Fatima Shaikh

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Special Human - Usaid

Hi,
 
I am Fatima and I write the following blog , hoping some parent out there may find a ray of HOPE.
 
I am the mother of two boys. The younger one Usaid is a very SPECIAL HUMAN.
 

 

WHEN DID WE COME TO KNOW ABOUT USAID'S DIAGNOSIS?

 

Usaid is my second child . His speech was delayed . I knew something was wrong but the elders in the family told me that it was OK, boys talk late . Even the pediatrician . He was a very quiet child , no demands and happy to be playing with his toys . Would cry when hungry and once fed he would like to be on his own.

My elder one was just 3 and ½ , in preschool and I was paying more attention to him, trying to settle him in school . When Usaid was 3yrs of age I put him in playschool. The teacher told me he doesn't respond to her calls, so I should get his HEARING checked .

If I reduced the TV volume he would go and increase the volume, so he must be hearing, right? I went to an ENT specialist and he said Usaid, didn't have a hearing problem .

That night, at 11 pm I sat and googled on the computer . And there was a huge list of Symptoms of Autism . I had never heard of Autism in my life before this . And my son matched most of the symptoms . I woke up my husband and showed it to him . We cross-checked the symptoms . And then I started crying . My husband didn't know how to console me . I cried the whole night.

Morning, at 7 am I called up my friend whose sister was a pediatrician. She told me that Dr Udani at Hinduja was the best .We landed up at Hinduja that day itself and were told we could see the doc only after appointment . I refused to budge . The receptionist told me I will need to wait till all the appointment-patients got over .

From 11 -4 we sat there . With my son running and jumping all around . We were exhausted .This boy was not able to sit quiet even for a minute literally . He would be running and jumping all around the place .He was so hyper . When we finally got to see the doctor he diagnosed him to be between "borderline of severe and moderate autism" . All in 5 mins  ! I was devastated . 

 

HOW DID WE COPE WITH THE SITUATION..

My husband and I both were in shock. Then denial . My husband went to the extent of tearing up his diagnosis paper saying it was rubbish . I got out of the shock faster than him and decided to start working on my child asap. 

Doctor told us to start  speech and ot.  He picked up speech fast. I later came to know about a parent support group called forum for autism from another pediatrician Dr Vibha Krishnamurthy. From this parent support group I got information of schools. Approached them and got his admission in school . The school provided a good support system. Academics was never an issue but behaviour and sensory issues were huge .

He had problems with transition , changing of class / teachers for different subjects , noise sensitivity , would get upset if teacher erased the black board before he  could  complete his notes . I adopted the 'you advise/suggest what to do' approach with the school authorities which worked. I never got defensive about my child's issues with them . It was always the attitude ' that I know he is a difficult child and I am grateful for your support ' . They were ready to go that extra mile to help . The class children get shuffled every year which used to unsettle my son . New children , new class and new teachers . 

 

DID HE MAKE FRIENDS GROWING UP

I requested the principal to keep one boy who was his buddy with him every year . This boy named DHRUV AGARWAL has been his buddy from grade 3 to grade 10 . Whenever I say his name or see him , I bless him . He has been an angel . He loved and cared for Usaid genuinely and from his heart . I would help him with his notes and projects. 

Over the years he has been able to make friends but does not have a 'best friend ' still . Most of his brother's friends in the society  are his friends too. They hang out together and I am happy with that . He shows the motivation and need to have friends , share with them , go out with them for picnics , parties and movies which is mostly in his brother's shadow .

Recently he went on an overnight camp with his college  friends without his brother and managed on his own independently , sharing the room with 3 more classmates . It was another milestone for us . 

 

WHAT ARE HIS INTERESTS?

His interests are music , art and recently dance.

 

WHEN DID WE FIRST NOTICE?

We noticed his interest in music when he was 5 years old. His music teacher in school told me that he plays the keyboard in class . I was surprised since I had no idea how he picked up . Later I realized, that he would watch the teachers finger movements on the keys of the keyboard and picked up the tunes . I bought a keyboard and started searching for a music teacher . He was rejected by 3 teachers since he didn't want to learn the notations but play only Bollywood songs . I later found this music teacher Dinesh Kumar . He was ready to teach my son his way . He would teach him to play his favourite Bollywood songs and last 10 mins he would teach him the chords . It worked . Usaid has now been playing the keyboard for 12 years and is going to take his Trinity music of London level 3 exams in June this year (2017) . 

https://youtu.be/Rrq0ATd7ph4

 

Music is his favourite stress buster . 

 

Art he would doodle and sketch when he was 4 years old . He was not even speaking then . He used it as a means of communication and I encouraged it .

 

Dance is his recent interest . It was a need to get a accepted and impress his peers in college . He then started enjoying dancing too. It was a win win situation for me . I took it as a good physical activity and stress buster . Made him join the Shiamak Davar Winter Funk which he thoroughly enjoyed . Dancing on the big stage of Shanmukhananda hall in mumbai and seeing Shiamak Davar backstage boosted his confidence and gave him a big high . Checkout this awesome video here ...

https://youtu.be/hSgFeCBTrXQ

 

Recently he participated in Shiamak Davar Funk it up online dance challenge and was selected as one of the winners . He has been called to audition for Shiamak's victory foundation dance group and he is thrilled . I am glad about the opportunity and exposure that he will get . 



https://www.youtube.com/watch?v=_R3rwdnG-5Y&feature=youtu.be

 

HOW DID HE LEARN AND WHAT CHALLENGES DID HE OVERCOME?

He is a visual learner . So I have always used this strength of his in academics , therapies , social skills and every other area . He learnt through pictures , google, YouTube , movies , advertisements, mind maps , flow charts and visual schedules . 

 

HIS ACHIEVEMENTS AND HIS PLANS FOR THE FUTURE.

He has scored a 90% in Xth std exams and is preparing for his xii the std exams now . Marks and grades have never been important to me . We are still confused in which field to go in for depending on his interests ie- music or arts . 

 

WAS THERE ANY MOMENT WHEN IT SEEMED HE WOULD GIVE UP?

When he went to class 5 I hit a road block . Study pressure increased , the teachers were also more performance oriented . He did not want to study . The minute I asked him to study, it would start with a huge meltdown . It then started in school too . Teachers would walk in and out of the classroom every 45 mins . The next teacher would just come and rub out the black board .His notes would be incomplete and it would result in a meltdown . We had got a road block and I was up against a wall . I started reading a lot of books and did some online programs. This helped me get empowered to understand him and better equipped to deal with his behaviour issues and things started turning around for the better . 

I  maintain a journal of his achievements ,even the smallest ones . I call it my Happiness Journal. Whenever I felt  low I would open the journal and go through it and it would boost me up when I realize how far we have come.

 

TO FOLLOW USAID'S YouTube CHANNEL CLICK HERE

https://www.youtube.com/channel/UC3-lng7fS9DrJzLTnr01ZUw

 

THANK YOU

LOTS OF LOVE

FATIMA

Posted in Motivational on May 17 at 11:56 AM

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