Tuesday, March 28, 2017

Autism Housing Pathway fundraiser - March 18th, 2017

We usually hear the world is very small. BUT When it comes to special needs world is huge, we can get lost. Looking for resources, help and education is a task often falls on parents’ shoulder. And all of us struggle to get and do more for our children.
I always feel grateful and admire to the mothers who have done this way longer and more effectively than me. For me they are the pioneer, I look up to them for many things. They are the ones who inspire me to give back to the special need community more, help new families to navigate this world. 
I still remember my dark days (they are not over yet but now they are very few and far between) when things seemed impossible, not knowing what future holds, was the most frightening thing, nothing was working but this group of amazing moms helped me see through the dark times.

Cathy and Cheryl are one of those moms, who inspired, helped many and continue to do so. Their Autism housing pathway helps finding the right housing solution. It was their annual fundraiser and Dancing with the celebrity was the theme.
5 of the respected community member were paired with MIT’s ballroom dancing team. Cheryl’s husband was one of them and I couldn’t let go a chance watching Alex dance :)
The whole show was just full of awesomeness, One of the dancer was a gorgeous police officer of that town. Another one was a brilliant musician with special needs. one was a fighter dad, a director for a non profit and another one assistant principal.
Every year MIT’s ballroom dancing team teaches them and dance with them.
That brilliant MIT team does this year after year. The internationally recognized judges give their time at no cost. I say world is just full of awesomeness, isn't it?
I was in audience watching in awe, not just the dance, the whole energy behind this fundraiser. It wasn’t a crowd of wealthy but the crowd of rich people, people with empathy and compassion. They might not be the millionaire but surely they knew how ot help and support the community of their own.
The organizers, the audience, the MIT team, the artist who displayed their arts everyone was there to fulfill the dream of many of mothers like me – to have a better world for our kids, who only need respect and compassion. Rest will fall into its place on its own.

Friday, March 3, 2017

That missing piece.

I saw the movie Lion last night. The story, the actors, the performance and art direction.. everything was just beyond words.
The movie was all about not knowing what is missing in you and once you realize the quest to find that missing piece.
I thought how close it is to our children. I often think of Anand’s own perception of himself. What does he think, what does he feel or what will make a difference in his life. Does he know what is he missing ? Many a time I hear him talk about people around him, how he misses that social interaction, movies, bike riding all over the town with boys, fun, party or dinner out, girls, not having friends to hangout often. But these are obvious “missing” in his life, he knows these. But what about the not known “missings”? He doesn’t know them yet but will he realize that? “You don’t know what you don’t know” is my favorite line but we keep working to know more, learn more. I cannot imagine my life without this quest but imagining his life without this question is very comfortable for him and me for now.
The movie pulls a string in your mind somewhere and you question everything around you. What is real and what is not. Should we just be happy with what we have or look for those missing dots in life at the risk of losing everything?
A question to ponder upon?

Friday, January 27, 2017

The Desi Village..

The four mother in that quiet restaurant met like they have known each other forever. When I walked in, the server asked me how many and I had no idea what to answer him. I just said I think we are 5, meeting for lunch. He agreed to give me the window corner seat and I sat there wondering what to expect in next hour. 
I got involved with a whatsApp group of Indian mothers of special need kids . We have been thinking about meeting for some time. This was a first time meet for me with this group, When I ignited this meeting many agreed but we had many cancellation that morning so norm in unpredictable special need world. Finally 3 more mothers walked in. I knew one of them but soon enough all of us became friends like never before. No-one in that restaurant could imagine that we were meeting for the first time. Soon we forgot that we were new to each other. All we knew that we are in this together. We shared our dream, we talked about our worries and frustration, felt thankful to have people and support system in our life, expressed the gratitude and at the same time talked about our lows and highs, explained laws and services to each other, showed our family pictures and felt the connection right away. In that short period we held each others hand and uplifted the spirit, shared the knowledge and felt connected.
I drove back home thinking these women get me more than many of my fiends and family. They understand the emotions behind those frowns or teary eyes without even saying anything. This brings up a very valid question-what brings human beings together? sometimes we feel strangers with people we have known all our lives. and at the same time we connect with total stranger, hand over our life story, share our feelings, emotions, dreams, fears with them.
Lets keep talking ladies and we will find joy, happiness, comfort and hope with each other. Amen to that.

Thursday, January 19, 2017

Happy birthday to the best mother..

As I try to work through my calendar and figure out some dates for some conference, I was wondering how important it is to be educated or to know. to know things about our kids, for our kids and through our kids. There is so much to learn but never enough. The link to conference connected me to some other informations, which I never knew existed.

The discussion in one of mom’s group brings a new point every time I log in to that group. At the same time I wonder how many of moms don’t even know about these. There are times I wonder if I should learn more, should I work harder, should I get out more often, read more.. the answer is absolutely but where is the answer, when to stop or where else to look for. Every time I meet another special mother I have a piece of advice to give as well to learn something new from her.
There is an overwhelming feeling I get and it keeps me awake at nights. “The what ifs”, “I wish I had known”, “what can I do more””what will happen” are to name few. The worry never leaves my side, always in the back of my mind no matter what I do.
I try my best to learn more, do more but there is a time when I just give up and shut down. I take a break and some time I get back to that task but some times I just move on and deal with something new I got my hands on.
Some of the mothers I meet are incredibly smart and devoted but at the same time I meet some of mothers who need some rude awakening.
Oh my my, how I wish we had a manual.
There are times when I feel its not only us special moms who deal with it, its all for all the mothers around. Its never easy, isn’t it? As I wish my mother a great birthday today I remember her saying a mother;s job is never finished. There is a time you worry about kids, then time comes when you worry about their kids too. Happy birthday Amma, I know atleast there is one place I could still be a kid and leave all my worries on your shoulder.

Saturday, January 14, 2017

New Year and resolutions..

Vacation weeks can be tough for anyone. no structure doesn’t do any good to any of us, leave aside our kids.
This holiday season we decided to take a vacation without kids, Just us. Ajey was home and suggested he would be home with Anand and two of us can go away for few days. such a wonderful start to the new year.
 The flights were booked and then I told Anand, as expected it was all fire, It didn’t go well with him and the first thing was “go alone why dad”. Well, this was the golden opportunity for me to teach him something, one more step towards independence.
We had real messy days, I was afraid how will we survive the vacation week but after 5 days things fell into place, He agreed to give it a try and the training began, his and mine. we both learnt to take one thing at a time. We were gone for 5 days, 4 school mornings. I didn’t want Ajey to do everything, that meant from morning to evening Anand’s task had to be Broken-down. We started with packing lunch and snacks. We couldn’t do the alarm in vacation week but started doing lunches. he is an excellent learner so it was quick and easy for him.
When school started on Jan 3rd, we did alarm and that day onwards he woke up on his own, packed his lunch and snack, brushed, showered, had his breakfast and left for school. Three days went without any glitch, I could see how proud he was but more than that his mother was on top of the world. We were leaving Friday, we were to leave by 6 and he was up and was getting ready for school.
That morning to airport I wasn’t excited only for my first (without kids vacation) with Ashish, I was excited and proud of my son. Who was smarter and more independent than last year.
I was away for five days. Few of phone calls and face times I heard he missed us, he was willing to come on face time that itself was a big thing for me.
I didn’t think I could enjoy the vacation but surprisingly I was better once I heard from Ajey that very first day how things were calm and good at home. The boys survived the snow storm, cooked and ate and had great time, so did their mom and dad in Vegas.
I don’t need a resolution for new year just remember to keep my calm and things will be alright.

Tuesday, January 3, 2017

what is a celebration?

What does a celebration or a holiday or a festival mean? well, we all have our own meaning and purpose to celebrate something, in my home this picture defined the holiday.
Everyone in Autism world knows what holiday and vacations are for us. Family time or celebration or festivities, no, not much of that. For us it means unstructured life and that leads to lot of heartache and meltdowns. And yes sometimes the celebration, family time and happiness comes around.
So this was vacation week and we all were home, No trip or big plans. We thought we will take one day at a time. We decided to introduced cooking and it didn’t go very well in the beginning but later it was much better. We worked on Homework and missing assignments and that absolutely was a disaster. But that’s how “introducing” and “anything new” works in our life. Offcourse dinner out at a favorite restaurant works well as a bribe.
So it was a week of having all the boys home. Too many hours spent together and it leads to meltdowns, not only for Anand, for all of us in different forms.
Ajey is home and I feel for him. The age difference is not 3 yrs, it never was but now it is way beyond years. My heart aches for both of my boys. They could have the best years of their lives together and have fun but it is not possible anymore. Seeing him struggle is one my biggest failure as a mother. I just don’t know how to console that kid. But anyway, after we had been through a storm we talked. we talked how to find, enjoy and celebrate those very few connected dots. The next morning, I saw this, brothers playing chess and my heart swelled with happiness and pride. Anand beat Ajey in all the games.
For me this picture defines what new year means to us. It was the morning of Dec 31st. I would like to remember the last day of the year. Just like that, life made so much sense.
Wish you all a very happy New Year. I hope it brings a new morning and changes many things in your life.

Tuesday, December 27, 2016

Crystal Ball.. every mother wants one.

A friend talked about mother's dilemma and  decision to let our kids have their own wings.
This conversation made me write today. We have been talking how it is difficult to let go of our dreams and wishes for our kids. Some times we forget those are OURS not theirs. They have their own dream and wishes.
The conversation took me back 22 years. When as a young 23 yrs old girl I questioned the system, rituals, customs and even my parent's thinking. I couldn't disregard the values but sure questioned their validity and way of thinking. I questioned the way a girl has to get married, how the choice of choosing a partner some times felt like a business decision. I so believed in love and respect not caste, socio economic status, education or money. I have come a long way and can see the value in every parents's dilemma but at the same time remember what it was to be 23, in love and ready to disregard age old traditions. I am so glad that I did that, That one event changed so many lives.
I argued, cribbed and fought over many traditions but in the end we found a middle ground and agreed upon. I am a mother now and I see the same struggle in my own life with my sons. It is such a difficult path and no-one can suggest you anything. Parenting is just made for you and you have to learn to deal with consequences of decisions you took.
Going through the discussion of a daughters marriage what parents imagine and think, no-one else can feel. We wish the best for our kids. but do we really know what is the best for them? We come from two different generations and yes the "best" changes every five years I think. I surely know for fact what was best or important for me 20 years ago that doesn't hold any value anymore. How can we expect our kids who are a world apart from us to expect that best? But here we are, as grown ups we have seen so many ups and downs in life and we learn from them. We want to save our children from that hardship what we went through, want to give them the "ready-made" solution we learned with difficulties. We want them to get the outcome of our experience and knowledge. We so wish we knew 20 years ago the stuff we know now. We would have made different choices and would have led different life, but those decision and hardship made us what we are today.
Thats what I told my friend, we just need to let go, let our kids grow and just trust our parenting skills and keep our fingers crossed and hope that things will turnout the best in the end. We just need to stand next to them, let them know we love them and no matter we will value and appreciate their way of life. what if they are not living our dream they need to live their own.
For my story I know there are some things worth fighting for. I know for sure that we need to endure some pain so get something beautiful like this.