Dealing with fatherhood is tough, but tougher when you have to care for a special child

Meet Umar, a special child with a talent for music

Most parents have loads of responsibilities and things are seldom easy when there is only one breadwinner in a family. This is something one can never plan for but Hasfizal Mukhtar and his wife have taken it in their stride – their eldest child, Umar (now 21) happens to be a special child.

“Being the father of a special needs child had its share of challenges. When my wife and I first learned that Umar was on the autism spectrum, it was about 19 years ago. Back then, autism awareness was very low,” reveals the father of three boys.

Can you tell if someone is autistic?

A person on the autism spectrum cannot be identified solely based on physical traits alone. However, there may be behavioural differences such as difficulties with social interaction and communication, and a tendency to have restricted or repetitive behaviour.

Discovered at two

On learning that Umar was on the autism spectrum, Hasfizal and his wife experienced a gamut of emotions. “It’s true that you fear things you don’t know. Two decades ago, the Internet had little information on autism. After making inquiries everywhere, we finally learned Umar needed an early intervention programme.”

Hasfizal’s wife gave up her career to care for Umar and after almost 20 years, this has definitely paid off. Umar has learnt to cope and is able to lead a relatively normal life. He is talented in music and singing, which his parents have nurtured and encouraged. As a result, he has gained a lot of confidence and has even been invited to perform at corporate and government events.

A young Umar at recording studio
Umar & mum, with his collection of awards

Major challenges

On top of Hasfizal’s financial burden (he had just started working while his wife was now a full time stay-at-home mum), he also had a tough time accepting his son’s condition. The sense of accountability was much heavier, especially when his child’s wellbeing was his responsibility for the rest of life.

Yet another challenge the young father encountered was overcoming his own fears of facing other people. Thankfully, Malaysians are quite kind and understanding, so he was able to adjust to the situation comfortably.

“There were still times when I would see that people were not comfortable with Umar. I don’t really fault them as autism was not a well-known condition at that time… even today there is still a lack of awareness,” confesses Hasfizal.

Going out can be an ordeal

Normal everyday things that many people take for granted can be a problem for both the child and the parents who have to deal with autism. Raising Umar in a community that neither understands not knows about autism was far from easy.

Raising Umar in a community that neither understands not knows about autism was far from easy.

Taking him for haircuts or kenduri kahwin can be stressful – Umar was (and still is) very sensitive to noise and vibration. This meant barbers had to use only scissors and be willing to get along with him. At weddings, the combination of crowds and hot weather meant that Hasfizal and his wife had to take turns to eat while the other physically held on to Umar to help keep him calm.

Helping out at home

Although Hasfizal’s wife takes on the lion’s share of caring for Umar, Hasfizal still takes over as much as possible. He continues to be deeply involved with Umar’s life to the extent of handling his singing career as manager, driver and bodyguard.

“I think fathers should make an effort to do their bit in helping to lessen the burden on their wife. Do the dishes or laundry and spend time with your special needs child. Give your spouse a ‘day off’ on weekends for her to recharge herself,” Hasfizal shares.

Sibling harmony

He also had to juggle spending time with all three of his children in order to ensure that the two younger siblings would not be jealous of the extra time he spent with Umar. This also served to help the brothers forge a stronger bond.

Hasfizal with Umar

Hasfizal planned activities that included all three siblings. They would go for jamming sessions together; Umar would be the vocalist, his brothers played the piano and drums, and Hasfizal played the guitar – this was a great way for them to bond.

Hasfizal’s Tips

  1. Stay Positive: Be realistic when setting expectations. Unrealistic expectations will definitely cause a lot of problems. Pushing too hard can be counter-productive.
  2. Look at efforts, not results: Every child is different – appreciate their efforts and don’t compare results. Learn to accept that most milestones take longer to achieve.
  3. Good teamwork required: Both parents need to support each other.
  4. Anticipate and prevent triggers: Learn what his triggers are and anticipate them to avert meltdowns.
  5. Network with other parents: Sharing information and experiences among each other is useful for making your life a little easier. For more information, visit here.
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