13 is just a number

Many phone calls and emails on July 16th wanted one person who was turning 13 that day. That one silly, cute, handsome, goofy, funny, young man was taking it all in. I have been telling him that he is a teen now and growing big and that means more responsibilities and chores. I said, I will teach him to do the laundry now. He brother was very excited thinking his has someone to share his work and here comes the reply – mom 13 is just a number :)

Anand’s Bday is always a bitter sweet day for me. I am proud and happy to see him grow and learn new things. But at the same time I feel sad seeing him miss age appropriate milestone. I wrote – “It could be worse” but most of the time I feel why did it turn this way. Why do I have to feel this way?  Why couldn’t I just celebrate the 13^th Bday with a teen with teen tantrum? All he wanted was a dinner at Taco bell. Really? That’s all? Nothing else. No cake, no party just taco’s - only from taco bell.  We took him for ice-cream but that was not in the list.

Anand went to an overnight camp. I had to bribe him with some DS games so he would atleast try the camp. He got those games last weekend, So there wasn’t any game in the Bday wish list either. How I wish he had endless wish list like a teen.

But for him 13 is just a number. For me again it’s reminder to celebrate the good I got and work on things which we can improve and move on with what we don’t have.. Thank you Anand, you are right, 13 is just a number..

Another day of a different motherhood.

I have always said that I am not a perfect mother or wife material. My philosophy in life sometimes doesn’t match with social standard, and I am Ok with that.

With Anand going to camp a part in me was very happy. Not only just for him that he will experience something new and enjoy it. I was excited and happy for me too that I will for a change have a different routine. I thought I will not come back home from work and roam around city, watch movies or go to someplace for kids free dinner. It’s not that I haven’t done these things before. But I never was a free mom. I would go out and have fun and still in my mind I would think about them. But still sending him to camp was a ticket to a free world to me. I have been telling my older son that for these 4 days he is on his own. I am not thinking about cooking or laundry or anything. I am not sure if it is a sign of being selfish but I had this free time image in my head.

Yesterday I came back home with a little weird feeling. He was happy and having fun with the counselor, chit chatting about his game. I Got a nice good bye hug and off he went. On my way back I was not sure how I was feeling sad or happy. By the evening I couldn’t think of anything else but him.

So far I have called camp 3 times and I know he is not sad and unhappy. They didn’t call to ask me to come back and take him, that’s a good sign, right?

Now here I am thinking what is going on. I wanted this time for me but when I have it I am not able to enjoy it. Is it called motherhood? What happed to my freespirit? Why cannot just get out and not think about him constantly. I guess I do have some mother instinct. I do miss my baby and I know he is having fun. Now it’s my time to have some fun so I will a better mom when he comes back.

A different night and hope for a brighter morning..

It is a different night in Pandey household.

Anand will be 13 next week and I don’t remember him sleeping away even for a night. Kids on spectrum don’t get to experience the usual fun stuff so sleep over is nor something they would do. Few months ago when I read about Camp Havago I wasn’t sure if I really wanted to do that. But mom in me wanted him to have the usual growing up experience. It has been my mission to help my son find his circle of friends. He is in such a place that finding a friend is very difficult.

So here comes the night he is off to Camp for 4 nights. I cannot believe it. It started with “I don’t want any camp” to “ I hate camps” to somehow “OK, but you will pick me up every night” to “ OK, I will try” It started with a little push - you have to do it, Doc and school want you to learn few things” to bribe ( I will buy to a 3 DS) to OK you should give it a try. I have to give credit to his behavior therapist Doc A too. He was instrumental in explaining Anand how important the camp life is. How much fun it could be.

So finally we went to the open house and it changed everything. My son has a way to steal the heart. Those counselors are well trained and Anand is a charming kid. We went with a grumpy kid who went there only so he could eat out. But I brought home back a happy kid who was looking forward to the camp.

I couldn’t believe my ears when he said he will go to the camp. But he was worried how would he sleep away from home and we talked about it in bits and pieces.

So finally he is going to camp tomorrow and here we were planning and packing.

It has been a great Monday for him after few days in Maine and a movie and ice cream Monday with dad he was a happy kids. I am sure it might have hit him hard. I was trying to pack and trying to engage him and all of sudden it was just an outburst. “I don’t want to go to camp” He threw away all those ironed clothes, fought with dad and screamed and shouted. Within minutes all those stacked clothes were on floor.

I now think Ashish was right when he commented that Anand is going to a summer camp, nobody cares if the shirts are ironed or not.

So after talking and pasta dinner and ice cream dessert my son is off to bed with a calm mind and here I am thinking and wondering what the hell happened. I know he is nervous and it was just his way of saying that he is worried and nervous. I am in the same boat. I cannot wait for him to enjoy those days and have a different experience. I am looking forward to have 4 days to my self when I will have different evenings.

So here we are doing what we can to ease ourselves. Ashish watching TV, I am typing my blog and hopefully boys are sleeping.

Wonder how Autism changes world and its meaning to families like us.

Hopefully it will be a different morning and when he comes back on Saturday he will be happier Anand.

Passing along our dreams to our children

It has been more than 6 weeks and this thought is still stuck with me. Many things happened but I cannot write about them unless I take this out.I was resisting writing about it, didn’t want to make it a whining post. But it just stopped me from writing anything else so today is a day when it has to be out..

In March during one musical show I met two of my online friends. We had never met before face to face but it felt we have known each other for a long time. The common factor was Hindi Music. We three could talk hours about our love for music, what we liked and who was out favorite singer, musician and lyrists. One of them even runs a site for nonstop music. That day we talked how our kids are not so much in love with our music, what will they do with our collection after us and what not.

I always felt that our children are very lucky. They have exposure to so many things music included. They develop their taste on their own and then they choose what they like most. I shouldn’t and cannot expect them to love Jagjit Singh’s the way I do. They won’t hum or sing those old Hindi songs I grew up with but still as parents we give them the opportunity and drag them to many of these concerts.

The Learn Quest Music Festival was one of those times. I took Ajey to listen Malladi Brothers and he witnesses the magic of sitar from Ustad Shahid Parvez. He was happy and had great time. He had too many questions and loose ends and I needed to find someone to answer all these. The next day he listened to none other than M. BalmuraliKrishna and there he found the full circle of Hindustani Music. And that’s where I found how sad I was. I could see him enjoying and living the moment and couldn’t stop thinking how badly I so wish I could give Anand the same experience. I felt sad for me and him that I cannot provide and enrich him with this experience. He is missing an familiarity which is so important to me. As a mom at that time I didn’t need to worry if Ajey will ever listen to Hindustani Music I was just sad that Anand will not experience the beauty of this kind of music. He loves music and is a great fan of Pink Floyd and electronic music and whatever his brother or dad listened to. But it aches to think he would not know the beauty of sitar or ragas or a khayal or thumari or Bollywood music.

Well we can just try and hope for and admit sometime that we cannot pass on everything to our kids or atleast I couldn’t do that. I wish you very best that you can..

By the way if you want to read Ajey’s experience here is the link.

Who is your friend?

You meet people, some stick with you and some just fade away.

Sometimes they just make you feel that you are there as you. It may be a temporary feeling but at that point nothing matters for them just you.

I met some very wonderful, smart, funny, caring women yesterday. Some of them I met for the first time. They all are moms to wonderful kids but at that time they all were there just as friends. They all talked about kids, movies, TV  and schools.

 I was there just listening and was enjoying that conversation. So many times I felt I don’t belong there but many times I felt that I JUST belong there. It was a very comforting feeling and then when I talked about my boys. It was funny how all of sudden I felt I am in the right place. Many of them didn’t know me but it didn’t stop them from being there for me. It was not a support group for special moms but they made me feel it was. Their suggestion, their instinct and observations helped me look into different side. No doubt it was an underground network of moms who love each other and love each other’s kids.

Some time you feel that you have known people for long time, some of them you meet often but you don’t get that “feeling”, but at the same time you meet people and they just connect to you.

You are right “DH” – “These are wonderful, smart, funny, caring women with awesome kids” and yes I had one of those lucky days yesterday.

When you actually have to walk the walk.

Sitting in that support group room how mad and sad I was. There was a dad with a newly diagnosed kid, how many questions and worries and eagerness to find all the answers, to know what will happen next. How he wanted to know so many things right then and there. And here I was with so many answers and explanations. At the same time I kept on thinking I wish I had this knowledge 8 years ago. I so wish I had taken it seriously, I so wish I had paid more attention and still I wish I could do more. I could have given him my undivided attention, make him the top priority in my life.

But again there is so much you can do without going crazy. I could explain to him so many things, suggest  but when it comes to my own son I go numb and just cannot think enough.

Yes, it is hard to walk the walk on your own, we can show people how to walk, give them support, tools, books and sites but what to do when you cannot walk on your own. Feel helpless or ask for help? And what kind of help when you don’t even know what do you need? Strange isn’t it?

But we have to take our own step. May be one step at a time?

When we dont feel like "fitting"

Yesterday I wrote THIS and got a personal message from a friend of ours -

I know the context is very different ....
But many a times i felt the same. Sometimes one really does not feel comfortable at one place. That really does not mean the place has something wrong , people around are different than you or u r different. There is some sense which tells ... No not here ....
Many a times we act for a while and move on ... And even go there again and feel same way ... But we try to control what our mind tries to tell us.
 Kids usually don't do this ... Unless forced ... Even after forcing one has to just give up forcing ... Because they r just not happy there ...
We should try and make them feel they are lucky .. They are not forced to do anything ...
I wish ... I also can live in same way .... Do only that what pleases me ... Be there where my mind is .... Say what i mean .... And be in position to say whatever comes in mind ..... Most difficult thing .... We directly indirectly apply so many filters ... 
I wish I was so free ...
Your posts usually make my thinking process start .... I read them many a times ... And then keep on talking to myself ... 
This time i am talking to you ...
I usually don't talk to u as my mind wanders is very different direction with the same thread
. Please forgive me if anything i have written is hurting u ... I really care for u and i have great respect for u ..

When I was writing about Anand, only he was in my mind. Didn’t think it would touch any “adult” or “non-Autistic” cord. But it did. I appreciate the above respond which gave me another thought process.. We all are made differently and process differently. “J” is so right that we have so many filters and we apply them to just “fit” in the place. Our mind wonders, fortunately we know how to bring it back but kids especially autistic kids don’t have that ability. When the coach said to Anand -oh well, it was not a day for you but hopefully we will see you soon. And my son just turned into that angry man – “I am not coming here ever” I just didn’t know how to cover this up. The coach has been doing this for a long time so he knew what did Anand meant – he could read in those lines” I don’t belong here”. I felt apologetic and didn’t know what to say.. well, That’s what I am working on and need to learn more – to let my son feel that he is appreciated and lucky even with his differences.

But today I am feeling lucky to have friends around who understand why some times these filters don’t work in our family. Please know how much I appreciate the acceptance of non filtered life of ours..Thank you “J”

When you don’t fit in a place..

Which was meant to accommodate you.

Have you ever felt this? We have been told by Dr. A (Anand’s behavior therapist) that we should make extra effort to socially accommodate him, encourage him to go out and spend time with other kids. Dad and I also have been feeling the same but how and where was always a questions. When your special need child is in middle school you can feel the difference in social circle. They are not invited to so many Birthday parties or sleep over. You call his OLD friends and they don’t come running to your house anymore. So we thought of joining some social circle made for special need kids.

Last night was one of the try. Special Olympics’ basketball season in Canton. Thursday is always a busy day in Pandey household so I was little hesitant but Dad wanted to give it a try. So I met them from work and Dad brought Andy to Canton.

We met the coach and many more volunteers. They were wonderful. Andy was complaining of headache since morning so it was not a good sign anyway. But sometimes you just have to do what you need to do. A Dunkin donut treat brought him to Canton at least. Within 10 minutes we figured Andy doesn’t belong there. The assistant coach tried but it was just not the place for him. I saw a lost kid who was trying hard but just couldn’t be there. Finally in 20 minutes he was mad and angry. "I just want to go home ". The sound of the whistle, screaming kids was enough to abruptly end the basketball season for us. On the way back he was mostly quiet, we talked about importance of sports but he just didn’t want to go back to that place again.

That is the weird thing with Autism. It is custom made for you. You child will be only one piece. To find a perfect place or solution is very hard. They just don’t fit not even in a place which is designed to accommodate them. Well, the search begin again...

What to look forward to?

The year-ends and a New Year begin. Only on calendar though. We remain same as a person and just hope that whatever is not working out will take a 180 degree turn and things will be ok. We remain hopeful for another 365 days and then again analyze the past 365 days and wish for another happy days.. it’s a life cycle.

As kids go back to school today I am thinking about just last 2 weeks, mostly vacation week. We did some thing different for Anand and usual things for Ajey. Anand enjoyed Disney On Ice (I was surprised again) and I am starting to believe that I can take my son for musical events. He always loved music and I hope that he will continue to be a musical kid. Science museum was another story, he just walked around, was mostly interested in lunch and other stuffs to eat.

But what surprised me most for his interest in dinner party we had for Ajey’s friend. I had great time cooking and I believe those teenagers had greater time eating. They all came on that stormy night, I am thankful to parents who came later that night in 6-8 inches of snow to pick them up. When I was getting Anand ready to bed he said to me I want to invite my friends for dinner one day. I asked play date ? and he was - no mom, dinner. I want my friends to try Indian food. Now that blew my mind.. this sentence coming out of a kid who is not big into “trying anything new”

So this year that’s what I am looking forward to “trying out”

I hope I can find few of Anand’s friend who would like to try out his food and come for dinner. Will keep you posted. meanwhile I just wish for more "trying out new things"..