–>>CreativeSaathi is our new initiative which is the daily blogging of Artworks. By seeing such an overwhelming response from all the little children and from their parents we have decided to extend our support and to provide a daily platform to all the budding artists.
–>>Please note you need to send your original artworks with all the details(specifications of the artwork etc)description, topic if any etc. Email – firstname.lastname@example.org And copy the mail to email@example.com
–>>Artwork can be a poster, or art done on sheets, canvas, fabric, different objects(bubblewraps, ice-cream stick, utensils, vases, stones, etc)
–>> It could also be any craft-work (like creating a best out of waste concept from the household stuff)
–>> Why Artworks or CreativeSaathi?? Because– Art is a form of expression which is in-built in most of our children, it comes naturally to them. So by using this mode of expression our children can:-
Give their message to the world/people around.
They express their feelings of happiness, sadness, anger, anxiety, shock, grief etc
They can frame their affirmations- like framing an affirmation to be healthy, or to be happy, or build confidence, to be self aware.
They can create a lot of awareness through their creatives and art.
They can showcase their talent.
This initiative could lead them to independence, recognition and employment opportunities by creating a platform having a worldwide audience.
So, all the best to one and all!!
Specialsaathi is thrilled to welcome 4 CreativeSaathi associates on board. They are young, energetic, full of unique ideas, renowned artists, professionally inclined towards Arts. We are extremely proud of each one of them.
Given my unique set of experiences as a professor and home educator, my interest lies in bringing systemic change through empowering parents of neurodivergent children. In my experience, change begins when we recognize that the role of the parent of a neurodivergent child is the same as that of parents of neurotypical children. I see the parent role as creating the right experiences for the child in the right environment at the right time to prepare the child for life.
I describe my role as a parent in terms of LIFESMART elements:
Create the conditions for Learning (L) daily,
Discover Nurture Interests (I),
Enrich Family (F) interactions,
Foster Engagement (E) in the community
I also see my role in terms of doing small SMART (Specific, Measurable, Attainable, Relevant, Time-framed) projects to address the four LIFE pillars.
I can stay focused and work slowly every day because I organize action around the four LIFE elements. We do not compete with others. We focus on where we are now and find ways to keep learning. We do small, focused projects towards a long-term goal.
Every child is different. Every parent is different. Every family situation is different. Thus, the experiences of the parent and child depend on the parent, child, and the situation. One type of therapy or one educational approach does not meet every child’s needs. Further, the possible paths for the child are not clear. We cannot assume a straight-line progression from kindergarten to high school and beyond in the same time frame as other children.
In my experience, the biggest challenge in raising a neurodivergent child is being in the “don’t know what I don’t know” state. For example, I had no idea that movement was of vital importance to Ananth’s development. The need for sustained, consistent systematic movement for Ananth is a piece of knowledge that we didn’t know that we didn’t know! Fortunately, we included movement through walk and through activities of daily living and addressed this need to some extent.
When Dr. Masgutova, creator of the Masgutova Neurosensorimotor Reflex Integration (MNRI) program suggested dance for Ananth, we moved from a don’t know what I don’t know to a state where we were aware of the possibility of using dance as a tool for development. Once we were aware of what needed to be done, we were able to start working on it even when we didn’t know how to do it. The decision to explore dance was one of the decisions with the greatest impact on Ananth.
Thus, a key challenge for parents is to recognize that they don’t know much of what they need to know for parenting a neurodivergent child. It is important to accept being in the “don’t know what I don’t know” state, keep learning, and then take steps to keep moving forward as they learn more about what to do and how.
The key question is: How can parents get the right information to create the right experiences as their child grows? Networks such as Special Saathi can play an important role by streamlining access to information sources and by using storytelling to bring more detailed explanations of what experienced parents have tried, what worked, and why it worked.
I believe that parents have the power to change their neurodivergent child’s situation and outcomes because they care for and understand their child, advocate for their needs, support them in their learning journey, and help them find their place in a neurotypical world. Thus, my interest is in solutions that change the environment for parents and enable them to act with ease and confidence.
While neurodivergent children have specific challenges that need to be addressed, many challenges arise because the environment is not designed for them. Viewing a neurodivergent child in terms of fixing their challenges often makes one feel powerless. Because the child is differently abled, even extraordinary efforts to change the child through therapies and educational approaches will not succeed until the parent and the system change. A three-pronged approach that emphasizes development of skills for parenting neurodivergent children, changing the environments so the child can thrive, and then addressing the child’s specific challenges is more empowering for the parent and for the child.
Discovering our Path Forward
The decision to homeschool our son was one of our most important decisions. Homeschooling planted the seeds for LIFESMART. The language of remediation was much stronger when we started our journey over 20 years ago. The implicit assumption of therapies and school programs was that deficits should be identified and addressed to reduce the gap between the child’s development and that of neurotypical peers.
In this environment, it was homeschooling that kept me playing and learning with Ananth in a way that worked for him. While we have benefited from many therapies and educational approaches, homeschooling kept us focused on where we were at any given time and taking small steps forward.
Homeschooling is seen as an alternative to school from kindergarten to high school. But homeschooling is a way of life for us. Our home will always be a homeschool where learning happens every day! Ananth is learning with many others today. He is a part of organizations. But home continues to the base for learning daily!
Homeschooling also made it much easier to discover and develop Ananth’s interests. In 2012, he discovered Bharatanatyam and wanted to learn it. Within a month of starting, he declared that he wanted to do his arangetram (the first solo performance of a Bharatanatyam dancer after years of training). Given his extensive motor challenges, we were wondering how to make this happen. But he was determined. Homeschooling made it possible to do Bharatanatyam classes during the week when his guru had more time. Ananth was diligent about practicing Bharatanatyam in the morning every day. Homeschooling meant that we were not in a rush, and he could practice dance daily!
Homeschooling played an important role in shaping family interactions. We went for long walks daily, learned together, and did household chores together. Fortunately, two families in our neighborhood homeschooled. Some of the children came to our house and played with Ananth a few times a week. We went to stores, parks, and other places. As Ananth grew older, music and dance expanded opportunities for interactions with community members.
My Journey as a Change Agent
We all have capacity to act and to change our lives and that of others. But this capacity does not develop overnight. This capacity is developed through life experiences throughout our lives. One of the key experiences that has developed my power is doing my B. Tech in IIT Delhi. When I joined in 1980, engineering was not a common path for women. There were four women in our class of over 200 students! I came from a conservative family and my school experiences also did not prepare me to be in the IIT environment. I learned engineering. But I also developed resilience! Persisting in an environment where I had a few friends but did not have a sense of belonging has shaped my life.
Since that time, many other experiences have helped me develop my capacity to work with others to bring about systemic change. One experience that is particularly relevant to how I view my role as a change agent is my work with The PhD Project. Because of my experiences in engineering school, I was drawn to The PhD Project, an organization in the US that seeks to diversify the workforce by diversifying business school faculty. Given my interest, Bernie Milano, the president of The PhD Project and The KPMG Foundation (now retired), encouraged me to study The PhD Project model. I was fortunate to observe and learn from a successful model. The PhD Project published my book, Growing Systems of Success, based on this work.
The Six Cs (Connections, Conversations, Clarity, Choice, Competence, and Coordination) that are now part of LIFESMART were developed through my study of The PhD Project model. The right connections and conversations bring clarity and help us make the right choices. We can prioritize and learn the right skills at the right time (competence), and coordinate with others to accomplish our goals.
Chance favors those who invest in their Six Cs!
The Six Cs move you out of the “don’t know what I don’t know” state to a state where you have a clearer idea of what to do and how to do it.
The Six Cs are an important part of LIFESMART. Conversations with therapists, parents, and educators gave me clarity. I had more confidence that we were learning the right things daily! Connections to the right people made it possible to develop Ananth’s interests. Connections and conversations also gave me many ideas to evolve interactions with a neurodivergent child. Finally, connections made meaningful community engagement possible for Ananth.
The Power of Education
My life experiences have led me to believe in the power of education. I was able to succeed in the highly competitive Joint Entrance Exam (JEE) for IIT (Indian Institute of Technology) because of parental support. I vividly remember receiving packets of materials from Agarwal’s Coaching. I did not have a peer network for preparing for the JEE. My father would often work with me on lessons and problems. Thus, I know from personal experience that parents can change the game for those who cannot access the system as easily as others. I also believe that education is of vital importance to every child. My vision is to empower parents to become active participants in their child’s education since systems are often not designed to meet the educational needs of neurodivergent individuals.
Ananth had several challenges. For example, eye-tracking and other problems meant he had difficulty reading. But homeschooling provided us a way to keep moving forward. We did not think in terms of what Ananth was doing or not doing in relation to peers. It was much easier to see where he was at any given point and keep moving forward daily. We have not fallen into the trap of low expectations. Rather, we have tried to discover what is doable and worth doing at every stage and slowly moved forward.
Today, Ananth is a Bharatanatyam dancer. He plays the piano and has completed level 6 of the exams conducted by Trinity College, London. He has completed his diploma in Hospital Documentation and Medical Records. He has been learning coding and web development from HashHackCode. He is also learning theater arts from RASA – Ramana Sunritya Aalaya. A Journey to Bharat through Natya that began in 2012 continues as he continues exploring and learning more about Indian culture through the arts and through daily experiences!
Playing it Forward
Finally, I see playing it forward as a key tool for me and for other parents. Playing it forward is a process of sharing our discoveries with others. I share daily in my LIFESMART groups. I share specific suggestions for parents to try. I explain why those suggestions are important, how they worked for us, and how they might work for others. This process has led to the development of our LIFESMART 100-Day Lab (http://www.lifesmartfamilies.com/100daylab.html). The lab shares 100 small steps that parents can take to develop their power as parents! We are now discussing one step each day in our LIFESMART groups.
I was excited to learn about the specialsaathi initiative because it reflects the elements that I see as the ones needed to bring about systemic change. It is encouraging to think that parents will not feel alone, lost, and confused because they will have access to a network of support. As I studied The PhD Project for many years, I wished that parents had a similar network. Specialsaathi has the potential to be that kind of network and I am looking forward to being a part of it.
My name is Shishir Kant Misra. I did my Mechanical Engineering from IIT Kharagpur in 1965. I now live in Kolkata. I had a reasonably successful carrier, which has taken me round the world (literally). Nearer to my retirement age I started my business on turbines. My daughter and we were living near to each other. My daughter was a doctor and married to a doctor . She had a daughter who was good in her studies. My son too having done his Engineering had settled in England. Life was moving on generally predictable lines. When my daughter had a second child, Roshnee, a daughter we were happy and ecstatic. I, having been brought up in Lucknow in a rather big joint family with 7/8 younger cousins, by nature am a child lover. Since birth I noticed there was something amiss with Roshnee. She was beautiful, happy child and yet something was there which I had not seen in any of my younger cousins or my own children nor even in my first granddaughter, Roshnee’s elder sister. I used to say that perhaps some wires in the brain were not joined yet, but will do so in future. My daughter, Roshnee’s mother, a doctor herself, too felt something different couldn’t put her finger on what it was. I used to take Roshnee (1 year old) out and walk with her on the pavement and talk to her. She knew words and recognised leaves, trees, crow and could speak too on her own. At about 15/16 months, she was taken to the zoo. There she saw Cranes, raised her arms overhead and said “crow itte bade bade.” (Crows are so so big). We did start observing some unexplained behaviours, her astonishing strength considering her age, her ability to walk for hours without getting tired or asking to be lifted up. And then some one told she had Autism.
Autism? What is that? Having gone round the world I hadn’t heard the word, her parents doctors themselves had not heard the word. And then by the time Roshnee was 2/2.5 years her Autism manifested itself. She gradually stopped speaking and in a month or so became non verbal. Anyway acceptance came thick and fast, one can say almost overnight. I set upon studying about Autism. That time (2002) no WA, no fb, not many ways to learn… However I took some far reaching decisions. 1. I had earned enough to take my wife and me through our old age. 2. Roshnee needed 24X7 care which was not possible for her parents to provide, they themselves being on the beginning of her their career. So from nuclear family we took reverse gear and became a joint family, with undeclared understanding that while my wife, still young in our early 60s, will take care of Roshnee 24X7, her parents will take care of their elder daughter and build up on their own careers. 3. I stopped my business and started learning more and more about Autism.
Since acceptance came thick and fast, almost overnight, we started wearing her Autism on our sleeves. Any one we met anywhereeven for couple of minutes and if Roshnee had been with me, I first pointed out that Roshnee had Autism. Almost always up I saw jaws dropping but then a small talk followed and at least that person became aware or at least knew that there was something like Autism. Gradually every one in our family, extended families knew that Roshnee had Autism or at least that she has some issues/problems. We never felt embarrassed by her odd looking behaviours like hand flapping, talking to self, making strange noises loudly. We took her to movies, she made noises, we were fine and I was more than surprised when during interval I tried to explain to those people sitting near us her issues, they were fine with it. I took her to park every morning and gradually all regular walkers became aware of her issues and so in the process entire huge park became her comfort zone. When she outpaced me and went ahead on the walking track, someone coming from the opposite direction would tell me that “she has gone that side”. Once she just walked out of the gate of the park and went looking for our car, a gentleman came to me telling me where she was standing. I learnt later that he had kept another walker there to ensure that she doesn’t run away here and there. Her all important milestones were generally in time including her menstruation cycles. Of course language is yet to develop properly. We observed her strengths, like interest in painting, and singing and gave her as much exposure as possible. She is no stage fright, rather loves any opportunity to hold the Mike and sing or participate in stage programs with all makeup in place. We never thought to “cure” her Autism. Rather our focus has been on making her independent in all ADLs. Today she doesn’t need any help in her day to day activities rather she is a big help in our daily activities including washing family laundry daily, taking them to terrace for hanging on clothesline and later bring them back, beside small things like Roshnee do this, bring me that etc. And she does all that like any other typical child and happily. Society and Autism family has given us much and now I am sharing my life’s journey and my experiences with newer parents via few Autism related group. I occasionally get calls from strangers, mostly mothers from as far as China, UK, US besides nearby Bangladesh or different cities of India. Many times mothers have been looking for the release of their pent up frustration and needed a shoulder to cry. They trusted a father figure like me, cried unhesitatingly for a long time and then felt a bit relaxed, confident that their anxiety will not be made fun of. Perhaps most rewarding moment had come about 10 years ago when a mother told me that she was persuaded from committing suicide after talking to me. Today she is a very happy mother. About 10 years or so back I and some of the younger parents started realising that very soon we all will be staring at the haunting question “What after us?” And there was no answer. Govt. was/is totally unconcerned since we parents don’t make a huge vote bank. And so idea of Assisted living for our children to be looked after for their entire life with dignity and safety after parents have moved on took shape. Some brilliant and daring young parents, even during peak of Corona continued to look for suitable land. We parents pooled our resources and purchased about 10Acre land near Shantiniketan and started Anand Ashram an assisted living facility for persons with Autism. We have included a very decent living accomodation for those parents who may like to live their retired life near but separately from their Child with Autism. Construction is progressing at a fast pace. The facility will have a special school, a vocational unit, a bakery, a gym, walking/jogging track, swimming pool. A resident will have 24X7 caregiver throughout his/her life.