Written by Wency Jelson
I am a mother of three wonderful sons. My oldest son Caleb is 6 years old. When Caleb was around 2 years old, we knew something was not right. He didn’t make eye contact, he didn’t respond to his name, sometimes aggressive, hyper, always screaming and often cried nonstop from midnight to dawn. He focused on specific tasks like lining up toys. He also had insensitivity to pain. Long story short, he was referred to a child psychiatric specialist in Hospital Mesra, Bukit Padang. Eventually, at the age of 3, the mystery was solved. He was diagnosed with Autism Spectrum Disorder.
Cayden, my second child is 4 years old and Clement, the youngest, is 2 years old. Having three boys with different personalities and needs, my husband and I sometimes struggle with how to best respond to the needs of the family, all the while assessing the moods, behaviours, and responsibilities of our special boy, but somehow, we survive.
When people ask me what it’s like to raise a child with autism. I somewhat struggle to put it into words. Of course, it’s true that raising a child with autism is not easy. It is challenging, frustrating, heart-wrenching but also joyful and rewarding all jumbled together. I remember, the day my son was diagnosed with autism was devastating. There were days of denial, uncertainty and sadness, but that was 3 years ago. Since then, we have come a long way. This sharing is to give you a glimpse into what one day in our life with a child with autism is like.
Around 9 o’clock I announce bedtime. With my instruction and assistance, Caleb goes to the bathroom (He has been diaper-free 100% since January 2018.), he turns on the air conditioner, says a bedtime prayer and gets tucked into bed. Like many other kids with autism, Caleb struggles getting to sleep. He rarely falls asleep on his own and can’t falls asleep without a parent present. He talks, sings, giggles, laughs and cries for no apparent reason, and this can go on for hours. Sometimes, I ignore him, and I pretend to sleep or I order him to stop, pat his back, hug him and let him rub my nose. This nose rubbing behaviour is called ‘stimming’. Sometimes, just having me near helps him relax enough to fall asleep.
The Morning Before School Starts
Caleb usually wakes up at 6.30 in the morning. Sometimes, it can be earlier than that. His morning routine is simple but his morning mood is sometimes unpredictable. He gets up, goes to the living room, and turns on the television. Caleb He has a relaxing morning without having to rush out the door early because he attends preschool in the afternoon. At around 10 o’clock, with my assistance he takes a shower, dresses, puts on his shoes and off to school we go! His mood generally lightens because he loves going to school.
The hours an autistic child spends at school are crucial, so getting the right school or the right teacher is really important. I am a primary school teacher and the decision to enroll Caleb to the
school I teach at was the best decision ever. His preschool environment is warm and loving. The teacher and the assistant are nothing short of exceptional. Their level of acceptance, understanding, dedication and love is unmatched.
Last year was a heartache. Everything was new for Caleb and that was a disaster for a boy like him. He struggled with communication and some sensory issues. He has echolalia. He hates the sound of crying or screaming kids. He has unusual chewing behaviour. He chews on paper, tissues, cords, pencils, rubbers and many more. In the classroom, he sometimes screamed unexpectedly, or he covered his face and ears during the whole lesson. Tantrums were no stranger. This year has been a little bit better though, Caleb enjoys school so much.
After School and Dinner Time
Caleb finishes school at 4.30 pm but he has to wait until I finish my work. At around 5.50 pm we leave school and we usually drop by the supermarket as per his request, just to buy his favourite drink and favourite chocolate cookies. Sometimes, I ignore his request and drive straight to home. When he does not get what he wants, he might scream or sometimes he sits quietly, which might indicate that he’s tired and sleepy. When we reach home, I bath him and let him have his reading time.
At around 7 o’clock, we have our dinner. However, when it comes to meal time it can be really tricky. Caleb is an extreme picky eater. He eats the same thing, same brand, same colour of food and same flavour for every meal, every single day. He eats the same cookies, every single day. He drinks the same drink using the same glass, every single day.
Therefore, I have to cook the same meal every day. Caleb is also obsessed with being clean. He hates the feeling of stickiness. If anything gets on his chin or hands, he goes hysterical, gets anxiety and it must be cleaned immediately. He is also picks up any bits of food that are on the floor or on the dining table. The idea of spilling food that is messy on himself freaks him out so he refuses to eat on his own. Unfortunately, he is not very skilled with spoon yet, so I have to feed him like he’s a baby. This is one issue that we’re still trying to work out though.
I firmly believe that siblings have given many benefits to Caleb. Having his siblings has been like inbuilt therapy for him. Through them, he has learned to cope better with noise and crying kids, personal space, sharing and waiting turns. That is invaluable for a child who struggles with learning and social skills. Caleb is very close to his brother, Cayden. Cayden is mature for his age, very independent, protective and is a loud ball of energy. He will be the first person to push his brother’s buttons, but he is also his brother’s biggest supporter. They fight hard, but they love even harder. Watching them interact brings so much joy to our house. Their squeals and laughter as they run through the house prove that love needs no words.
Early Intervention and Therapy
After Caleb was formally evaluated in September 2015, we didn’t hesitate to consider the recommendations put forth after the evaluation. That was the beginning of a long road, one that has involved significant time, effort and of course, money. We believed the best thing we could do was to start treatment right away. The earlier children get help, the greater the chances of a successful treatment. In previous years, Caleb attended occupational therapy and speech therapy session in the Queen Elizabeth Hospital, behaviour therapy session in CIEC, Hospital Mesra Bukit Padang and another therapy session in The Therapy Tree, Tanjung Aru.
In 2017, he started to attend a mainstream preschool and that’s when we started to reach the point where we wanted him to begin experiencing life more like a kid, and we wanted to stop overrunning his schedule with therapy sessions. We loosened the reigns on the therapy regimen and began embracing a life still focused on meeting his needs, but not dominated by therapy. Now, he attends a once a week therapy session in The Therapy Tree.
In order to support Caleb outside of his therapy session, I plan various activities at home by using picture cards, realia and fun games to teach him some important life skills such as toilet training, putting on clothes and picking up his toys. I also include reading time in his routine, since he loves books so much and that’s a good thing, because books help him to focus and are comforting. On top of that, books have also helped him overcome his gadget addiction. He has now been gadget-free for more than a month.
Caleb still repeats words, but he is able to talk in his own way. He still has his “issues” and I am sure he will continue to have them, but he is an amazing boy who loves, laughs and gives the biggest and sweetest hugs one could ever ask for. Autism has make his life more challenging, but it has also made it even more exciting and remarkably interesting. Autism does not define him, rather, it gives him character. People always say, “You’re a strong mom.”. No, I am not, he’s a strong boy.
Written by Wency Jelson
As Feature in Parents Avenue Magazine
Issue No.12 July to September 2018