SPEAKING WITH SOUL — The Joys and Challenges of Being Parents with Autism Children
“In the circle of life
It’s the wheel of fortune
It’s the leap of faith
It’s the band of hope
’Til we find our place
On the path unwinding
In the circle, the circle of life”
The sun had just risen, and it was quiet. Gregorius Efraim (14), sat in the car, next to the driver. He hummed the Lion King opening scene song’s Circle of Life. In his head, Efraim seemed to have a thought of meeting with lions, tigers, and monkeys. A relevant imagination since he was indeed on his way to the jungle, just like the place where Simba lives.
That day, Efraim got up early. At 05.30 a.m. A household assistant, Mbak Nurul, helped him to get prepared. Mbak Nurul prepared Efraim’s breakfast, clothes, and hiking shoes. Efraim took a shower, then he waited impatiently by the car. Pak Slamet, the car driver, asked him to get in the car and put on a seat-belt. The car then moved to leave Jakarta.
Inside the car, Efraim looked excited. Nurul told me that Efraim never be cranky in the morning because he knows that he is going to go up to the mountain, to meet his dearest friends, such as lands, rocks, hills, and trees. “He loves being outdoor so much,” said Nurul.
The trip took two hours. At around 9 o’clock, Efraim arrived at Puncak, West Java. With a tour guide, Agus Mulyana, the kid started his journey to Kalimata Waterfall. The trip was about four kilometers down the river. The flow of the river was high; it was about 100 centimeters and the sound was rumbling.
Efraim walked bravely, jumped over big rocks. His clothes were wet with sweat and river water splash. He did not seem bothered. He enjoyed the trip.
In the forest, Efraim took whatever that draw his attention, including grass and gravels. On an uphill path, he took two branches from the ground. Efraim then formed the two branches into a deer horns. He spoke with the deer with his own verbal language that only he understands. When he has arrived at the destination, Efraim immediately jumped into the water.
Joice, Efram’s mother, explained that the reason of many symptoms of autistic children is sensory integration. It is the power to understand, organize and feel sensory data from the environment and body.
Nature, as a healer for autistic children, help solve the problem. It also has stimulating effects to teach the kid to be more focus and have better concentration.Therefore, for the last four years, every twice a week, Efraim has therapeutic garden to treat him from sensory integration problems. He has learned to get used to plants, rocks, and tree branches with various textures, smells, colors, and shapes.
“Nature is unpredictable. When he is hiking, he encounters with many possibilities, so he learns to adapt and face the challenges,” she said
Efraim was born in Jakarta, on September 8th, 2006. He was born as a strong and healthy baby boy, a son that many parents have expected.
As he grew, Efraim’s parents saw that there was something different with their son. Nico Prasetio, Efraim’s father said, when Efraim was little, he was obsessed with a fan, wheels, or things that spinned.
He was very strong and active. When he got upset, he used to throw things. When Efraim was invited to the mall, everything used to get messy. “He would run around, and I was not able to hold his hand,” said Nico.
When Efraim was about 3,5 years old, he was diagnosed with mild Autism Spectrum Disorder (ASD). He has showed the autistic symptoms, such as problems with back-and-forth communication that may include difficulty with conversation, body language, eye contact, and or facial expressions. Also, he does not respond to name, preferred to play alone than playing with others, and he has delayed speech and language skills.
However, Efraim showed capability of showing his compassion to his little sister, Ojos. Efraim likes to hug and kiss his sister. In many cases, autistic children usually have difficulties in communication and show their affections to people. Efraim is the exception.
Knowing for the first time that his son has autism syndrome, Nico experienced that his world seemed tobe collapsed. “I was shock! It was a big punch for my wife and I,” Nico explained.
Efraim is not the only children with ASD. Since its first discovery, around 1938–1940, the number of people with autism has continued to increase. According to UNESCO, in 2011 the number reached 35 million people in the world. With the prevalence of people with autism worldwide, 6 out of 1000 people have autism.
In Indonesia, according to the Ministry of Women’s Empowerment and Child Protection, in 2018 there were 2,4 million people who live with autism spectrum disorder. The number of children with autism spectrum disorder is believed to increase to 500 kids per year. Kids with autism can cause significant social, communication and behavioral challenges.
Shock and denial
Family caregivers of children with ASD endure intense and continuous sorrow and grief due to the impact ofhaving and caring for a child with these characteristics has on all aspects of their lives. Shock and disbelief are the first reaction a parent usually has when hearing the diagnosis of their expected child. Parent also feel anger, anxiety, denial, depression, frustration, guilt, helplessness, loneliness, nothingness, sadness, and shock.
Sinhwi, a mother of two son Olivier (18) and Owen (15), describes her feeling as “broken” when she heard his first son’s diagnosis. “I didn’t know what to do, I didn’t know what my son’s future would be,” she explained.
Sinhwi read 20–30 books related with ASD. When most of the books suggested her to bring autistic children to the treatment when the kid was two years old, it was almost four when Oliver was diagnosed with ASD. Feeling that her son was left behind made Sinhwi even more stressed.
Sinhwi explained his son’s condition to her family and friends. However, while she thought she may see the obvious and it has been confirmed by a professional, she still experienced denial from her circle. “My friends thought there was nothing wrong with my child. This somehow gave me troublesome. At the end, I understand that my son needs treatment,” she said.
Taufik Hidayat, a senior occupational therapist, explained that acceptance is the first parents’ challenge when they learn their child has an autism disorder. When a parent has passed the cycle of grief, they will face multiple challenges as their kid grow up.
During the childhood, he explained, parents are encountered with the children’s characters, such as sleeping and eating disorders. When the children are in the school age, parents have difficulties in finding the right and inclusive schools. Furthermore, when the child enters adolescence, parent will deal with the children’s mood swing, sexual behavior, and communication.
Hidayat mentioned that there are 29.316 Indonesia schools which claimed to be inclusive schools. Whereas only less than 10 universities in Indonesia which are providing inclusive facilities for the students. It makes young adults with ASD more difficult to accesseducation.
“Some schools have claimed themselves as inclusive schools. However,they do not provide the special students with teachers or facilitators that are able to support the student to their fullest potential. They just put the label ‘inclusive schools’ without being truly understand what inclusive means,” he explained.
For parents who have children with ASD, every day is challenging day. They are often faced with the extreme of their children’s changing moods.
When Oliver had dinner with their parents, for example, he used to throw things for no clear reasons. Parents are also often experience exhaust because of the child’s sleeping disorder.
When Oliver was 4–5 years old, the main challenge was toilet training. When he was 7–8 years old, he used to throw things. Entering the age of 14–15 years old, he had anger behavior problem. Now, Oliver is 18 years old. He was calmer than before, and he understands how to manage his anger behaviors. This achievement made the family relieved.
The challenge comes both from the internal and external factors, such as public facilities which are not yet supportive for special needs children, also public officers that arenot yet well-equipped with the understanding about disability. There were many cases that shows parents and children with special needs feel devastated because they were not well-served, or they experienced discrimination and public judgement in airports and shopping centers. Some children also reported that they experience bullying in their schools and neighborhood.
Malahayati, a mother and photographer, could not hold the tears when she explained about her son, Dyandra Amaril Amin (10), who had been scolded by a neighbor for his ‘strange’ behavior to enter houses with open doors. Andra also experienced bullying from his peers in the neighborhood.
Malahayati remember her mother’s words to let Andra feels the rejection. “Heartbreak makes Andra even more stronger,” she said.
Andra is diagnosed with autism when he was four years old althouh the signs of autism have seen two years earlier from his delayed speech. Also, Andra used to scream for no apparent reason and have ‘stimming’ means repetitive movements or sounds.
At the moment, Andra shows incredible progress. Treatments has sucessfully help him to be able to communicate with other people. He likes to read encyclopedias and he memorized the history of great nations. All the health treatments costs are paid using The Indonesian National Health Insurance (Social Insurance Administration Organization/BJS).
In the midst of all these challenges, parents have experienced joys and have learned so many things from their children. The children teach their parents about acceptance, joy, and gratitude, that no one can do.
For Malahayati, Andra is her best friend. “Every mother must feel her child is a gift, so do I. Wherever I go, I bring Andra with me. If I want to go to the museum, or eat some delicious foods, I must go to the place with Andra. He is my best friend, we used to hangout together,” she said.
Sinhwi said that Oliver has changed the way she thinks. “If in the past time Oliver’s success study was everything, — I have even arranged my child’s education plan from the kindergarten until he enters the university. Now, I don’t want to force myself because it frustrates me. The most important thing for me is to equip my son with life skills,” she said.
With the many challenges and struggles that she has been faced, Sinhwi suggested the society not to be judgmental to the parent and children with autism. “Instead of telling the parent to do something for their children, why not ask the parent what they can do to help us?” said Sinhwi, who ever tried magical treatments that she thought will cure Oliver.
Sinhwi shared her motivation for parent with autistic kid. “Don’t be discouraged, never give up hope. You have to value small achievement along the way. Appreciation and gratitude for every achievement is the fuel that keep our spirit up to go to the finish line,” she said.
Whereas for Nico, Efraim is a ‘blessing’ from God. Nico has witnessed that Efraim’s early intervention has proved successfulfor the kid. For him, there is nothing happier than seeing Efraim riding a bikeor producing the sounds for the first time. “I was very happy when I saw Efraim ridea bike for the first time. It is like I was having billions of rupiahs,” he said.
Nico said that his son becomes the unifier of the family. Through Efraim this family has learn to know each other better, and learn about gratitude. “The most important thing in life is not money or the other luxury items. The most important thing in life is gratitude to accept a child in any condition and raise them as the best as you can,” he said.
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*Photography and text submission as an assignment for ACFJ at the Ateneo de Manila University by Denty Piawai Nastitie. All the photographs are copyrighted to author any use of photos without concerns of author will be subject to legal actions.