Lolanopita Sadi from Sabah, the mother of 15-year-old Muhammad Firdaus Dullah, was criticised and arrested for neglecting her severely disabled son. At the other end of the spectrum is Zahriah Mohd Faiz, the mother of 15-year-old Balqis, who also has cerebral palsy.

Watching the video of Firdaus’ discovery made Zahriah realise how fortunate and happy her daughter is, despite her own fears that both she and her husband have not done their best for Balqis, the eldest of their six children.

Zahriah feels that everyone, including the community, has a part in helping children with special needs, and their families, to achieve a better quality of life. Here, she gives an insight into bringing up a child with cerebral palsy (CP), and says that society should not be too hasty in judging Lolanopita, before understanding her personal circumstances.

1. When did you discover Balqis had cerebral palsy?

The checks in the first trimester failed to detect Balqis’s congenital heart condition. Four months after birth, she had a fever which lasted for one month and that was when her congenital heart disease was discovered.

She was due for an angiogram, at the National Heart Institute (IJN), but developed severe fits and was rushed to Hospital University Kebangsaan Malaysia (HUKM) to be treated.

We spent Eid al-Adha (Hari Raya Haji), in the Neonatal Intensive Care Unit (NICU), with Balqis having a 50-50 chance of survival. She only regained consciousness after a week.

2. As a special needs parent, do you have enough support in Malaysia?

The medical facilities are good at HUKM, where she was treated. Unfortunately, the support system within HUKM, as well as the whole of Malaysia, is not.

We did not get any further treatment, emotional support, or financial assistance from the medical staff or from any organisation in Malaysia. We did not know where to seek information.

A friend suggested contacting the NURY Institute of Family and Child Development. As NURY is a private institute, it is not cheap, but they provide guidance on diet and therapies.

Our experience of doctors in Malaysian public hospitals from 2000-2002 was that they were very reserved, judgmental, lacked empathy and worst of all, lacked the human touch.

3. What challenges did you face as a mother of a special needs child?

Raising a special needs child is very challenging. Five other growing children exacerbate the problems.  

Shopping with Balqis and her five younger siblings needs careful thought and organisation. Stores have narrow aisles and being an active and alert child, Balqis will want to grab things from the shelves.

Balqis weighs 32 kg and is tall, but needs support, as she cannot walk or talk. She makes sounds which family members recognise, so they know what she wants. Someone will push her chair but her clothes and diapers must be prepared before every trip.

She loves to travel and we have all learnt from our experiences overseas. Travelling by air, with a special needs child requires a lot of planning and we have had some nasty experiences.

Some airlines have efficient and friendly wheelchair services but both passengers and airline crew can be very upsetting and not at all understanding. Travelling by road is more within our control because we can stop and rest along the motorway.

Enrolled in a special needs school

4. Have you any suggestions for the Malaysian authorities?

When I accompanied my husband to England for his PhD, we registered Balqis in the National Health Service (NHS). The NHS made appointments to assess her requirements with occupational therapists, speech therapists, dieticians and physiotherapists.

They sent a health visitor to our home, to assess Balqis’s needs for treatment, equipment, milk, diapers and other requirements. The NHS enrolled Balqis in a special needs school, with transportation provided.

At her special needs school, Ridgeway School in Bedford, Balqis found the social interactions conducive to learning. Ridgeway had a clear programme and syllabus. Dedicated, trained staff provided consistent and structured therapies.

When we returned to Malaysia, we found a daycare centre, Tasputra, with special needs equipment in Kuala Lumpur, but it was too far away, as we were living and working in Bangi.

Unfortunately, we could not find any schools which had a structured syllabus and trained staff, like the Ridgeway school.

5. Does the government not provide any assistance or a helpline, for CP sufferers?

I believe the Jabatan Kebajikan Masyarakat (JKM) provides financial aid for children and families with special needs. The amount given does not cover the costs of the child’s care.

6. What is your advice for parents of special needs children?

Couples with special needs children must remain strong and support one another. Try to contact parents in a similar situation to share both the happiness and the sadness. People with shared experiences understand each other best.

I believe that a group of parents caring for children with cerebral palsy are pushing the government to build a special school as the children are currently deprived of basic education. Special needs children are entitled to an education.

7. Do you think that the government should look into provision of further treatment, support and financial assistance to help CP sufferers?

Definitely! The NHS provides UK residents with a marvellous healthcare system. I think Malaysia should learn from the NHS or from Australia, and implement their measures in Malaysia.

The government may think they have done enough, but in reality the needs of the children with cerebral palsy, and their families’ concerns, are not being taken seriously.

Life is more about survival

8. How do you think rural parents or parents from the lower income bracket cope, because most treatment or support facilities tend to be concentrated in the bigger urban centres?

 

If it isn’t easy for a middle class family, like us, I am sure it is extremely difficult for them.

The fact that they need to work to provide the special needs child with 24-hour care, as well as the other family members, requires great sacrifice.

Their life is more about survival, than help for the child.

9. You have read about Firdaus, the neglected special needs boy. Do you think his is an isolated case?

I have met a few families with no father figure, no extended family to help and financial constraints, but none so extreme as Firdaus’s case. I do believe there are many more like him in Malaysia.

10. What keeps you going?

Hope, patience and faith keep us going.

MARIAM MOKHTAR is a defender of the truth, the admiral-general of the Green Bean Army and president of the Perak Liberation Organisation (PLO).