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

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Jaya Pandey

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.)

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