Don’t judge Firdaus’ mother

Another woman shares her experience of raising a special needs daughter and says Malaysia should learn from other countries.

COMMENT

Many people were horrified when they read about the neglect of 15-year-old Muhammad Firdaus Dullah, who has cerebral palsy. Even the Prime Minister has joined the ordinary man in the street in condemning the neglect, and accusations have been heaped upon Firdaus’s mother, his former nanny and the government.

Malaysians show concern for the less privileged, the disabled or the poor only when the media feature stories about them. The rest of the time, these people are invisible to them.

FMT recently spoke to Zahriah Mohd Faiz, a mother of six young children, the oldest of whom has cerebral palsy. She spoke of the challenges she and her husband face in bringing up 15-year-old Balqis.

Reading about Firdaus was devastating for Zahriah, who recalled the years of worry and hardship she went through before finally coming to terms with raising a child with special needs.

Looking after a special needs child is expensive because of the equipment, treatment and diet. According to Zahriah, faith is the most important aid to survival, which includes keeping one’s sanity.

She said: “Have faith that your special child’s condition will improve. If not, have faith that the reward might not be now, in this world, but surely in the hereafter. Only faith keeps one going forward.”

Zahriah hadn’t heard of cerebral palsy before Balqis was diagnosed with the condition. She said: “I can’t give reasons for the actions of Firdaus’ mother, but I can imagine the emotional, physical and financial turmoil and the test of her iman (faith).”

Zahriah empathises with Firdaus’ mother and the difficulty of raising a son without a husband’s support, the demands on her energy and the feeling of isolation.  “Unless we really know what happened, we should reserve our judgement of the mother,” she said, adding that she was appalled at the public criticism.

“What has society done to help parents with special needs children?

“For the past fourteen and a half years, Firdaus appeared to have been well cared for. What has happened to the mother over the past six months? We must investigate, understand and provide support to Firdaus’ mother, Firdaus himself and all parents and children with special needs.”

Her advice to parents of special needs children is simple. “Couples must be strong and support each other despite the lack of support from society.

“Contact other parents with similar children to share the happiness and sadness, for only they understand the problems.”

Enjoy life

She offered Muslim parents comfort with the following verse from the Quran: “O you who have believed, seek help through patience and prayer. Indeed, Allah is with the patient. (2:153).”

Caring for a special needs child is difficult, as parents have to cope with lack of sleep, tiredness, tantrums, finances, special equipment and odd looks from other people.

“But life isn’t over just because you have a special needs child,” Zahriah said, “Have faith in God and take time to recharge yourself. Try to enjoy life as much as is possible.”

Speaking of her experience, she said seeking help was difficult and there was a paucity of information. Instead of being informed and assisted, she and her husband had to press the doctors for guidance. She fears that the less knowledgeable single mothers or less financially able parents would find it even more difficult.

“We were not given any useful information by doctors in private or public hospitals,” she said.

“We had no idea where to get information from until an old friend suggested the NURY Institute of Family and Child Development. NURY is a private centre. It is not cheap, but they provided guidance on diet and therapies. We did not get this help from the hospitals which treated Balqis.”

Soon after Balqis’ birth, Zahriah accompanied her husband to England for his PhD studies. There she had a totally different experience.

“Once we registered Balqis with the National Health Service,” she said, “they sent us a letter to acknowledge the special needs child in our household and provided us with a list of contact numbers.

“They made appointments for Balqis’ assessments by occupational therapists, speech therapists, dietitians, physiotherapists, etcetera. After a few months, we had home visits, during which they assessed Balqis’ needs for treatment, equipment, milk, diapers and so on. Balqis was enrolled in a special needs’ school and transportation was provided.

“These assessments were arranged by letters, e-mails, phone calls and home visits. We only went to the hospital to prepare Balqis for surgery for her heart condition.

“The system accommodates parents with special needs children. There is no worry and no running around. Malaysia should learn from the way England treats special needs people.”

Zahriah, a former lecturer, claims that there are few special needs schools in Malaysia and they offer a limited service. She cautioned that these schools catered only to children with certain disabilities, not including those who are highly dependent, such as those who cannot walk.

Network of schools

Speaking of her experience with a special needs school in Bangi, she said: “Either one parent or a maid needs to be with the child. The school is not fully equipped, nor does it have enough qualified staff.”

She stressed the entitlement of special needs children to an education. “If Malaysia is serious in helping special needs children, it should emulate the UK or Australia and develop a network of special needs schools, with proper equipment, therapists and teachers.

“The special needs children are stimulated by social interaction and have a sense of belonging in society. Field trips to public places help the community realise that disabled children are part of society. The children see the outside world and receive an education.”

She believes that there are many like Firdaus, who are poor, have no father and no extended family to help.

She dismisses reports that parents refuse aid from the government and says that they have probably been deterred by the cumbersome procedures, the bureaucracy, the time, energy and money needed to obtain assistance.

“Registering with Jabatan Kebajikan Masyarakat (JKM) entitles a special needs child to an allowance of RM150 per month,” she said, “but the cost of bringing the child up exceeds RM150. Queues at government hospitals are long and the hospitals do not allocate enough time to treat the child.”

Zahriah offers some suggestions to parents who are less financially secure. “Families and friends can offer emotional support and help care for the child for a few hours, so the parents can rest. They could contribute some money every month.

“The zakat system could include special needs children. JKM must note the problems faced by parents of special needs children and make the procedures easier.”

Society plays an important role. Zahriah said: “The community could help by being more caring and understanding. Don’t discriminate against families with a special needs child. Don’t look at them oddly when they go out. Help them. Make them feel they are part of society.”

She advises parents against being ashamed and discouraged with life. “Be patient despite these trials and tribulations. Everything is possible when you have faith.”

Soon after the interview with FMT, Zahriah and her husband took Balqis and her five siblings to a holiday to Switzerland, to climb the Alps.

Mariam Mokhtar is a FMT columnist