Sunday, December 10, 2017

Time to seek help, offer help and pay it forward.

After my last blog (about Mom’s get together) I got a text from a very dear friend –“I confess I need to be educated about days in your life and how can I help, We need to be a more aware society and help when and where we can”

I have been thinking about it for a long time, every time I talked about Autism awareness and acceptance I did understand that explaining the spectrum is very difficult and talking about Anand and his ability will not help everyone on spectrum. I have been looking for ways to do it in a better way. And then this text again proved my point. We just don’t have to talk about awareness we need to build a better society with understanding.. not just ask for acceptance for our kids.

I am working on this draft, please help me explain in a better way.
Your journey is sure different than mine, but again we are in this together. I appreciate having friends in my life who try to understand what our life is with Anand. Over the year, they have seen Anand grow and their existence in my life is the strength. I wish you all have someone to go to, I wish your friends have understanding of your difficulties and I wish they have heart to offer their help to you.

When someone asks, what is autism I still struggle to explain, I say for my son it is comprehension issue, he has trouble with filters, cannot understand abstract and flowery language, he doesn’t understand when people talk very fast. He cannot foresee, predict and plan. He doesn’t have “what if” scenario, he doesn’t understand the consequences and absolutely cannot bend the rules. He doesn’t know how to make and keep friends and complexity of situation or relationships are beyond him. Unknown is the scary world for him and because he doesn’t get many things he doesn’t want to be part of any circle now.
I still remember the Soccer days, when everyone in the team was running around for ball my son was busy watching stuff on ground, going in different direction and not understanding what coach was shouting.
He is much better with non-abstract stuff. He loved board games. He is very good with chess or scrabble and his grammar is perfect. He is wonderful with younger kids because they don’t question him. He loves to help if he can.
 Huh, I think this description is good enough for now, for me and for you too. At least it gives an idea.
Please help me write this, help me explain what goes in our life. How we don’t have a day to day life because it can change its mood any minute. I want to help the special families as well the typical families to understand our life. So, they can be help when needed and believe me so many would love to be part of your world, just need to know how.
Time to seek help, offer help and pay it forward.

Anand cleaning my car this morning, BECAUSE I asked for help.
Dad woke up with leg pain and couldn't do much. so we explained to Anand how can he help. and here he was all geared up to rescue us.

Sunday, December 3, 2017

Making of a village. A desi one

The energy, the laughter, the happiness and the excitement in that room was so obvious, for a moment I forgot that these are the moms whose lives are far from easy and it was nothing short of miracle to have all of them there in one room on a cold, Friday night in December. BUT they were there and were REALLY present, the feeling of gratitude washes over me as I write this. Some day you really need an assurance with what you are doing is right, it was one of those night.
I have been planning for this for sometimes now and wasn’t sure how will it work out. Venue, time, date, convenience and logistics too many things to worry about, ON top of that we are special mothers, nothing is certain in our life. One meltdown can change the direction of the day. I haven’t met most of them in person so no one knew what to expect, and to give an evening to someone you never met is little too much to ask and I totally get it.
A friend and I joked that we might end up alone. Well, I believed in the mission and decided to go ahead with the plan. I am sure there were many questions in everyone’s mind about the whole idea. Meanwhile some of them read some of my blogs, some read Saree stories and I am sure some agreed just for the curiosity. As day drew closer more agreed. I think it was peer pressure in that what’s app group. A night before we learnt the restaurant won’t take the reservations for Friday night. These are the times you thank your stars, a friend who owns a restaurant agreed to host us. Meanwhile another persistent mother could finally convince the Olive Garden manager and we were in. Friday morning, we were around 18-20 mothers. By the time, we met we were party of 27. When I walked in I was a happy and worried woman, I really wanted everyone to have great time. The manager gave us a room and the best staff. We met, we laughed, hugged, complimented, commented and joked. We did introductions, we shared our dreams and celebrated what we have and decided not to worry about what we don’t have. We promised to help and support each other. We posed and took pictures. Someone toasted for positivity in life. We joked with our wait staff and had so much fun that other people in restaurant asked the manager what kind of celebration was going on. I am sure they were in shock knowing we were special mothers. We all walked in not knowing many and after more than three and half hour we left having many by our side. Promised each other to meet soon. I drove back home with gratitude in my heart. So many emotions and so many happy faces, that’s all I can remember.
The next morning my phone was buzzing with messages and pictures. One of them said it was one of the best night she ever had, the other said it was her first night of this kind and she is glad she came. One said she thought her life was just cooking, cleaning and taking care of kid but that night she found something beyond that.
I was asked to plan another one soon. The moms who couldn’t make that night want to make sure they attend the next one.

That one night redefined strength, motherhood, optimism, enthusiasm, persistence, support, hope, confidence and sisterhood. I always believed in having girlfriend support system, I am so glad many of those have a village of their own now.

This beauty is a gift from a high school friend's wife, whom I never met. He came to see us in Boston when he visited NJ for work. I think he spent more time in flight and on road than with us. we are not only lucky to have great friends but their spouses in our life too. 

Friday, December 1, 2017

"You got a friend in me "

Last night I went to bed with a feeling of satisfaction in my heart. The feeling when you know you made a difference, even a tiny one, a simple one. When you have done something and you SEE the result.

I have been writing about our life for few years. It is painful and depressing many a times but rewarding at the same time. Even one comment from someone who felt it was their story, someone felt close, someone else felt they are not alone, most importantly someone felt the hardship in their life is not end of the world. When my boys were young “you got a friend in me” from toy story was their favorite. This song still is my mantra, I think I can be myself because I am very fortunate to have people who get me. Ashish has been my best friend forever, Ajey became my another to go person when I need some light to see things differently and Anand has inspired me to be a better person, always. Other than these three men in my life there are some unsung heroes who hold me tight, they have their ways of saying they got me no matter what. My parents and sisters are my other pillar of strengths. I think I am optimist because I have these rays of sunshine in my life, always believed everyone should have some of that.

I have been told that I connect on a different level, never thought it that way. I have always had friends in my life but now when I am a mother I need different level of friendship with different people. Specially with Autism taking over our life in least expected way I think my relationships held me together and made me stronger. And I have been working on spreading joy of having “togo” people in life. Finally its taking shape and I am so happy.

I have been organizing special moms get together, 4 -5 moms would come and we would talk about our life. I was extremely happy that at least they felt like coming out of their shell and shared their world, sometimes a difficult one to stranger me. They opened their heart and life and made me a part of it.

Tonight we are meeting again and I am overwhelmed and over joyed that looks like we will be 25+ in that group. When the plan started a friend and I joked that it might be two of us only. We didn’t expect Moms coming out on a December, cold Friday night. But as days pass by I could feel the excitement. The planning, the place, the location, the ride, the sitter, husbands schedule talk about all these things again proved my point, we so want someone who gets us, listens to us.

I am so excited and want all of them to sing – for each other, for themselves..”you got a friend in me” Amen !!

Below is picture from yesterday, such a rare sight.. Anand agreed to be in picture, a smiley and happy Anand.