Parents are the Change Agents - Thank you MFOFC

As parents, we are everything for our kids, a friend of mine says –job description- cook, teacher, driver, cleaner, launder, planner, organizer, care taker, personal assistant, nurse and many more. I am sure you can add some more to that. Last 3 weekends I learnt a new term- we are “change agent” for our kids.

I, with 18 other parents took part in MFOCF’s family leadership series (http://www.mfofc.org). When I applied, and got selected for I was not sure what will this entailed for. All these conferences bring a new perspective in life and teach something new and widen our world. I knew we will learn about laws and process. What I didn’t know how it will change my philosophy.

Growing up in India, the corrupt political system turned many of us away from any civic duty, we were turned off by the ugliness of the system and decided to not do anything with it and eventually moved out from India. Decision to move out of our home wasn’t easy and we had to factor in many things but corrupt political system and harder life due to that was a major reason for many of us.

I got to know about this series and decided to take part in it. I didn’t know much about it but the desire to make things better for our kids prevailed and I signed up for the program.

The first session is always exciting and nerve-racking at the same time. Meeting new parents, listening to their stories and struggle and then seeing their determination- it’s all very heartwarming and inspiring.

The first weekend made me realize this series was something I had never done before. It was all about getting our voice heard on a bigger platform. It was more than IEP or inclusion or school system, It was all about our and our kid’s vision for their future. We learnt that our politicians need to hear from us so they can make informed decisions. Passing a law is always not all about doing the right thing, It could be about our opinion and getting our voice heard.

I realized I didn’t know so many of these steps. Never thought the leaders will be so accessible. By the end of series, the parents who are the change agent came out as a force to reckon with. I learnt so much more about myself through other’s. Many of the activities made us aware of our strengths and weaknesses, gave us tools to deal with our struggles and disappointments, above all we all became part of a tribe. Our special tribe. we went to state house the last day to be part of something we never imagined. We tool a vow to never give up and keep working for a better future. Not only for our kids but many more who need their voices heard.

Wearing blue is the first step towards acceptance.

Please know that I am overwhelmed and thankful. I have been thinking over it whole day today, what Autism means for us, for you and for everyone else who is touched by it. Each day is a reminder how far we have come and how custom made this journey is for all of us.
The color blue specially in April represents Autism. Autism speaks not only brought this condition on world stage it gave Autism a color - color BLUE.
Personally I am not a fan of “Autism Speaks” they have done a lot, no doubt about that, but at the same time I don’t agree to everything they portray about Autism. But one thing I am thankful for is – Blue for Autism Awareness and acceptance. I very well know my colorful saree would have gone unnoticed but a blue Saree in April (now any time for that matter. Thank you #100SareePact) reminds everyone of Anand and his mom.
 There are millions of horrifying stories of ignorant and mean people being rude with Autistic people, hurting them, teasing and bullying them. Just recently a mother wrote about her Disney trip, how a dad watched and did not say anything when her son was being bullied and mimicked in the line. A son was hit by classroom aid, locked in the room, countless stories of abuse. But for me today is the day of gratitude.
Couple of days ago I wrote about Autism Awareness and Acceptance day and asked people to wear Blue on April 2^nd. Today my inbox, text msgs, emails, Facebook and what’s app were filled with such pictures and comments. Many participated in Runs and walks. Today I received many hugs for Anand and many of my friend came to me showing their Blue for Anand and many like him. Blue in solidarity some one said.
I want to thank each one of you to share our journey, hope, aches and celebrate our victory with us.
My friends please know your wearing blue today is the first step in making the world a better place, not only for Anand but for every 1 in 68 children and 1 in 42 boys. 

Today I request you to take care of your tribe, yourself and people around you. Be kind to people who need your empathy, teach your children to be gentle and above all lets celebrate the goodness around us.

Autism Housing Pathway fundraiser - March 18th, 2017

We usually hear the world is very small. BUT When it comes to special needs world is huge, we can get lost. Looking for resources, help and education is a task often falls on parents’ shoulder. And all of us struggle to get and do more for our children.

I always feel grateful and admire to the mothers who have done this way longer and more effectively than me. For me they are the pioneer, I look up to them for many things. They are the ones who inspire me to give back to the special need community more, help new families to navigate this world. 

I still remember my dark days (they are not over yet but now they are very few and far between) when things seemed impossible, not knowing what future holds, was the most frightening thing, nothing was working but this group of amazing moms helped me see through the dark times.

Cathy and Cheryl are one of those moms, who inspired, helped many and continue to do so. Their Autism housing pathway helps finding the right housing solution. It was their annual fundraiser and Dancing with the celebrity was the theme.

5 of the respected community member were paired with MIT’s ballroom dancing team. Cheryl’s husband was one of them and I couldn’t let go a chance watching Alex dance :)

The whole show was just full of awesomeness, One of the dancer was a gorgeous police officer of that town. Another one was a brilliant musician with special needs. one was a fighter dad, a director for a non profit and another one assistant principal.

Every year MIT’s ballroom dancing team teaches them and dance with them.

That brilliant MIT team does this year after year. The internationally recognized judges give their time at no cost. I say world is just full of awesomeness, isn't it?

I was in audience watching in awe, not just the dance, the whole energy behind this fundraiser. It wasn’t a crowd of wealthy but the crowd of rich people, people with empathy and compassion. They might not be the millionaire but surely they knew how ot help and support the community of their own.

The organizers, the audience, the MIT team, the artist who displayed their arts everyone was there to fulfill the dream of many of mothers like me – to have a better world for our kids, who only need respect and compassion. Rest will fall into its place on its own.

That missing piece.

I saw the movie Lion last night. The story, the actors, the performance and art direction.. everything was just beyond words.

The movie was all about not knowing what is missing in you and once you realize the quest to find that missing piece.

I thought how close it is to our children. I often think of Anand’s own perception of himself. What does he think, what does he feel or what will make a difference in his life. Does he know what is he missing ? Many a time I hear him talk about people around him, how he misses that social interaction, movies, bike riding all over the town with boys, fun, party or dinner out, girls, not having friends to hangout often. But these are obvious “missing” in his life, he knows these. But what about the not known “missings”? He doesn’t know them yet but will he realize that? “You don’t know what you don’t know” is my favorite line but we keep working to know more, learn more. I cannot imagine my life without this quest but imagining his life without this question is very comfortable for him and me for now.

The movie pulls a string in your mind somewhere and you question everything around you. What is real and what is not. Should we just be happy with what we have or look for those missing dots in life at the risk of losing everything?

A question to ponder upon?

The Desi Village..

The four mother in that quiet restaurant met like they have known each other forever. When I walked in, the server asked me how many and I had no idea what to answer him. I just said I think we are 5, meeting for lunch. He agreed to give me the window corner seat and I sat there wondering what to expect in next hour. 
I got involved with a whatsApp group of Indian mothers of special need kids . We have been thinking about meeting for some time. This was a first time meet for me with this group, When I ignited this meeting many agreed but we had many cancellation that morning so norm in unpredictable special need world. Finally 3 more mothers walked in. I knew one of them but soon enough all of us became friends like never before. No-one in that restaurant could imagine that we were meeting for the first time. Soon we forgot that we were new to each other. All we knew that we are in this together. We shared our dream, we talked about our worries and frustration, felt thankful to have people and support system in our life, expressed the gratitude and at the same time talked about our lows and highs, explained laws and services to each other, showed our family pictures and felt the connection right away. In that short period we held each others hand and uplifted the spirit, shared the knowledge and felt connected.
I drove back home thinking these women get me more than many of my fiends and family. They understand the emotions behind those frowns or teary eyes without even saying anything. This brings up a very valid question-what brings human beings together? sometimes we feel strangers with people we have known all our lives. and at the same time we connect with total stranger, hand over our life story, share our feelings, emotions, dreams, fears with them.
Lets keep talking ladies and we will find joy, happiness, comfort and hope with each other. Amen to that.

Happy birthday to the best mother..

As I try to work through my calendar and figure out some dates for some conference, I was wondering how important it is to be educated or to know. to know things about our kids, for our kids and through our kids. There is so much to learn but never enough. The link to conference connected me to some other informations, which I never knew existed.

The discussion in one of mom’s group brings a new point every time I log in to that group. At the same time I wonder how many of moms don’t even know about these. There are times I wonder if I should learn more, should I work harder, should I get out more often, read more.. the answer is absolutely but where is the answer, when to stop or where else to look for. Every time I meet another special mother I have a piece of advice to give as well to learn something new from her.
There is an overwhelming feeling I get and it keeps me awake at nights. “The what ifs”, “I wish I had known”, “what can I do more””what will happen” are to name few. The worry never leaves my side, always in the back of my mind no matter what I do.
I try my best to learn more, do more but there is a time when I just give up and shut down. I take a break and some time I get back to that task but some times I just move on and deal with something new I got my hands on.
Some of the mothers I meet are incredibly smart and devoted but at the same time I meet some of mothers who need some rude awakening.
Oh my my, how I wish we had a manual.
There are times when I feel its not only us special moms who deal with it, its all for all the mothers around. Its never easy, isn’t it? As I wish my mother a great birthday today I remember her saying a mother;s job is never finished. There is a time you worry about kids, then time comes when you worry about their kids too. Happy birthday Amma, I know atleast there is one place I could still be a kid and leave all my worries on your shoulder.

New Year and resolutions..

Vacation weeks can be tough for anyone. no structure doesn’t do any good to any of us, leave aside our kids.
This holiday season we decided to take a vacation without kids, Just us. Ajey was home and suggested he would be home with Anand and two of us can go away for few days. such a wonderful start to the new year.
 The flights were booked and then I told Anand, as expected it was all fire, It didn’t go well with him and the first thing was “go alone why dad”. Well, this was the golden opportunity for me to teach him something, one more step towards independence.
We had real messy days, I was afraid how will we survive the vacation week but after 5 days things fell into place, He agreed to give it a try and the training began, his and mine. we both learnt to take one thing at a time. We were gone for 5 days, 4 school mornings. I didn’t want Ajey to do everything, that meant from morning to evening Anand’s task had to be Broken-down. We started with packing lunch and snacks. We couldn’t do the alarm in vacation week but started doing lunches. he is an excellent learner so it was quick and easy for him.
When school started on Jan 3rd, we did alarm and that day onwards he woke up on his own, packed his lunch and snack, brushed, showered, had his breakfast and left for school. Three days went without any glitch, I could see how proud he was but more than that his mother was on top of the world. We were leaving Friday, we were to leave by 6 and he was up and was getting ready for school.
That morning to airport I wasn’t excited only for my first (without kids vacation) with Ashish, I was excited and proud of my son. Who was smarter and more independent than last year.
I was away for five days. Few of phone calls and face times I heard he missed us, he was willing to come on face time that itself was a big thing for me.
I didn’t think I could enjoy the vacation but surprisingly I was better once I heard from Ajey that very first day how things were calm and good at home. The boys survived the snow storm, cooked and ate and had great time, so did their mom and dad in Vegas.
I don’t need a resolution for new year just remember to keep my calm and things will be alright.

what is a celebration?

What does a celebration or a holiday or a festival mean? well, we all have our own meaning and purpose to celebrate something, in my home this picture defined the holiday.

Everyone in Autism world knows what holiday and vacations are for us. Family time or celebration or festivities, no, not much of that. For us it means unstructured life and that leads to lot of heartache and meltdowns. And yes sometimes the celebration, family time and happiness comes around.

So this was vacation week and we all were home, No trip or big plans. We thought we will take one day at a time. We decided to introduced cooking and it didn’t go very well in the beginning but later it was much better. We worked on Homework and missing assignments and that absolutely was a disaster. But that’s how “introducing” and “anything new” works in our life. Offcourse dinner out at a favorite restaurant works well as a bribe.

So it was a week of having all the boys home. Too many hours spent together and it leads to meltdowns, not only for Anand, for all of us in different forms.

Ajey is home and I feel for him. The age difference is not 3 yrs, it never was but now it is way beyond years. My heart aches for both of my boys. They could have the best years of their lives together and have fun but it is not possible anymore. Seeing him struggle is one my biggest failure as a mother. I just don’t know how to console that kid. But anyway, after we had been through a storm we talked. we talked how to find, enjoy and celebrate those very few connected dots. The next morning, I saw this, brothers playing chess and my heart swelled with happiness and pride. Anand beat Ajey in all the games.

For me this picture defines what new year means to us. It was the morning of Dec 31^st. I would like to remember the last day of the year. Just like that, life made so much sense.

Wish you all a very happy New Year. I hope it brings a new morning and changes many things in your life.

Crystal Ball.. every mother wants one.

A friend talked about mother's dilemma and  decision to let our kids have their own wings.

This conversation made me write today. We have been talking how it is difficult to let go of our dreams and wishes for our kids. Some times we forget those are OURS not theirs. They have their own dream and wishes.

The conversation took me back 22 years. When as a young 23 yrs old girl I questioned the system, rituals, customs and even my parent's thinking. I couldn't disregard the values but sure questioned their validity and way of thinking. I questioned the way a girl has to get married, how the choice of choosing a partner some times felt like a business decision. I so believed in love and respect not caste, socio economic status, education or money. I have come a long way and can see the value in every parents's dilemma but at the same time remember what it was to be 23, in love and ready to disregard age old traditions. I am so glad that I did that, That one event changed so many lives.

I argued, cribbed and fought over many traditions but in the end we found a middle ground and agreed upon. I am a mother now and I see the same struggle in my own life with my sons. It is such a difficult path and no-one can suggest you anything. Parenting is just made for you and you have to learn to deal with consequences of decisions you took.

Going through the discussion of a daughters marriage what parents imagine and think, no-one else can feel. We wish the best for our kids. but do we really know what is the best for them? We come from two different generations and yes the "best" changes every five years I think. I surely know for fact what was best or important for me 20 years ago that doesn't hold any value anymore. How can we expect our kids who are a world apart from us to expect that best? But here we are, as grown ups we have seen so many ups and downs in life and we learn from them. We want to save our children from that hardship what we went through, want to give them the "ready-made" solution we learned with difficulties. We want them to get the outcome of our experience and knowledge. We so wish we knew 20 years ago the stuff we know now. We would have made different choices and would have led different life, but those decision and hardship made us what we are today.

Thats what I told my friend, we just need to let go, let our kids grow and just trust our parenting skills and keep our fingers crossed and hope that things will turnout the best in the end. We just need to stand next to them, let them know we love them and no matter we will value and appreciate their way of life. what if they are not living our dream they need to live their own.
For my story I know there are some things worth fighting for. I know for sure that we need to endure some pain so get something beautiful like this.

Parenting.. always a "what if"

Watching “Dangal” today was an experience. It is a very well made movie with everything perfect. It defines feminism to another level. My non-Indian friends may not understand but any sports for women was never a choice (even now that is not every parent’s dream for their daughters), wrestling .. absolutely no no. On top of that a small town in North India. Everything about this is beyond dream for women.
I was spell bound, not just because of story or acting. More than that it was so close to home. For me it is not only about the real life story of Phogat sisters, It is about the definition of parenting. The father in the movie raised four daughters and made them believe in themselves, how wonderful is that.
We are four sisters and I am the oldest one and have seen everything very closely they have shown in the movie. The social pressure of having a son, the disappointment of not having one, not able to fulfill the dream of our own, the expectation or no expectation from daughters. How their courage troubles people all around, how everyone is just watching for just that ONE mistake, how everyone in society expects girls to get married and have kids, how the girls are told to do whatever they want in their husband’s home not at father’s. How father and mother are not the one to decide, the whole neighborhood and relatives have a say in every girl’s life. How no one cares to help the girls dream big, beyond measures and let them do whatever they want to do in their parents’ home. No one understands (even women in the family) that a girl is never allowed to do whatever she wants in her husband’s home, she should have the right to live her life in her parent’s home. I can go on. Things turned out differently for us, all four of us. But it could be better in many ways. I wish every daughter's parents could get a manual to raise independent and strong daughters.
Don’t get me wrong, parenting is hard either boys or girls, but daughters need to be treated differently because in future they will raise  sons. How a woman is raised decides what kind of mother she would be.
I have two boys and I think I treat them differently because I don’t want them to a biased father. I make them do chores around the house because I want them to NOT only believe in equality but live it. I want them to be a father, a partner who believe in treating women better.
It’s all about the choices we make as parent. If we want a better world we need to be better parent for our daughters. We need to believe in them, we need to give them a safer home where they can dream beyond the sky, we need to give them tool to make their dream a reality.
Its interesting how a movie can open old wounds, heal some and make us think differently.

The Blue team..

For any Special family the IEP meetings could be something to look forward to or it could mean a nightmare.. and If your kid is 16, these meeting in many ways define his adulthood or atleast shape his future in some forms. We were very fortunate to get the best team always. but IEP meetings are always a reminder how far Anand has come and how not so easy his world is.   

Last week was tough on many of us. It has been a very challenging week in many ways for all of us. we sure are re-examining our belief system and trying to get a sense of things happening around us. in this uncertain time people around you make or break your world. Today was one of those days when a mother, a woman in me got her strength back. World is a better place, we cannot lose our hope, things will be alright.

So this morning Ashish and I walked in to school with knots in my stomach. I always knew Anand is in good hands. The team is wonderful and they would do the best they can but the mother in me..what to do with her, this day is just hard, very hard.. reminds me in some way how the world is different for my boy. Just to keep my mind in right place I wore Saree, needed something to cheer me up. off course it has to be a blue one. This story at that time was no where in my mind.

Anand is a junior, this is our third year with school for him, Ajey was in Franklin High for two years and we didn’t have to go to school often for him. I bet his teachers dint know his mother at all. But with Anand its a different story. His mother is in school all the time :)

His subject teachers change every year but some of the members in the team had been with us since 9th grade. so few of them know us very well by now. 

As I walked in and met his first teacher in the office and we went to the meeting room. I notice some of the teachers in the blue but nothing more than that. Thought some fundraiser going on in school.

 I think I was too busy collecting compliments for my saree. What’s new right? Meeting progressed and for the first time in all these years we heard Anand speak. with more than 10+ people in the room, they made him feel comfortable enough to show us his world through his eyes. I just couldn’t be any prouder, happier and grateful. After Anand left we all talked about his needs, difficulties, strength and what to do next. They were a TEAM, a strong team,  who knew my son well and were willing to make him successful and his life better.

Finally I heard that they wore blue for me, they read my blog and decided to show up in blue. That moment.. I just didn’t cry but my heart melt and they just bought a mother over for nothing. I wish i could show them how grateful I am to have them in my life. Those hugs will assure me always that Anand is well taken care of.

I guess that was the moment I thought the world is still a better place, as long as we have wonderful teachers our kids are in great place. They will turn out alright.

A day with Future Educators in Boston University - An Indian Mother and Special Education world.

A conversation, few emails and then a phone call that's how it began.
When I was asked if I would like to share my personal journey with students in Boston University, I had no reason to think other wise. I wasn’t sure if I could meet their expectation but I was willing to share my world with our future educators.

I volunteered with Federation of children with special need in summer, the outreach specialist asked me if I would like to part of an outreach program in Boston university. I agreed to join the fall session.
Prof R was kind enough to accommodate my convenient dates. He asked me to speak whatever I want. I think he didn’t know with this open option I can speak forever  :) 

Once I knew I didn’t have to speak on a specific topic I decided to share my journey, my thought process, my struggle, my victories, my worries and my hope.

I had my notes and I knew what i wanted to speak but when i walked in that room, the introduction from Prof R left me speechless. He had read my blogs and had wonderful things to say about me. I decided to ditch my notes and speak from my heart. I just thought I am speaking to the future of our children and they need to believe in me then only my story can inspire them.

I began my talk thanking them and telling them how strongly I believe that only scientist and teachers can make the world a better place. How their passion becomes hope for many of the mothers like me. How we want to thank them for choosing this profession.

Little did I know that I could speak for more than 30 minutes about Anand, Ajey, Ashish and me, about our lives and our hopes. 

I talked about what I did and what I didn’t, what bothered me then and also what keeps me awake now. How parents need to find their hope, their support system, how they need to ask for help and lend hands when some one else needs it.

I talked about my relationship with Anand's teachers, some of my innovative (my word) but crazy ideas to be in regular touch with teachers. How I feel that his teachers made so much difference in our lives, how their positive attitudes made our life much easier. How I feel valued and welcomed in those terrifying IEP meetings. How i believe in their goodness.

Then The talk turned to #100SareePact. How one blue saree made a big change in so many lives, How my Autism stories reached beyond ocean and people found comfort and similarity in theirs lives and mine . They thought my stories gave them voice, strength and hope. How #100SareePact changed the meaning of Saree for me. How the color Blue became the color of support among SareePacter.

After my rambling for 35 minutes or so, the question and answer session made me realize that I was facing a crowd who wanted to follow their passion. Their questions crossed the boundaries of country, race, age, gender or any other limits. Those future educators for sure made me proud and happy. one of them was from India and asked me about my thought of disability culture in India. I wish I had some rosy picture of hope for her but I urged her to use her education to change the lives of the kids in India. 

I am very happy, proud and humbled that I could be part of their learning process, I hope I could inspire them in some way. I feel nice that at least I could show them a glimpse of my world. If they remember just one line, one message from my talk then my day is made. Today I write this story thanking all of my Saree Pact sisters, you empower me, educate and strengthen me and make me humble.
Thank you

First day (evening) of school

Every year the end of Aug brings excitement in many houses.. Beginning of the school, school supply shopping , the new classmates, new teachers and new friends.
The stores are filled with parents and kids with the list.
Our life started like this, we always had a busy summer.  My kids have a crazy mother who doesn't believe in quiet vacation. She dragged them out and force them for road trips and short vacations. Then the "back to school " shopping and waiting for the teacher assignment letter, new back pack, lunchbox and supply and clothes shopping. And for years I could manage the first day of school pictures.
But things changed along the way. From last three years the excitement was replaced with anxiety.
I think it was always there but became very obvious in last couple of years.The crowd and 100s of choices with supply made the school shopping a disaster. And from last two year the first day pictures are just a no no.
I was a regular mom who did all that usual stuff for my kids but Autism re-defined my usual in a different way. We shop early or very late in season, mostly online. I choose few options and he selects from that. This year I bought a backpack on my own which I thought would be better. Autism or not the boys are their dad's son who hates shopping so many a times I am the decision maker.
They just have no choice with clothes. I had to put my foot down that I will not buy and return stuff and Ananad knows that, so that one shopping we do together. we choose to do it after school starts  when everyone is done with theirs.
Junior year for Anand and he couldn't sleep well night before. I offered if I could come till bus stop and it was a "NO" so " back pose" picture wasn't an option either.
He came back happy and was relaxing so I just took this before he noticed the phone. Folks here it is - the first day of junior year picture.. Without a happy smile, without much fan fair but I am very pleased with a picture where my boy is just what he is..