eventsreal-life-stories

Mother’s Day Tribute: A Chat With Mothers of Children With Autism

By May 8, 2020 No Comments

Mothers are our source of life, our protectors, our best friends; they work tirelessly to provide for our needs; they are selfless in their care and love towards their families; they do far more than we acknowledge and are far more than words can describe. We celebrate Mother’s Day annually to honour and appreciate all the sacrifices our mothers have made for us, what more mothers of children on the autism spectrum! This Mother’s Day, we caught up with a couple of amazing women to find out about the joys and challenges of raising a child with autism. 

Hannah

Hannah is a mother of two, and is married to her husband, Zul.

Can you tell us a little about yourself?

I am Hannah and am a mother of two. 

What are some of the things that you have had to give up to support your child with autism?

When my son was diagnosed with autism and ADHD in August 2018, he was 5 years 2 months old. 

Coincidentally, I was at a sweet spot career-wise. Within 6 months of a long-awaited career-comeback, I had just been offered a promotion to post of Vice President of Legal Unit and Company Secretary at NanoMalaysia Berhad, a government agency entrusted to lead Malaysia into IR4.0.

I clearly remember hosting a family meeting to collectively decide the way forward. Instinctively, I knew it was going to be one or the other. We agreed that my son’s primary caregiver role would fall on me; and that meant my personal sacrifice of my legal role toward nation building.

It is evident till today that my son needs me and I will not fully delegate my role as his mother (and greatest cheerleader) to anyone else. All the other smaller things that I have had to give up to support my son pales in comparison to my professional life sacrifice.

I have since reverted to working from home in areas of company laws and compliance just as I have been since November 2011. Perhaps the most profound lesson I learnt the hard way is that my professional achievement is not my sole reason for being.

I have a greater cause.

How often do you spend time with your child? What are some of the activities you do together?

At present, due to COVID-19 Movement Control Order (“MCO”), 24/7! We attend his Zoom crisis schooling and ABA therapy online, play, read, watch telly, bake and occasionally craft indoors. I cannot wait for MCO to be over so that I can take him out to the playground or swimming pool again, but we understand this new norm will dictate our lives now onwards.

What are some key strategies or recommendations that have been effective for your child’s progress?

Firstly, reward system. EAP Malaysia quickly identified that as my son’s biggest motivation for cooperation. He is motivated by a clearly structured reward system. 

On a personal level, I know he wants to be his best version of himself and my praising him for his good or expected behaviour is effective as a reward. Giving him attention for the desired expected behaviour and ignoring the inappropriate unexpected behaviour does not come naturally to me, so I have had to improve on the way I parent for the better.

Secondly, consistency.  Getting every single family member onboard has worked out well for us.

As a mother of a child with autism, why did you decide to become an advocate for autism?

I used to be completely ignorant of autism and not understand neurodiversity. When my son was diagnosed, I realised how much I had to learn immediately and quickly! 

In the early days when I was grappling with confusion and information-overload, I learnt so much from other parents who openly shared about autism without the shame that is usually attached to autism.

I was inspired by those parents who have taught me so selflessly and I wish to pay it forward by sharing my journey. I did not “decide” to become an advocate for autism, I naturally found myself in this role in within my community and have come to embrace it.

Can you share some words of encouragement with other mothers raising a child with autism?

If you get tired, learn to rest, not quit. Remember to take good care of yourself first and foremost so that you can give your best of yourself to your loved ones.

Jega

Jega is the mother of Harishva, and is married to Danaraj.

Can you tell us a little bit about yourself and your child? 

I am a 31-year-old mother from Kemaman, Terengganu. I have a bachelor’s degree in health care from Master Skill University. My son, Harishva was born on the 7th of June 2016 through Caesarean section. He is a very joyful and loving kid whom I believe has many special capabilities. 

What are some things that you have had to give up to support your child with autism? 

I used to work as a senior human resource executive in one of the oil and gas companies in Terengganu. When Harishva was 2 years old, my husband and I noticed that he was demonstrating a few symptoms commonly present in individuals with autism. We went to a child specialist for a diagnostic evaluation and Harishva was diagnosed with Autism Spectrum Disorder in January 2019. 

With a heavy heart, I had to choose between my passion and supporting my beloved son. After much deliberation with my husband, I chose to leave my job and my entire family in Terengganu to move to KL so that Harishva could receive therapy from EAP. I had to sacrifice living together with my husband and parents in law. It was challenging in the beginning and at times remains difficult even now. 

How do you spend time with your child? What are some activities you do together? 

I am always with my son; we spend a lot of quality time together- we go for a movie when I feel down, go to the playground, play with water balloons, go cycling, do painting, and drawing. I also occupy most of his time with occupational therapy at home. 

What are some key strategies or recommendations that have been effective for your child’s progress?

One of the key recommendations from EAP was for Harishva to receive 35 hours of therapy per week. However, we were only able to afford the half time programme where he would receive 15 hours of therapy a week. That said, I have managed to make up for the lost hours with the help of EAP supervisors who have been guiding me in running simple therapy programmes for Harishva at home. On top of that, Harishva goes for speech therapy 4 times a month and occupational therapy thrice a month. He also attends Kindergarten to improve his social skills. Ultimately, occupy your time and your child’s time to the best of your abilities. 

Can you share some words of encouragement to other mothers raising a child with autism? 

Firstly, don’t feel too discouraged or disheartened that your child is on the spectrum. Continue to believe that there is hope and give thanks to God for your child’s health. On days when you feel burnt out, talk to your family about it instead of bottling it all up. 

Secondly, remember to cherish and spend lots of quality time with your children; remember that they are our future. Time will pass, but the memories you share with your children will never fade. 

I wholeheartedly thank and salute all of you great mothers out there!

 

Lydia*

Lydia is a mother of a 7 year-old boy with autism and is married to James*.

Can you tell us a little bit about yourself and your child?

I am a mother of a 7-year-old boy with autism. He is verbal and attends a mainstream school with some assistance from a shadow aid.

What are some things that you have had to give up to support your child with autism? 

I used to work before and was planning to get back into it after my child was enrolled in school. However, my priorities have changed. I do not feel like I have given up anything as it is my choice to prioritise my child’s development. People say that being a parent is a “full time job”, I find this particularly true for parents of children with special needs. Children on the autism spectrum require parents to put in extra effort on all levels! 

How do you spend time with your child? What are some activities you do together? 

We spend most of our time together as he is my only child. We pass the time by reviewing his school and therapy lessons, playing, dancing, as well as doing house chores. 

What are some key strategies or recommendations that have been effective for your child’s progress?

It is so important to first and foremost be informed. I have been educating myself about autism by reading and staying up to date on the topic. I also ensure that I take good care of myself so that I have the capacity to care for my son and to prevent myself from burning out. 

As for some strategies I implement for my son, I ensure that I limit his TV time and usually only allow him access to educational programmes such as Nat Geo Kids, International Space Station videos, and Dr. Ouch. Consequentially, his attention has improved. Instead of screen time, I spend time reading together with my son as this develops his vocabulary and grammar. Not only does he love reading now, he also loves to tell stories! 

On top of that, he follows a very clean diet (Gluten-free Dairy-free, GFDF) which I have found to calm him down and keep him more focused. I also ensure he stays active with exercises that he enjoys such as HIIT training, running, jumping, swimming, and just about anything that tires him out to help him sleep better. Spending time outdoors under the sun and walking barefoot on the ground (earthing) have also provided some health benefits for him. 

Another key strategy which I found helpful for my son is having a routine and schedule. This is so that he knows what will be happening next and is aware of the activities that will take place each day. In fact, he enjoys planning accordingly for the coming day by preparing his uniform or clothes the night before. Having a schedule and routine have been essential in helping him gain independence and grow in responsibility. 

Can you share some words of encouragement to other mothers raising a child with autism? 

I believe that every child is gifted in their own way. As parents, it is up to you to help them develop and discover their true potential. Sometimes, this means fighting for them so that in the future they will have the confidence to stand up for themselves. 

There will be difficult days, but perhaps we are blessed to be living on the edge of emotions because no day is a dull day; while there may be tears, there is also reason to celebrate because every single achievement, even the smallest ones, are worth celebrating. 

Remember, God gives the toughest battles to his best warriors!

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

 

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dates all things and crushes down remorselessly all that stands in its path.” — Agatha Christie