My son Vivan has always been a happy and naughty child. Vivan was my first-born child and we moved to Australia when he was nearing 6 months. As new migrants with no family support or friends my husband (Vinod) and I gave all our time in upbringing Vivan until he turned 18 months.
As a family we were very happy and witnessed every bit Vivan accomplished as a newborn child. I witnessed his first turn, crawl, stand, walk, dance to tunes, say his first word -Appa (which means dad) and as a mum I will always envy the fact that Vivan’s first word was not amma- mum. Like all father’s Vinod was an overprotective dad, his world evolved around our son.
As a child Vivan met all his milestone till about 20 months. He picked up more words like Amma, come, run, big bus, train, car, bird, thata (grandpa), Patti (grandma), he could say all colours and shapes. When you ask him what a lion did- Vivan would roar loud, ask about an elephant- he would blow a trumpet, Humm twinkle twinkle little star and play peak-a-boo, he would eat by himself, loved to kick ball, and throw tantrums when he did not get what he wanted.
During March 2016, we noticed that Vivan had changed. He regressed completely, he would not say a word, started avoiding socializing, would play by himself, lost eye contact, would not respond to his name, would always play with train, got obsessed with order, stopped eating by himself from being an independent child he became a quite child and stopped communicating his needs.
I knew what a toddler behaviour was as I grew up among my niece and nephew and decided to meet the General Practitioner (GP) for a review Vivan’s condition and plan next steps. In the Australian medical system, GP is the first point of contact. After what seemed like numerous tests, phone calls to India for second opinion and appointments, we were finally told that Vivan had global development delay. To our surprise, we were told Vivan was too young for any sort of diagnosis.
Vivan was 1.10 years when we got this initial diagnosis. We started to investigate our family history and my mother-in-law Indicated that my husband Vinod was speech delayed and he spoke only when he was 4 years old. This made us believe that Vivan was speech delayed and was hereditary. The GP asked us to get his Fragile X and CGH array test done to check his chromosomes.
To begin with we had access to the GP plan with that we were started speech therapy for Vivan and the rest was a combination of private health insurance and out of pocket. During this time, I was pregnant with my second child, and I could not comprehend Vivan’s initial diagnosis of global development delay and my pregnancy. There was a 3 month wait time to get his Fragile X and CGH done at children’s hospital and the diagnosis was normal.
That was a great relief, and we continued weekly speech therapies for Vivan. We also started Vivan with 2 days of day care we thought it would help him socialize with his age group kids, but he was still by himself always. This is when Vinod and I started realizing that Vivan (2.6 years) was not going to be like any other child and there could be more to his initial diagnosis, this discovery hit us hard both mentally and physically.
