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Sunday, April 2, 2017

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 2nd. 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.



Tuesday, March 28, 2017

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.




Friday, March 3, 2017

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?

Friday, January 27, 2017

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.

Thursday, January 19, 2017

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.

Saturday, January 14, 2017

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.

Tuesday, January 3, 2017

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 31st. 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.

Tuesday, December 27, 2016

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.

Sunday, December 25, 2016

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.

Thursday, November 17, 2016

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.


Saturday, October 15, 2016

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

Wednesday, August 31, 2016

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..

Monday, July 25, 2016

A different family outing !!

A day out in Boston..
Summer weekends are not at all "the family outing, beach, park or picnic or BBQ" for our special family but we try to make the best out of everything we can.
So I take boys to City for fun and food.I have been doing it for a few years and it's getting better and better.
Ajey has always been my food companion. Anand goes for his reasons; sometime it’s the traffic lights and various walk signs around the city or some food. With Anand it is a stricter choice of food which makes it difficult to explore different cuisines. So some days it might be just Panera or some mexican food Anand enjoys but some weekends its just the foodie mom and son time.
Ajey is interning in Drapers lab in Cambridge but doesn’t get time to hang out there so we thought this summer we will explore different part of city. whenever we can.

We started our day with Harvard square. Ajey chose the café Pamplona, On the way to Cambridge he told me that the mother in "Namesake" spent lot of her time in that cafe.
The fun part was not only the coffee but the two girls Isabella and Simone who work there. With the fabulous sandwich and coffee the conversation turned into analysis of the customers and immigrants life and lifestyle in Cambridge, hard-working people in MIT and Harvard. We heard interesting stories about all aspects of human life.
I shared my experience as an immigrant young mother and as a mother of a grown son.
How things change in the last 18 years for me and how I think differently now, how this country has changed me.
The next stop was Kendall Square. Dead over the weekend. But could imagine how busy it would have been just 24 hours ago.
We headed to Seaport for our last stop. A fabulous dinner was in our mind. A friend suggested the place and it was true to our expectation. 
We asked to be seated next to Kitchen I could see the chef in action, got to talk to two of them
That was one best part of the evening
I have to be honest it was one the most expensive meal we had but the whole experience made it worth the money.
The day was great but the most striking part was the conversations we had
I don't think we talk about those many things in one day. These one-on-one trips with my man give me the opportunity to see the world differently. What makes their world young and vibrant.
My trip with Anand and Ajey brings a whole different side of world, their world.
A new world, a new thinking and a fresh new perspective on same old usual stuff.

Friday, April 1, 2016

April - and Autism Acceptance

#100sareePact

#Celebration

#WearBlueonApril2

#AutismAcceptance

#MomlovesAnand


Dear Friends.. I am going to tag many of you, Yes I know I am taking you for granted :). Please remove tag if you want to. I wanted this story to reach out to as many people. 

April 2nd is Autism Awareness and acceptance Day. Please wear blue and support the cause.. and share this story if you could..

This saree concludes my #100SareePact journey. Please know I am thankful to each of you for reading, commenting, reaching out to me and helping in many more ways than I can mention. I have learnt a lot, grew as a person and seen a different world with you.

Please know #thankyou #gratitude cannot even begin to describe what I feel today. 


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This blue Banarasi on a crisp sunny day is a storyteller of hope, optimism, parenting, life, support, help and our own struggle and wish to build a better life for our children.

Ashish and I were young parents. Ajey is 97 born and we welcomed Anand in 2000. Life was great, Ashish was extremely happy in his career and I decided to stay home to raise the boys. Boys were a delight to be with. Anand wasn’t much of a talker but it didn’t bother me because his brother was a late talker and when Ajey started talking it was hard to keep him quiet.

We moved to our home in 2003. A new town, a new home we started our life in unknown town with excitement and happiness.


Soon Anand started preschool. His teacher noticed him not being very social. And there our journey started. He was diagnosed with speech and language delay when he was 4. Finally we got the name “Autism” when he was 8. 

I had just started working full time that diagnosis changed our life totally.

It took us sometime to figure out what was happening. It was one of the darkest times of our life for sure. We were in denial, frustrated, sad, heartbroken and angry.

But soon enough we made some decisions, decided to do what was the best for Anand, changed our life style and philosophy.

We read, studied whatever we could get, attended seminars and workshops, met parents and asked for help. Ajey was a wonderful older brother, who read and learnt about special needs. 

In 2009 I went to India for my sister’s wedding I realized how difficult it was for Anand. People didn’t understand him and questioned our parenting skills. That trip made me stronger and I decided to tell our story. Hence the blog “momlovesanand.blogspot.com” was born. I started writing about our struggles and small victories. It was a very difficult decision to put our life in open to the whole world. But I was determined to make things better for Anand. That blog helped many people understand the complexity of Anand’s life and many reached out to us. Many wrote to me that I wrote about their life, many said the blog helped them understand the Autism world and many thanked me to give them courage to seek help with their struggles.

 I want to tell you my story because I have been to every situation a special need mother could be. Today my mission is to educate parents about special need world, spread the awareness and acceptance for kids with special need.

I volunteer with many organizations and that makes me happy. I learnt mothers can do wonder if together. Please support each other, ask for help when needed and encourage your family to learn more about special need.

Today Anand goes to “co-taught” high school, enjoys music and makes friends. We still have our days when things are not so easy on any of us but we learnt to count the good days and move on with not so good days. Vacations are still difficult but not impossible, eating out is easier than before. We have learnt to accept “our Normal”.

 Our life is much better because we want to find solutions and not hide our difficulties. Ashish and I take care of each other and "us". I pursue my hobbies, do what I enjoy. We share our concerns and household chores. When I go to workshops, class or a music gathering I know my boys are well taken care of with their dad. As a family we figured out what works for us. I am very lucky to have a great support system. our families are well informed and educated, the friends around us have taken time to understand our life. We seek help when needed and always there to help in anyways we can . That way we can make a better world for our children. Most importantly we are open to advise, help and suggestion. We are not hiding and accepting that our world in not "picture perfect" but we make it wonderful for us. We learnt to accept a new normal, our normal. 

Today I urge you to add compassion, empathy, kindness and love in your life and see how beautiful this world is .. not only of others - for you too.


Sunday, November 1, 2015

"Empowered mother" is the only solution !!


#100sareepact
#Learning
#saree69
#AutismLearning
#AutismAcceptance
#MotherFighter
With Autism things are not routine or traditional in our life. As I always say every thing is custom made so we keep learning and adjusting and trying.

After many years with so many workshops, seminars, doctors’ visits and books and everything in between we equipped us with knowledge but there is so much more to learn. Sometimes it is frustrating but at the same time it inspires to do more.

One of these seminar one speaker mentioned the program Federation runs for advocates (federation of children with special needs FCSN.org)

Lucky for me the class was about to start in two week. It is course of 9 classes for 6 hours and was to run for 10 weeks. I decided it was time to get into advocacy world not for profession per se but to know more. I started the class 4 weeks ago, a drive of 40 miles from home. It’s been a journey full of a heart aches, inspiration, hope, worries, motivation, togetherness, compassion and passion.

35 of us, parents, teachers, professional and attorneys we all are in this together. Passion to do more for our kids, students and clients. We want to educate people around us.

I heard they are having tough time reaching out to many parents in Asian community because of culture and attitude. They don’t even have Indian volunteers to talk to parents. I offered Federation that I will volunteer with them and try to help them in anyways I can. Because I know how it is to be a mom, a special INDIAN mom. I know how easy and comforting denial can be. How lonely and dark the path can be when you have no support and information around and shutting down all the doors seems the best option. I know how scary it is to think of future but at the same time I know how knowledge can empower any mother. A well-informed mother is what we need for our children..

the unuasal 70F weather in Oct made me celebrate the festive season and inspired me to wear a saree . My first Crepe from Mysore Silk Udyog, first taste of commercial street world. A quick selfie before I head out.. 

The fantastic coordinator with me – pic in the comment. Her daughter inspired her to learn more, connect, support and unite people and now educating others is her mission. I so wish to follow her footstep.




Thursday, October 1, 2015

Gratitude and friendships


#Saree41
#Gratitude
#Chaiforcancer
#Graduationforacause

This Saree is a tribute to "friendship" .Well this story has so many sub stories in it. But today its all about "friendship" So be ready for a long read please.
Last Saturday I hosted a "chai ka Adda for cancer'. I met Viji on Saree Pact and loved her work. Her initiative "Chai for Cancer" saves many lives and won over many hearts. 
As you all know "Autism" is my cause but this friendship made me look beyond my life and be a part of something else. Friendship widened my world and I decided to host another adda at my home. 
My son decided to make it his graduation party and donate his gifts to Max Foundation. Motherly pride has no limit as I write this.
I called and posted on Facebook and my friends rushed in to support me and Ajey.
Finally the day came. Viji wore a blue to honor my cause "Autism" and I wore the color of "Max Foundation". We never talked about or decided but were amazed and happy to see each other in our colors. My friends Sent from my iPhone
Whoever was not I knew they so wanted to be here but couldn't. They called, texted and donated. A fellow Pact-er Lakshmi drove from New Jersey to be part of it.

I couldn't be prouder and happier. It was not just the money it was the gesture behind the whole thing. . I am still in awe of the whole thing. How fortunate we are to have such wonderful and generous people around us. 
My friends - please know you define me in various ways, You make life what is it today for Pandeys. I feel very lucky to have you in my life. Your friendship is a treasure. The adda was very successful in every term and please know I am just proud and blessed and thankful. 
Now its your time to see all the pictures and read Ajey's thought why he felt he should be part of it.

Ajey: -
Thank you all for coming to this Chai for Cancer adda, a project by the Max Foundation to help people in India battling chronic myeloid leukemia and gastrointestinal stromal tumors. Thank you to Viji Venkatesh for spearheading this wonderful effort, and thank you to my mother, Jaya Pandey, for hosting this adda. We should do this more often. I do drink a lot of chai.
You may have heard that is a replacement for my graduation party--I think I should explain myself. When I heard about Chai for Cancer, I was thinking about planning my own graduation party. But then I realized: I don’t need graduation gifts. I have a comfortable life, I have a wonderful family, and I’m going to college. What more do I need? What more do I want? 

Meanwhile, there are so many people struggling with cancer, fighting to keep their strength between rounds of chemotherapy, hoping the next treatment works better than the last one, questioning whether they’ll see their next birthday. They need help from their community more than I ever did and possibly more than I ever will. I’m not doing anything noble--I’m just telling the truth.

Among my peers, the noble thing to do is to “go cure cancer.” The height of honor is enshrined in glass laboratories, in cell research, DNA analysis, and drug manufacturing. That’s critical. But it’s not everything. Because cancer doesn’t simply exist in petri dishes--it affects people. We must also honor the doctors, caregivers, and community leaders who help those people, who give strength to patients and support for their loved ones. 
Let’s drink to these wonderful people and all they do for cancer patients.
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Pictures below
https://www.facebook.com/jayapande/media_set?set=a.10155781140700481.627150480&type=3