God gave Narane to us on 7th September, 2004. Only about half an hour after his birth, he was being supplemented with oxygen and sugar as both these levels were low on him. For 10 days he was in the ICU where they conducted various tests, all of which did not seem to cause any alarms, and the hospital discharged him to go home on supplemental oxygen. The reasoning given was that Denver, Colorado, USA was a high altitude city and some kids needed extra oxygen and he would outgrow the need eventually.
Three months passed, and he was not meeting his developmental milestones. His pediatrician suggested we follow up with a neurologist who did an MRI, and then sent us for a genetic screening. In April 2005, he was diagnosed with 4p deletion syndrome also known as Wolf-Hirschhorn Syndrome, a rare chromosomal disorder. After follow ups with various specialists, we were left with only one decision – to give the child as much love and therapy as was humanly possible.
The next few years were dedicated in providing Narane, with an intense early intervention program which included physical, speech, occupational and feeding therapies. With some toiling and God’s hand, Narane started to progress. Though physically he was improving, he was considerably lagging behind in hand functions and language and communication skills. In spite of the US society having better empathy for children like Narane and a cleaner infrastructure, I felt we were not pushing him enough. The school system in the US was also not able to provide the right environment for him due to his cognitive delays.
Hence, I moved to Chennai in 2010 pulling along my older daughter and started looking into what was available for him here. By December 2010, I had found my God sent in the name of Zainab Millwala, the person who made my son call me “Amma”. That feeling is irreplaceable and I will be forever grateful to her for that. Narane started seeing Zainab twice a week and started showing phenomenal progress in his expressive and receptive communication skills.
When Narane started going to Zainab he could say only “Bye” and “Ball” and even those two words required prompting and were not spontaneous. We were in India for a period of 3 years and till the last week, we left we kept going to her for Narane’s speech therapy. When we moved back to Atlanta, USA – Narane had an expressive vocabulary of 100 words and a receptive vocabulary of 300 words.
I really like Zainab’s approach towards speech therapy. She understands the child’s needs and his /her limitations and works accordingly with the child. She does not have this “one solution fits all” approach. She thinks out of the box and comes up with ideas and suggestions which may motivate the child to progress with a particular goal. Her goals were oriented towards what the child would need to grow into an adult and live in a society with special needs. Rather than focus only on words that he/she may need to know from an academic or educational standpoint, she moulds the child to learn what’s more appropriate and logical for them to know to have functional independence. Above all, her child loving nature helps any child to warm up to her and show results. My son loved working with her. I also truly believe that she has God’s blessing and divinity within her as she has shown positive results not only with my child but any child that I have referred to her.
I was really heartbroken when I had to move back to Atlanta, USA in September 2013 for personal reasons. We are still in touch and I hope to resume speech therapy once again through Skype for my son shortly with Zainab.