Wednesday, December 19, 2018

In search of .. something Musical or Magical.

When we all hopped in the car for our visit to the Berklee College of Music we all were in a different mood. It was a gloomy rainy Saturday. Going for observation is not fun at all but we needed to do it so that Anand could see the program.
He wants to go to college to write EDM music, I am not even sure if something like this exists. But what do I know when it comes to English music and its courses anyway.
We drove an hour to be in the city, Anand and Ashish with their own music on. Ajey at the wheels listening to his own podcast. On the surface it looked like a wonderful scenario but we all were in our own worlds.
I am not sure what Anand was feeling, we had been talking about this visit for a couple of days so he knew. He had seen the programs on the Berklee site and agreed to visit but it was  a new place, new thing – the thought was enough to cause anxiety. on top of that program site specifically mentioned the Special education program and I was afraid he would just refuse. But he agreed.
I was on my own, struggling to keep emotions in check.  I couldn’t stop wondering how different it was this time. Ajey knows exactly what he wants but with Anand everything is just another experiment.
Once he decides against anything I cannot change his mind. No reason, no logic will work then. So practically I am learning to “keep my fingers crossed.”
Finally we were there, parked and ready for our tour. First thing was a private lesson, a violin. It wasn’t Anand’s instrument but Ajey thoroughly enjoyed it . Took him to his violin years. All Anand could think of was lunch at that time.
Thankfully the second session was for rock band  ensemble. The moment we walked in I felt the loud noise will be too much for him. But I was wrong, he really enjoyed the class.The teacher knew how to get kids involved, he could pull Anand into participating.3 students in the class, which works perfectly for our kids, Small size classroom. That observation went well but we couldn’t convince him for the next session. The lunch was more interesting. I did see him enjoy the band and I am hoping this is something he can give a try. At the same time I am terrified with the idea of traveling to Boston every weekend.
But that’s where friends play a role. While talking  a friend told me her son is doing the same program and takes the train. I think this is something we should look into, making him independent.
On the way back I was in a much better place. I felt relieved when he said he would like to join it. Time to fill the application and see how it goes.
Anand's love for music is a blessing for us. He could play by ears when he started playing Piano but but soon expectation of rehearsal at home came on the way and he just stopped. I wish I hadn't given up so easily but there is no place for ifs and buts, all we do it move on and find another way.

He refused to sit with other kids but the teacher was kind to come to him.

  And I was  happy that Ashish came, he has his own way of convincing Anand 

 and this was what followed a Boston Burger..Ajey exactly knew what his mother needed.

Wednesday, November 7, 2018

"Stay safe Mom" a good bye with words.

India trips are always exciting for me. A good break for boys and me both. I get to enjoy being daughter and sister and friend and a traveler. Mother and wife in me can take a little break. We all look forward to this. The trip begins the day I plan and book the ticket. Every year I go through the same emotions. Excited, happy, worried, stressed, hopeful and delighted.. all at once. But one thing never changes. The airport drive, Anand always comes to drop his mom, atleast he shows his emotions and tells me I will be missed. That doesn’t change the fact before the departure day arrives I am told that I shouldn’t come back from India, when he gets angry. The day arrives, I contemplate the stuff I am taking, weighing the suitcase thinking of the back up plan if I am not allowed to carry that much stuff. Every year I pledge I will travel light and here I am back again with the same dilemma. Ashish has learnt to not get involved in this discussion, he used to listen atleast now he just doesn’t entertain any of these conversations. But yes the struggle is real. And believe me it’s the same when I come back. The drive to airport is always long, atleast I feel it. It wasn’t any different last Friday when I left for my long awaited India trip.
I didn’t know what to do so had done the laundry, swept the floor, folded the clothes. When you don’t sleep the night before you have plenty of time. friends came and that changed the tone of the day with jokes, discussion and suggestions. 
We had an easy ride, not much of traffic, we had a cloudy and rainy day. Anand was on his headphones and I for a change didn’t have much to talk. The ride was quick so did was check in. we were little early to not much crowd and the gentleman was kind enough to take those heavy bags in without any fuss. By the time Ashish parked and came Anand and I were done with check in. I was relieved that everything I shopped and hoped to take is going to India. We sat for a bit, and it was time for security. When I said good bye I got a big hug, a real long one with the words – “Stay safe mom, I will miss you”. During the long flight this one thing I remembered this many times. It doesn’t change the fact he was still stubborn and refused a request for picture but in the end Its all turnout to be OK. My son will miss me and will wait for me, agreed to send whats app and will take care of his dad J

Written at the Boston Airport on Friday 11/02/2018

Thursday, October 25, 2018

Friends enrich your life in many ways.. Their kids are one of them.

A young bride in Pune meets husband’s first work friend, they not only worked together, they shared the love for music, books and other stuff and were house mates for short time. Life happened and they moved on to different countries and lost touch.
After couple of years now this time a young mother walks out of Boston airport and find the same friend waiting with husband to take them home. His home, where they get to meet the new wife who opens her home and heart for people she never knew.

Ajey was little shy of 2 yrs. and I clearly remember May 28th in 99, a hot day in Boston. A very tired kid after a long flight  but a very caring uncle held him lovingly. It was a beginning of a wonderful affectionate relationship between them. We all got along like we have known each other for years. D took care of our south Indian palate with love and care. Soon we had Anand and they had two beautiful girls. I was the first auntie to hold her. A year younger than Anand she made the world much brighter for us right after 9/11, she was just couple of days old. Holding her, spending time with her made me happier than anything else in the world at that time.

Time flew and we all moved to a new town, made new friends but the bond among us remained the same. My boys always had their love and attention. We live close by so met in town, school and if nothing else, coffee and Idlees were always a reason to drive to their home if love wasn’t enough.

Last weekend I went for their Golu (the festive display of dolls for festival celebration) . When I walked in, it was a reminder how few things sometimes just freeze in time. Memories and love are some of them. You just treasure them, doesn’t matter how long you haven’t met. I have seen those girls grow so it wasn’t them but the way they grew up is amazing, seeing them growing was a pleasure but witnessing them being what they are today is beyond words. every time I meet them I feel the same, wrapped in their love and affection. Deepa and KV have raised amazing girls.

The saree came from Surat, a dear friend who visited me while dropping her daughter off to college. I met her after 23 years but that didn’t matter. But it wasn’t her what this saree reminds me of, its everything that followed that visit. Her stay, out non stop talks over tea, her funny husband, above all her affectionate daughter who soon became part of my life, calls me her other mother. I think this saree is all about the girls in next generation.

Golu is an excuse but I love this season of celebration

Jaya Auntie with her girls.

a memory of a summer.

 Brinda in her element. Summer of 2006..

Ramya and Anand.. She was giving her toy to him.. Such a cute picture

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.