Get schooled and be damned...

As I said before, Dr. Sharan felt that we should go to his main centre, as the facilities were better there. We also attended a parent’s support group meeting, which the doctor had arranged. After that the Doctor would occasionally refer me other parents, whose kids were to undergo surgery and I would talk to the parents about my own experience and what to expect out of the surgery.

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.

http://www.recoup.in/jcms/index.php?option=com_content&task=view&id=23&Itemid=86

 http://www.rehabcorp.com.au/hydrotherapy/benefits-of-hydrotherapy.html

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.

A ray of hope................

We were going through the net and found this school called Head start School of Montessori and also got to know that along with normal kids they also had a resource room for special kids. We met the Principal, a pleasant lady called Samina Mahmood. She put us on to the Administrator Geeta Nithyanand. They were apprehensive as they had never previously taken in any such child who was so severely involved. All the special children they had, fell into the categories of dyslexia, slow learners or autistic, but none of them with cerebral palsy. It took us three months and countless phone calls and visits before they finally agreed to admit Yatish. They told us that they would take him on a trial basis for two months and if they felt it was not working they would take him off. We were not sure too, as to how it would work. It was just not about going to school but we also had to find a way to make him sit in the school.


http://www.headstartmontessori.com/

We had heard about Mobility India, which made equipments for the disabled. So we fixed an appointment with the Occupational therapist there and got a wooden chair made for Yatish. To say that it was uncomfortable is an understatement. It was made with very basic materials. It had foam, which got really hot and Yatish was absolutely uncomfortable in it. But we had no choice and he had no choice too.

http://www.mobility-india.org/

Yatish was all set to go to school; we also took a house closer to the school, but then the resource room teacher who was in charge of Yatish quit. Again Yatish’s future was uncertain. The administrator told us that they could take in Yatish only if they found a new special educator or else they would not admit Yatish. Between all this we had met Dr. Pratibha Karanth, a Speech Language Pathologist, who runs a programme called Deall for autistic kids. She suggested an Occupational Therapist for Yatish and we met Bhaskaran, who had just started his practice. He is one of the most dedicated therapists I have met. He introduced me to one of his patient’s mother, who happened to be a special educator and she was looking for work. Thus I not only found a school for Yatish, but also a teacher for him.

Yatish started with 45 minutes classes. I would drop him at school and wait outside for him to finish his 45 minutes. This went on for 15 days and slowly increased his time to one hour and then slowly to 3 hours and I would go in between to feed Yatish as the teachers were not sure how to do it or you can say it was not part of their job. Anyways I did not mind it much. I was very happy that he was schooling and seemed to enjoy it. The two month trial period was over and Yatish had settled well and he went on to complete two academic years in this school.

This was one of the happiest periods for Yatish. He loved going to school and was part of most of the activities in school. He also had play dates with other kids and I made few friends as well. In his second year, two young teachers who were twins joined the school and one of the twins Dipti was in charge of Yatish. I have not seen so much commitment in such a young person. She worked with Yatish tirelessly to make his stay in school worthwhile. Yatish was the darling of most of the teachers who were predominantly women because Yatish never missed a chance to compliment them on their dress and jewellery.

The Montessori Method is quite suited for disabled kids. In fact it was developed by Dr. Maria Montessori, based on her research conducted on the disabled children.

http://en.wikipedia.org/wiki/Montessori_method

This whole experience resolved me to make a decision that I would strive to school Yatish in an inclusive environment.