My introduction to the world of Special Needs…

 

When I mentioned my fears regarding Tanaya to a friend, who had a daughter with cerebral palsy, her antennae went up! She said, “Forget what the doctor said. If you have a doubt, do not waste another moment”. She gave me the contact of a physiotherapist who was also trained in Neuro Developmental Therapy (NDT) and was supposed to be very good. So I started taking Tanaya for therapy every evening and it was the most traumatic experience ever!! My complaint was that Tanaya did not cry? Well, now I got a taste of what it was to hear her cry. She would howl her heart out throughout the entire session. It was the most heart wrenching experience for me. There were children of different ages, and different diagnoses, all going through similar painful therapy and crying their hearts out.

The impact of the therapy and the therapists was felt by my entire family. Witnessing the pain of the children and the parents and the attitude of the therapists sent me into a spiral of depression. I started hating the evenings and would dread taking Tanaya for therapy. So, when we met a neurologist who said not to panic, we could wait another couple of months before sounding the alarm bells, I clutched at it like a straw grabbed by a drowning person and stopped the therapy.

It lasted for a whole miserable week.

At nine months of age, after a battery of tests, we had a confirmed diagnosis, Tanaya had Global Developmental Delay.

I still remember that day, it was a Saturday and for some reason there was nobody to accompany me for the doctor’s appointment, everybody was busy. I had the car and driver and we left well in time for our four o’clock appointment. When I reached the hospital I realised that I needed to register at the OPD, fill the form and then pay up at the cash counter. What luck I had asked the young girl who used to help around the house to accompany me. Carrying Tanaya then, was like carrying a dead weight, she could not hold her neck, or herself upright. She did not use her hands at all so she did not hold onto you like babies naturally do. She had to be propped and supported on the lap.

 I left Tanaya on the girl’s lap and completed all the formalities and then we waited and waited and waited in the OPD. We were informed that the doctor was running late. Soon it was Tanaya’s mealtime so we left the hospital, got in the car, and drove to a quiet place and we fed her.

After a wait of four hours, we got to see the doctor. He looked at all of Tanaya’s reports, all of which seemed normal. Then he looked at Tanaya and asked her “Where is the fan”? She, obviously, did not respond. After a wait of four hours we spent less than ten minutes in the doctor’s cabin. The doctor looked at her and said, “She is going to be like this only, she has Global Developmental Delay”.

Then started the physiotherapy, three times a week. But this time I was fortunate to find a therapist who worked only on one child at a time. It was not a battery of junior therapists and one senior therapist, working on a bunch of kids in one small enclosed space. Tanaya would still cry during the therapy but this time it was different. There was a human touch and I actually became friends with Medha Khadye, the therapist.

When Tanaya was nearly two years, we went to the United Kingdom. We combined a holiday and Tanaya’s appointment with a well known pediatric neurologist there, Dr. Nick Caveneigh at the Great Ormond Street Hospital (GOSH). Again, we did some tests there and then met with the good doctor. He gently told us that she would always be slow. It was difficult to say at what pace she would progress and that she would always lag behind the normal curve. There was no medication as there was no disease. Basically, there was no diagnosis (as the tests did not yield anything), but the prognosis was dim.

The only course of action was therapies like physiotherapy and speech therapy. So, there we were, back to square one, with no answers and a whole new, unknown, frightening world of special needs beckoning to us.

Arti Deo

Anat Baniel Method NeuroMovement (ABMNM) Practitioner 

Director, Academy of Learning and Development, school for children with special needs.