A Memorable Journey Unfurled
A new volunteer, Aruna, on her first visit to Apoorva Center for Autism, slowly stepped into the classroom of four students so as not to disturb the session. She was permitted to observe from a distance. The session involved conversation skills on the different weather conditions and the appropriate clothes and accessories one should wear and the edibles one should consume during the respective weather conditions. A lot of pictures were presented one-by-one with word cards and alphabet tiles. Children who were good at forming the words would do so with the help of the tiles. Pictures and word cards were used as a reading and matching activity. The teacher had to prompt the students at times to concentrate on their work and two of them were eager to help the rest of the group in answering.
Time for a break. The teacher introduced Aruna to her students – Abhay, Anirudh, Robin and Mathew*.
Aruna was greeted with a nonchalant “Hello” and handshakes from Abhay, Anirudh, and Mathew. Despite the fact that they had observed Aruna from the corner of their eyes during their class, they decided not to look into her eyes when greeting her!
Robin was more boisterous than the rest as was evident during the session earlier. He bit his left arm twice and slapped himself a couple of times and if that was not enough, he pushed the heavy steel table towards the teacher. The teacher wrote a message and read it to Robin. The message read: “She is the guest I told you about. Be good. Fold your hands. Focus on work.”
Now imagine how Aruna’s mind must have been reeling with anxiety. She heard the word “visitor” which prompted her to guess about Robin’s non-acceptance. She told herself: What a start!
Then came Robin’s turn to greet Aruna. Bang came a kick from the all of 4’ 11” boy right into Aruna’s lower abdomen. It took a couple of seconds for Aruna to get control of her senses. The teacher immediately got Robin to apologize and placed a black dot on his behaviour chart.
The teacher and Aruna began discussing Robin’s behaviour. She explained that a change in the environment and seeing new faces causes some of amount of anxiety in him and he expresses blatantly. She sounded apologetic looking at Aruna’s tense expression. Then she took Aruna around the room, described why pictures were emphasized and also the importance of the alphabet tiles. Children with autism find it difficult to write. Therefore teaching materials are adapted to suit the child’s needs to continue building their knowledge. Aruna commented on the help genuinely offered by Abhay and Anirudh during the session. To this the teacher said smiling, that they have yet to learn to wait for their turns.
Aruna’s mind was multi-tasking – listening and yet trying to recover from the jolt. Toward the end of the stipulated hour, she took leave of all eight children and three staff members.
Do you think that Aruna, then new to the world of autism, would choose to enter the field after this horrendous welcome?
Bet you, she did. She told herself on her way home: “Eh! Robin, watch out here I come. There are better ways you could express your feelings.” So after doing a course in Special Education (Autism) for a year, she entered the field of autism.
During the Special Education course, she came across a wide range of individuals in the autism community including a couple who had gone their separate ways because the father could not accept the special child. The mother, with the help of her parents, was bringing up the child. Aruna observed the role of doting grandparents who could not bear the tantrums of the child and eventually gave in. She observed the parents trying to modify their child’s behaviour, knowing well when it had reached extinction. All efforts ultimately go haywire.
After the course, Aruna decided to help Apoorva Center for Autism. Today, the Center caters to individuals affected by autism to varying degrees and has a specialized center for early intervention under the able guidance of a BCBA professional. Apoorva has a team of dedicated educators, specialized therapists, parents, teacher-aides, consulting dieticians, homeopathic professionals and psychologists who are trying to reach out to more families in need.
Long before resource rooms were created for autism in mainstream schools, Apoorva decided along with parents to convince a few schools to open the doors for inclusion. It also appointed an educator to be with the child as a buddy at required times.
Today after eight years, Robin’s circle time includes a group of 26 peers and each follows his/her duty 70% of the time. He is minimally-verbal and communicates with the help of sentence strips. He gets into mood swings which make things very difficult at times. There have been instances in which he has been at a loss of words and displays aggressive behaviours. Yoga and movement therapy have helped him to cope to a large extent but at times he is desperate. His family has been advised to consider biomedical intervention for him.
A major change occurred when the school was gifted electronic switches that would replay a recorded message when tapped. There was a smile on many a face. Students would use this to request a break, toilet time, or a change in activity, or to indicate when they were hungry. But only one message would be conveyed with one switch. Upon browsing through their manuals, it became apparent to Apoorva staff that an ocean of gadgets is available to autistic children in America. It is quite costly for the families who attend Apoorva. Benevolent donors are being convinced to sponsor some important tech-talk devices (multi-levels) for the Center and for some children to carry along with them throughout their day. There will be a day when most of the minimally-verbal children use their tech-talk devices as some of us use our sophisticated iPods or touch-phones.
Aruna came in with the intention of making a difference to Robin and his friends, but today they have given her more than she could have asked for. Her next plan is to work on probable placements for the young adults which is a Herculean task.
This story intertwines the hopes and untiring efforts of the autism community at one particular Center through the eyes of Aruna, who because of certain changes in her health decided to shift her journey as a special educator. Her chance discussion with her neurologist and a few contacts led her to the world of the challenging mystery syndrome known as autism. Along with her friends, she is trying to link every piece of the puzzle one at a time.
Nithya Lakshmi M K
Apoorva Center for Autism
*names of individuals have been changed upon request.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.