I am Arpita Yadav, mother of Nirbhay, a 17 year-old young adult with a very rare neurometabolic disorder...along with many other complications and yet a very happy soul.
I am a Special Educator and the Director of an institute for specific learning disabilities known as Learning Aspirations. I like to call myself a learner as I learn each day from my son and from all the other children I meet in this journey called life. I am learning about life. I am learning about humanity. I am learning to unlearn…
I am also a founding member of a Parents Association known as Approach Autism Society ... which seeks answer to the question “WHAT AFTER US” ... Parents of children with Autism, Multiple Disabilities, Cerebral Palsy, Down Syndrome etc. came together in 2011 and decided to work for the cause.
I am a disability right activist too and constantly work for the inclusion and equality for our children...last year when 12 deaths happened in the Government run MR Home. We decided to take it up and do a sting operation to find out the situation of all the closed-door intervention centres and homes and gave our reports to Court. This resulted in that the government is now opening and invited the community to create a special schools and vocational training centre for the residents of Jamdoli.
I have been working in this field for the last 15 years.
FEW THINGS YOU NEED TO KNOW ABOUT OUR ORGANIZATION
Approach Autism Society was created in 2011. Parents of children with Autism and Multiple Disabilities came together with a common concern “WHAT AFTER US” ... what is the future ..and that was when we decided to create the parents self-help group.
Approach is working since then ..on various level ..as following--
- Training of mothers, Early intervention, Training of Students from Psychology field, helping children after school, pre-vocational ...creating TRUST CIRCLES by leaving children at another parent’s home on Sunday for an hour or so.
- In 2015 Approach took its next step ..We began our vocational set up, Angels@Work ...to ensure opportunity for our kids for getting ready for employment. Four young Special Adults are now employed in mainstream. We now have many more employers willing to have our young adults as employees.
- We started "AAHAAN GRAM "
What we are offering at AAHAAN GRAM and how parents can be part of it?
1) Parents can buy property. Be a member. Start living there
2) The builder will complete house as per the agreement with you and society. Universal design will be followed.
We are working on life span approach.
We wish to provide for a sensory park, gym, swimming pool and for recreation sports, music, dance, art n craft.
What is there for parents of under 14?
- After school support
- Behavior modification therapy
- Skill training
- Crèche and Day care
- Need based Hostel facility.
What is there for 14 and above?
- Pre-vocational and vocational training
- Soft skill training
- Readiness for employment
- Getting employment after achieving pre-requisites
- Readiness for independent living
- Creating a pool of care givers
- Medical facility and Nursing care.
What will happen when a parent expires?
- a) Unconditional Emotional support
- b) Facilitate day to day needs catering, nursing, housekeeping, and geriatric care
- c) Umbrella facility for banking, bill payment, and daily errands
- d) Dependent spouse can work with the organization and get paid according to the ability
What will happen when both parents are not there anymore?
- a) Child will be adopted by the society
- b) Special needs will be met
- c) Cost of life will be decided by parents and arranged by parents and shared with society ...
- d) Property will be disbursed as per their will.
- e) Parents can choose foster parents either siblings or members within the society and mention it in their will
- f) There will be a clause to monitor the number of neuro typical people as heirs
- g) we are very clear to Create a happy place and we want to provide an opportunity for our children to experience companionship/ marriage / dating etc...
- h) ready-ness for the companionship and marriage ..
- g) support their family/ offspring if any
Who will guard the interest of the orphaned special needs child?
An independent penal will review the condition of the child every 3 months and generate report....
Following are the skills/ sheltered workshops---
Catering, Baking, Jewellery making, Organic farming, Fabric designing, Companion dog breeding, farming, Spice making unit, handicrafts (bags, file folders, diaries), Electronic / solar power assembling unit, Carpet weaving unit, Carpentry, Blue pottery etc.
Location of the project...
Manglam Grand , Ajmer highway
Opposite Pink pearl Resort
Parents are buying their plots and flats as per their choice and need. This project has expansion ability for 100 families. We are going to live within community with other neurotypical population ...
WHAT INSPIRES ME TO DO THE WORK I DO?
I had lost my first child and then had my son Nirbhay with the rarest of rare condition. God has given me message clearly that I have been chosen to work in this field.
I have learnt a lot from my son. I have learnt to dream and dream big, I have learnt to take risk, I have learnt to have faith and be consistent in my approach ... I have learnt to never give up... I have learnt to celebrate smallest of success... I have learnt to accept ...and that’s what drives me to do what I do …
I get motivated when I see children and parents smile....
My son gave me purpose to my life and all the other children who I work with gives me a direction to my dreams.
ABOUT MY FAMILY ..
Till Dec 2016 I was a single Mom … nurturing my son facing all the challenges with the support of friends ... On 12 Dec 2016, I tied the knot with Mr S K Awasthi. He is in the Army and currently in Banglore. I am now the mother of three children including my son ...
WHAT ARE OUR CHALLENGES AS AN ORGANIZATION?
To raise funds is the biggest challenge and to get passionate trained human resources is the other.
WHAT IS MY FAVOURITE MEMORY RELATED TO MY WORK?
To choose one is very difficult ... I would like to share few …
When my student with intellectual impairment won gold, silver, bronze in roller skating in special Olympics, I was thrilled.
When another student with ASD won national championship in roller skating and swimming, it was a memorable moment.
When 96 of my students portrayed a dance-drama based on Animal Farm, with 6 scene changes for 45 minutes, without any adult support on stage and without any voice over they created a history.
When one of my students with spinal muscular atrophy wrote his first book of poetry… poetry of love, god and life ...and sent me the copy with his signature, it was a memorable moment.
When my students with learning disabilities go back to joining inclusive schools and do well it fills me with confidence ...
IN CONCLUSION… What do I want to say to other special parents ...
Have faith in your child. Your child is the purest soul and you are the chosen one...disability is just a small part of your child not the whole of your child ...live your life and enjoy every moment with him/her… Love yourself, love your child ...unconditionally ...you are the best parent...
Get in touch with us, if you want to know more about our project. Please share your thoughts in the comment section of the blog.