My Quotes- What I am thinking !!!!!!

WHAT I AM THINKING :-

What I am thinking - I am not the odd one out , It's your thinking and judgement that is making me "Odd one Out" !!

What I am thinking - Don't under- estimate me as a person with Autism, Just try to understand !!

What I am thinking - I wish they can understand me, I wish they know what I am dealing with !!

What I am thinking - I need your smile,praise,celebration to get me out of my world and join your world !!

What I am thinking - If you want me to join you, don't judge me but join me and I will join you !!

What I am thinking- You write,talk,tweet to get it out, I don't even know how to get it out !!

What I am thinking - Why they think something is wrong with me, Are they sure its not them !!

Week 4 - SON-RISE DAY 8 - Tickle Day

SON-RISE DAY 8 - R ENJOYED TICKLING !!!!!!

R was diagnosed with Autism 2 years backs. R is now 4 years old. We started SON-RISE program with R couple of weeks backs. SON-RISE is a Play-therapy program that I am volunteering for . The Play-Therapy is associated with son-rise.org to cure his symptoms related to Autism. I refer to word Green Light sometimes which means getting eye contact from R. When I refer to Stimming , it is the repetitive behavior R does while lost in his world

  

I had my another session with R. Now as soon as I go and visit R to have Play-therapy session with him. He quickly comes down with me. He has been very cooperative about it.
 
But I think I caused little chaos in R's playroom by getting Table and Trampoline in the room at same time. All these things gave R more reasons to do stimming by going under them in a order.
 
 
R will go through these stimming steps
 
 

 

1. He will stand facing to the mirror and move his face left and right pushing the mirror attached to the wall
2. He walks across the length of the wall
3. He will crawl under Trampoline
4. He will sit down on Trampoline
5. Now he will go under the table
6. He will crawl out of the table
7. He will go back to the mirror
8. And repeats rest of the steps in same above sequence

I did the same thing with R over and over again. This went on for about 15-20 minutes.Somewhere in between he passed by the baby book lying on the floor and took a break to look at it. He quickly went over all the pages. And then threw book in the air. He has been throwing stuff, even R's mom told me. So I joined him on basis of suggestion given to me by my twitter friend @HelenSm and threw soft toys in parallel in an open empty box. He looked at that and immediately stopped throwing stuff !! Though I was thinking he will throw more stuff.

And this time when he came to the table, I had a wooden puzzle on the table with all the pieces out of the puzzle. He came to arrange the puzzle. I tried to do the same. But the pieces that I will arrange, he will arrange them again.

Somewhere he came to me and I tickled him, He liked it and I ticked him more and more. He was laughing so hard and I ticked him more and more. He will come towards me and run his head into my lap. I just tickled him

We again played his one of the favorite running game and this time  I when I said 1,2,3 Run, He made some noises on each count.  I am still trying to figure out are they just noises or he is trying to say something similar. Sometimes I feel maybe because I want him to say something so badly, I am just listening in my head !!

After that he was tired and sitting down in deep thought touching his toes. Then he got up took my hands, flipped the light switch. This meant lets Go .

But I felt even though he was stimming in most of the session, R was more interactive also. In Next session I want to join him without any Table and Trampoline in the room.

Week 4 - SON-RISE DAY 7

SON-RISE DAY 7



R was diagnosed with Autism 2 years backs. R is now 4 years old. We started SON-RISE program with R couple of weeks backs. SON-RISE is a Play-therapy program that I am volunteering for . The Play-Therapy is associated with son-rise.org to cure his symptoms related to Autism. I refer to word Green Light sometimes which means getting eye contact from R. When I refer to Stimming , it is the repetitive behavior R does while lost in his world

Usually I am suppose to volunteer with R on Wednesday. But I told R's parents they can call me anytime when they need me. So yesterday was one of the day, I think one of the volunteer may have quit or just did not called in.
 
 I took my 2 yr old son with me. I left him to play with R's Mom and R's sister A. I  took R downstairs in the son-rise playroom. I always start with giving him Pistachio to set him in a good mood to play with me. He ate pistachio and started stimming with pistachio shell in between his fingers. I did the same. He gave me eye contact for a minute and then got up.
 
This time he went up and down in straight line over the couch cushions on the floor . I did the same in parallel to him. He holded my hands, which meant "Lets go out of the room". I again explained him nicely that " I love u so much, lets play, more we play, more magic happens". He went back inside the room.
 
 

 
Now we played with colored scarves. I count 1,2,3 and released the colored scarves up in air at "Hurrah". I will wait for him to say "Hurrah", But presently he just makes some noise and will release the scarves with me, But he won't take it all the way up, He will just release them at his eye level. After that he will jump on trampoline as scarves are falling down !!
 
After that he sat down on trampoline and was touching his toes and was deep in his thoughts. I did the same thing.
Now he again wanted to go out of the playroom, so I distracted by playing running game. I will count 1,2,3 run and we ran. Then on second time, I waited for him to say something, He made some noise on each count .I praised him for making noises even though they were not exact words and we ran. He played this Twice only .
 
Now he went towards the wall and was trying to like push the wall with his face going left and right. I did the same thing.
 
Then suddenly he again wanted to go out side the room. This time I put my hair in front of my face and said " Where did I go"? He came to me and removed my hair. I tickled him and said "1,2,3 I see you" !!  I will give him chance to say "I see you", but I could not get out even noise on that. This went on for about 25-30 minutes. 
 
After that he started rolling on the floor, I rolled with him.
 
Now he seemed tired and was throwing away things in the playroom. Infact I asked for suggestions  from my friends at Twitter as what to do in this situation? 
 
 

 
To calm him down I gave him Playdough. He sat down for like 20 minutes stimming by rolling piece of playdough in his fingers. He does not like anyone else touching his play playdough. I already had taken small pieces of play dough before giving it to him. I started stimming with him. The times I brought play-dough in front of my eyes, He looked at me for couple of seconds.
 
 

 
After that he was ready to leave, so I praised him for letting me know even though it was by holding my hands and bringing me to the door.
 
As we were going up my son heard my voice and came running towards the door. R does not like someone standing in front of the door, when he is walking up from playroom, so he started screaming. I asked R's mom to come and I took my son away from the door to calm him down.
 
 
I am still waiting for longer eye contacts and words from R !!

Week 4 continues with special Hug from R

Why a HUG from R is big deal to me ?

People might think why I am being so crazy about Tweeting and writing about getting Hug from R.  But this HUG was just not a Hug it was a Special Hug, it was hug of acceptance and acknowledgement of me in his life. I don't know if this was one time thing or I will be getting more of those hugs from him !!

I have known R from the day he was born, I went to visit him and his family in the hospital to see him the day he was born. I have been going to R's house since he was just couple of days old. He was always surrounded by terrible allergies and we have to be always careful what to make him wear, what to give him to drink and eat. At the same moment I was never able to figure out why he won't respond to me, why he won't play with him.

We were not aware of word called "AUTISM", But now I know what it is , How it affects you and relationships.....Every step from R is a big deal to me.  I am just hopping I can receive more and more hugs from him.

How did it happen?

My son Y and R's  younger sister A are just 2 days apart. I got a Gluten and Casein free cake which even R could eat , R's eyes were on the cake whole time. He just wanted to have the cake. We visited R's house to celebrate Y and A  birthdays.  R was just looking at the cake during whole time. Finally everyone got piece of cake. R started eating his cake with hands. He was enjoying it. I took my piece of cake and sat down in front of him and started eating with hands also.

Gluten and Casein free cake for A

R saw his Mom eating the cake and he went to give her hug. R's mom told me that he developed this new habit, anytime she eats something R will come and give her hug. R was back to his seat to eat cake again. Then he was on his way to something, I ended up asking him with my arms wide open "Can you give hug to me" And surprisingly he came to me gave me a Hug. This has never happened before. I was full of Tears and Joys from my heart.

Vanilla and Orange Marmalade cake for Y

I just hope it is not one time thing and will be looking forward to more hugs :)

WEEK 3 - SON-RISE DAY 5 and 6

SON-RISE DAY 5


R was diagnosed with Autism 2 years backs. R is now 4 years old. We started SON-RISE program with R couple of weeks backs. SON-RISE is a Play-therapy program that I am volunteering for . The Play-Therapy is associated with son-rise.org to cure his symptoms related to Autism. I refer to word Green Light sometimes which means getting eye contact from R. When I refer to Stimming , it is the repetitive behavior R does while lost in his world



R is on Gluten free and Casein free diet. R is also non-verbal at this point, just makes some sounds but that's about it.Anytime he makes some sound we give him response and show our encouragement so he can hopefully say it clear next time.


I was thinking to write about it on the day I went and had another session with R. R seemed very tired and restless. This time he did not want to stay in Son-rise playroom. I was finding hard to make him stay and play with me. I was finding it hard to get through him and gain his attention. I entered the room with a clown nose and shaking the head of Tweety bird to grab his attention. It did worked to make him stay for little bit in the room.

R is not eating properly nowadays. Stomach upset ,R started jumping on trampoline and sat down on it. He was stimming again. He was touching his toes, I started the same thing- sat down in front of him and touched my toes also. He gave me a look and then I presented him Baby Book. He looked at the book for less than a minute, went over the pages in the book quickly and now wanted to get out of the room. He took my fingers and took me to the door, which meant open the door. I praised him for letting me know that he needs to get out of the room and we left for the day.

SON-RISE DAY 6



I had another session with R. I went to visit R with my 2 yr old son. I asked his parents if I can go and have another session with R since I felt incomplete after the previous session. They happily agreed. They are wonderful people with so much patience and love for kids.

R was not ready to come down to basement with me, So I got some Pistachios for him.,his favorite snack. R came down with me. He sat down and started munching on Pistachios, I pretended to do same. Now he tried to feed someone else also "Gymbo the clown" !!

Gymbo-the clown

After that he walked across the perimeter of the room, I did the same thing with R. He gave me a eye contact ,I quickly got colorful silk scarves in my hand and raised my arms up to bring them down. He loved it. This went on couple of times. I said "Hurrah" alternate times anytime I raised my arms up to bring colorful silk scarves down. The time I won't say anything he will give me a scream to match my "Hurrah".

Now he was no more interested in this game, so sat down and was touching his toes. I did the same thing and sat down in front of him. This went on for quite a bit. To break the silence in a soft way I said "OM" very quietly and softly.. He tried to bring up the tune in which I said "OM".

After that he again holded my hands and took me towards the door. I praised him for letting me know that he wants to go out.So we left the playroom

I am still waiting for the day when in one of these sessions R will say "Hurrah" and "OM" with me

WEEK 3 continues....Asking for help not easy baby-baby !!

ASKING FOR HELP HAS NOT BEEN EASY BABY BABY !!!!!!!

I have to get this out of my chest. Asking for help is not easy. Asking for help was not easy for R's parents and family also. But when there is no choice you have to JUST ASK.

The day we realized that we will need about 12-15 volunteers for R's SON-RISE program, we started thinking where we are going to get volunteers, where we will start. Considering this will be an ongoing project depending on how R will respond to it. We realized we will constantly need volunteers everyday of the week.

We started with Churches, Libraries, Web Postings, Facebook,Twitter,College campus. We sent out hundred's of emails, asking everyone we could think for help. But nothing was easy.

Especially the times when people told us "NO" with very sophisticated reasons. My favorite is from one of the library. Library told us to put the flyer up in library we need to be associated with non-profit.org , so I told them "Play-therapy program is associated with non-profit son-rise.org". Library allowed us to put the flyers up for R. But story gets more interesting after this. I went to library to refill the flyer box and saw all the flyers were gone. I asked myself  "I don't think people took these many flyers, because we have not gotten any calls yet for volunteering".
So I went to front desk at the library and they told me that "flyers were removed", I asked them "why were they removed ? " Here comes the smart answer for me "Since the volunteering will be at home and not at some public place, they cannot risk putting up flyers". Now how do I answer that !! I am not saying they are wrong or right, But It was not easy !!

Another incident was from one the Internet groups, where I asked one of the groups which has about 1000 members to send an request for volunteer considering it was Autism awareness month also. But the group organizer gave me  "there are nearly 1,400 members in The group, many of them with compelling stories. As it is, I spend 2-3 hours a day on group business and send out many e-mails (some say too many...lol). If I were to open up the site to allow every one with a cause, no matter how worthy, it would start a torrent of e-mails and appeals,,,so I can't do that."
"I suggest that you might want to start your own group whose purpose is to provide a forum for local individual causes."  - Again  I am not saying they are wrong or right, But It was not easy !!  In the quoted lines I replaced Group name with underlined group 
Also here is the interesting part after couple of days I see that group organizer sends out email for "Renting a property which belonged to his family member."....Interesting. I thought let me try again since the group email is being used for House Rent , but this time when I send out email I did not got any response at all . ....
Again  I am not saying they are wrong or right, But It was not easy !! 

Another favorite when we called some of the volunteer organizations for help, they won't help us because we are not non-profit organization but a group of private people which we call family.Again I am not saying they are wrong or right, But It was not easy !!

 
And so many more stories, I can add to this list where even people offered to help but did not come forward at the time we were in need of that help . We send out text messages, emails etc.Again I am not saying they are wrong or right, But It was not easy !!

I need that EASY button to work for REAL....LOL

But all these life experience incidents just made me stronger and now I say as I Tweet "I will never stop helping and stop asking for help for people who need help" 

There are so many people who did help us and are still helping us. Because of this help we currently have 4-5 volunteers for R, we still need more and looking for more and will try again and again to get more !! So I tweet and follow " Start day with big smile and positive thinking, where there is a will, there is a way !!


SON-RISE DAY 7


R was diagnosed with Autism 2 years backs. R is now 4 years old. We started SON-RISE program with R couple of weeks backs. SON-RISE is a Play-therapy program that I am volunteering for . The Play-Therapy is associated with son-rise.org to cure his symptoms related to Autism. I refer to word Green Light sometimes which means getting eye contact from R. When I refer to Stimming , it is the repetitive behavior R does while lost in his world


I had another session with R, This time the session was more about joining R in his stimming activities. I got him down in the play-room by giving him with his favorite snack Pistachio's. I opened the shells to give him the pistachios and He was eating them one by one. Once we ran out of pistachio he used the shell of pistachio for his stimming activity.



He took the shell in between his fingers, went into his thoughts and the shell was revolving between his fingers.Infact has anyone tried it, it feels really calming,relaxing. I joined him in his stimming activity and he gave me couple of eye contacts. Infact I remember one of them lasted for 2-3 minutes also.

After that he got up and started spinning the basketball inside the room, I again joined him and did the same thing. Now R got some other idea for stimming  :-

1. He dropped the basketball in the net, Ball rolls down on the floor.
2. He kicks the ball under the trampoline
3. He goes under the trampoline to get the ball
4. He lies down next to the trampoline with ball in his hands and is deep in his thoughts
5. He crawls with the ball out of the trampoline
6. He walks across the wall next to it with ball in his hand
7. He drops the ball again the basket
8. And repeats rest of the steps in same above sequence

I did the same thing with R over and over again. This went on for about 25-35 minutes. Now he went to grab my fingers took me towards the door. This meant "Lets go out of the room". I praised him for letting me know.

During that praise as soon as he gave me eye contact.I quickly grabbed the colorful scarves and counted 1,2,3,Hurrah . He tried to imitate me and screamed when I said Hurrah. we played this game for 3-4 times.

Now he again grabbed my fingers and took me towards the door, flipped the light switch. This meant "Lets go out of the room". I praised him for letting me know. He still was upset and wanted to go. But this line from my heart worked for R, He left me thinking :) I took his soft,tiny hands gently and said "You know I love you so much. This is time to play, This is the room where magic happens. The more we play, more magic happens ". He immediately turned inside the room to play happily. This must be the first close conversation where he seemed to understand me so clearly , I ever had with R.



After that I made him run with me on the count of 1,2,3,4 and 5. He did that once.He seemed tired. He sat down and I sat down with him. He was now rubbing his toes and deep in thoughts. I did the same thing.This went on couple of times and after that he was just ready to go again. So we left the room.