Sunday, April 28, 2019

Article published by India New England..April 2nd 2019

Autism Mom Recounts Her Journey, Urges People to Wear Blue on Tuesday to Mark World Autism Awareness Day

By Jaya Pandey
BOSTON–Since I started blogging about my journey as an Autism Mom, I have seen my world changing. Friends and family have been very supportive and have tried their best to understand our different worlds. The journey from “I am so sorry” to “what can we do” is very heart warming. It was a wild and scary experience to share our world with everyone but that was necessary at that time.
We have allowed families and friends to have a peek of our wonderful, different, sometimes crazy and fun world. In doing so we have felt empowered and vulnerable at the same time. I started blogging so that our families back home could understand our life; little did I know that It will become a voice of many others.
Today it has become a way to not only know our lives but also to get a glimpse of many special need lives. One thing that I am proud of is the question – “How can we help” not only applies to Pandeys but to any family with special need kids.
April 2nd is around the corner and I thought that is the perfect time to write about what it means to have a friend who understands and want to be with us as part of our journey.
So first of all please wear Blue on April 2nd.
April is Autism Awareness Month and April 2nd is World Autism Awareness Day designated by the United Nations General Assembly in 2008. “Autism Speaks”started a campaign called  “light up blue.” (They asked everyone to go blue – a light on your porch or wear blue) I personally don’t agree with many of the Autism Speaks philosophy but still I use the color blue to draw attention to Autism Awareness. In my mind this “blue” has nothing to do with gender of the kid on spectrum. For me it represents the family with different needs.
So it’s OK if you don’t want to light up blue but please wear Blue on April 2nd to show your support to our not so fortunate families.
Our kids are our world, with or without their needs. To make the world better for them and for us we need families who believe in them, give them a loving home, support them in any possible way one can, help them fulfil their dreams and treat them with dignity they deserve. Give them a chance to thrive and be independent. Every kid deserves that and all of us as a society owe that to the new generation.
When it comes to special need families, we tend to forget that all of above is true for them too. Those families need all the support and love too. So please help everyone in need.
Over the years I have learnt a lot from both sides, families with kids and their friends. Many a times friends feel the pain and understand but don’t know how to help. At the same times families hesitate to ask for help and feel they need to do everything on their own.
Today I thought I should reach out to all of you, families and friends. We really need to redefine “’A friend in need is a friend indeed’” There are few things we all have to keep in mind when reaching out. Do it if you really want to be a friend and not because you want to do “something good for the society.’ Monitory donation are different from a desire to be part of your friend’s  life. You really need to “feel” it. Stop reading if it is not something for you. But if you really want to be a part of their world then there are few things you can do.
Be there, be present, sometimes we special families just need an ear, may be a cup of tea or just a judgement free zone. A friend  invited us for dinner, for the first time to their home. A new, gorgeous, and huge home. All Anand wanted was to “see” the house. We were made sit with a glass of wine and the host walked all over the house with Anand to give him a tour. I think that one night that family earned a special place in my heart.
Ask – how can you help? There are many innovative ways to show you value them in your life and cherish their friendship. They are not alone in this. Sometime cook something, buy groceries, a bunch of flower or a simple phone call or text can make a difference. A friend makes chickpeas for Anand. He loves her cooking and when she cooks I don’t have to worry about at least four of his next meals. I can cook and eat things he doesn’t like. So many times friends have dropped off his favorite food just for no reason.
Invite them to your home, and even though they refuse every time continue to still invite them. That makes them feel included. Now most of our friends know we are not a party family and so they do a small gathering with 2-3 families that  we enjoy. How wonderful to have those around you invite you because they want to. My friends keep a room for Anand for his quite time, Ask what makes Anand comfortable, what will he eat.
I have been to friends who will stack up their fridge with blueberries, strawberries and ice cream for Anand.
As a mom, I don’t want to hear all the time how strong I am or how I do it.. to be honest we all do in our own way. Parenting is hard no matter what. Please allow them to fall apart in front of you. Give them the comfort of feeling weak, cry and make them feel cared for and pampered. No one is perfect and its ok. When my anxiety gets the best of me. I drive to them just to have a tea, talk and breakdown. I come back stronger and better. Many a times my friends have driven down to see me for a cup of tea because they felt like it.
But most of all include the kids in as many ways as you can, take them out for a dinner, or a play date, buy a gift for them, or just sit down with them to check on them. Moms feels loved, valued and appreciated when you care for their kids along with them.
So be a friend, make a phone call, send a text that you want to be their “real” friend and please wear Blue for me on April 2nd. Show me you care.
(Jaya Pandey is founder of Mom’s Network, a group of mothers that spreads awareness regarding autism and supports moms with special needs children.)

Tuesday, April 2, 2019

One person at a time - Thats what April 2nd and Autism Awareness means.

April 1st , 10 PM. Posted on April 2nd. 
He pulls his chair towards me and looks into my eyes and asks – Explain to me what is Autism?
I think this was the best thing that happened to me today. I educated one person to know the special needs world in a better way.
As the last week of March approached I wanted to write more about what Awareness means to us. I printed some fliers and my manager offered to share them with a bigger audience. I printed some posters and posted in the kitchen area on all 8 floors at work. It was last week and I wasn’t even sure if anyone would look into them.
Today being a Monday brings a whole different perspective in life. It was a beautiful sunny day, Husband worked from home so I drove, so unusual for Monday. Instead of taking my morning nap I was stuck in the car for longer than usual. A terrible car accident made sure I stayed on the road longer. After usual phone calls to sisters and parents I still had time to plan my day. I wanted to do more than just posting that notice for Autism Awareness day. Somehow, I thought what I did wasn’t working. I needed to do something better.
It was a crazy work day but I still managed to execute my plan. The wonderful security guard agreed that I could post some in the corridor area. She is the first one I encounter every day at work, she is the first good morning for me. She is the one who notices first when I wear a saree. She said unfortunately I cannot wear blue, must wear my uniform but I will wear blue earrings may be. Such a nice gesture, cannot wait to see her tomorrow.
After lunch I went to each and every floor with tape and poster in my hand. I walked out of the elevator and pasted one above the elevator ring and walked back in. People were observing. It was on the fourth floor a girl, an Indian girl asked me why I was posting those signs. What is it about. I told her about Anand and the reason I am doing it. She smiled and said, never knew but now I will wear blue tomorrow. I said don’t wear unless you mean it so please read about awareness and acceptance. Her reassuring smile and words were very comforting knowing I did make a difference in one person’s mind.
I walked back to my desk thinking of sending a reminder. I took my manager’s email and added Anand’s and my picture with a note. Before I knew I had some emails in my inbox. People who don’t know me shared their stories, some admired my note, some asked questions but most pledged to wear blue tomorrow.
And then all of sudden, “S” asked about Autism. S and I have been working together for the last 8 months, we sit next to each other so we are aware of the day to day happenings in our lives through various conversations. He is from Eritrea and we both share many immigrant traits. He had many Indian teachers growing up and remembers some Indian stuff. His curiosity to know more about Autism was heartwarming. I explained to him the not so usual life we lead, about the joys and the happiness and the heartbreak and the difficulties we share. I hope I made some sense, but more than that I educated him and it will make a difference in someone else’s life.
I call it a night knowing I answered a few questions, educated someone, connected to a few I wouldn’t have otherwise. I am smiling looking at my blue saree ready to be draped tomorrow knowing fully well I will not be alone..
Stay tuned for next story..A day of blue..

My talented nephew Sushen designed this for me .. A cousin's love..

First floor elevator, I am sure few stoped and read and few didn't bother.

A chettinad cotton Saree, waited so long finally ready to be drapped. 
Sometimes I wonder if I didnt wear the saree on that Sunny April 2nd in 2015.. That one day changed what saree means to me now..