Saturday, February 24, 2018

Be a part of something bigger.

A day well spent in Boston University.
Please visit.
Anand spent his Thursday of vacation week in Boston University.

Anand was part of Child Auditory Processing Studies (CAPS)

 Amazing Sophie, the researcher.. her brother inspired her to study Brain

During our lunch break .. I couldn't stop wondering if someone from his crowd will find  cure for cancer or invent something ..
I have always believed in therapy and science more than “treatment” so we welcome any opportunity to be part of any study. I never cared what we get now, as I always said it is not for us, it is for next generation. Off course now when Anand can decide what he wants to do,the incentives work for him.
School vacation weeks are always tough as it gets boring for him. No friends, nothing to do so we try to do stuff as family but many a times it’s not enough. So when the Boston university had an opening we gladly agreed to do it. A day in the can you let it pass.
The team was wonderful and they understood the need to “pre-plan” so going in we exactly knew the schedule. We knew we cannot make multiple trips so they put together a plan to do everything in one day, 4 and half hour schedule.
While going in little I knew I would get to meet some wonderful people in the field. I had an opportunity to spend time with the center director and she amazed me with her drive to find answers in this field. She has been to various part of the world. She grew up in London so obviously, she was very much familiar with India and its whole aura. We talked about culture and its role in disability world. Loved listening to story of her India trip and experience of Benaras.
The researcher of this study wants to find answer because her brother has autism. I loved hanging out in the center and exploring what is going on in that field. Finally, I was introduced to a young future doctor “R” who is from an Indian family and her uncle has Autism. He was abandoned by his biological father because of disability and R’s family adopted him. The magic of humankind and that inspired R to be a Neuro Doc. While I was busy socializing, my son was busy doing his part. This particular study analyzes the brain EEG.
Anand was paid and he spent his money buying his favorite game. His mother was happy with free parking.

On my way back I was thinking how we all are part of something bigger. Please consider being part of research, We need to find answers to many questions.

Tuesday, February 20, 2018

What is your escape?

I always imagine – if my dining table could talk.. the stories.. endless talks, discussion, anger, happiness, frustration it has seen it all.  Stories of childhood, memories of youth and smiles of experience. At the same time, it has witnessed the parenting in all form, size and shape and not to mention the motherhood of various race, ethnicity and age and class.
I am very fortunate to have met wonderful people in my life. I have learnt a lot from many of them and I think I too have spread happiness in their life in some way.
Every time we host someone or meet someone we learnt a great deal of human behavior and marvel how things work differently with different people. Some of us deal with grief openly some of us just take it in and some of us just runaway and not deal with it.
I have seen many moms with special need children and their way of dealing with their disappointment. Many of them are runner, some dance, some meditate, exercise is must for many of them. Moms come in many forms as poet, singers and painters, I cook, party and always doing something. We all have our ways.. I have wonderful friends with neuro typical kids but at the same time I enjoy company of other special moms. But some of the moms who have kids with needs don’t want to hang out with other special moms. May be its just a cruel reminder of their own reality or afraid to face the realization of their own fears or seeing their own pain on someone else’s face? It is hard to decide or choose what is better.
Some people want to feel a part of a larger group going through similar circumstances and some people want to do it privately. But whatever it is there is no way around it. We all have be that mom one way or another. When we are around people who are our own we let our guards down and there we ALL are – exactly the same- dreamer but worried, hopeful but sad and just want someone to hold us tight and hug and say its all turnout to be OK, your ok, not anyone else’s.. how do I know? Because I have been there before..
 Anand's way of dealing with his biggest stress.. his mother
on the way to get his brother home .. music is HIS escape.. what is yours?

Saturday, February 17, 2018

When you believe in what you do.

This post is a series of dinners I am organizing for special needs moms, a desi village I called .. please read here how it's all started.
The assurance in your karma comes in many form. For me it came in form of absence of a tear last night. It’s hard to believe but we were 23 moms in that room, we talked about our kids, our joy, our difficulties, our lessons, our regrets, our pride, our hopes and dreams and sometimes our disappointment but we didn’t shed a tear. We laughed, we smiled, we hugged, we joked, we held each other and decided we are there for each other no matter what.
It was a cold, breezy February night but an exciting one. We were meeting in a restaurant to share our life story with other moms, many of them never met before but felt have known forever.
We all are part of a bigger whats app group and have been talking on virtual platform. The group started by two worrier moms to share information. Slowly it became more than some group, it became our village. I wouldn’t call it a support group because the word doesn’t portray what we all are to each other. The saying it takes a village to raise a child really defines us in a different way. It is our village to raise our children who have challenges none of us were trained to take care of.
23 of us came together with different upbringing, background, cities, socioeconomic status and lead totally different lives now but we all have something in common, the love for our kids and zest to make their world better every day. One of them talked about the severe medical needs for her child, the other explained the reaction of families and friends, one described what it was to raise a kid 25 years ago in a new country, someone talked about how difficult it is to navigate the system not only education but social or support, many of them shared some very private experiences. But one thing struck me is each and every one of them was so eager to help the other mom so she didn’t have to face the same thing. Someone offered to host a coffee in their home, someone offered information and knowledge they gained over the years, someone offered an ear to hear. Everyone had a story, a unique one and we all were in awe to each other. The time just flew and I could see how difficult it was for any of us to leave. We missed who couldn’t make it and had some more fun for them.
We made promise, to meet often and joke and gossip often. When I was driving to the venue I got a call that there wasn’t any reservation for us. Manager messed up the dates. But I knew in my heart that it will work out and it did. It got resolved and we had the best time. I know when you want to do something beyond your capabilities the whole universe come together to help you. Last night was one of those for me. I can close my eyes and hear those laughter and conversation, feel the happiness in the air and see the smiles. The feeling to assure togetherness, strength and support makes me hopeful. We are off to a good start. Moms please know each one of you are my hero. I am so grateful that you all are in my life. You have given me a purpose, you all reassure that what I am doing is right and much needed in your life and in mine.. Keep shining..

 Some of us were ready to face the world. Other didn't.. Its a journey, everyone's own..

two of these moms went to same school in India  can you imagine how cool is that? they met here just to discover their alma mater. Two more moms found out their parents live in the same area in London..
 but this picture so symbolizes what we wanted to do..
 Hold each other's hand and be there

A blue silk to celebrate friendship. Thank you 100sareePact to give me a medium for my stories.
#thankful #100SareePactandBeyond

 my phone is buzzing with messages and calls of gratitude, happiness, new found friendship and support. Please please if you know someone who needs help, let them know they are not alone. We are in it together.