Last December I volunteered at special school in Karnataka in the parent training programme. (I did this as part of my academic research in the area of mental disorders.)
The parent training programme is the first step when a child is diagnosed with Autism Spectrum Disorder. It was a month-long programme that taught parents about autism and about how to care for autistic children, to sensitise them and prepare them for the way ahead.
Every morning at 9 a.m., a group of mothers would come in with their children. Every one of the duos was different from each other, and in that small room it was clear to see how different families are from one another, how different mothers are from one another but yet how similar children are to each other. These four-year-olds and five-year-olds were four-year-olds and five-year-olds, who wanted to play with the blocks, take naps and eat their 10-15 a.m. snack.
Ammu [not her real name], a four-year-old, was diagnosed with non-verbal autism, which placed her pretty high up on the spectrum. This essentially meant that she would be unlikely to verbally communicate throughout her life. Through the duration of my volunteering I never heard her say a single world. Ammu and her mother had just joined the programme and it helped her mother teach the child how to communicate non-verbally through picture cards and gestures. This was important to her mother. How would she know if Ammu understood English if she couldn’t speak, how would she know if Ammu understood simple commands if she couldn’t reply to?
With Ammu, progress was slow. We wouldn’t know if she was listening to the teacher or to her mother because apart from being quiet, Ammu was a very calm child. She would sit placidly in class and look around or at her feet. She would do nothing.
In stark contrast was another child, Vijay, a five-year-old boy[not his real name]. He had autism as well as ADHD and as a result he would disrupt the class often, run around, throw tantrums and bite people. He was a very difficult child to control. After a few days of volunteering in these sessions and seeing Vijay bite every single person in the room I commented to the teacher: “Ammu’s mother is so lucky that Ammu is such a calm child.” The teacher looked at me and said, “Honestly you can’t say that. At least Vijay communicates through his rough actions. If he’s angry he bites, if he’s upset he runs away, if he wants something he’ll drag you to it but Ammu, she just sits there.”
It hit me then. If I am not in a certain situation, I have no right to comment on or assume for the people in that situation because there is a good chance I am completely wrong. In this day and age, where information is at our fingertips, it is very easy to form an opinion, an ‘educated’ opinion, and to look at a group of people which you do not belong to and say ‘wow, they’re so lucky’ or ‘wow, they’re so unlucky’. I realised how little I knew about families and children and in particular, how less I knew about somebody else’s family and somebody else’s children.
Ammu loved rhymes. She’d smile and once in a while she’d clap. But she hated ring-a ring-a roses. She hated noise, and the ‘hush-a push-a we all fall down!’ would upset her. She hated anything loud, so when the rhyme began she would start crying. Every day the class was strictly planned with a particular sequence of activities. After a week of classes, Ammu would start to cry even before the rhyme had begun.
Nevertheless, through Ammu’s crying, the teacher would complete the rhyme. If Ammu wasn’t taught to handle noise, which was in the form of a nursery rhyme, it would be difficult for her to handle crowds, busy roads and some forms of modern music. Every day, through her screams, they would finish the rhyme.
On the last Monday of the sessions, the mothers and children began their rhymes. They sang ‘The wheels on the bus go round and round’ and then moved on to ‘Where is Thumbkin’, and ‘Ba ba black sheep’ was about to finish. This had been the rhyme where Ammu would start to scream and cry in anticipation of the next rhyme. Today, all the mothers turned to Ammu while singing the last line of ‘Ba ba black sheep’ and saw her face wet with tears. But Ammu didn’t scream. She didn’t howl with frustration. Instead, she cried silently until everybody fell down. Once the rhymes were over, her mother hugged her tightly.
The last session wrapped up and the teacher said her goodbyes to the children and to their mothers. A few days later, Vijay’s mother called the teacher. “Every morning Vijay wakes up and stands at the door at 8-30 with his shoes on. He doesn’t understand that classes are over. He bites me and screams at me if I don’t take him out of the house. I took him to the park this morning because I couldn’t take it anymore. What do I do?”
The teacher told her strictly: “Stop giving in to Vijay’s demands. You can’t possibly take him to the park every morning. Soon he’ll forget about the class and start associating 8-30 a.m. with the park. Once you stop taking him to the park are you going to search for another alternative? Vijay will have to learn.”
There was a follow-up meeting the next month. Vijay’s mother had stopped taking him to the park and as usual Vijay had gone to the door with his shoes on and stood there. He did not scream, he did not bite but he stood there. Vijay’s mother took a firm grip on her son’s wrist and led him to the car. He sat quietly in the car until they pulled up at the learning centre. Vijay, still quiet, went in to meet the teacher with his mother.
The moment he saw the teacher, his eyes lit up. He ran across the room to the teacher and bit her on her arm. He continued to run around the class. He pulled Ammu’s hair and tried to bite Ammu’s mother. Ammu’s mother looked at Vijay’s mother and pityingly said to her: ‘He hasn’t seemed to have changed a bit.”
Vijay’s mother didn’t say anything. She watched her son run around the classroom and told the teacher, ‘Tomorrow morning is going to be difficult.’
The teacher replied, ‘But it’ll get better won’t it?’. And Vijay’s mother smiled.
As a student working in this area, I personally find the lack of knowledge among many members of the public and even some of my colleagues about such conditions among children to be astounding. Memes that showcase a photo, and the phrase 'He looks autistic', have become too commonplace. Memes that offend other sections of society invariably get a backlash, but in this case, the ones offended often cannot speak, let alone speak up for themselves. In situations such as this, I find that the courage and support given by parents to their disabled children need to be really appreciated.
dinnrpl8d@gmail.com
