I am Akshayee, and I am passionate about creating strategies that help autism function better, live with dignity and have a happy and sustainable life. Autism in India is being punished not just for being autistic but also for being inferior in some way or other by those who are biased about what is perfect and what is not, what is financially viable and not, what is effort worthy and not. I work to ensure that autism is understood, respected for who they are and enabled in a society that probably is in very early stages of understanding what enabling even means. Despite understanding all the limitations and hurdles, the intention to achieve these goals made me build Sense Kaleidoscopes, the very first academy for those with Autism and Aspergers syndrome.
At Sense, I have a very small team that is dedicated to doing whatever it takes to help our autistic teens feel productive and comfortable. Corona times have of course redefined the meaning and idea of a teacher in a space that provides services for children. The past few months I have very silently been watching posts of how schools and teachers who teach neuro-typicals think that these are trying times.
It’s undeniable that with the whole COVID-19 situation, a lot of teachers are facing a very unique challenge. Also, for a second, I do not want anyone misinterpreting this post to be one that intends to project what we do as mighty while misplacing or belittling the efforts of the rest of the community. The intention of this post is as always number one, building awareness; number two, speaking about autism and why it is necessary to keep the educational routine going because somewhere in the midst of all the very loud chatter we have completely excluded the children who autism who have always been the ones that no one understands or even wants to understand.
Number three, I write this blog for my teachers – who are always in the dark spaces, hiding and working away like elves and who never ask to be appreciated or even recognized for their efforts. In fact, they do not even think they deserve it. The reason for this is because we are not teachers, we are actually students who have to believe day on day that we ‘do not know’ because only then will we even ever be able to work in a way that autism smiles at us and loves us. We have to work hard and also be humble and most importantly not have a great sense of self. Because that stops learning and we can’t afford that. I write this for those teachers of mine, my true heroes of autism, my true autism/corona warriors.
Here, I shall elaborate on the challenges and do a mirroring of our world and what we are doing. So, what are the challenges a teacher for neurotypicals faces and what life means to us, the teachers who work with autism!
Challenge 1: Go through digital transformation overnight.
Teachers said: Challenge accepted - They hid their tech-fears behind a simple smile because children’s learning is at stake.
The Autism Teacher’s World View: We never had a choice, our kids love and associate with gadgets better than they connect to humans. I would think it is because gadgets are predictable and calming. So, we work on a daily basis with technology and please note we can never stop! We also need to keep updating ourselves with new technology because our students pick up software skills like a neurotypical child picks up social and life skills, so the bag grows every few hours not just every day. We prepare digital lesson plans to entice our kids because if they get bored we could have a tantrum in class. We create interactive learning projects that have touch interfaces to create a world of magic and wonder within a small classroom so our kids experience the joy of learning in a language that means the world to them. We work with multiple websites and applications so we have gone ahead and rechristened ourselves as the ‘SEEKERS’ who are constantly looking for answers. We burn the midnight oil searching for content that would win the hearts of our children and drag them out of their bubble. We teach them their way around clouds and coding along with being socially responsible on social media and also understanding that a moral code exists no matter where and what. We ourselves have probably become part of the walls and the smart board in the classroom. Most times we forget that we are human and transform to become Siri or Alexa only because our kids like it!
Challenge 2: The challenge demanded that they have to open their house for public viewing
Teachers said: Challenge accepted. They suppressed their inhibitions, foregone their privacy because children’s learning is at stake.
The Autism Teacher’s World View: We practically live in each other’s bedrooms and living rooms. Many of our children need support at 12 am or even 6 am and as teachers who sense anxiety and work with meltdowns we do not have the freedom to maintain strict boundaries. We are working 24/7, we do not spend that much time chatting with our friends or family as much time we spend chatting and working with our students and their parents. We have been having the kids over at our homes from day one, we opened our doors and brought them by to cook meals with us, we took them to our home gardens and discussed why f**k is a bad word, we hosted them at our homes for over weeks to help them understand the connection between action and consequence. Of course, we were at the receiving end and branded as cursed witches by the student because we were doing the tough numbers, we were giving them consequences and not accepting a no for an answer. We were also the ones that sat through their long meltdowns and carried out interventions that parents could never have the heart to go through with. We waited and persisted through this process so that the student would let go off his old strategies and build healthier new strategies to cope better and meet with the expectations of the world.
We asked our partners and parents to give us the space and accept these children as part of their lives too. During corona, we just extended these times from an hour or two to round the clock. Some kids are coming over home because the anxiety of a lock-down is just too much and we just break bread and talk about all the anxieties they feel and why they feel an urge to run out of the house. We also discuss what to do and why others are not worried about autism as much as we would like them to be? We continuously ponder about when things will go back to normal and how we can avoid such situations in future? We have also been discussing how we can build a community for autism, a safe haven where the kids that I am working with can always stay in touch with their friends no matter what and continue to live life on their terms. A community that is far beyond petty clashing egos, judgemental views and a place that can help them have a life filled with friends, family, work and also a place that they can call their own no matter what.
Teachers said: Challenge accepted. They started working overtime to plan for teaching without any resources because children’s learning is at stake.
The Autism Teacher’s World View: We have always worked without any resources and like they say what does not kill you, only makes you stronger. We hardly get any support from the government or any large scale corporate that supports disability. So, we work with small spaces and generally spend a great deal from our pockets to provide a suitable learning environment to the students. We are the only school in India with tech-enabled classrooms and we have a crazy 1:3 teacher student ratio. The model is not something that is financially viable in any world. But this is the only way we can create a real impact and so we do it. We are always on social media asking for help to get resources organized for the math or science department, we do not even have suitable furniture and we are always working more and more in the back-end because of the lack of access to resources. We never manage to raise enough funds and we are always putting a great deal of strain on the team that is working on the floor. When we do get lucky with donors they are those who really connect with what we do and appreciate the quality of work we do.
As pointed above, planning is a pre-requisite in a space like ours. Primarily, working with human beings with limited resources is probably one of the most challenging situations. This definitely takes the highest toll because as professionals who are passionate about the cause we are forced to adapt to extreme situations which could have been easily avoided if the student did not have such an excruciatingly horrific cognitive delays and in some cases traumas. Parents come to us and the list of behaviors and associated heartache is never ending, some stories are simply too scary to even acknowledge. Most times I am totally heart-broken because I know that it has gone too far along and those times I have to step down. I walk away with a heavy heart knowing that there is nothing I can do and that is most definitely the most horrid feeling I can feel.
At SK, we believe that a human resource wastage is something that is not forgivable nor manageable. Every life matters, each child is important. We wish that communities and civilized societies realized that a serious lack of resources like autism specific schools with an autism specific curriculum and effectively trained personnel is the reason why autism suffers in India. If a person on a wheelchair cannot access a ramp then, is that the fault of the person or the space and the policies that define that space? We at SK have so many kids who could have done so much more but they did not because they did not have access to learning in the way they needed. It is this reason why at SK we do not compromise at all. Of course, it seems like a crazy model and of course it is not something that we can survive but it is also a model that can show definite impact and we have living examples of that impact at SK.
The challenge demanded that they may not be paid their full salaries.
Teachers said: Challenge accepted. They started worrying deep in their heart about their own families. But, they were undeterred because children’s learning is at stake.
The Autism Teacher’s World View: We have always been underpaid, taken for granted and I do not think it would be possible to actually even put a value to the kind of work or work hours we logistically put into this space. We run the space for 8 hours and are the only autism school that pushes an academic and a professional arts program for 8 hours everyday. We do not fill their hours with random activities. We have carefully interwoven life and social skills within our academic and arts program and we ensure that learning enables children to achieve their true potentials. To do this, we work on the floor for 8 hours, then we go back home and build lessons for another 8 hours and prep for the next day.
We are a small team building a curriculum, testing that curriculum on floor and then redesigning and further enhancing the curriculum to ensure that we work through all the cognitive gaps so our students can inch up a bit more closer to the neuro-typical mind and understanding of life. We look forward to holidays because it gives us some more time to work on the curriculum. And, if at all we do take a break it is again to help a parent cope with a meltdown or discuss a problem that needs to be solved.
We have no social life and we have even fewer friends, we are constantly working and no amount of money can really justify that. But I always tell those who come to work that if they are looking to make money then we are the wrong place to be in. Not everything in this world can be valued with money and autism has taught me that and if someone does not understand this then they cannot work with autism. Autistic people have a sixth sense and they are always able to tell if a person is seriously committed to them or not. It's like they can smell it. And, as a rule if our loyalties are anywhere else but with autism then we cannot do any work that can be justified for autism. While we do sacrifice a great deal and do not get compensated we still believe that we are happy to do what we are doing because what we are doing is building something unique and creating a space like none other.