APRIL 2 of every year was declared by the United Nations as World Autism Awareness Day to highlight the need to improve the quality of life of those with autism. This is so they can lead full and meaningful lives and be an integral part of society.
As a parent and a member of the National Council for Persons of Disability of Malaysia, a past chairperson of the National Autism Society of Malaysia (Nasom), and a board member of Ronald McDonald’s House of Charity (RMHC), here is my story... 'Something from the heart.
When I became a mum, I had such a clear vision of how my life with my children would unfold. I would be their guide and they would learn all their life skills from me. I would lead by example and teach them everything I know and more.
And my children would go on to the very best schools, graduate from the best universities, have a fabulous career, find a loving life partner, have a family of their own, and live happily ever after. But not everything in life has a fairy tale ending.
And things don’t always go quite the way we plan now, do they?
Little did I know that Naim, my autistic son, would be the one teaching me.
Naim taught me how to love
Naim Rafaie Abdul Rahim was born in December 1996. A beautiful baby boy and as far as a mum can see, feel and love – perfect Naim.
Until his diagnosis of autism at the age of four, I never knew the real struggle of being a mum. I never thought I would be the Pushy Mum! I had to keep on pushing at health professionals as I was concerned about Naim's development.
To all parents, I can't stress enough about the importance of getting an early diagnosis. And after diagnosis, it is therapy, therapy, and more therapy. It is no good burying your head in the sand because it is not going to go away.
It is really not. I ended up knowing these systems quite well because I had fought for whatever my child wanted and needed all the way through. Nothing is ever given to you easily.
The medical professionals often don’t really know. You are the only one who knows your child best. If you are dealing with a doctor who deals with hundreds of children, you have got to be very sure, this is what I am sure is going on with my child.
As Naim went through every therapy and strategy conceivable I then realised that there wasn’t anything that I wouldn’t do for my child. I would bear every hurt he could ever feel and prevent any pain from entering his precious life if I could. But I know I can’t. So instead, I will be by his side to comfort him and pick him back up when life knocks him down.
Naim taught me patience
I'm such a go-getter; I hate disruptions and delays and I used to get antsy when having to wait for anything. Suddenly, I had to deal with tantrums, meltdowns, screams, and cries without cause or reason. And sudden changes in my son’s schedule, without prior notice, were stressful for both of us.
I’ve learned that I could do simple things like giving him a visual reminder, a five-minute warning, or setting a timer to help him be less anxious, and it actually helped me to calm myself down and get through stressful situations. I’ve learned how these few extra minutes on my part could help make our day better, and taking that space is so worth it!
Naim taught me to listen, really listen
Naim, as he is non-verbal, made me yearn to hear him call me "Ibu". But Naim could sing. I’m that person who only hears the lyrics to my favourite songs, but you hear every intricate detail of every song and every lyric. He’s shown me that, in music, it's actually better to be different. The melody doesn’t always have to follow the beat. And eventually, Naim called me, without prompting, when he was 18. They were the most beautiful words I’ve ever heard in my life.
Naim taught me to think outside the box
I am a solution-minded person, and as a mum, I would always think of the best way to ease any problems my child would face. A child with autism can face some challenging times and sometimes we need a plan to help us through tough moments. Naim has taught me to think ahead and to anticipate stressful situations, and prepare strategies ahead of time to get us through them.
Naim taught me to be brave
I used to be a crowd-pleaser. I never wanted to upset anyone or hurt their feelings nor do anything to disrupt the moment and would always just go with the flow. When he came into my world, he needed me to advocate for him.
I guess it’s an instinct we’re given as mothers, but when someone tries to close a door on your child, wedging your foot inside feels like the only option. Naim never went to school. There weren't any national schools that would accept him unless he joined their special classes.
It was very difficult for me to accept that my son would never be a lawyer or an engineer. I had to look for a place of learning that would give him the support he needed. Naim is now in Nasom, where he has always been since the beginning of his education path. He is now learning vocational skills and independent living skills.
Naim taught me that it’s not only OK but that it’s good to be different
When Naim was little, I wished so deeply that Naim could be like the other kids on the playground, because I didn’t want him to ever feel left out. I knew that feeling and how much it hurt me when other kids laughed at him and shunned him. So, I tried to teach Naim how to throw and catch a ball, but he wasn’t interested. I ended up just chasing Naim in circles around the park. We even went on playdates, and while the other kids played together, Naim just ran from room to room to look at their ceiling fans.
Then one day Naim showed me how much he loved the water. He loved to swim and play with water in the pool. It felt so good listening to Naim's laughter and seeing the happiness in him.
I’m sorry that I spent so much time trying to help you fit in. I know now that you were never meant to. You are exactly who you’re supposed to be. You are perfect.
The strongest message from me to all parents is to keep fighting. Not to worry about being a ‘pushy parent’. Especially when you're dealing with health professionals and the education authorities. We know our children and what we need to do that is best for them.
Our children need support. Without special care and support, our children will not be able to cope and excel. I know we can’t educate other people enough about our kids. You don’t need to educate the whole world – it is enough the people who work with them.
They need to know because they are the frontliners to our children, otherwise, our children will just fade into the background. I truly need to stress the importance of finding out as much information as possible and encourage every parent to keep reading about autism.
Autism is such a wide spectrum that no one shoe would fit all. Information is key. Research everything. Start looking into everything and keep your mind as open as possible. And more than anything, we need to pick our priorities and deal with that one. You can’t just address the whole lot all in one go – you focus on that one, and then the next, and so on.
The biggest worry for me is, what would happen to Naim when I'm no longer around. As a single mum, I have my only other child, a daughter, Nasha Raina, who I hope will assume responsibility for her brother. My parents, Datuk Muhammed Feisol and Datin Lin Hafni, have provided excellent support but they need to be looked after as well, and really, they love Naim with all their heart.
So that is why, we as parents must find that key that can unlock the true potential in our children's lives that will teach them to be independent so that they may live their lives as they want in our society and we, their parents, may finally rest in peace. – The Vibes, April 2, 2021
Felina Feisol is a member of the National Council for Persons of Disability of Malaysia, a past chairperson of the National Autism Society of Malaysia (Nasom), and a board member of Ronald McDonald’s House of Charity (RMHC)
_Beatrice_Leong_and_a_community_of_autistic_youths_still_in_school.jpeg)
