This is a story of Miracles. This is a Story of Faith . This is story of Overcoming. Overcoming Challenges Every Single Day and Having a Smile . Never questioning WHY ME ? We understood as parents that God would never give us something that we could not handle.
Siddarth Gives Me Strength , His Smile Encourages Me , makes my heart Smile & Heals me with his touch .
Siddarth is here for a purpose and Has transformed our lives ever since he was Born !!!!!
MIRACLE FROM BIRTH
Siddarth was born to us after 10 years of our marriage. He surely was born after a lot of trials, prayers and infertility treatments. When in my 35th week, I was all excited preparing for his crib and clothes, parents planning my baby shower, Siddarth decided to come out into this beautiful world EARLY. I went into labour on Dec15th morning (Friday) and he was born Dec 18th very early morning (Monday) at 1 am - YES 3 days of labor. Siddarth did endure lots of stress on Sunday late afternoon. Hence doctors with our consent decided to go for a C-section. He was pale blue and did'nt breathe. Immediately he was rushed into the NICU (Neonatal ICU) and was put on life support. (They let Anil (my honey) who is my strength , my rock in our lives ) see Siddarth after he was stabilized. His first thought was Thank God for saving Siddarth’s life and blessing us with a miracle child. Anil’s parents were there with us during this who gave lots of strength to Anil.
When I woke up the next morning & recovered from the daze from all the medications at about 6 am Anil has been running around the whole night taking care of things – it was very chaotic but God kept bringing right people at the right time to help facilitate things. I vaguely knew what was going on. the question I asked was where is my baby ? Anil just smiled :) I knew something was not right. I asked Anil to bring a pad and pen. I asked him to write this and put it on the incubator ...
MY NAME IS SIDDARTH SHEKHAR. I'M A MIRACLE FROM GOD. BY THE GRACE OF GOD, I AM 100% HEALTHY BOY. I AM A FIGHTER AND OVERCOMER. THANKS FOR PRAYING ME AND SHOWERING YOUR LOVE ON ME AND MY PARENTS.
We have come to understand that there is power in writing your goals & dreams. We saw it work right infront of our eyes. He was off the life support & respirator in 11 hours and incubator in 5 days. THE DOCTORS WERE SURPRISED THEMSELVES. What a fighter and a overcomer … right from the second he was born … True champion … The staff at NICU (Kaiser Hayward, CA) were the best of the best staff I have seen – so gentle, caring and loving.
OBSERVATION
He was always a happy boy. He met all the milestones till he was 18 months. When he was 9 months old, his grandma (my mom) passed away due to cancer. The stress, loneliness, hurt did affect him.
One fine day I saw him starting to isolate himself from the crowd. Isolate from us when we were in parties. I saw him do Unusual Behaviour a lot of times. We were sure something was not right but did not know what it was or why it was happening or why was he behaving like this. We felt this was a phase he was going through and did let go but kept a close watch on him. We did not want to ignore and we did not. Deep down inside we were scared but continued to pray and have faith.
Also we did see that there was delay in his speech. Siddarth dint say too many words - amma (mom), akka and aggha (for his dad) and may be few other words which was not clear but we could make what he was trying to say.
Also we were seeing several odd behaviors. The more we tried to stop him and distract him the more he started doing. Some of his repetitive activities were …
· While playing with a car, he would turn it over, lie down and spin & look at the wheels.
· He had a tricycle. Instead of sitting and riding it, he would turn the tricycle upside down and spin & look at the wheels.
· He knew how to operate a DVD player at age 2. He would sit near the DVD player, lie down and OPEN & CLOSE the DVD player for a long time.
· He started getting agitated with confined spaces, too many peope and too much noise ... like in grocery stores, in birthday parties and sometimes in park too even though it was outdoors.
· He was not comfortable going to even people he was familiar before. He started ISOLATING himself.
· He started a behaviour called STIMMING (http://en.wikipedia.org/wiki/Stimming) - such as walking looking at the corner of his eyes, thumbing sucking with nose picking - this happened when he was in STRESS.
DIAGNOSIS
Kaiser was monitoring siddarth every 6 months since his birth. When he was 18 months old,we had an appointment with his DEVELOPMENTAL PEDIATRICIAN and things changed. While in the evaluation room , half way through , I popped the question even though I was not too comfortable. "WHAT IS AUTISM" ? The Doc asked me " WHY DO YOU ASK"? I said I have some concerns. I mentioned the behaviors we had seen at home. She changed the way she observed him. Everything changed after that day. He was given the diagnosis of PDD-NOS. (Pervasive Development Disorder - Not Otherwise Specified). We did not know how to react or respond. Deep down we were feeling guilty – What did I do wrong? Why him? Why this? Etc etc.
At this moment we were faced with few daunting questions.
1. 1. Temporarily ignore the diagnosis and act as if everything is fine waiting for more time to heal.
2. 2. Feel sorry and develop guilt feeling.
3. 3. Question the diagnosis and the doctor thinking this can never happen to our baby. Hence live in DENIAL.
4. 4. Face it. Accept it. Act on it right away. (If not now WHEN? If not us WHO? If not for our baby, WHO ELSE?)
The most expensive option is #3.
We choose option #4 - to accept the fact that Siddarth did need help and decided to ACT right away as we were running a race against time. If we did not and wait for time thinking everything will be ok, then the kid will pay a huge price later in his life and we as parents regret thinking we should have done this and that. Its not right and fair for the child when there is so much help, resource and support available. So PLEASE if you need help, ask. If you know there is a situation, face it. Once you know what to do, act on it. NOW.
DIET:
One of my dear friend Arathi mentioned about some doctors called DAN doctors. They care part of a network called DEFEAT AUTISM NOW . Siddarth was only 2 then . We went through several tests. I first thing they did was Food Allergy Tests. They found he was Allergic to GLuten & Casein. ( protiens found in Wheat & Dairy ) . This is not an allergy where he would break into hives. He would always have a runny nose . We always thought he had a cold . But in the real case, he was not able to Digest the Food he was eating and the body was rejecting it in the form of runny nose.
Another thing we used to notice was , He was always Constipated. Any food we gave him , he had a hard time passing stools.
The DAN doctors mentioned that the digestive tract is the CPU of our body . Everything starts there.
Most children digestive tract is very sensitive when they are young. There are lots of food they are unable to digest it and hence sometimes need to stay away from it for a while until they grow out of it.
For eg: When kids eat sugar, they get Hyper. The body and brain is not knowing what it is supposed to do with so much sugar. So they go crazy and start running around and then crash.
The food I kept him away was : WHEAT , DAIRY , SUGAR , NUTS ...
All his food is based on SOY , CORN , BROWN RICE , BARLEY , EVERYTHING GLUTEN FREE.
Difference : I saw his speech get better in 6 months. I saw his behaviour get better . His eating habits get better. He started putting on weight which was flat from one year .
It is a lot of work. But it is what any parent would do ...
RESOURCES & THERAPY
We were blessed to have these services provided .
Once we got the diagnosis from our Developmental Pediatrician,we got help from the Social Services Department in Kaiser .
** They gave our case to the RCEB (Regional Center of East Bay). RCEB is a private, non-profit corporation providing services and supports to individuals with developmental disabilities under contract with the California Department of Developmental Services.
** RCEB started Siddarth off with Early Intervention (EI Program) - one hour - once a week.
Ms. Jennifer Brown came and changed his life completely. She transformed his behaviour , social, gross & fine motor skills. She relaxed his mind and gave me projects to do on a weekly basis.
(Child development research has shown that the rate of human learning and development is most rapid in the preschool years. http://www.kidsource.com/kidsource/content/early.intervention.html)
** RCEB started off siddarth with Speech Therapy - one hour - once a week.
Ms. Karem was a blessing. She was a calm & composed girl and had tons of patience. She articulated on his sounds, pronunciations and gave him and us alternative signs of communication - through SIGN LANGUAGE. This was a big stress relief to all of us.
A lot of times when kids don’t start speaking (and hence unable to communicate) after a certain age, they start to build a certain amount of frustration for various reasons ...
1. They are trying to tell you some thing by vocal variations and we do NOT understand.
2. We try to communicate but they are NOT able to follow.
Example: Siddarth would take us to the kitchen and point to the counter top ... We would carry him and ask him if he wanted Fruit? Milk? Water? Cookie? It was like he knows what he wants, but he is irritated that he can’t say it :)
Just like when you have an severe headache and you want your medication. You call your spouse and ask them to get you your medication. How would you feel if your spouse is now asking you WHERE IS IT? You reply it's in the kitchen - and he asks you ... is it on the counter? drawer? cabinet? pantry? medication box? You get irritated ... :) The difference is that you have the ability to express.
We saw him make radical improvements.
All of these therapies were at home and we felt he needed to go out of the house and have more SOCIAL interaction with other kids as he was opening up a little to people .
He was more friendly to strangers than before .
I then requested RCEB again to give us a group setting . After a long battle , Siddarth was given a group setting with CSLOT .
** CSLOT ( center for speech , language & occupation Therapy )
http://www.cslot.com/
He learned sensory skills , communicating skills & learned how to deal with other peers. He learned table manners, He learned to sit in circle time for 15 mns and listen to a book , etc etc
Am writing all these as these are very normal behaviours for a normal growing child .
But for kids in the spectrum, it is AQUIRED .
It is a wonderful feeling when you see your child blossom .
eg: When you see your child put on his own shoes and he is 3.5 yrs old . This may seem a small deal but this is a huge achievement for Sid .
We saw him make radical improvements.
All of these therapies were at home and we felt he needed to go out of the house and have more SOCIAL interaction with other kids as he was opening up a little to people .
He was more friendly to strangers than before .
I then requested RCEB again to give us a group setting . After a long battle , Siddarth was given a group setting with CSLOT .
** CSLOT ( center for speech , language & occupation Therapy )
http://www.cslot.com/
He learned sensory skills , communicating skills & learned how to deal with other peers. He learned table manners, He learned to sit in circle time for 15 mns and listen to a book , etc etc
Am writing all these as these are very normal behaviours for a normal growing child .
But for kids in the spectrum, it is AQUIRED .
It is a wonderful feeling when you see your child blossom .
eg: When you see your child put on his own shoes and he is 3.5 yrs old . This may seem a small deal but this is a huge achievement for Sid .
Siddarth made significant improvements in CSLOT. Thanks to the teachers . The student to teacher ratio is 1:2 . They know what they are doing . They know the individual needs of the child.
We saw Siddarth use single letter words instead of Sign language .
YEAAAAHH !!!! it was one victory at a time . guess you can feel my joy at this time .
Never underestimate the Power of FAITH.
Siddarth was approaching 3 in few months and had a long way to go in growth. After his last round of evaluation from RCEB , I requested for ABA therapy .
**ABA - applied behaviourial Analysis http://www.brighttots.com/aba_therapy
This was a major turning point . He received 10 hours of ABA per week from EASTER SEALS. He had some amazing People come and teach him turn taking , help him with fine motor skills like hold a pen , draw on black board , Eat with a spoon and fork etc , , They Structured his Life and most of all His Repeated Behaviour Came down Drastically.
All This was fun to him as it was just playtime with a new person . But it was stress on us a lot of times . But I dint let it get to me . We found my outlets too. As if I let it get to me , I would never be effective in helping Siddarth .
Siddarth 3rd Birthday was approaching soon .
This meant that all his services from the RCEB ( regional Center ) would STOP .
This was not a good sign for us . Siddarth had shown Significant improvement . He had started showing signs of major Improvements . This was good news to us.
But now that he turned 3 . His services were going to stop and He would be turned into the SCHOOL DISTRICT .
Lets take a break and I am going to give you an Analogy .....
**You have a well running car . You go out of town for maybe 3 - 4 months . The car has not been used . What happens to the battery . It needs to be recharged as it has died on you or sometimes it needs to be replaced. Sometimes it happens with a Well running car too .... battery suddenly dies on you ....
THIS IS WHAT HAPPENED to SIDDARTH .
ALL of a sudden when he turned 3 , on his 3rd birthday in dec 2009 , all his services stopped.
They ahnded him over to the School district thinking they will offer him Classroom services , where in which he start attending school and it will give him better therapy .
When the School did an evaluation with Siddarth , They said Siddarth would not qualify for School services and denied services and therapy .
Now I am left with NOTHING . Siddarth started REGRESSING . Everything I had worked from the last 1.5 years was going waste .
I was devastated. I felt I had failed for the first time. I dint know what to do . I dint know the school system . But the one thing I knew and learned from my mom was NEVER GIVE UP !!!!!!
In the meantime Siddarth was home doing nothing . SO I put him into a school program . It was a school with only 5 kids . Thought that he could go and keep himself busy and have fun in a school. But he lasted only a 3 weeks as the teacher said he dint FIT in. That was a very Hard thing for me when he had to be taken out of a school . But I was proud of my child and said to myself ...she as a teacher dint deserve to take care of this GOD sent child and walked away !!!!
Next month , Siddarth was in one of my best friend home for a playdate , after he was dropped off , i saw he came in very quietly . Later when i went to the bed and saw his hand was swollen ..low and behold ...I rushed him into ER and saw he had fractured his right ARM in 2 places . That was the beginning of his STIMMING all over again .
Anil and me dint know what to do . Where we needed to turn to . Thats when we called Anil's mom ( amma ) from India. She came in like an angel into his life. He needed someone else in his life other us . He could sense our stress . But Amma had no clue what was going on . She came in pure hearted with all the love for her grandson. He laughed again :) played with his left hand !!!!
She made him Better....
We were thinking what else we could do to get him out of the house.
Thats when my dear friend Jo , who is a dearest aunt to Sid , advised me to put him into a Home daycare . Where he will feel at home and also will have lesser kids to handle .
Thats the day I prayed . I prayed the most and asked GOD to help me !!!
Thats when I found the most awesome Daycare . Her name was Meena . When I walked into her Home I could feel Sid would be happy here. He smile was welcoming ... she was a happy person , she understod what i wanted for my child. She said I will see for a week, and if it goes well , we will continue. SId stayed there for 7 months . She blossomed him . She brought the best out of him AGAIN. Sometimes God sends angels and He sent one in the form of Meena for me.
In the meantime , I kept trying to for his classroom therapy with the school district. After much help ,I got an appointment with his developmental pediatrician and Got an evaluation done with ASD ( Autism Spectrum Disorder ) through Kaiser.
They Ordered Siddarth to get services through School District . They said he has to be in a classroom setting and everything has to be around speech and language .
I finally got Siddarth into the school In May 2009.
Now He is going only for 2 days a week. I took what a got .
I filed another Case now , with RCEB , for plus 3 services . They kept denying . As Siddarth would not qualify.
After 8 months of mental stress , back and forth emails , phone calls, requests , crying , denials letters , evaluations , etc etc etc ( saving you the headaches hahahahah )
ON AUG 30th 2010 , Siddarth had his evaluation with RCEB and got approved , YES YES YES YES , THANK YOU GOD !!!!!
He got approved for Extra therapy and services . He is now in school Monday - Thursday . He recieves Speech therapy , Group therapy. A bus comes to pick him and drop him. This is a ONE YEAR program.
ALL iz WELL . When you have faith in HIM , He will come through in abundance and make miracles happen !!!! DO the possible by Faith , Trusting HIM to do the Impossible .
June 2011:
----------
Siddarth Got shifted into a different school in September 2010. Hacienda Headstart Program. This was an inclusion program. I was Not comfortable as this was a challenging environment.
But he was blessed with an amazing teacher Miss Karen Sweezey.
She knew how to handle him and his melt downs. She knew when he needed a break and what kind of environment he needed to be in .
She was accessible through email and helped me with his Behavior Tantrums.
Siddarth had amazing ability to hold himself together when he was in Public or School .
But as soon as he got home , he would have the most Painful meltdowns which a mom could handle. Sometimes they started as soon as we sat in the car !!
One day , Miss Karen asked me to video record it , so she could see it and talk about it to him. When she saw it , she could not believe what she saw :)
She said ' Is this the same child I know ' ?
But then she undestood him better .. she understood what was bothering him . She talked to him and Siddarth started to calm down . His tantrums started to lessen .
We had to keep in mind , his speech was still developing and his frustrations were all showing through his Behavior ..
One day while bringing him home .. I was Asking him about his day .. and out of the blue he replies ' I CAN DO ANYTHING WITH GOD BLESS '
i came home and made a poster and put it up in his room . Even to-date he follows this rule.
Siddarth had an amazing speech and Language teacher Miss Lisa Hillman .
She assisted him with his speech and language development .
But during the course of the school year I saw Siddarth being bored . He was a high functioning child and needed to be in an environment where his mind could be challenged.
I met with his teacher and requested if I could observe him during his school hours. I was behind glass doors and sat there for an hour or more .
I was astonished with what I saw .. He was BORED .. He was swinging from one table to another. He was walking around as though he dint belong there.
I thought i was over reacting so went back the next day and it was the same .
SO I called for a IEP meeting and asked if I could pull him out of the school . I requested the speech and language teacher to stay with the program as I was Shifting Siddarth to a Private School .
He was moved into 'GENIUS KIDS ' . I loved it
This meant that all his services from the RCEB ( regional Center ) would STOP .
This was not a good sign for us . Siddarth had shown Significant improvement . He had started showing signs of major Improvements . This was good news to us.
But now that he turned 3 . His services were going to stop and He would be turned into the SCHOOL DISTRICT .
Lets take a break and I am going to give you an Analogy .....
**You have a well running car . You go out of town for maybe 3 - 4 months . The car has not been used . What happens to the battery . It needs to be recharged as it has died on you or sometimes it needs to be replaced. Sometimes it happens with a Well running car too .... battery suddenly dies on you ....
THIS IS WHAT HAPPENED to SIDDARTH .
ALL of a sudden when he turned 3 , on his 3rd birthday in dec 2009 , all his services stopped.
They ahnded him over to the School district thinking they will offer him Classroom services , where in which he start attending school and it will give him better therapy .
When the School did an evaluation with Siddarth , They said Siddarth would not qualify for School services and denied services and therapy .
Now I am left with NOTHING . Siddarth started REGRESSING . Everything I had worked from the last 1.5 years was going waste .
I was devastated. I felt I had failed for the first time. I dint know what to do . I dint know the school system . But the one thing I knew and learned from my mom was NEVER GIVE UP !!!!!!
In the meantime Siddarth was home doing nothing . SO I put him into a school program . It was a school with only 5 kids . Thought that he could go and keep himself busy and have fun in a school. But he lasted only a 3 weeks as the teacher said he dint FIT in. That was a very Hard thing for me when he had to be taken out of a school . But I was proud of my child and said to myself ...she as a teacher dint deserve to take care of this GOD sent child and walked away !!!!
Next month , Siddarth was in one of my best friend home for a playdate , after he was dropped off , i saw he came in very quietly . Later when i went to the bed and saw his hand was swollen ..low and behold ...I rushed him into ER and saw he had fractured his right ARM in 2 places . That was the beginning of his STIMMING all over again .
Anil and me dint know what to do . Where we needed to turn to . Thats when we called Anil's mom ( amma ) from India. She came in like an angel into his life. He needed someone else in his life other us . He could sense our stress . But Amma had no clue what was going on . She came in pure hearted with all the love for her grandson. He laughed again :) played with his left hand !!!!
She made him Better....
We were thinking what else we could do to get him out of the house.
Thats when my dear friend Jo , who is a dearest aunt to Sid , advised me to put him into a Home daycare . Where he will feel at home and also will have lesser kids to handle .
Thats the day I prayed . I prayed the most and asked GOD to help me !!!
Thats when I found the most awesome Daycare . Her name was Meena . When I walked into her Home I could feel Sid would be happy here. He smile was welcoming ... she was a happy person , she understod what i wanted for my child. She said I will see for a week, and if it goes well , we will continue. SId stayed there for 7 months . She blossomed him . She brought the best out of him AGAIN. Sometimes God sends angels and He sent one in the form of Meena for me.
In the meantime , I kept trying to for his classroom therapy with the school district. After much help ,I got an appointment with his developmental pediatrician and Got an evaluation done with ASD ( Autism Spectrum Disorder ) through Kaiser.
They Ordered Siddarth to get services through School District . They said he has to be in a classroom setting and everything has to be around speech and language .
I finally got Siddarth into the school In May 2009.
Now He is going only for 2 days a week. I took what a got .
I filed another Case now , with RCEB , for plus 3 services . They kept denying . As Siddarth would not qualify.
After 8 months of mental stress , back and forth emails , phone calls, requests , crying , denials letters , evaluations , etc etc etc ( saving you the headaches hahahahah )
ON AUG 30th 2010 , Siddarth had his evaluation with RCEB and got approved , YES YES YES YES , THANK YOU GOD !!!!!
He got approved for Extra therapy and services . He is now in school Monday - Thursday . He recieves Speech therapy , Group therapy. A bus comes to pick him and drop him. This is a ONE YEAR program.
ALL iz WELL . When you have faith in HIM , He will come through in abundance and make miracles happen !!!! DO the possible by Faith , Trusting HIM to do the Impossible .
June 2011:
----------
Siddarth Got shifted into a different school in September 2010. Hacienda Headstart Program. This was an inclusion program. I was Not comfortable as this was a challenging environment.
But he was blessed with an amazing teacher Miss Karen Sweezey.
She knew how to handle him and his melt downs. She knew when he needed a break and what kind of environment he needed to be in .
She was accessible through email and helped me with his Behavior Tantrums.
Siddarth had amazing ability to hold himself together when he was in Public or School .
But as soon as he got home , he would have the most Painful meltdowns which a mom could handle. Sometimes they started as soon as we sat in the car !!
One day , Miss Karen asked me to video record it , so she could see it and talk about it to him. When she saw it , she could not believe what she saw :)
She said ' Is this the same child I know ' ?
But then she undestood him better .. she understood what was bothering him . She talked to him and Siddarth started to calm down . His tantrums started to lessen .
We had to keep in mind , his speech was still developing and his frustrations were all showing through his Behavior ..
One day while bringing him home .. I was Asking him about his day .. and out of the blue he replies ' I CAN DO ANYTHING WITH GOD BLESS '
i came home and made a poster and put it up in his room . Even to-date he follows this rule.
Siddarth had an amazing speech and Language teacher Miss Lisa Hillman .
She assisted him with his speech and language development .
But during the course of the school year I saw Siddarth being bored . He was a high functioning child and needed to be in an environment where his mind could be challenged.
I met with his teacher and requested if I could observe him during his school hours. I was behind glass doors and sat there for an hour or more .
I was astonished with what I saw .. He was BORED .. He was swinging from one table to another. He was walking around as though he dint belong there.
I thought i was over reacting so went back the next day and it was the same .
SO I called for a IEP meeting and asked if I could pull him out of the school . I requested the speech and language teacher to stay with the program as I was Shifting Siddarth to a Private School .
He was moved into 'GENIUS KIDS ' . I loved it
