While I was trying all these alternative therapies, somebody suggested us neurological reorganization therapy. It is a movement-based therapy that replicates the entire developmental sequence that infants use to form appropriate brain connections. Developed by Carl Delacato, the Delacato therapy model was used for the treatment of brain injured individuals, and those whose neurological organization in some way had been interrupted. It was very popular in the 60s’, but later on, the American Academy of Paediatrics criticized the treatment method.
Even though I had done some research on this, I still thought I should give it a go and this landed me at Association for Physically Disabled.
http://www.apd-india.org/therapeutic_interventions.html
It is a NGO and does excellent work for poor disabled people and they extend their services even to rural areas through their outreach programmes. I would take Yatish to this centre and they would do exercises, which was called “patterning”, with symmetric movements done rhythmically on both sides of the body. Here again the intentions were good, the execution of the therapy sessions was appalling. Done by trainees who did not have relevant academic background to attempt such a treatment, you were not sure if you were getting the real deal.
But all was not bad. I met an exceptionally resilient boy called Waqas, a 13 year old who was quadriplegic and had developed his own unique method to come to a sitting position. He was studying in the school run by APD. I admired his spirit and will to overcome his disability, in spite of his severe condition. One day I met his mother and she had this smile pasted on her face and was always joking around with the therapists. When I heard her story, I was so affected; it completely changed my thinking and my view about me and my situation.
Waqas had eight brothers and sisters and five of them had some form of disability. One of them was blind, one had polio, one had a heart condition, one was deaf and dumb and then of course Waqas, who had cerebral palsy. To top it all, Waqas’s father had a failed kidney, which meant he was on dialysis. They all stayed in a room which was 10 ftx10ft and the mother and other three children worked to look after the disabled kids and the sick father. In spite of all this, the mother had something to smile and joke about. I was so moved by this story. I remained affected for a long time. Even though Waqas’s mother had reconciled with her situation, I had not reconciled with their situation. It bothered me to no end. Not a day goes by; when I don’t thank God, for giving me education, a supportive family and financial means so I can look after my son and not worry about basic needs. Later when I had the opportunity to meet and counsel parents who had disabled children, I would always tell them Waqas’s story and tell them not to get mired in self pity, but to go out and do something about it, which I learnt from this uneducated woman, whose only goal was to do whatever it takes to look after her family.
Just so that Waqas is always in our memory, Yatish and me have named an exercise after him, in which Yatish comes to kneeling position from prone lying position!!!
This post is dedicated to Waqas and his mother for teaching me one of the most important lessons of my life!
