Changing schools is a difficult choice and one not made lightly. But 20 year old Sahil’s educational journey made him change 7 schools across 2 continents. His mother Harshita Mahajan talks about the marathon of bringing up a child with autism.
School moves across Indian Cities:
Sahil is now 20 years old. He has Autism and is non-verbal. When he was diagnosed at age 2, I immediately quit my job with a bank to care for him full time. With no major help in Mumbai, I took him to London for re-assessment but didn’t get too many answers. I did a lot of research online and found various therapies, dietary interventions, educational options etc. When he turned 3 and a half, I took him to the US for fact-finding since resources in India weren’t too good then. We lived in Mumbai at the time where clinics were over-crowded, therapists were scarce, over-priced and with little to no experience or professionalism. I was very unhappy with the situation in Mumbai. We moved to Delhi and set up a home education program for him. I hired a team of people and tried to put him into a normal play school. Delhi schools were relatively forward in the field of Autism because of the initiative of very active parents. At the play school, teachers were not equipped to manage him and I ended up attending school with him.
He was soon diagnosed with vision issues (bilateral amblyopia or lazy eye) and I took him to Bangalore for treatment. In Bangalore, the Speech, Physical and Occupational therapists were plenty and parents were quite demanding regards treatment results and progress. I found a small school for special kids there with some wonderful teachers. Sahil and I spent about 3 productive years in Bangalore, and returned to Delhi when he was almost 8. Back in Delhi, he started school at a Delhi School that purported to have facilities to include children with autism. I started volunteering at the same school and found that kids would fight frequently and the school had terrible practices and standards. Sahil had also become very violent then.
In desperate need to change schools, I approached Vasant Valley, a prestigious and regular school with high admission criteria. They accepted Sahil after a 2 day probation period and allotted a Special educator for him. Sahil behaved like an angel with his new Educator and surprised us all. He started to learn how to read and write and was doing well. After 2 idyllic years, the school changed his Educator and everything went downhill. Sahil became disruptive, aggressive, and inattentive, spending fewer and fewer hours in school. One fine day, he wrote in his book that he did not want to go to school! I was taken aback by his decision but realized I would have to find another school.
By this time, I was well networked with other parents who had children with autism and transferred Sahil to a Special Needs school at age 9. The new school didn’t work much on teaching academics. It was mostly art and craft activities. Around that time, my husband was offered the opportunity to transfer to Europe, but we refused that and asked for USA instead. I knew America had better opportunities for Sahil.
Finding the right school in America
He was 12 when we moved to Cleveland. Sahil attended a Public school initially but they had insufficient interventions for his needs. We found a Special school and hired a house nearby. Sahil did not settle in this school as they were focused on compliance training which required kids to obey instructions consistently without any exception irrespective of what kind of instructions. Sahil did not adapt to this method and I came across another school which ran on the philosophy of Presumed Intelligence. When I met them, they were thrilled to know about Sahil’s typing skills which he had learned at home on his I-pad. He could play the drums as well! This school was however 60 miles away; my husband and I would take turns driving him. He had an amazing teacher who started him on academic and regular school assessments.
My husband and I were in our 40s by then and moving had not been easy at that age. Leaving behind family, friends, and a stable career for my husband has been difficult. I too missed having a job and being a productive member of society, but we realized we cannot hang on to your comforts at the cost of your child. Lots of sacrifices had to be made to improve quality of life, moving was just one of them. Unfortunately, my husband’s company got sold and he had to hunt for a new job. His new job was not willing to pay $70,000 a year for Sahil’s school. We were able to compel the School District to place Sahil at this school by proving it was the most appropriate educational setting for him. Sahil has continued to be with the same school as he is allowed to stay till age 22.
Strong Academic Inclination
He has shown a great proclivity towards academic pursuits. He just finished a course at the local Community College and is interested in writing, history and science. For his course work, I would project the book the on screen or put on the audio book. He would read it himself and I would also read it to him and also make study notes. I also have a tutor for him because he needs support while writing and typing.
Although his symptoms are in the severe form, his intellect is intact. He has an IQ of well over 130! He is calm and happy when allowed to use his intelligence. There is some controversy as to whether the teacher/parents in such cases are prompting excessively. For instance Applied Behaviour Analysis (ABA) is a common method taught to autistic children. They are trained to learn tasks by breaking them down into simple steps. Lots of kids are not able to move forward and show their knowledge and extent of learning capacity because of fine motor impairments. This causes a lot of frustration for the kids. I say, allow the child to express their likes and dislikes and show their personality and preferences. As a parent, I too had my doubts about Sahil’s abilities, but over the years, I have learned to be observant and not always believe or follow conventional therapies. Every child is different with a wide spectrum of abilities and disabilities.
Functional and Daily Living Challenges:
Functionally, Sahil operates at a very rudimentary level! He can’t bathe or clothe himself but can use the toilet on his own. His fine motor skills are lacking. He uses single words (often garbled) to inform us if he is hungry or wants to go to the toilet, etc. Feeding is a big effort. So simple areas of daily life are very challenging for him; there have been improvements but progress has been slow.
Mentally he suffers from huge anxiety. For example he is unable to go to a public men’s restroom alone, he hates crowds and queues. However, he does go to Rock concerts only because of his love for rock music and drums. He also has OCD like playing with strings, which can get difficult because he will pull anything with a string. He likes tearing and destroying things if he is upset or angry. So we avoid all negative triggers that may upset him and also keep valuables locked up because he has destroyed things of value in the past when angry.
He has improved dramatically over the years even though he is not very independent and does not have any vocational skills. He is working hard at getting a college degree. He does have a lot of problems which cannot be trivialized.
We, as parents were always pragmatic and focused in our pursuit of a suitable school for Sahil. We kept moving him to find better options. I didn’t want to waste time fighting with any school because I had to move on. Sahil cannot be ignored and needed intervention constantly. Each time we moved school, it was a financial loss but we factored it in for his betterment.
Advice to other parents:
My advice to other parents would be to watch and learn; this will help you understand what works for your child. Presume certain level of intelligence but do not generalize it and expect that your child will be capable at the same level in all skills across the board. For example Sahil averaged a 90% in his college class but can’t tie his shoelaces. Be mindful of physiological factors that may be bothering your child such as effects of diet, digestions problems etc.
Don’t listen to naysayers and keep them away! Keep plugging on because it’s a marathon and not a sprint! It does get better with time, so love your child and let them be a child!
