A victory like none other

Inclusion is meeting another where he or she is, inclusion is inviting you into my life as you teach me to celebrate differences, and inclusion is just letting the other know that you care.

These are such simple life lessons, and if one looks at it this way then the only world that exists is an empathetic, compassionate world where each one of us has a unique place, each one of us is empowered, and each one of us has access to all opportunities.

There is a world of children and their families for whom simple things that we have access to and can avail as multi-specialty services is a challenge. Something like a visit to the doctor for a checkup, taking a blood test, or getting a haircut/a shave done or a simple dental check up for a child with special needs and their families is an ordeal. These are challenges of an unfamiliar touch and sensation that has the potential to cause trauma. For a child who may not be able to verbalize or recognize a problem, the accompanying feelings of anxiety and frustration can be overwhelming. From finding a medical practitioner or a pathologist who understands the sensory needs of the child, from finding a hospital or a clinic which is going to understand why a 19 year old or more is screaming and bobbing around jumping, to what to prepare the child, are things that form a critical part of a week long planning in the bare minimum for the child and his/her family.

Learning to celebrate small successes is the goal for our young adults with autism and one such incident is what we witnessed today with Emil and his family. Emil had to get a blood test done for a few months now. The last that was done was quite a traumatic experience for him and needed four people to restrain him along with a pathologist who had to come to the home of the child.

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This time around as equal stake holders in Emil’s life we decided to extend the support needed. From preparing Emil and telling him that we were going for a blood test, to meeting with the diagnostic centre and giving them a brief , to speaking to Emil telling him that we just have to do this together, to carrying  his favorite Kailash Kher music and headphones, to keeping handy youtube videos he likes, we armed ourselves well.

‘We just need to trust the fact that our children rise to the occasion. Just revisit the intent and see how things manifest’

It was easier than we thought. Emil watched Asha prick his hand, held himself with utmost grace and cooperation and once the blood sample was taken got up and headed back with minimal prompts. What Emil demonstrated today is inclusion and acceptance, is enrolling another in our lives by meeting them with their skills and strengths.

Asha of New Wintrobe Diagnostic Centre, Jayanagar today has expanded the Universe of people in Emil’s life.

This is a victory like none other.

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 “Everyone can make a difference for someone. The people in my community offer support, help me shape my life the way I want it. “Jess Long (Jessica Long is a Russian-born United States Paralympics swimmer)

In our endeavour towards empowering our children, making the lives of their parents simpler, making places as accessible as possible and helping the world to become a more inclusive, more disability confident society, we feel that the special community of people have to join hands and tread this path with each other. A community of people who can join hands, share stories, offer solution, help each other or simply offer services at a cost, every little bit of this is needed for this community to lead a life of acceptance.

At Snehadhara, we have been piloting and building such a ecosystem for the children/adults in our direct care. The success of these programs have given us the strength and belief to take this to the next logical level, to create an online community that is tied together as a support system for each other.

A few thoughts on where we want to go at a larger scale:

  1. An online community where parents can ask questions, discuss issues, suggest solutions, brainstorm day to day problems and more. A community which Snehadhara will administer, run and pitch in, but will be entirely self-sustaining in the long run.
  2. Share the latest articles of interest to this community; dissect legal matters, discuss research studies around the world, look at technological advances, point to medical improvements and more.
  3. List services to help with day to day issues in order to make a difference to the families dealing with special needs. A barber willing to create a timeslot for a personalized haircut to a child with special needs, a nurse willing to deal with Autistic children for medical services, a doctor willing to offer special care without making a special child sit in line for hours, a carpenter willing to injury proof the house, a swimming coaching willing to teach swimming to a child with special needs; the list is endless and the possibilities are immense.
  4. Bring together various care providers to deliver care giving facilities for children and adults with special needs so that the parents can have little time and moments of their own. Also create a community space where parents can mutually barter their time with each other to build a support eco-system .

The ideas are evolving on what the platform can offer, so watch out for new updates and pitch in with ideas.

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You could be a doctor, para-medic, educator, therapist, art practitioner, hair stylist, technologist, researcher, lawyer or just about anyone with something to offer to this ecosystem. We invite you to lend a helping hand and be a part of the journey to fill the astronomical gap in basic services available for persons with disabilities.  Join us, each step is indeed the next big step, let’s take it together…

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