Saturday, September 22, 2018

Time to Change What is not Working..

“Would you want to change something in the current law.” A question was asked in the class. Actually that was the whole idea behind the discussion we were all there for.
The heads in that room shook and everyone had something to add, a story to share, a hope for their kids and a sigh of disappointment but above all determination to do something, a wish to bring a change not only for their own kid but for everyone around them.

On Sept 20th, Federation of children with special needs (FCSN) and Boston university hosted Parent Leadership- Individuals with Disabilities Education Act.” After two hours of drive finally I reached and the first question was asked why wasn’t I was in my saree. I was all shocked with the reaction and question both : ) but happy too. Atleast my saree was being recognized.
We were 32 participants and everyone brought some passion and ideas. 3 sub groups and it was heartbreaking to hear those stories. Moms who fight, moms who cook, clean and drive and at the same times they are advocates for their children. Some of them are voice for their kids. They shared the vision with teary eyes and voiced their concern about current status of rules and laws. Sitting there I wondered what happens in the rest of country. We heard time to time that Massachusetts is the best place for kids with special needs. And I wondered how difficult is this road for moms all over the world and couldn’t stop thinking of mms in India.
But this post shouldn’t be about emotional aspect of Autism it should be about the laws for our kids. Because that’s what the focus was. The parents come together analyzing what is working and what needs to be changed. In overall discussion, the biggest take away was- laws just exist it’s implementation is the key and there is no oversight if school districts are following the law. The concerning part is many on the team don’t even know they are not following what they should, also they don’t even care if they know. And the civil rights of our children are being trashed every day. Physical disability is still having its recognition in society but mental health is still being ignored.
1975 was the first time disability was addressed in regards to education, it became effective in 1977 ( PL 94-142) It is called IDEA  (The Individuals with Disabilities Education Act) today. It has come a long way since then. The shocking part is federal government is supposed to fund 40% of all special education expense but it never happened. This is the time to work on that. Many a times we hear from parents that “those special need kids are taking away the resources” in reality the special education funding is totally separated and it doesn’t come from any other pocket of budget. If the regular families know this facts I hope they will be more sympathetic to kids who are not so fortunate.
 Our kids should get what they need and deserved. “A right to appropriate education”
whole day we talked about our stories, our wishes and willingness to do whatever it take to something better for our children. But at the same time, I realize it takes a toll on all of us. Everyone echoed the feeling of emotional isolation unanimously. Please help each other, find a friend and be a friend..

 While some of warrior were still working on our draft some of us decided to pose for camera..Thank you Federations and BU for bringing like-minded people together.


 Professor Zack is a sibling and the other graduate students have the story of their own sharing household and life with people with disability. Our focus group was led by one such sister.
 Do you see  moms who are - a chef, driver, cleaner, therapist, and above all champion for their kids. 

  and a dad..

Many feels they could do better but at the same time we all know we would go to any extent for our kids. Driving in Boston traffic is nothing, a mom in me was on the road for 4 hours, would do it again even if I don’t enjoy the driving.

Raquel Quezada who really is a voice.. tune in to her radio show.

 And it all ended this way.. calm and wonderful, View from Federation parking lot.