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Submitted by PatientsEngage on 14 May 2017

Chitra Iyer, mother of 18-year-old Shravan with autism, feels all her challenges and hardships melt away and every moment of life becomes worth living when a beautiful smile radiates across her son’s face. Here she shares Shravan’s childhood and preparing a life plan for him for the next 20 years.

When Shravan came into our lives we were overjoyed. The fact that he survived the NICU (neonatal intensive care unit) for 26 days and came home with us was itself a huge victory. When he would cry uncontrollably, I would not sleep through the night. I would keep walking and humming to soothe him. I was overly protective about him from day one.

Life changed as I became suddenly so responsible for him that nothing else really mattered. It was all about securing him from any infection, keeping him comfortable and figuring out what to do to help him.

First Smile

His seizures in the early days were so challenging that I had read up every single article and book on them, and questioned his doctors about how to tackle them. We went to the extent of enrolling him for a ketogenic diet (special low-carb, high-fat diet) recommended by his doctor. I actually weaned him off me in one month so we could take the big step to admit him to Hinduja Hospital. Miraculously, the last drug Dr Vrajesh Udani (paediatric neurologist) attempted for him, after trying all possible combinations, worked for him 2 days before we admitted him. We saw his first smile then, after the seizures came under control. That gave us hope to move on to help him finally catch up with his milestones.

Acceptance of Diagnosis

A neighbour paediatrician’s comment that he would never be able to sit, stand, walk or attend school got us cracking at what needs to be done to get him do all of the above. We were shocked initially, numb, felt depressed, but pushed ourselves into action to figure what is best for him. Acceptance of the diagnosis of Cerebral palsy and Autism and steering clear of self-pity and negativity drove us to be positive and acknowledge every milestone, big or small, we set out to achieve for him.

Controlling Cerebral Palsy

I worked at 8 years of continuous physiotherapy and Sensory Integration with 5 repetitions at home the way the therapist taught me to be done by him. Constantly questioning the therapist, reading and coming up with suggestions as to what to do next for him from observing therapies being carried out for other children got me into the role of being a responsible mom for his continued development. He has thankfully escaped the wheelchair due to those days of serious struggle and effort in doing only what was required for him. Thankfully, the cerebral palsy has been managed to some extent. He can walk. The challenge is to make him physically more able and independent. We take him on all our tours around the world, as he loves to go on holidays. However, the autism is still glaring at us.

My adorable Braveheart

Shravan has always been a fighter. His puppy eyes and his gleeful smile have held cheer and happiness despite all the discomfort the therapy would cause him. He believed in me through his childhood days. My respect for him as a baby and as he grew, kept increasing. He had been a braveheart, accepting every challenge coming his way and still smiling through all the struggle he alone had to face, with his body and mind.

My Career by Luck

My career was forgotten, not even thought about. I never felt sad for myself, just happy to be there for him and do all the right things for him. He needed me more than anything in the world. Thanks to him, when I used to wait outside his school reading books, I bumped into my current employer, who turned out to be a wonderful soul encouraging me to join him and work flexible as long as I wish. I have finished 12 years at the same financial planning firm today, all due to a chance meeting because of Shravan.

Building a Financial Corpus

Today, my role is different as a mother of an 18-year-old, still working on his self-help and communication skills, planning his IEP (individualized education program) in school with his teachers and his therapists, thinking of what next in terms of the next 20 years of his life. A big need of a financial corpus for him has been carefully thought of and a plan is in motion already - for after us, along with the necessary ‘Will’ in place, in case something happens to us. A detailed document about him “Shravan’s Life Plan” has been written and shared with all family members to be able to refer to, in case of any untoward eventuality. This, I felt was the biggest responsibility to him as a mother - to document every single thing about him. The next big responsibility is preparing a life plan for the next 20 years. Thanks to some expert guidance from parents of our support group, Forum for Autism, I have embarked on this big project now for him.

My Son, the Happiest Soul

Life seems like a never ending string of challenges and responsibilities to be taken up, but it has been ever so rewarding. Just a look at his face and getting a smile from him has been worth every single moment of my life. Everything seems so petty when we think about his challenges and how he is unaffected by anything. He is the happiest soul we know, he is my God, he has no ego, no demands -- expect for some toe tapping music he wishes to hear all the time.

(Chitra Iyer has been associated with the Forum For Autism, an NGO and a parent support group for children since the year 2002. She is also a Trustee and Treasurer of the Forum for Autism.
She is a Cost Accountant and Certified Financial Planner with 20 years of experience in the Financial Services Sector.)