Article: Setting the Stage for Inclusion and Belonging- by Chitra Paul

Setting the Stage for a Lifetime of Friendship and Belonging

By Chitra Paul

On May 29th, 2020 Keystone Institute India hosted an SRV study group entitled ‘Tis People that Matter, in which the challenges and possibilities of helping people with developmental disabilities establish freely-given, inclusive relationships with typical people were explored. Two articles formed the basis for our rich conversation, and the following thoughtful and instructive reflection and response was written by parent activist and change agent Chitra Paul.

The paper by Jane Sherwin (Sherwin, 2011) begins with Aristotle’s quote – “The desire for friendship comes quickly. Friendship does not.” This is something I have seen happening so frequently in the lives of many children with autism that I know and interact with, including my own son. The societal lack of awareness, specific social skill competencies and a society that pushes for exclusion based on stereotype and fear of difference all play important roles in people with disabilities often lacking the richness of freely-given relationships and friendships in their lives.

Raymond Lemay’s paper titled “Social Role Valorization Insights into the Social Integration Conundrum” (Lemay, 2006) puts out a few “Roles of Thumb” for achieving Social Integration. Jane Sherwin’s paper “The Desire for Friendship Comes Quickly, Friendship Does Not: An Exploration of Valued Roles and Relationships” also talks about the implications. I am sharing below some experiences from my son’s life that connect so well to the many points mentioned in the two papers.

Tarun’s Educational Experience

Small is Beautiful – This is something that was one of the reasons why the educational inclusion process worked out so well for my son.

However, I never realised it till I read the paper. And the inclusion process has been a critical part of him being able to develop relationships and a few friendships, too. Initially, when my son started school, the school itself was just starting out and had very few children, six children in the playgroup with a teacher and support staff. This small size facilitated developing strong relationships with not just the adults but also between the children. As my son is non-speaking and did not have a communication system in place at the time, there were limitations.

However, the teacher and the school made sure that his disability did not become the central focus. Instead they focused on helping him build relationships with his peers in whatever manner and extent possible.

Some of the strategies they used regularly were to invite and welcome different classmates to help and support him, play with him, and spend time with him in all sorts of activities. The classmates included

the teacher’s own daughter, who served as an excellent role model to all. Simultaneously, academic and non-academic activities were adapted so Tarun could participate more fully. He had lots of sensory issues that were always considered when planning activities for the class. Competency building strategies were also included in subtle ways to help him gain greater confidence. These included essential communication skills, competency to use the toilet on his own, eat his food on his own, and many others. He was placed in the same classroom for three consecutive years and, having one consistent teacher further helped in better integration into school life in a natural manner like along with his peers. This set the foundation for the basis of peer interactions and friendships in the future as well.

A factor that also played a key role here is another “Role of Thumb” mentioned in Lemay’s article – One at a Time. In addition to being fully included in a small school setup that grew gradually, my son was the only child with a disability in the school for the first few years. This made it easier for everybody to include him. As he started out at the age of four years, the – Role-Person Fit – was also appropriate in the context of his lacking many skills. Many smaller children start out with skill areas not up to the developmental level, but in the smaller age groups, these tend to be overlooked or children are supported to gain competence.

As he grew in the school system, his needs changed but the school and his peers adapted to support him and include him. He was always included as an active participant in all programs that his classmates were part of. The teachers and other adults and slowly over the years, his own classmates took up supportive roles to help him be an active participant in these. The significance of him being an active participant in these were revealed to me during an activity that my son had to do for his math schoolwork. The activity was to fill in a timesheet for his life where the children had to write about the most important event in their lives for each year from when they could remember. One year, my son named his participating in the school dance in the Annual Day Programme. This was exactly as mentioned in the paper by Jane Sherwin about how task participation and relationship participation are linked to each other. Through the task participation of being active in the annual day programme, he also was able to strengthen relationships with his peers through an intense shared experience, bringing them closer.

As he has grown, gaps have widened between him and his peers in terms of developmental milestones, but that has not stopped Tarun and his friends from continuing their friendships. They have learned to communicate with him through the subtleties of non-verbal communication. They have adjusted to his many varied behaviours without passing judgement or excluding him from groups. Best of all, some of these peer relationships have grown into the next level –friendships. These friendships have a strong foundation on love and respect for him and his varied abilities. One of his friends has maintained the friendship even after changing schools, not only through social media but also meeting up in person.

The respect that I mentioned above for him and his varied abilities flows in part from his valued social role as a keyboardist. He played the keyboard for his class special assembly and soon after that also passed his London School of Music Pre-Prep exams which were put up on the school social media page and immediately, he was the talk of the school. His classmates were very pleasantly surprised and happy,

and this was often conveyed to me. He does not sing but is recognised as someone with an innate good sense of music and someone who can hold a tune through humming. He is encouraged to hum when his classmates sing thus making him a contributing part of the group. Tarun’s classmates recognise that he is a unique and interesting person, and have accepted him as different but not less.

More recently, as he is in Grade 8 now, his classmates form their own groups on social media like WhatsApp and he is always invited to be part of every group because as one of his classmates mentioned, “He is our friend.” Of course these have taken a long period of time and also efforts from multiple people who are part of his life working in coordination to achieve, but in the present time it is one of the most important aspects of his life. This clearly shows in his stated reason for liking school. When he was younger, he used to give the reason as -“because school is the best place to learn” which has over the years changed to, “because of my classmates and teachers”. Clearly, the importance he gives to these relationships and friendships in his life has grown in the ways that are expected of typical teenagers.

“Tarun’s classmates recognise that he is a unique and interesting person, and have accepted him as different but not less.”

Other Community Spaces

In addition to the school space where a great many relationships and a few friendships have been forged for my son, we have also worked to craft relationships with extended family members, neighbours, our church and also a few other specific instances in different spaces.

Within our family, we have always attempted to ensure that Tarun is a part of every family get together and every other function that we attend. We understand that we must expose him to more people so that the simple chances of forming relationships and friendships improve for him. Some of the specifics we always attempt to address towards this goal include modelling the kind of relationship he would expect from others, based on respect and acceptance for who he is rather than expecting him to adhere to all societal norms all the time. Simple things, from always seeking out his choices in the minutest things to letting him help himself rather than doing things for him. We strive to respect his choices and decisions and make sure that we stick to them. For example, if he expresses that he needs to take a break or doesn’t want to have a conversation at the moment, we encourage others to respect this and know Tarun will indeed get back to them when it ‘works’ for him. Understanding the importance of technology in friendships between young people, we have assured that he has message exchanges with his cousins and family members. Also, his augmentative communication device is always at hand for him to converse or respond, which helps people see that not talking does not mean that one does not think, feel or understand. Over time, these efforts have helped him develop some relationships that are cherished by both parties. This effort has resulted in him being valued as a family member, even in the larger extended family.

Within our apartment building community, we have sought to help Tarun form relationships as well. Although this has been a tougher task, there has been one positive result. It began with a friendship that I had developed with a woman living in the complex. She was very enthusiastic when she heard about my son and initiated having my son over to her place for an interaction with her son. I was pleasantly surprised and pleased when a relationship developed which has lasted over the years between Tarun

and his same-age neighbour. In our experience, friendly people do not always translate into friendships, but in this instance, they formed a lasting bond.

The members of our church initially were totally unaware of how to interact with my son and showed a strong mind-set of sympathy and even pity. However, over the years as many church members have come to understand him better, mind-sets have shifted. He is enquired about and missed when he does not attend church on some days. The interactions have become more directed towards him than through intermediaries like his dad and me. He has joined the Sunday school at church where he is included in all activities. This has been a more recent development in Tarun’s life, and we look towards further strengthening of these relationships.

“The road ahead is not easy as he passes through his teens and enters adulthood, but the hope is kept burning that he will have a life enriched with people who love and care for him.”

In the area of recreation, my son attends exercise class at a centre for training gymnastics. Although the classes were initiated specifically for children with autism, relationships have developed over the years. We have worked to support more integrative relationships, especially one with the same age son of the manager of the training centre. Initially, we helped to structure the relationships by asking if the young boy would help Tarun learn to skate. Through this activity, interactions extended past skating instruction, very naturally between the two of them. In fact, the younger sister has also joined this small friendship circle.

Specialized support practitioners, such as therapists, have also been a part of Tarun’s life, and another area where I have consciously attempted to help him build relationships.

Surprisingly, these relationships have continued even after the therapists have moved on. Most of them still stay in touch and interact with him through social media and otherwise. One of them has become a mentor figure for him, and a very good friend.

Because Tarun communicates using typing as a medium, we felt it was important for him to interact with others who also use this means of communication. We attempted a planned interaction between my son and another young boy with autism who communicates through typing so that they could both learn and share communication strategies from each other. Since both need support in the form of communication partners to communicate, the initial meetups between us moms along with our sons. We tried hard to stay in the background and were thrilled that without much effort from our sides, the two young men gelled. Their get-togethers have continued in person and also online through video calls.

The attempt has been to expose my son to as many people as possible so that his life is enriched with relationships, a few of which could develop into friendships that last a lifetime. Towards this purpose, some efforts have been initially planned and then they have taken off on their own. Others have simply happened along the way because of optimal situations for nurturing relationships, including his presence in typical, fully inclusive community settings such as school and church. Either way, these relationships continue to help him grow into a happy young teenager. The road ahead is not easy as he passes through his teens and enters adulthood, but the hope is kept burning that he will have a life enriched with people who love and care for him.

References:

Lemay, R. (2006). Social Role Valorization insights into the social integration conundrum. Mental Retardation, 44(1), 1-12.

Sherwin, J. (2011). ‘The desire for friendship comes quickly, friendship does not’: An exploration of valued roles & relationships. The SRV Journal, 6(2), 22–31.

CHITRA PAUL

Autism & Inclusion Advocate, Special Educator

Chitra dons many hats, working towards inclusion in Bangalore, where she lives, as well as nationally. Chitra is a trained special educator, a strong advocate for inclusion of persons with autism, administrator of a parent support group, and a parent mentor who passionately believes that all children with special needs have a right to a life with respect and dignity in this world. She strives to follow the saying, “Nothing for us, without us” and so advocates strongly for inclusion of the voices of people on the autism spectrum in all facets of life. She is also a mother to a 15-year old teenager with autism. With an MA gained in Special Education and Inclusion from the University of Northampton, she had a previous career as a clinical microbiologist, holding an advanced degree in Medical Microbiology.

Chitra is active as a volunteer, supporting parents of children with autism in Bangalore through support groups and resource sharing to better equip parents to support their children. She also provides individualized support to other parents, all within the context of autism.

Chitra often serves as a panellist at events and workshops, leads inclusion and autism awareness events, develops material to create awareness about autism in multiple languages, and advises organizations starting-up new initiatives. She has advanced training in the ideas of Social Role Valorization, and is a member of the All-India SRV Network.

Keystone Institute India (KII) is a values-based national training institute designed to improve the lives of people with disability across India and to fuel a change movement on a national level, working toward a more inclusive, just Indian society where all are valued and all belong. The work of KII serves as a catalyst for the development of supports, services, and initiatives, which better safeguard vulnerable people, establishes thinking which works towards full citizenship and full lives, respects the voices and perspectives of people with disability and their families, and facilitates India moving toward a society where all have possibilities and potential, and all matter. Keystone Institute India is a program of Keystone Human Services, funded by a grant from the Rural India Supporting Trust. Keystoneinstituteindia.org