Having children nowadays can both be a blessing and a challenge. But what happens if you yourself is just a teen, and you have small children, and one of them is autistic? And that’s not all, the issues she had to go through in her life is enough to write a movie about in a Netflix series.
There are days when life does not only give you lemons, it gives you water, sugar, ice and a whole lemonade stand to make the best of what life has to offer. During those days, you place your forehead on the ground and thank Allah for all the blessings you have been given. But there was a time in Suzie Aman’s (not her real name) life when no one came to her lemonade stand because she was nowhere to be found. Because at 15 years old, Suze was busy being a child who has to look after her own child. And if that is not all, a few years later, one of her sons Adam (not his real name) was diagnosed with autism.
You see, Suze was betrothed and engaged when she was 10 years old. No, this is not a typographical error. At a time when most kids that age were having crushes on their favourite movie stars, Suze was told that she would be engaged and will have to be married when she turns 14. At that time she could not grasp the full comprehension of the fate that would befall her. After all, she had just reached puberty and was trying to get the grasp of what growing up means!
Adam was born in 1993. At that time, Autism was fairly unknown, so it was unexpected. Suze was a homemaker and she brought up all the kids on her own. It was a prearranged marriage due to many reasons: Debts to pay, a promise to keep for her parents’ sake, and above all, that feeling that she has to take the responsibility to help her parents. Being that young, it was not surprising then that she did not know anything about the birds and bees, except that they are animals.
She had her first son at 15 years old ” … and life was very tough because I was a child bringing up a child. But Alhamdullilah not only I was a mother, but a sister and a friend to all my kids. By the time I had Adam, however, I was stressed as I just had a baby girl and he was unplanned and while I was carrying him, there were so many complications like he wasn’t growing, doctors had to boost me with medications as I was anaemic and had low blood pressure.
“Adam was born a blue baby as there was not enough oxygen. I needed jabs to pull through the day as I was the maid, the driver, the cook and had a baby to look after. By the time I was pregnant with Adam at five months, he started growing and that’s when another problem ensued: He grew too fast and became too big. By the time he was born, he was five kilo (11 lbs). He was also delayed by 10 days, and an emergency Caesarian had to be done. By then he was already suffocating, due to a lack of oxygen and he had swallowed the fluids,” she added.
Bringing him up was a real task as he was very tantrumatic. Thankfully, Suze is an avid reader. And she noticed that he wasn’t talking till he was five years old.
“I then started the uphill climb of having him diagnosed and studied the ways to help, understand and teach him. With all the kids going to school, I had to cook, drive, teach … it was a 25-hr/day job. BUT Adam was a joy to me at all times, yet I was so frustrated with the system as I went to the education department to seek help, but none was available at that time.”
Your Son Is Stupid
She then learnt the ways on how to help and teach him as she had stayed in UK for many years and understood their system. “I stayed with him everyday in school on the steps outside the classroom to jot down his lessons daily to help teach him at home. Although he could not do his exams or complete copying his work from the blackboard, he always finished his corrections with flying colours, but the teachers were not understanding, and even the lady headmistress said: “Apa nak buat, anak puan bodoh.” (What to do, your child is stupid). So I told the lady: You will see that he will one day prove you wrong! and I took him out of the school.”
She managed to put him into a private secondary school where he had the best and kindest teachers who helped him adjust and progress. She also has her sister working in the education department who helped her in acknowledging her efforts. “I wrote to the department asking for facilities for him and notified them of his progress through my sister. Thankfully in 2008, the Parliament approved and granted funds for Autism for 1.3 million ringgit to train teachers on how to teach children with learning disabilities (LD). I also learned the technic on how to teach LD children from a spastic school in PJ and volunteered in his school just to be close to Adam. I also volunteered in the Paediatric ward in the hospital to help the children,” added this steely lady.
Ironically, in that same year (2008), Suze suffered a major accident when a lorry got into a lane. The trauma made her blind and deaf on one side. They had to insert a metal plate in her left hand, she fractured her backbone, broke her ribs, suffered amnesia, was in a coma for one week and later had to learn to walk again. And she had to go for physiotherapy for two years.
If that’s not all, she had to go through divorce and she was not allowed to see her kids for four years!
“I only got him back two years ago and it was tough having to ‘tame’ him back. But that was a task I gladly took on as before that I was going through hell – I had no money, no kids, no house, nothing! But Alhamdullilah, Allah SWT rewards the ones who are patient and willing to wait and be thankful during the process,” she added.
“Today, my biggest worry as a single mum is that I have nothing to my name, as I have to work hard to save for Adam. I worry for his future . He has proven despite all the difficulties he has to go through with people, he has managed to score well in his PMR and SPM exams in Maths, Science and English. He was also on the Dean’s list. doing IT Computer in Kolej Komuniti obtaining a 3.9 score. He has also completed many Coursera online studies that earned him a number of certificates.”
“My wishlist? May Allah SWT bless him with a job to make him independent and may I be able to be with him till he is stable, InsyaAllah. For him to be able to buy a small flat or accommodation so as to not be a burden to anyone. He has come a long way and to be able to see his struggles and frustrations and disappointments and joys and sadness is somewhat overwhelming. My truest wish is for him to be happy and appreciated for what he is,” Suze said tearfully.
At 28 years old, this high-functioning young man with Aspergers Syndrome, with a mum who has nerves of steel, is now in Giatmara Akademi Kreatif Media taking 3D animation classes and he gets a small monthly allowance. Perhaps his mom’s wish may be granted soon. Everything will happen according to their time, in their own way, as destined by Allah. That’s what makes autism so special and so different. #autismisbeautiful – New Malaysia Herald
About the author: Hasnah Abdul Rahman is the editor-in-chief of the New Malaysia Herald while being an activist for autism. She has worked for various media organisations as reporter and editor and specialises in strategic communications. She is also a foodpreneur in her spare time and gives traditional cuisine that 5-star edge from her home kitchen.
Datin Hasnah is the co-founder and CEO of New Malaysia Herald based in Kuala Lumpur, Malaysia.
With an extensive background in mass communication and journalism, she works on building up New Malaysia Herald and it’s partner sites. A tireless and passionate evangalist, she champions autism studies and support groups.
Datin Hasnah is also the Editor in Chief of New Malaysia Herald.