Independence Story

When we have kids, we have different wishes and hopes for them.

It is interesting how our dreams and vision changes time to time. We adjust our expectation and sometimes raise the bar. We push our kids and sometimes step back when needed. It’s not easy but we do whatever feels right at that moment. 

We keep learning, modifying our parenting style based on situation and kid. It stands true for any kid but in special need world these things have names, one of them is transition planning. When the kid is 14, we officially start planning for their transition to adulthood. And the biggest take away from all the discussion is “independence” how will the child do when the parents are not around. We have been working on these goals and step by step one thing after another. Our vision of independence is for sure different than Anand’s. he would like to have no restriction over wifi, junk food, soda and access to whatever he wants J

Last week this picture defined one major step of independence for us.

Anand has been member of YMCA’s leader program and they hosted a prom night. It was basically an overnight fun stay. We have been working on noting everything on family calendar so it was there for couple of weeks now. On Thursday I got a text “ help me pack this Friday” the prom was on Sunday. I loved the idea of getting ready in advance. By Friday I just had to remind him to make a list if things he would need for an overnight stay. We went through what he needs when he spends a night away. Saturday morning Anand had everything on the side of the wall ready, and I am very proud that most of the things were perfect

By Sunday morning, the sleeping bag and comforter were packed and brush and tooth paste were in the bag. The phone was charged and the backup battery was ready.

Later in the day I could sense he was nervous but thank goodness for Video games, soon he forgot about everything.

Dad dropped him and then we realized it wasn’t just Franklin YMCA it was from many. We got a text in the night how good he was doing. Next morning, he was to be picked up by 8.30 I think he was ready by 7.30. We got to know that only 6 of Franklin people were there. I couldn’t stop wondering that Anand spent the night with people he didn’t know. Except those 6 kids. It is such a big step in every way. He could sleep away from home among strangers and not made a fuss about it. He came back home happy and with tons of pictures. I got to know some details, about music, dinner and how they could hangout till 1.30 AM and the boys slept in gym and girls were in another room.

It takes a lot to be away from comfort zone for anyone, my heart swells with pride thinking Anand could do it and enjoyed it. One step at a time mamma, you will get there.

New Year in different Style

This event took place on Dec 29th, I couldn't write very next day and then life took over. but I still felt this story had to be told.. here it is. late BUT.better than never.
That night I walked into that room not knowing what to expect. Have been with center for few years now but hadn’t been to many of the activities. Anand never felt at home with center. When to think of it he never felt at ease anywhere except his own home. It’s an irony how a son born to a mother who belongs everywhere. Center soon became my place and I found my village there. Many of you remember my story about mother’s retreat. Center is basically designed to build a village for our children. The whole team is so passionate about helping families in need.

Our family is not part of any family gathering. I go there once a year for Mother’s retreat and get my Mama energy for a year. We meet our old friends and make some new and keep in touch.

When a friend posted something on Facebook and asked if I was coming for New Year’s party I decided to go. It was on Dec 30^th. It was a snowy and very cold week in Boston. But that never stopped any of us anyways. I decided to put my bling on and be part of that party.

What I saw that night was an idea, a brilliant one. Imagine that. Celebrate New year with our kids on Dec 30^th and at 9 PM. Parents could hangout with other parents without worrying about anything. There were photo sessions and decoration and popups for photos

 The kids ate and mingled and then DJ and Music started the party. He played few songs and then kids started the karaoke, some of them were really good singers, after some time someone walked on dance floor and then before you know many joined and it was a big dance party, that was pure magic, everyone was just having fun. So many accommodation for sensory overload and quite space and everyone just respected everyone’s need and space. I couldn’t resist dancing with a cutest partner on earth. around 9 PM the countdown started and sharp 9 PM we all shouted happy New Year and then it was a wonderful beginning to 2018.. a warm, musical, colorful, glittery welcome.  To the Idea of hope, progress, happiness, inclusion, wish for a better society and peace for everyone.

Saree from a dear friend. A Surat creation, I couldn’t imagine me in this but couldn’t be happier. Sometimes its best to listen to friend and not question their choice for you.

Wishes for next 365 days

This morning I type this post feeling hopeful for all of you. Logically as my husband mentions nothing changes, we just get a day off, a reason to have another party, drink and stay up late watching TV. If at all anything changes it’s the calendar on kitchen wall, last digit on your date stamp and lots of phone calls, messages and Facebook post and thousands of pictures. But at the same time, I feel it gives us a reason to look back and think what worked for us and what didn’t.

I always say our mind changes every 10 years and we redefine what our life is. Our body defines the way we should live and mind dictates what is important for us. I wish for everyone to find that balance and not wait for body or mind to dictate.

The #HOPEFULL campaign is really all about that. Wishes for a better world for us, for our kids. A change for world, a new philosophy to live by, a dream for a mom, to reach out to people who need a hand, hope to be the motivation, have a motivation, be inspired and be an inspiration, a change maker in some way in someone's life. a smile, a dream..

I wish you all that next 365 days will make you do things differently, will make you a better person and above all you will contribute to make this world a better place.

This morning My Facebook status update was -
Its one of those kind of days.
I started writing about wishes and hope in the morning, Couldn't finish, wished a mom from our tribe whose daughter turns 16 today, spoke to another mom whose daughter is transitioning to adult world soon, visited someone who has known me for 35 years, had a very meaningful discussion in the afternoon about being involved and making a difference in Indian community , and then a heart wrenching talk with a dad who just learnt his 2 yrs old son has Autism.. oh how I wish I could reach across the phone and give him a hug that he is not alone.
I wanted to write about my New year date with a toddler who was fascinated with my saree and Bindi on New years party..
Well that has to wait.. Today lets be #Hopeful

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.