Namaskaar,
This is Ramesh Sipahi; a father of a child with autism. I am writing this blog as a way to seek a solution for the alarming question we all (the parents of child/children with autism) have in mind: "What about the life of our child/children with autism after we die?"
Alarming !! Ain't it?
It is good that the organization (ACN) is doing its best to spread awareness and advocating about autism to general public, getting autism registered in the constitution, conducting Parent-Child training to ease the either, & forming a nexus of parents & siblings as a support for each other. But we do realize that this ain't enough.
Well, I have tried to cover some answers to the question with further few questions, which might lead us to the way to solution. i.e Who, Why, How, Where & When. (The suggested solution here has been drafted only after thorough discussion with all of you (the parents) including ACN members. Only the words are mine.)
Well, I have tried to cover some answers to the question with further few questions, which might lead us to the way to solution. i.e Who, Why, How, Where & When. (The suggested solution here has been drafted only after thorough discussion with all of you (the parents) including ACN members. Only the words are mine.)
The prospective solution could be "Autism Friendly Colony": a colony where the families of child/children with autism live together along with a sanctuary/hostel for our children where they will have access to learning life skills, activities of daily life, and education. Keeping our children farther from ourselves is definitely heart wrenching, but it is the part of Tough Love that might enable our children to lead their life independently (by creating a circumstance when we will not be around). Following points have been explained based on this particular solution.
Who:
Who:
Nobody other than us (the parents/caretaker) understand our children better, their requirements, needs, and how they act, as every individual child behave differently and have different needs. Government support and subsidies, as of now, is not available. And even if it does in future, it may only cover till certain level of his/her education including other therapies. Our children still have a life to lead ahead of that.
Why:
Because our common motive is to establish an environment where our children; even after they grow up to be adults; can pursue a secure and an independent livelihood.
How:
Various ways can be sought to find out the solution to our problem. One way we have been discussing for months, is to establish an "Autism Friendly Community Living": A colony where the families of child/children with autism live together, as they all have a common motive to live for. A colonially secure environment indemnifies and assures physical security of our children. Besides physical security, we can together workout ways for their intellectual development including therapies and vocational training providing them the motive to live their life. The extent to these programs depends upon the depth of various challenges we come across.
Where:
It has been quite some time, parents of child/children with autism and ACN have been working together for the relocation of ACN office and establishment of "Autism Friendly Colony". We had together observed few lands appropriate to meet our requirements, and not exceeding the existing resource constraints. Despite the constraints, we continued looking for land in all directions (East, West, North, & South), but we haven't yet been able to come to a conclusion. The time is fleeting by without us noticing our growing age, our growing children, & hiking price of the land. Now that we have found suitable piece of land, the time has come for both the parents & the organization (ACN) to commit to this.
When:
The right time to execute this concept is now, as we all do realize that only about 10% of the life span of a person constitutes of childhood. The remaining life span is covered by teenage and adulthood where most of the problems seem to appear; which is why ACN has been advocating for an early intervention of treatment and therapies. Moreover, we too are aging by, resulting in the declining exuberance to execute something new. Let us not procrastinate further.
We have noticed that these recurring discussions and meetings have resulted in frustration & mental fatigue to all. Despite these frustrations, we have been working together to make it work. Kudos to all of you. At this point of time, I remember a quote "Rome was not built in a day" ☺
We have noticed that these recurring discussions and meetings have resulted in frustration & mental fatigue to all. Despite these frustrations, we have been working together to make it work. Kudos to all of you. At this point of time, I remember a quote "Rome was not built in a day" ☺
अन्त्यमा सबै अभिभावकहरुको लागी: थाक्नु त मरेरै थाक्नु, मर्ने हैन थाकेर |
Note: This blog post is intended for parents of child with autism and ACN. We are collecting intent of parents who are willing to pursue "Autism Friendly Colony". So, if you are willing to go for it, please fill the form below.
Accronym
ACN: Autism Care Nepal
ACN: Autism Care Nepal
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