AN ORDEAL OF RAISING UP A SPECIAL CHILD

Aida Nazarah with her pillow as a shield and her book in her hand

It dated back forty years ago. A very beautiful child was delivered by my loving wife. She was such a bundle of joy. She is our second child.  I was then furthering my teacher course in  the Specialist Teachers Training Institute, in Cheras. Kuala Lumpur, in Commercial Studies.  I drove home from STTI, when I was informed  that my wife had given birth to a baby girl. Upon arrival, I saw my child was a very beautiful. She was a glowing pink, I discerned.  She was a normal baby for eight months.

 When she was eight months old she had a high fever. Despite our taking her to Dr. Sulaiman, she did not revive to be a normal baby she was. She developed fits.  We were advised by the late Dr. Sulaiman to take her to Seremban Hospital, to see a paediatrician. She was warded for one month for observation.  During the one month a series of tests was done on her, which included a lumbar puncture, to get her lumbar fluid to determine what caused her fits.  The paediatrician's finding was that, there was a brain damage caused by the high fever. Such was Aida Nazarah's fate. Her speech faculty in the brain is affected.

When discharged from the hospital, we took her to a series of dukuns and bomohs in the hope that her fits would be cured. Unfortunately all the efforts were to no avail. Aida's fits got worse every day. When she had her fits, she would stop breathing for a few seconds. Her limbs were stiff. When she regained her breath again she would be very weak. Only after some time she would be active again. Her condition before she was active again was very pathetic.

 We had to pay a very high price for wanting our child to be well again. For why not!  We were swindled by one dukun of our savings. This dukun promised that he was able to cure Aida's fits. We had all our hopes in him. Our mistake was we did not have faith and trust in Allah. Instead, we banked our hopes in this dukun. Serve us right. In the end this dukun vanished into thin air. He was indeed a hoodlum. We learned a very bitter lesson. Oh Allah! please forgive us of our mistakes and blunders.

 Aida's fits got worse and it lasted until today. Nevertheless, the fits have been transformed into many forms, hitting herself at all over her body, sleepless nights, and sometimes shouting at the top of her voice for no obvious reasons. This interpretation is according to her personal physician.  And we think that she behaves thus as a manifestation of her frustrations for not being able to express herself in words. Aida does not utter even a decipherable word. Aida now is still on a sedative drug, so as to suppress her hyper active brain. She is still on dilantine. It seems according to her physician, her brain is too active. She is termed as an autistic child.  Aida hits herself at every place, her chest, her chin, her temples, her eyes, everywhere. At one time we have to tie her hands with soft cloth, and forced her to carry a pillow, to prevent her from incessantly hitting herself.  Although we know that she is Autistic, we do not give up hope. We try other means  to get her well and normal again. However all efforts were to no avail.

Aida Nazarah having her lunch, with her hand tied up

 Lastly we seek the help of a religious man. We pleaded this guru to do the "solat hajat" for Aida, to plead to Allah to cure her illness and fits. The guru prayed to Allah for the wellbeing of Aida for forty nights. Finally after forty nights of prayers, Aida still did not show any improvement. The guru said, "Well, cikgu, Allah has not given his consent for Aida to be well. Keep on praying, may be one day Allah will give his blessings, sabarlah!"

 The words and advice of the guru was the final trump. We stopped at that and consoled ourselves to accept this blessings of Allah upon us. Although, the words of the guru was very hard to swallow, accept them we must. After that we never sought the help of anyone else, except we go on seeking the blessings and help of Allah, by non- stopping to pray to Him  and do the Solat Hajat ourselves. We accept our child as she is.

Educationwise I am sure many of you will be asking why we did not send her to any institution of sort.  We did try. She was accepted by the administration of the Princess Elizabeth School for the handicapped children in Johore Baharu. It was very unfortunate that the letter came just a day before Hari Raya Aidilftri. Who would part with a child of Aida's nature on Hari Raya's eve. Oh no! Not us.

 Furthermore we had unpleasant feedbacks from a relative of ours. She was working at Tampin Hospital as an attendant. She often went to this PES to send inmates.  There she saw the inmates were ill-treated. As such she did not recommend sending Aida there. Furthermore, once our local Social Welfare officer came to visit Aida in the house. She indirectly was against sending Aida to the school. She related how a few Chinese children who were sent to PES in JB  died of longing for the love of their parents. After discussing with the other members of the family, we decided not to send Aida to JB. So stays Aida with us through thick or thin. We taught her whatever basics we could. To educate her we need a lot of patience.  Aida knows how to feed herself so also does she know how to clean herself after her toiletries.

When I was at the vocational school in Seremban, I did survey the day centre for handicapped children.  The condition I saw in the centre was very discouraging for Aida to be sent there. The inmates there were left entirely on their own without strict supervision by elders. The compound too was very unsafe for a child like Aida, who has no sense of direction to come back home if she  is left to go astray.  Thus I decided not to send Aida to the centre. Aida is a very loving child. She will kiss you if you ask for one. This of course is during her good mood. If she has her tantrums, she will refuse and ignore you. She is also very gentle to small children. Never had she stricken her nephew and nieces. In fact her small nephew and nieces sometimes offended her.

Aida has the passion of tearing papers, books and magazines. These items are her toys. She loves to play with them. Every time she does the whole house will be littered with papers torn into small bits. If one were to make papier mache ready supply of torn papers could be obtained from our house.

 Aida's sleep patterns are very odd indeed. This may be because of the fits she is suffering. On certain nights she will have a very sound sleep, while on some nights she does not have a wink of sleep throughout the night. When she does not sleep she will be either tearing her books or magazines, or she will be hitting herself all over her body: Her thighs, her chest, and even her face. The most pitiful state of Aida is when she is suffering from something. She has to bear it alone. She does not utter a decipherable word. Thus she could not tell anybody if she was in pain of any kind. Kesian Aida!!!

Such is our fate to be bestowed with Aida. We are very thankful to Allah for blessing us with her. We are very thankful because not everybody is blessed with such a child. Amen. 1221,200912.aab.