Srish’s Journey-Parent’s Perspective
6th December, 2011 – the day my barely 2 year son got an official diagnosis for his autism. After he was labelled with mild autism the world did not seem the same. Our meeting with the one of the top most paediatric neurologists was brief where my child was assessed by his symptoms. The final words as we left his chamber still linger on. I asked the doctor about my child’s future. He could only manage to say – “why do u want to think of that now?” At that time I thought he was blunt but today I understand there could not have been a more appropriate answer.
The return back home was a long one, both distance wise and emotionally. My husband and I could read each other’s minds. We both just wanted our car to meet an accident and die. However, I am glad that nothing of that sort happened and we are alive today to tell our tale after 5 years. The next few days went into a stage of denial. After a few days we were convinced that my son indeed had autism. We did the necessary tests as suggested by the neurologist to rule out any other medical complications.
Thus began our journey. We did not want to lose out on precious time so we started off with therapies which the doctor said was the only way out. We believed and trusted him. He has always given us good and sound advice.
Next, after an appointment was set up with a senior occupational therapist, we were at his therapy centre on 22nd December 2011 to understand what needs to be done next. He gave us a home program for motor skills, concentration and settling him down with a one day visit weekly to his centre. We were worried about my son’s speech as he was not talking (which was the key indicator to his initial diagnosis). So we started speech therapy under guidance of a senior speech language pathologist (once a week at her centre and rest though home program given by her). My son became verbal in 4 months (after I worked like a zombie) and the first word he said was auto. We were all so happy. He started picking up many words. I included special education around the time he was 3. My son had already started going to mainstream school by then. So it was Occupational therapy/Sensory integration, Speech therapy, Special Education and School (phew!! that was a lot for a 3 year old). What kept us going was gradual progress shown by him.
We changed several therapists as my son would stagnate every 6 months. Few challenges I have encountered in the process of therapy 1. No short term or long terms goals given by any therapist 2. No progress report shared to understand the development 3. Very few therapists actually work on giving a solution. Sorry about being blunt here but that has been my personal experience and of many of the parents I know.
In mid 2013 I started a UK based neuro developmental home program where for the first time the neuro therapist shared a detailed evaluation report and progress report every 5 months with specific goals. I had lost hope on therapists here (though I still advocate therapy as the first line of intervention getting good gains from therapy). We even started homeopathy. It took us time to see results from both these intervention methods but finally results started coming.
In 2014 I met a miracle man, a simple occupational therapist. He brought the best out in my son and he was the first person to make me believe that my son could do many, many things (contrary to what many therapists had said earlier). In 1.5 years my son learnt self help skills, appropriate behaviour, partial self engagement skills, and academics including writing, many sports (skating, swimming and cycling) and became much more aware of himself and his surroundings. Behaviour modification also helped my son. Simultaneously we integrated him into society by taking him possibly everywhere – to friend’s and relative’s houses, parks, malls, local market, trains, aeroplane, domestic and international holidays, school, temples, festivals practically everywhere.
By nearly end of 2015 Oct my son had learnt many things and was ready for the next step. Now began our search for the ideal school for him. He was in a mainstream school in Mumbai for 3 years. They were nice but the school lacked the infrastructure for inclusion or integration. We kept a shadow teacher in the last year. It was an interim arrangement but did not seem a permanent solution. We shifted to Gurgaon in the end of 2015 and put Srish in an inclusive environment for nearly than a year. Finally just few days back Srish secured admission in one of the finest inclusive schools. He is settling down and I pray to God this school can bring out the best in him which I have always been yearning for.
My son has cooperated immensely in this entire process willingly and unwillingly. I attribute his progress till date to many therapists, doctors, wonderful parents and teachers but the true credit goes to him. Work is still in progress. I do not know what the future holds for him as he is fairly still small (he is yet to turn 7). However, I am hopeful that someday he will grow up to tell his own unique journey with everyone’s blessings.
I have had my share of grief and sorrows too specially when I used to see my child’s performance going down. As a mother I was breathing, living and eating autism. Nothing else mattered. Slowly I learnt to appreciate my son with his many strengths and opportunities. He was a child, a human being first and autism was a part of him – he was not autism. I learnt to see the positives first before I saw the negatives. It kept me motivated and wanting to do more. Indeed my son has helped me learn parenting and to appreciate small little victories. Our journey of nearly 5 years has been a learning from different books, internet, therapists, parents, workshops, Whatsapp groups, teacher and my own experiential learning through my son on autism and its intervention.
This write up was a small attempt from a mother of a handsome, cheerful and naughty boy to convey that if you move in the right direction you can do a lot for your child. I believe in not giving up till we reach where we want to. With that I wish everyone on this path good luck. Thanks for going through our journey.
Copyright © 2016 Barnana Chakraborti