Mother’s Day Exclusive: Parenting a Child with Special Needs in Malaysia

Selfless, sacrificing, and unconditional—the depth of a mother’s love is difficult to gauge in words. This Mother’s Day, Kiddy123 speaks to an ordinary (yet extraordinary!) mum as she shares with us about her journey into motherhood, the challenges she faces parenting a child with special needs, and how society can help uplift families with special needs children. 

Tell us about yourself. 

My name is Nurul Hafesha. I’m 34 years old this year and I work as a HR-cum-Admin Assistant. I have two children—my eldest son Miftah is four years old, and his younger sister Medina is going to be two soon. 

What special needs does your child have, and when were they diagnosed? 

I first discovered that my son had special needs when he was two years old. He would not respond when we called his name, and he could not speak a single word, not even to call mummy or daddy. His progression was also not like that of other children.

I brought him for consultation at a government clinic and he was referred for further checkups with a paediatrician at the hospital. After regular sessions with an Occupational Therapist at the neuro-paediatric department, the therapist diagnosed my son with Mild Autism with Speech Delays.

Can you share a bit about your journey as a mother?

It was not smooth sailing in the beginning. I got married in 2019 and got pregnant in the same year. Aside from morning sickness, I was also easily exhausted, and I gained 15 kilograms throughout the nine-month journey!  When my son was born, he had hypoglycaemia, jaundice, and ankyloglossia (tongue-tie), which had to be treated with a procedure called a frenotomy, which involved making a small cut to the tissue connecting the tongue to the floor of the mouth. Only after the procedure was done could he breastfeed. 

How has being a mother to a special needs child shaped your views on parenting and life in general?

My husband and I have accepted the fact that we have a special needs child, and I actually feel fortunate that we realised this early. I have the utmost respect for all parents who have special needs children, who try in every way to help them improve their life and social skills: such as by sending them for the Early Intervention Programme (EIP—designed for young children with developmental delays), or applying for the Orang Kurang Upaya (OKU) card from the Department of Social Welfare (so that they receive better accessibility to housing, education, and employment). 

It is eye-opening and inspiring to us as husband and wife, to see the lengths in which parents are willing to go to ensure their children get better treatment and benefits, whether it’s from the government, NGOs, or other agencies. On my part, I regularly post information about autism on my social media channels, not just to create awareness amongst my circle, but for the public as well. 

What are some of the biggest misconceptions people have about raising a special needs child? 

I have heard people say that raising a special needs child is a waste of money and time. It is sad to hear of such misconceptions. Every child has their own capabilities and skills. My son, for example, is interested in music and the arts – who knows, he might one day be a popular singer! 

Balancing caregiving with personal and professional life can be challenging. How do you find time for self-care?

Honestly, the only ‘me-time’ I have is the one-hour lunch break I have on weekdays! On weekends, I spend it with my family, and we have lunch outside or go for an evening walk at the playground, as the kids love it. Before I married, I enjoyed window shopping, but after having Miftah, I changed my lifestyle, so I buy most of my groceries and clothes online now. I also attend talks and classes on Islamic history and religion online which I used to do in-person. 

How does a typical day look like for you?

Since my job isn’t on-site or does not require chasing deadlines, I seldom have a ‘typical’ day at work. While my husband and I are working, our children go to a babysitter. We sent them to a babysitter after I finished my maternity leave, as I wanted them to get used to being around the caretaker. 

Unexpected changes to their routine can be stressful for an autistic child—we found this out when the babysitter had to return to her hometown for an emergency. We tried to send our children to the neighbour’s house for just two days, but he refused to go there. A therapist explained to me that autistic children prefer things that they are used to, for instance, food or even his classroom teacher. If his usual teacher is absent and is replaced by another teacher, it is difficult to get him to join the class. 

Another challenge I face is caring for my mother, who is 61 years old this year and is an SLE (Systemic Lupus Erythematosus) survivor. SLE is an autoimmune disease where the immune system attacks the body’s own tissues and organs, causing damage. These attacks tend to happen in waves and can range from mild to aggressive.

My mother has been suffering from SLE since I was two years old, and it has been affecting her kidney functions, so she gets sick easily and sometimes has difficulties breathing, to the point that she can’t stand, sit, or even lay on the bed for too long. If this happens, I take turns with my sibling to look after her. When I have caregiving duties, my husband looks after the children. 

What are some support systems or resources that have been helpful for you? 

My family is my biggest support system. My parents willingly take care of my children whenever I need help, while my friends provide me with moral support and information by sharing how their friends in similar circumstances deal with their situations.

Social media has been a great resource platform. I follow pages dedicated to autism. By reading comments and info shared from other parents, I am inspired with ideas on how to care and uplift my own children. I also keep updated on the latest announcements from the government. 

How do you approach discussing your child’s special needs with them, and how do you build their sense of independence and self-esteem? 

Since my son is still young, I think it might be difficult for him to differentiate what is good and what is not at this point—but doctors have advised me to keep talking to him and doing activities together. Even if he is not verbally responsive, he can still react and express his feelings to us. When we spend time with them, they will feel secure and loved, and comfortable in their surroundings. 

What do you think about Malaysian society and how they view children with special needs? 

Society in general still views most special needs children differently. There are still people who don’t know what autism is, and autistic children are likely to get bullied by seniors and peers in school, not just physically but also mentally. 

Are we inclusive enough and are there enough advocacy/initiatives from the public/private sector to support the future of special needs children? 

As far as I know, there are a few government-run EIP centres in the Klang Valley. Genius Kurnia in Sentul is a purpose-built facility specifically for children with autism. It is recognised as a Centre of Excellence for Autism and serves as a prototype for future centres too. Before entering the programme, potential pupils must get a medical report from the appointed government hospital, so there is a long queue of parents looking to have their children educated there. 

The ANIS (Anak Istimewa Selangor) programme under the Selangor state government is another initiative that offers education for autistic children, with a centre in Shah Alam. The programme is open to Selangor state residents from the B40 and M40 group. The child should have an OKU card, aside from other requirements. 

There are also private kindergartens that offer EIP, but monthly fees can be very expensive. I have surveyed a few which charges around RM1,500 per month. Parents who choose one-on-one classes with a therapist may be looking at spending around RM8,000 to RM10,000 a month. 

Thus, I really hope that the government can add more facilities for special children, with more affordable monthly fees. The Ministry of Education and the Ministry of Women, Family, and Community should work together to upgrade existing schools with structured equipment for special needs children, especially for schools that offer PPKI (Program Pendidikan Khas Integrasi) and PPI (Program Pendidikan Inklusif). 

What advice would you give to other mothers who are going through a similar journey with their children? 

Do not compare your child with other children. Every child is unique and has different interests. Be friends with them. Autistic children, or children with special needs, are just like other children—they can feel when someone loves and cares for them.