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 20^th, 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.

A week with 1000s of emotions.. life is a roller coaster.

A dear friend said she hit the rock bottom and then she had no option but to come up and be the  mom her son needed her to be. Autism changes everything in one’s life. It doesn’t matter where you child is on spectrum, the worries remain the same..”are we doing the right thing” That is the million dollar question.

I had seen so many of colors of life in these last 8 days that I needed to get it out of my system. Friday Sept 7^th was a big day for us, a court hearing for Anand’s guardianship. I knew very well that I won’t be able to sleep a night before decided to watch a movie.. There are millions of movies but I picked the best one, without knowing anything about it. I needed a movie just to keep my mind shut and I hit the jackpot. “Once Again” a movie about two totally different people in their 40s, and making a connection and giving life and each other a  second chance. Everything about that movie was just perfect. The story, acting, music, sets and above all the sarees. If you know me then you know my love affair with sarees. This movie just convinced me that I must go shopping when I go to India next. Movie again reminded me of how we react to emotions of our kids, their needs, their philosophy, and keep our desires on the back seat. Friday was no different, My kid took the front seat all the way..I still couldn’t get over the movie vibes, made me question so many things in my own life. Friday story here..

Saturday Saga needs another story, a mom launched her first book, supporting Autism Speaks but the star was the twin sister who created something for auction. At the age of 6 she already knew the meaning of giving back to community and supporting a cause.

That event made me stop and rethink so many things in my life. A sea of people who were there to support a cause, to celebrate the poetry, admire the art and some were there just for the friendship they had with the family. Sitting there I was questioning existence of many in my own life. Why do we connect, and when we do, do we connect whole heartedly? Do we connect with just the person or do we take them in our heart with everything around them? Is every person is like a package deal? If you are my friend, are you just my friend? Or you accept me as a mother to Anand. Do you really care what we are as a family? It’s so strange how someday can make you question everything about your relationships.

On the way to fundraiser I talked to a mom who is moving to Boston from California. We talked about our lives and kids. We never met, never talked before but that 45 minutes conversation didn't feel "new" even for a minute. 

I couldn’t do much the day after. I had a heavy heart without any explanation and then a friend drops by just to say hello. But it wasn’t just a hello for a simple tea, it was a quick trip to give me a beautiful saree. I wish I could ever tell her what she did to me that day. It wasn’t just the saree, it was the gesture. She got me a saree from her home town in India. We are not very close friend but she really earned a place in my life now with her thoughtfulness. All of sudden my heavy heart felt the warmth of love and friendship. A new saree in collection will flaunt some love, admiration and gratitude.

Same week Tuesday we went for Anand’s IEP meeting, a new school, new staff, new hope and wishes and dreams. It’s so overwhelming knowing so many things depend on you. I so hope he gets the best out of that program.

Another day brought another aspect of life.. faith and belief keep us going, Visited a friend for her celebartion of Ganesh pooja. I don't believe or practice religion but I do believe in friendship and value their beliefs. People were chanting prayers and at some point I felt how lucky they are if those words are meaningful to them, bring them some peace.

Next day the mailman brought a wonderful note and a box of sweets from a mom. These are the words which keep me going, the work I do hopefully touches so many lives and seeing this makes me feel worthwhile. Thank you, R, you made me believe in my mission all over again. Week ended with mom’s dinner, A quick Tea stop with a dear friend in the same town, a conversation on her dining table with a cup of tea was such a mood setter for the Moms dinner..Soon after a quick drive 23 of us sat around table on a Friday night talking about our lives to complete strangers but we all felt we have known each other forever. Most of them were meeting for the first time and yet they connected right away. We bid good bye knowing, we will meet soon again, we will be there for each other and if someone hits the rock bottom we will be there to pull them up.   

Can a smile hide everything going on inside? Right before the fundraiser began
 a darling friend caught me at the right time. nobody could imagine the tears before and after. All it needed was a soulful song sung by another friend at the event and I was no where close to what I am looking here..BUT while I was a mess another kind soul came and held my hand, just to let me feel I am not alone..Thank you .M. much appreciated.

PC. - SK at P's book launch.

 A tough day can be brighten up with a sunshine saree, thats exactly I did.. A gift from my sister in law held me together that Saturday morning. Anand's appointment in Newton..

 How words can help with the mood swing. I so needed to get out of that and this note  did just that. Rajini Karthik.. if I have a second thought I will think of you..These words will keep me going for sure.. 

and some Indian sweet do wonder too..

 A beautiful Chanderi will always remind me the thoughtful people could be..a simple gesture but how big the impact is.

Can a piece of paper define the responsibilities ?

I have been sitting on 3 topics for some time now and I cannot move on, hence writing anything else is very difficult, those topics are difficult to address and I am not able to find write words.

Started with Anand’s graduation, a sibling conversation and our struggle to keep things in right perspective. 

But my experience in Norfolk probate court sure needs to be addressed otherwise I will have another elephant in the room.

I didn’t think it was that overwhelming I handled it like a warrior mom but my emotional outburst in the court room surprised me and made me think I might not be the strongest woman I think I am. I am just an emotionally messy mom.

I couldn’t sleep night before, the usual me but it wasn’t tiredness which took over. We were there before court opens and the woman behind me in the line commented that it’s not usual busy that day, we both joked that it’s a beginning of a better Friday. The doors opened and I saw the familiar security faces, which made me feel better. I have been there few times and met some wonderful staff.

Walking in, getting paperwork done and routine checks till then I was OK, we walked in the court room and I started telling Ashish some stories just to shut my mind, the judge walked in and then it hit me. I couldn’t stop thinking about the heart-breaking reason we were there for. Our 18 yrs. old son was not able to take his decision and we were accepting that legally. The thought became the cruel reminder of our reality. I teared up and couldn’t bring the brave mom face up. We were second to be called. The way she handled the first case I could see she was a no-nonsense person. I walked in the area with Ashish. First time ever in courtroom in front of a judge, she saw the papers, asked few questions and just granted the guardianship. We were done in less than 10 minutes, just like that we took away the decision-making power from our son. I couldn’t stop thinking how unfair it was for him and us. How many times parents hand over that power to their kids and here we were doing the opposite. we got what we have been working on for few months and suddenly It struck me how overwhelming it was for me. I cried uncontrollably right outside the room. I don’t remember that happening before. A very public breakdown. I realized it was all inside me all along but didn’t have time to face it. Ashish being a wonderful partner didn’t say a single word and took me away and just held my hand. I know how much he hates tears, even that thought couldn’t stop my sobbing. In few minutes I was OK, went downstairs, thank the staff for helping me through this few months journey and waited for their coffee to be delivered. They explained what to be done next and in future. At that point, I realize how lucky I am to have wonderful people in my life. When I walked away from the courthouse I was in much better place knowing we did what is best for Anand. A friend texted back “you just made him more powerful” I think I will hold on to that line from now.. time to start a journey.. a better, stronger and more powerful, combined decision making..

a friend said - " we hang on tight to our kids, no matter what, with or without paper none of us will ever stop supporting our children" this picture is a reminder.. 

Sometimes its hard to agree to some of their decisions but we learnt to respect them.. Anand's choice of blue sneaker..when you go shopping with dad :)

 A friend sent this picture from her living room saying how Anand decided to spend his time in her home..Lucky to have these friends in my life who know Anand's need and wishes and respect them without judging. 

The choices our kids make.. Ajey with red hair.. at one point I wish I had control over that choice :) but soon I learnt to love that color and style. he did tell me before hand and thats what we want. a joint decision making, filled with love and what is best for them..for now and for future.. He kind of looked handsome .. i must admit