka kehidupan Nazmi mungkin tidak melebihi 10 tahun.
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." |
