My name is Jaya Pandey, and I live in Franklin, MA, with my husband and our two sons, Ajey and Anand. My younger son is autistic. Through this blog, I share our journey and raise awareness about autism, especially in the Indian community. I also founded Desi Moms Network for Indian families raising children with disabilities. Join me in building a caring community where moms support moms through shared experiences, resources, hope, and friendship. Visit my other blog: JayaPandey.blogspot.com.
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Thursday, April 20, 2017
Parents are the Change Agents - Thank you MFOFC
Sunday, April 2, 2017
Wearing blue is the first step towards acceptance.
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.
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.
Tuesday, March 28, 2017
Autism Housing Pathway fundraiser - March 18th, 2017
Friday, March 3, 2017
That missing piece.
Friday, January 27, 2017
The Desi Village..
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..
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..
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?
Tuesday, December 27, 2016
Crystal Ball.. every mother wants one.
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"
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..
Saturday, October 15, 2016
A day with Future Educators in Boston University - An Indian Mother and Special Education world.
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
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 !!
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.
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.















