Voices From The Spectrum – Meet Akshay Bhatnagar Part 1



       Akshay Bhatnagar is a gem on the Autism spectrum. He is truly multi-faceted and immensely talented. His journey is remarkable as it defies many odds and shows the triumph of willpower over obstacles. For the first time  in the history of the Voices from the spectrum series of interviews, there will be a two part interview!

 

Let’s start the first part of the interview by chatting with Akshay’s mom – Pratibha Bhatnagar.

 

Q) Pratibha, please share your Autism journey with our readers …

 As I have been asked to share our struggle to help parents with special children in overcoming their frustration and disappointment, I am trying to do so…….

We are a nuclear family of four persons. Me ,my husband Navneet Bhatnagar, my daughter Jyoti Bhatnagar, she is married now n living in USA with her family and my son Akshay (27).We live in Jaipur, Rajasthan. Akshay was born in  January 1992.

 

 

 

Just after 8-9 months,  we observed that Akshay’s behaviour was quite abnormal. He had tantrum issues, repetitive behaviour, anxiety etc. He did not respond, when we used to call him. Then we approached to pediatric doctors but could not know the actual problem. Then an Audiometric test was conducted just to ensure if he had any hearing problem. Then, a Speech Therapist of that Hospital told us that our son might have Autism. We heard this term AUTISM for the first time. Then it was finally confirmed by a pediatric doctor in 1996 that my son Akshay Bhatnagar is affected by  Autism, we thought it to be the end of the world for us, as we came to know that there is no cure for AUTISM. We were totally  broken and shattered but looking at Akshay, every time gave us immense strength and we took a pledge to give him a respectable life like his normal peers. It was the beginning of our struggle and we were directionless because that time awareness about autism was the least still the situation are more or less same. Akshay had delayed speech, echolalia with severe behavioural and sensory issues.  When Akshay was, 2-3 yrs old he was extremely sensitive to touch, smells and sounds, he did not want to listen any  music at all, there was no cracker in our house on  Diwali. Akshay’s Behavior was very repetitive   and after seeing the strange people, he used to start head banging. Akshay has 7 stitches on his forehead. This was the toughest time of our life. .But the things that he was highly sensitive on the things we did not take away from his life, otherwise he  won’t be able to live a normal life , I gradually started to desensitize him towards the sound,  touch and crowded place and today this wonder boy  dances on loud beats, burns crackers on Diwali, wants to start conversation to unknown people. But it took a long time although still he doesn’t like to be hugged by anyone except me.

 

When we tried to  get admission for Akshay in a mainstream school I visited more than 90% schools of Jaipur but every school denied to give admission to Akshay on the ground that parents would object, he might  beat others etc… then a kind-hearted principal accepted him as a challenge that school was  newly started school named State Bank of India Officer’s Association Public School, Jaipur and the principal was Preeti Sharma who was very gentle and kind hearted lady .This was the fact that nobody in that school had any knowledge what is Autism or how to handle  an autistic student?? but they all did  their best .it was difficult to learn in a class for Akshay because Autism demands 1-2-1 teaching, then I requested Principal Madam to note down his daily  homework and  lesson which was taught him in the class.  Then I tried to teach him all that at my home, although it was a very tough task Because it was very hard for Akshay to sit calmly even for 2 minutes. but gradually due to our determination and planning  things started changing positively– it took almost 2-3 years to get  him adjusted in that school . He had a buddy named Lalit Singhal, who himself  was a child but he always helped and protected Akshay. Akshay became the first autistic student, who appeared  in CBSE boards (2009). That time autism  was not considered in the special need children category to avail some benefits which were being provided to other PWD students. We requested CBSE board to provide these benefits to Akshay.  CBSE called a meeting and it was decided in favour of Akshay. Therefore, it was the door opening step for students affected with autism. Akshay passed out 10th  class in his first attempt but had not been so easy for us..  When  Akshay came in class 10th , he was under Depression  and anxiety .he started talking too much to himself, one day he was so upset that he asked us to put a tape on his mouth  so that he could not talk. We had to approach  for Ayurveda treatment that was SHIRODHARA, which uses  some medicinal oil on head, for it Akshay had to shave his head. It was heartbreaking for we all.   Our children are very sensitive, inspite of severe emotional distress they are doing their best to make a room in this society. It us our duty to support them wholeheartedly.

Akshay  completed his 12th through NIOS. The principal  of  SBIOA school fulfilled her commitment ,and due to his schooling in normal School Akshay improved a lot. I strongly support inclusive education as this is the age when our children learn from imitating others. but that time inclusive education was never heard.

We got a lot of support from many people in our journey

A child who wasn’t even capable of reading or sitting calmly for a couple of minutes , who used to hit his head Is now a Role Model.

 

 

 

 

 

If we work hard in right direction with effective strategy things can be better or vice versa. My 27 yrs. old son has moderate Autism. He struggles with bipolar, anxiety, depression, self talking, false fear, melt downs. But We always focused on his strength, engaged him in constructive n energy consuming activities like dance, cycling, physical exercise, computer, academics, swimming, para sports, shorthand, he is efficient in English and Hindi typing both, when we talk about autism affected people , Akshay  is first to have Graduation degree, NATIONAL and STATE AWARDS winner in ROLE MODEL category( Autism) ,CAVIN KARE ABILITY MASTERY AWARD winner, Gold and Bronze medals winner in state Parasports and …now   FIRST AUTISTIC ADULT in India who successfully got a Government JOB  after cracking  competitive exams….due to these incredible achievements ,he was nominated as BRAND AMBASSADOR by Election Commission of Rajasthan for Recently held  Parliament elections 2019, but it’s  been a long and very tough struggle.. our struggles has been very difficult and painful. I left my government job only to take care properly of Akshay .because of our hardcore efforts I got severe slip disc problem and my husband got heart patient due to stress and anguish,  still daily we face one or another challenge but as all other parents  do we also try to find out d solution…

 

 

 

There was a time when we were so depressed  by thinking he won’t be able to study ever but now the result is in front of us and he has proved himself on every possible aspect we could imagine.

Here I would like to tell you one thing that from Akshay’s class First to graduation studies and even  the competitive exam which Akshay passed and got a government job in it, I have been his only tutor ,because no other tutor could teach him bcoz of his impairment  which demands 1to 1 learning .  Tutoring my self  from his maths teacher  in 10th  class then again deliver that knowledge to Akshay, same I did for his competitive exams. Where Akshay joined coaching centre for Reasoning, Mathematics, General knowledge… Becoz d pattern of competitive exams is absolutely different n speed and strategy matters to crack these exams.. I was the oldest student of that coaching centre this is our life with full of struggle & ups and downs.

I Quite well understand that no couple plans specifically thinking of a special child but if you are one such a parent who has one then what is your next step???

There are two ways :one is of curse the destiny or another one is to get up gear up and fight the adversities to pave a better way of life for our special and gifted kids. The second option is indeed far better but difficult although not at all impossible.

Our positivity, patience and the will power to fight constantly for their betterment will ultimately change their lives forever in a positive way. We should not concentrate merely On Academic aspects rather We can Nurture their interest in music ,dance, sports or anything whatever they like.

Identify their hidden talents and make them capable to give their hundred percent in that direction. Give our best to convert or transform our child’s impairment in his /her special ability and make them gifted rather than disabled. They are so special that they cannot hurt Us, If they see us in distress they get so uncomfortable that’s what differentiate them with normal kids.

Set a goal for them and do whatever it takes to let your kids achieve it. One day we will be proud that we have been gifted with such child. These kids give meaning to our existence and they are the reason why we have Greater feelings of patience , will power , zeal and enthusiasm and  empathy .

When we started our struggling journey with Akshay ,  We were direction less.There was almost no awareness about Autism. I filed a case in Human Rights commission that why our Autistic children are issued disability certificate of MR rather than Autism. After approx.  5 yrs. of this case authorities started issuing Autism disability certificates. We had to struggle a lot for everything including having a disability certificate for him, admission in school and college, reservation in employment, we had to make ways for us all on our own.In 2010 I came to know that there is no reservation for a person with Autism in government jobs. The fact was that private employer doesn’t want to hire autistic or intellectually impaired  job seekers.  I started writing letters to PM, Chief commissioner, commissioner and concerned ministers to  consider Autism in the category of reservation. finally we  filed a case in Rajasthan High Court to provide reservation for autistic candidates in government jobs.  On 28th December,  2016 December the most awaited new RPWD ACT got consent of The honorable President   and 1% reservation is now being provided to autistic and other intellectual impaired persons . But it was not the end of our struggle in spite of enactment of new RPWD Act 2016  my son was fighting for his rights as when he started applying for Govt jobs  there was no column for autistic  candidates to fill up online form for  competitive examination . so we again filed more than 10 petitions in Rajasthan High Court and CAT also to provide him all the benefits in term of 2016 act.  Only after receiving interim orders  from the high court Akshay could appear in competitive exams. 

All the competitive exams  were not less than a mental torture for us as before the order was sought from the High Court, after that for the compliance of the order and then struggling to the Center’s Superintendent. Despite the Rajasthan High Court’s interim order, when Akshay appeared for his first competitive exam  for his government job, we had such a heartbreaking experience that had broken us totally. As Akshay’s Scribe was not allowed to read  out the questions properly, therefore, Akshay could not understand what was being asked and he was failed in his first competitive exam. Akshay  had become totally depressed,  It was due to lack of knowledge  of authorities, what the Autism is and what are its specific requirements ?  This  story of injustice that was done with Akshay was also published in a newspaper. All this was enough to break any person and we also cried very badly. Even in a competitive exam  a centre superintendent had abruptly said “ why your son is  appearing in this exam ??  Why don’t you take a job  order directly from the High court?” this is so insensitive  when we listen such types of comments from anyone for our special  children.  It is bitter truth  that is our whole education system and examination policy   totally caters the need of physically handicapped persons  but  now it should be changed  and we should consider also specific requirements of  Autism  affected persons and intellectually impaired persons also.

Due to this cumbersome process of courts a very sad moment came at one time in our life when my husband had become very disappointed and he had prayed to the God for his  death so that our son was employed on the compensatory ground. But we were not looser, again we gathered strength.

I learnt a lesson from this bad experience and I promised myself that I would not let this happen again with Akshay. We again approached & prayed the Rajasthan High Court  for clear instruction for providing scribe and prompter for autistic  candidates who are appearing in competitive exams and that order was passed,  which has opened the path of other young adults with Autism. Finally Akshay  cracked these exams and got a government job  and he has become the first ever autistic person in India, who got a government job.

 

It has never been easy for us to face all these challenges and barriers. Still there is a long way to go ..our concern is now that what happened after us,we r doing our best to make Akshay independent  but we can’t make him perfect although no one is perfect  in this world . But our ASD children have  very pure soul, they are the only God on this earth. Most of the people make fun and try to humiliate  them.

Our life is full of tears, happiness, ups and downs, but we will do our best for Akshay,  would he get a suitable life partner for him??? . I have no answer but we do have faith in God.

I have trained myself as special educator and psychological counsellor. I have started my NGO “Support Foundation for Autism and Developmental disabilities “I council other parents and guide them. I am working with people across disability  to make them aware of their rights. I am a para Legal volunteer too.

The things have changed a lot, we just have to hold our kids hand and be their pillars of strength on every step they encounter, on every difficulty they face, Gather strength within us , be aware Of special rights and our way will become  easy.never forget that we r the voice of our ASD and IDD children as they can not raise their voice strongly advise as other PWDs do.  See their dreams with open eyes and gear yourselves To achieve them with full strength.

GOD HELP THEM WHO HELPS THEMSELVES.

AKSHAY HAS PROVEN impossible as “I AM POSSIBLE”.

 

 

 

 

As a parent and activist I will always say  never be ashamed of your kids and accept them with all your heart. If Akshay’s struggles and success inspires others, then there can be no better thing than this.

Wishes for all

Pratibha Bhatnagar

                      The second part of the interview will be published tomorrow. Do come back to meet the star of our interview – Akshay. You can read it HERE

 

 

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