Stories of the Unsung Heroes and Their Children
April is Autism Awareness month. Much has been done by many practitioners, organisations and parents to highlight autism to the public. I would like to take this opportunity to pay tribute to the unsung heroes that I had the pleasure of working with– parents and caregivers of children who have been diagnosed with autism.
It was December 2007 when Ixalia, a bubbly 6-year-old girl who loved to draw cartoon characters, was diagnosed with autism. As it was already year-end, her parents decided to send her to Kelas Pendidikan Khas in January 2008. At the time of diagnosis, Ixalia was verbal and had language comparable to a 3-4 year old child. In the time following her diagnosis, her mother worked hard to improve her child’s speech and language, always ready with a pen and notebook to jot down notes whenever they attended speech therapy sessions. She also taught Ixalia to read and write. When Ixalia turned 9 years old, the mainstream section (Aliran Perdana) agreed to let her enrol into Standard 1. She did so well, that in the following year, she skipped Standard 2 and went straight to Standard 3 at 10 years old. It wasn’t a bed of roses, as Ixalia did struggle sometimes. For example, Ixalia was expected to score above 90 marks in a subject but ended up scoring only 60 marks because she shaded on ‘A’ to ‘D’ in sequence in the objective answer sheet and not according to the answers she circled correctly in the question paper. Ixalia’s mother was not despaired but instead asked the class teacher for a stack of answer sheets to take home. She then taught Ixalia how to transfer the answers from the question paper to the objective answer sheets correctly.
Last year, Ixalia sat for her UPSR (she skipped Standard 5) and obtained 2A, 2B, 1C. It was an amazing feat considering that she had only 4 years of primary schooling in a mainstream class as compared to her peers. All thanks to a determined mother and a supportive family.
Ixalia’s proud mother informed me recently that her daughter can learn much better in school now and had just won a consolation prize in ‘The Inkvasion Squid Girl Hat’ contest organised by Animax in Singapore.
Meng was an 11-year old boy when I first met him and his mother. He was described by the child psychiatrist as ‘hyperactive, aggressive, and has self-injurious behaviour’. He was on medication to control his hyperactivity. It was very obvious from his mother’s face that she was very stressed and was rarely able to smile. Although Meng had speech, he was not able to communicate well and that added to his frustration. We tried a few approaches but did not work well with Meng due to poor generalisation skills. When I suggested using Picture Exchange Communication System (PECS) to teach Meng communication skills, his parents quickly agreed. The whole family was very committed to using PECS and Meng’s communication and language skills improved at a very fast pace. There were many challenging times, such as whenMeng would not stop asking to eat biscuits and throw a big tantrum when told ‘no’. The family persevered through it all and continued to teach him skills learned from therapy sessions.
Over time, Meng’s aggressive and self-injurious behaviourdecreased as his communicative ability increased. His mother also taught him to read and write. The pictures in Meng’s PECS folder were soon replaced with written words. Eventually, after about 2 years, Meng was able to learn language without using PECS. He could also accept instructions from his mother and obey them.
Meng’s mother told me that her proudest moments of him was when Meng’selder brother got married. She was very proud that he could sit through the entire wedding dinner at the main table and was not fidgety. She was also proud that he could tolerate people going in and out of his bedroom during the day even though he was very anxious about it.
It may not be a great achievement. But I am sure families who live with a child with autism will understand how some ‘normal’ things can be so hard for their child and how happy they will be when their child could overcome it.Meng’s mother’s frown did turn into many more smiles, thanks to all the hard work the family has put in to help Meng.
I first met Aiman when he was 6 years old. He was non-verbal and had very little communication initiative with people around him. In our initial meeting, we could not get anything done as he was very agitated. He refused to sit down, threw tantrum, screamed and shouted. His mother was at a lost as to what to do. I suggested that we get Aiman to come in regularly to therapy session to just play without heaping expectations on him to ‘perform’. As his mother was very keen to help Aiman, she agreed.
Aiman’s mother would take a public bus with him to come to the hospital. They did not miss any therapy sessions. As time went by, Aiman became a more willing participant. One day, after two to three months into the therapy session, Aiman came into the therapy room, promptly sat down, and took out toys from his mother’s bag, and started playing, keeping each toy before he moved to the next toy. This change of attitude is due to his mother’s diligence in playing with Aiman, not once but at least three times a day, everyday.
Aiman’s father soon took an interest in attending therapy session and both parents would always come with him. We then used PECS with Aiman and he began to show more communication initiative. His temper tantrums also lessen as he could let his parents know what he wanted despite being non-verbal.
The biggest surprise came one fine day. I was in the midst of a discussion with his mother and he was left to play by himself. Aiman came in front of me and pulled me. I got up from my chair, and he started to run away. Then he would stop and look back at me. I walked towards him, and he ran to hide behind a partition. I called his name and he squealed in laughter. When I resumed discussion with his mother, Aiman came in front of me to pull me again, inviting me to follow him.When I found him behind the partition, he ran towards me and laughed. It was then I realised that Aiman was inviting me to play hide and seek with him. That to me, was the biggest breakthrough I had with Aiman as he had previously shown no interest in playing with anybody.
Aiman’s parents sent him to Kelas Pendidikan Khas. He had a lot of difficulties in school. Despite that, his parents persevered and often discussed with me on how to help him to cope with school. Working with them has shown me how much sacrifice parents can make for their child and I learned the real meaning of never giving up through them.
Yee came to the first speech therapy sessionwith her parents at the age of 4. She rarely sat down and would only be attentive to activities she was interested in.She had no pretend play and was only interested in arranging cars in a row. She could name many things but could not use these words to communicate with her parents.
Yee’s mother attended therapy sessions with her. She had many challenges in learning language. For example, Yee could name flash cards but unable to name objects of the same name. She also echoed everything that the parents say without understanding the context (echolalia). She found it difficult to obey instructions and threw tantrum when she did not get her way.
We worked on many aspects of the language including increasing vocabulary, requesting skills, using sentences, understanding and answering questions,eliminating echolalia and narrating simple stories. We also used token system and social stories to promote positive behaviour.Yee’s mother diligently worked through all the challenges in both teaching her language and managing her behaviour. Her hard work bore fruit as Yee’s language skills and behaviour challenges improved so much that she was able to attend mainstream primary school by the time she turned 7. Yee’s mother continues to work hard to make sure that her daughter is able to learn well in school.
These are just a few of the many inspiring stories of the families that I had the privilege to work with. The story never ends even when a child with autism finally learns to speak or is able to attend a mainstream school. These families will continue to learn alongside their child – learn to accept that he/she is special, unique and extraordinary in their own ways.
There is a famous quote that says ‘behind every successful man is a woman’. I would like to add that ‘behind every child with autism, is a family’.
*Some names are changed due to confidentiality.
(written by Ms Yong Ennie , speech therapist )