Wednesday, October 31, 2012
It took me whole day to decide how would I write about it.. I knew very well that words couldn’t do justice with my emotions. But finally I decided I had to, as I know I will never find the correct words for the stage I am in..
Yesterday I posted about loosing the friendship and then I got this email. I consider myself a strong woman but these words made me cry and I get teary eyes even now thinking about it.
He didn't lose a friend; he gained more understanding from a friend. He is always our friend and always welcome in our home. :)
I was upset that day only because he hurt my grandma, but now I realize that he couldn't control his anger, he will always be my friend.
WE ALL LOVE ANAND THE SAME AS BEFORE.... NOTHING WILL EVER CHANGE THAT.. :) Please do bring him home whenever possible.... we will visit him too...:) – Auntie
These girls amazed me; they made me realize that there is something called friendship, affection beyond boundaries and label. I am touched and proud.
The girls are 9 and 11. They blew me away with their compassion. I just cannot express how blessed I feel as of now. This makes me very hopeful that all our kids will always have friends …
Tuesday, October 30, 2012
The stormy Monday brought back few memories… We were home but very bored. When you CANNOT go anywhere that is the time you feel like going somewhere.. So we were talking about what to do whom to call and can we go to someone’s house.. All of Sudden Andy says nobody invites me to their homes. I didn’t know what to say and how to react so I just said It is not one of those days.. Not safe out there, why don’t you play with Legos.. And off he went to the basement..
It got me thinking.. After the last episode in one of our friend’s house I am afraid. Don’t know what will trigger his anger and how will he react. Suddenly I felt so sad and overwhelmed with the feeling that my son has lost all of his typical friends over the years. I remembered how my friend’s daughter asked her mom “how could he do that” how could he fight, shove and kick grandma. Those teary eyes had only one question how could he? Her mom explained whatever she could. But at the same time I knew Andy lost his friend and the worst part it he doesnt even know it, He doesnt know that he will never be the same for them, They will always remember what he did that day... Those two girls were his favorite and he always looked forward to see them and go to their home but not anymore.. I don’t know that day what did I cry for.. His behavior (which I know he has no logic or control over it) or him losing a friend..
Saturday, October 27, 2012
It was a difficult question or rather I say risky question..
When I said “ Anand will you come with us to JFK to drop AJ?”
I didn’t know and couldn’t imagine what will be the chain of incidents. I wanted to give it a try and was willing to take the risk but with a fear in my heart – what will happen next?
JFK is Anand’s previous elementary school; He was there till half of forth grade and then moved to language-based classroom in another school. My older son was in JFK and we loved everyone there… A great school and the very best teachers.. So when I learnt that they need volunteers for their Saturday fundraiser AJ obviously wanted to be part of it. For years we were in that school everyday and all of sudden that school was not part of our life anymore.. Anand had tough year in 4 grade, few kids were mean to him and we all were coming in terms with Anand not belonging there So we all welcomed the change of school.
This morning AJ was ready to go and I thought I should ask Anand, thought he might want to go.. He comes to me and says Yes, But if I see “M”, ‘J” & “S” I will punch them for bullying me in 4 th grade.
I was just shocked and didn’t know what to say. It was not the reaction I was expecting and didn’t even know he remembers all that.. (Whom I was kidding, he remembers everything)
Finally Dad and I talked to him and somehow we could convince him (really could we?) not to punch anyone in any case.
The big brother came to rescue that they may not be there anyway, they are in middle school.
Finally we went to JFK, not many people around as the event was supposed to start an hour later.
He went running to Gym, went to his 4Th grade classroom, men’s room and café..
Finally came out and walked around the playground. The principal came and asked him “ Hi Anand, How are you?” She asked how is his school and few more questions.
He was very happy that she remembered his name…
Finally we said bye to everyone and left for home.
He was so quiet; 5 minutes drive seemed so long. I don’t know what was he thinking but I am happy that I took him there.. Memories may be sad and bitter but at least he could experience it. The next trip may not be that difficult..
Thursday, October 25, 2012
After spending the whole day in Autism Consortium We both were exhausted. Emotionally I was just too tired and that caused for a celebration.. It was dad’s bday and for my boys it’s all about a dinner out. So a night before I asked Anand that if it was Dad’s bday who should choose the restaurant. If given a choice he will eat only in McD, Chipotle, five guys and Panera. We had many fights over it but thanks to Dr.A (behavior Doctor as Andy calls him) he could consider thinking about something else. He responded it should be dad’s choice but I am sure he would want the Panera. I couldn’t stop smiling and asked what if he wants to go someplace else and finally he said We will go whatever Dad wants :) That’s was a BIG deal.
On my way back home I was in different world, where Nicole Barros speech was comforting, Kate Supple speech was a rude awakening. when we came back home and my Calendar popped for Franklin Sepac meeting in Panera.. And I was like oh lets go to Panera.
So poor dad didn’t have any choice we all went to Panera, (the Sepac team was a no show that’s another story) and had a great dinner. I cannot stop thinking how happy he was with the choice of place. But he promised the next place will be something else than Panera. He didn’t care for cake but a big cookie for dessert was enough for Dad’s B’day celebration…It was one of those sweet, sad day for me.. One of the best dinner we had in a long time... No fight for many refills of coke or many cookies ... how is that for a good happy Birthday dinner... steakhouse can wait for another lunch date.. Ashish !!! I promise..
Wednesday, October 24, 2012
I am a mixed bag today, Hopeful, happy, sad and scared!!!
I spent the day with Ashish (By the way Happy Bday my man.. There is no way in this world I could do anything without you !!! you are my strength and everything) in Autism Consortium in Boston - reading, observing and listening whatever is going on the Neuroscience world. I didn’t understand most of it but one thing I got that things don’t seem very optimistic if we don’t act on this epidemic soon.. I met so many parents, heard couple of those and was wondering we all are in this journey for long haul. We all want the same thing, a bright future for our children. Looks like we are looking for a miracle.. I am sad thinking how many parents are going though same agony and feel helpless. But the same time I feel great to see how many people are working hard so our next generation will have some answer. I was shocked to read the stats that 90% of cancer patients sign up for clinical research but only 5% families with Autism will participate in studies !!! I wish I could knock door to door and ask all of you again , If you know someone please let them know science needs their help to find a better future for our children and grand children.
Today I write this with a sad, heavy, overwhelmed but hopeful heart that we will be successful, we have to .. No choice..No question asked..
Tuesday, October 23, 2012
It was one of those days when I woke up with some weird dream. I blame it to “MOM-NOS”’s blog and her description of Autism. She described really well and last night I just couldn’t stop reading and thinking. This morning I was just not me. Then got a call from one of the friend about a support group she is part of, It was supposed to be a quick call but she understood that I needed her at that time and she really made me feel better. Then I had another friend over..and all of sudden it was just a great day. I never knew these ladies but now I feel that these are the ones who really know me well. We all are from different culture, background, language and economic status but deep down we all are same. We all special moms and one thing we have in common – our children.our special children. They share my dream, they understand my fear and they know my pain.. We laughed, we shared our pain and we talked about families and kids like we have known each other for a long time.. Its just one of those days when being a mom mattered nothing else..
Monday, October 22, 2012
Most of us think in that direction when we go through something difficult. We are told to believe that everything happens for a reason..
If things go wrong we are consoled that it could be worse..
One day I was talking to one of my dear friend about my experience in Children's hospital. "S" and I work in the same company and despite the BIG difference in our positions in company we share the same "PDD-NOS" in life. That makes us forget the Job and money and talk about our kids and other stuff we are going through..
So when I met "S" for a lunch. He told me about one of his junior in college died of cancer and she had a year old baby who is autistic. the way he told me I would never forget the tone of "here is the kicker..." I told him how grateful we should be that our kids are verbal and getting help, things could be worse for us and right away he says - No, It never gives me peace thinking it could be worse.. I would never take it as an answer.
It got me thinking how differently we deal with the same situation. There are days when I cry and feel and question - Why me, why only me and there are days when I feel that it could be worse. But "S" is also right, It never answers the question we have. It never consoles him and somehow the "it could be worse" never works for many of us..
I have been asked many time about Anand's disability and Its always hard to answer and describe them.
I came across this blog and I don’t think I could answer any better than this.. Thanks - Mom-NOS
I came across this blog and I don’t think I could answer any better than this.. Thanks - Mom-NOS
Sunday, October 21, 2012
We grew up listening a folk story In India about a witty grandmother.
She worked very hard to please the God Finally God appeared in front of her and told her that he will fulfill ONE wish.
She was a smart woman and she had too many things to ask for, She was blind, Poor and her daughter in law couldn't have children.
Now she was thinking One wish??? and finally she asked that she wishes to see her grandson playing with golden toys.. Go figure !!!
Being a mom is all about wishes and thousands of them I think.. But at this point all I want is patience.. I day dream enough about having a perfect life. When given a chance I can have a big list of what I wish and want. But right now all I can think of is being a good mom. I think my son needs a patient mom nothing else as of now..
I am working on it.. There are times when I feel like I cannot do anymore but soon I gather myself and know all I need is all of you around me.. I am not alone not at all and yes.. all I am asking for is patience ..as of now !!!
Saturday, October 20, 2012
Its weird how one can feel blessed, thankful, sad, depressed, overwhelmed and embarrassed at the same time?
Yesterday was one of those days.. I get when Anand feels frustrated and misbehaves and gets angry. But what I saw yesterday was new to me. I am just hurt but at the same time I am amazed how lucky I am to have those people around me who still love him with all those limitation the same way they loved him the day he was born. They forget that they are hurt and horrified.
For me it is thanksgiving when I feel thankful that they are there for me, for him and for us.
I so wish I could just go back and erase it or not let him go alone but I had never seen him like that. It was “his” home and I can totally get it what was going on in his mind but I cannot stop wondering how many will understand him but right now I am thankful that his Deepa auntie gets him..
Friday, October 19, 2012
These days this is the question I ask everyone I talk to..It’s my mission to find people whom I can relate to, talk to about my son. After my recent India Trip (yes, You will hear about pretty soon) I had been thinking about many Indian parents who face the same issue when they go home .. (Well, this time I didn’t feel like home but that is the topic for another write up) I did my Google research and couldn’t find any Indian specific group. I turned to my friend Facebook and didn’t find anything there either. I updated my status “ Looking for a support group for Indian parents of children with special needs. My 12 yr old son has diagnosis of PDD-NOS. Any reference and suggestion appreciated. If you know anyone in the same situation please let me know – Thanks.”
Wednesday, October 17, 2012
I have been a lazy writer, Started writing last year and then suddenly it just stopped. Didn’t feel like writing anything about any thing.. But Now I think I have a different approach and will do it for Anand.
Anand, I love you and will always love you.. No matter what.. Thank you Ajey, you are my strength, my inspiration and Yes a big push, Darling It's you in these lines.. I promise one of these days the food Vblog you always want, will be here too. Love you and I am very lucky mom to have you.. But you know you still stand after your dads :). Always remember today's walk and our talk...:) You dad is always the MAN with me...
Thank you Amy Weinstock, you must have said to many many moms that they are not alone in this but yesterday I felt you really said that to me and for a change I did feel that I am not alone... Everything you said made me feel better and STRONGER (including finding a group and get drunk once a while).. And Yes I will fight for my son..Thank you for everything you do for our kids..