As our association grew, somewhere deep down I felt that I could contribute more and thus I ended up working for the doctor. It did a sea of good to my self confidence as also to Yatish as he was getting better therapy. For the first time, there was an integrated approach to his rehabilitation and all the therapists Physiotherapist, Occupational therapist, Speech therapist and also a special educator worked together. There was also hydrotherapy. In spite of a lot of constraints they tried to provide the best possible rehabilitation.
I was very keen to send Yatish to a normal school. I greatly believe that inclusive education is the best for any disabled child, if given in the right environment especially if the child has no real cognitive challenges. This sent me on a pursuit of finding a school for Yatish, which would take him in, in spite of his physical challenges. I found one very close to my work place. They had a resource room, which had special teachers and Yatish would spend the first half of his school time there and the next half in the normal classroom. I was very happy that I could find a school and there was also the teacher from his previous school who was now a teacher in this new school. It was turning to be a perfect arrangement.
But it turned out that I spoke too soon. To start with we had a very crude wooden chair in the resource room and a baby stroller as a seat in his class room. Yatish had to sit in this arrangement for almost 4 hours and it was taking a toll on his health. The class room had almost 40 children and Yatish was made to sit very close to the black board, and I would often find the chalk powder all over him. Since he cannot close his mouth and tends to inhale through his mouth, he started getting chest congestions.
The class rooms were cramped and I did not receive any help from the school for toileting, feeding or even to just straighten him up in his chair. Thanks to the understanding doctor, I could take a break from work to go to Yatish’s school to feed him in his break time. Even a small request to move Yatish to a room on the ground floor, was met with resistance from school and a long explanation as to why they could not do it. It was more a take it or leave it attitude. You may be wondering why I did not get him out of the school. I had no choice. There was no school, which would take him.
Yatish was up for one more surgery (more on that in my next post). It took up about a month of his school time. He had become really weak. We had to do something about seating, which was turning out to be a huge problem. We started to look out fabricators who could make a customised chair for Yatish. Importing a chair from abroad would almost attract 150% customs duty, which would push the cost of the chair to almost about INR 5 lakhs, which was insane. Even if we got it, it would be just a matter of time, before he would outgrow it.
We finally found a person, who was manufacturing motorised wheel chairs. We thought he would be able to help us and engaged him to design a manual chair for Yatish. After spending time, money and considerable effort, the resultant product turned out be awful looking and highly uncomfortable heavy metal contraption. But it was too late and as Yatish’s school term started, he had to do with it, till we found something better.
