Every year, Muslims across the globe observe Ramadan, a month of fasting, spiritual reflection and battle on self discipline as they resist worldly needs. The month ends in triumph with a celebration in one of the most anticipated occasions of the year — Hari Raya Aidilfitri! 

This year, with Hari Raya following hard on the heels of Mother’s Day, we have interviewed two incredible mothers of children with autism on their take on the battles and triumphs in autism, as well as the importance of celebrating each and every milestone. We hope this could provide more insight into the journey of life of a family with autism through a mother’s lens.

Akmal

Akmal is the mother of Khaleef, an 11 year-old boy with autism.

 

  1. What are the challenges/ battles that your child is in?

My son has gone through many battles in his life, the most challenging was food tolerance. His staple food for about 4 years was just lactose-free milk formula, plain water and cheese crackers which he crushed into powder-like form and licked from his fingers. From there, he gradually transitioned from smaller pieces into larger pieces of cheese crackers. Due to his food tolerance issue and the impact on his diet and health, the EAP team suggested enrolling him into a food clinic for autism children which wasn’t available in Malaysia at the time. The most well-known clinic then was in the United States but the closest was in Singapore and it will require a stay of at least a month in the clinic. Not only the treatment was rigorous but the cost was high and both my husband and I would have to take leave of absence from the office, which means we wouldn’t be paid, further straining our financial burden. Hence, we engaged our speech therapist who was working in a similar food clinic in a public hospital in KL which caters to recovering trauma/coma/stroke patients who lost their ability to chew and swallow food . He together with the EAP team developed a food tolerance programme which took a year to complete.

 

  1. What are your proudest achievements of your child?

Although it was hard work for the team, it was even harder for Khaleef to go through the year-long food tolerance programme. He was scared of a certain colour or taste of new food, he gagged a lot during this process and he cried a lot too. Many parents of autism would understand this as most of them can be very rigid and scared of changes. Khaleef finally took his first full bite of fried mee hoon at the age of 7. Our family, therapist, supervisor and speech therapist was more than overjoyed seeing him eat fried mee hoon, it was an extraordinary achievement. Since then, we have never stopped introducing him to new food within his tolerance. Now he eats a variety of food but we still have to slowly introduce him to vegetables and fruits. Only this month he started eating vegetables which were introduced in the form of spring rolls made by my mother, who was dedicated to supporting the programme with all sorts of menu.

 

  1. What does celebrating each success mean to you/to your child?

Khaleef is very receptive to positive reinforcement. Even hugs and kisses would be super rewarding to him. So celebrating success means a lot of positive verbal recognition coupled with hugs and kisses for Khaleef. We can see him smiling and feeling proud when we praise him. For us, even a small achievement of being able to sit at the dining table and have a meal with us was worthy of an Instagram post to tell the whole world. Of course, we would also share via all relevant whatsapp groups in case anybody missed the post.

 

  1. What are the strategies or recommendations that have been effective for your child’s progress?

Consistency is key to all the achievements in his life so far. We always discussed with our team on the current challenges that he is facing and worked together to develop a strategy. We will try it out for a good period depending on the severity of the challenge and if it doesn’t work then we revisit the strategy together and even seek support from the OT or ST.

 

  1. Can you share some words of encouragement for the families with autism out there?

Although the struggle is real and constant, take it one step at a time. Don’t look too far into the future. Focus on battles that we need to win rather than engaging in all the battles. Example, food tolerance is a battle we need to win but learning to tie his shoelaces is not. Follow the strategies constantly, and you shall achieve the results. Keep a positive attitude especially in the presence of your child because it does influence your child.

 

*Nora

*Nora is a mother to a 6 year-old boy with autism. 

  1. What are the challenges/ battles that your child is in?

*Kasim is in mainstream school in Year 1 – main challenge is for him to access the curriculum which is mainly catered for typical children.  It is very difficult to find a school that provides a school learning environment for kids on the spectrum.  Although there are a lot of inclusive schools now, there are hardly any which provide a school environment – mostly are centre based.  It is important for kids on the spectrum to feel and be surrounded in a school environment for their development.  

Though we have planned his school since he was 3, as kids grow there are always changes along the way .  We have to adapt and that’s the most difficult part to get your kid placed in a school.  Even for *Kasim, whom the specialists said is on the milder side of the spectrum, is still a big challenge for us.  

 

  1. What are your proudest achievements of your child?

Proudest achievement is when he could hold his pencil and draw independently!  Now he is just drawing all the time!

The other achievement is when he called me “mummy” independently when he first started joining EAP.

 

  1. What does celebrating each success mean to you/to your child?

Each success is important as it is a big achievement for *Kasim – to celebrate is important as it promotes some kind of excitement (even if he doesn’t show it sometimes but it promotes him to remember that it is positive).

Celebrating small successes are is more important than having to force a child to do anything.

 

  1. What are the strategies or recommendations that have been effective for your child’s progress?

Providing choices whilst controlling the choices given to him so that he knows that not everything is about work. He needs to know that there’s always playtime for him to relax. 

 

  1. Can you share some words of encouragement for the families with autism out there?

Parents should accept that the child is on the spectrum first – acceptance is key and parents shouldn’t worry too much about society’s or even family members’ perception towards our kids. We raise our kids in the best environment we can which is just love for the child. Having a happy child is key – happy child, happy parents.  

Most important is that we accept our child and try to improve from there. He/ she may not be at par with other kids of the same age but that’s the challenge we have to face in life and I believe God will reward us abundantly for all the hard work.

*Names of individuals have been changed to protect the privacy of the individuals.

 

We hope this article sheds some light into the battles one with autism is facing as they too go through life. It is important to celebrate each and every step that they take, no matter big or small, as it honours the effort and fuels the next steps. Let this serve as a reminder that we are all trying our best to fight our own unique battles and not to take all the little successes achieved for granted!

Selamat Hari Raya Aidilfitri from all of us in EAP! 

For tips and strategies on how to prepare your child with autism for Hari Raya, check out  our previous blog article here

Click here if you’re looking for Raya kids activities to spend some quality time with your children and keep them occupied during this season of lockdown!