“Something is not right”, I would say this to myself ever since Jai returned from Grandparents place after eight months. He wasn’t even two. But then I would think of the times when he was growing till 14 months and he had absolutely spot on milestones.. eye contact – tick, sitting crawling walking – tick, understanding language and cues – tick, emotional quotient – bang on.
It was cold sunny day, I was sitting in office around noon with that gnawing feeling of something not being okay with Jai; I searched google again and put in words “child not responding” and stated reading articles. Stumbled upon this new word “autism” and clicked on that link. And immediately I realised Jai has this issue. My husband – Chetan, was travelling and my head was spinning while I drove back home. I called up everyone close to me to get an assurance but my mind was well aware that Jai has autism.
Then started multiple rounds of visits to multiple doctors across the country just to get a diagnosis. I went crazy with doctor hopping. I would not listen to anyone except my crazy mind. Doctors prescribed MRI and EEG. We went to Gangaram hospital that day for his MRI and EEG, Jai in our lap was given a medication to sleep. Doctors took him to MRI room and that ordeal went on for around 40 minutes. I don’t know how I survived those 40 min standing outside that room. My tiny first born in that big machine alone. We got the report in the evening, diagnosis: Periventricular Leucoencephalopathy. What is that, I didn’t even have courage to open google and I thought I am going to loose him? I didn’t go in Jai’s room, I lost my energy to see him, hug him. This was first time I saw my husband crying. Next morning onwards paediatric neurologist hopping started and were not satisfied with anyone in Delhi. All our focus from autism diagnosis had been shifted to PVL. There was very little that was on google for PVL that time. We went to Mumbai to meet Paediatric neurologist. I can still feel his aura and very simply and calmly, he assured us that a part of his dead white matter in brain (that’s PVL) has not impacted him much and told us to thank almighty for that. With hope and energy back on track, we came back Delhi.
Autism diagnosis is a grey area initially if the child seems to be on the borderline. Its a whole spectrum from mild to moderate to severe. The diagnosis is not that difficult as the acceptance is. The diagnosis is still easy to accept if it were you but here it’s your child who is being diagnosed and most of the parents would not want anything to happen to their child which is not normal as per rules set by society.
After few months, post multiple visits to therapists, various nail hair blood tests, and multiple visits to various temples and numerous Pooja, emotionally physically and financially drained out eventually I accepted that Jai has autism. But that hope that he will be out of autism lingered on for many years.
I realised few years later, diagnosis is not important, special needs parents shouldn’t put in much energy and effort in diagnosing their child but work towards the lacunae. Everything doesn’t get served on a platter to anyone but we have to continuously work towards creating that desired platter on the table.
